qualitative research methods longitudinal

Value, challenges and practical considerations when designing, conducting and analysing a longitudinal qualitative study in family medicine

Anne-Marie Boylan ,

Aleksandra J Borek .

https://doi.org/ 10.1136/fmch-2021-001283

Qualitative longitudinal design has a long tradition in a variety of social science disciplines and is increasingly used in applied healthcare research, including family medicine. While there are many definitions of longitudinal qualitative research (LQR), its most common characteristics are multiple data collection points and its focus on temporality, which prioritise the study of change and continuity. Thus, LQR can provide insights into the nature, causes and consequences of change (or its absence). In this paper, we discuss the key steps and considerations related to designing and conducting LQR in family medicine and community health. These include (1) deciding on the length of data collection and timing and number of interviews, (2) planning recruitment: attrition versus oversampling, (3) approaching data collection: asking the same or different questions, (4) planning and conducting the analysis and writing up findings, and (5) conducting ethical LQR. We also highlight what LQR can offer family medicine and community health, including (1) allowing exploration of views and experiences of a variety of participants over time; (2) following participants through important transitions; (3) studying implementation of new practices, processes or interventions; (4) exploring the importance of historical change and/or macro context on individuals’ lives; and (5) developing a deeper understanding of phenomena under study. While a lot of attention has been paid to using LQR when studying patients’ and/or carers’ experiences, we highlight its value when studying a variety of actors relevant to family medicine, including healthcare professionals and policy makers.

• Introduction: what is longitudinal qualitative research (LQR)?

The value of qualitative research in applied healthcare research, including primary care, is now widely recognised and well described. 1 2 In recent decades, as the qualitative research field has matured, we have also seen exciting innovations, including the use of more complex designs, such as longitudinal qualitative design. While LQR has a long tradition in a variety of social science disciplines, 3 it is also increasingly used in applied healthcare research, 4 including family medicine.

There are many definitions of LQR in the literature, partially depending on the field in which they are used. Some definitions specify the frequency of data collection 5 ; others focus on duration of data collection, 6 while some promote a more flexible approach, noting that each study is different and may also need a different approach. 7 However, what they all highlight is that the key characteristic of LQR is both multiple data collection points and a focus on temporality, allowing the study of not only change but also continuity to become a priority. 8 9 Focusing on change and continuity can provide insights into the nature, causes and consequences of change. 1 Like quantitative research, LQR can also give us indications of increases, decreases, constancy and idiosyncrasy. 10

There are different ways in which one can conduct LQR. First, LQR can be used as either a stand-alone study or alongside other methods. 1 3 Second, longitudinal design may be planned from the outset of the study when researchers plan in advance to conduct a number of interviews over time, or it may be added in after the first data collection point if the topic or the data seem likely to benefit from subsequent data collection. 11 Finally, unlike in a narrative study where one invites participants to describe their life events in a single interview, one can conduct LQR using a prospective longitudinal design, which involves following the same individuals over a period of time or employing a recurrent cross-sectional design, which involves recruiting different participants at different time points. 1

• LQR and primary care

LQR has been developed and extensively used in social sciences, including anthropology, education and psychology, but it is also a useful, yet so far underused, approach in primary care and family medicine research. While some of the overarching principles and steps of designing the LQR are similar across disciplines, what they mean for each discipline or setting may differ. LQR’s focus on change and continuity lends itself very well to the healthcare context and primary care for numerous reasons. First, as patients often experience both health and primary care services over time, prospective LQR can enable us to follow these experiences, 12 shed more light on why they may change or not, 4 and help identify patients’ changing needs. 13 Second, LQR may be useful when following both individuals (including primary care patients and healthcare professionals (HCPs) and relevant primary care organisations through important transitions to explore how they adjust, make sense of and deal with these transitions. 3 4 Third, LQR can also be used to study the process of implementing new practices in primary care in the context of both clinical trials and routine clinical care, 5 thus highlighting barriers and facilitators to embedding new processes, practices or interventions at different stages. Finally, the individual experiences of change and continuity in family medicine can occur within the broader, historical context, which can also shape these experiences. LQR can help us to understand these relationships. 1

• Steps for designing, conducting and analysing LQR

In this paper, we aimed to (1) introduce LQR to family medicine researchers and clinicians; (2) highlight important steps, considerations, challenges and opportunities related to LQR; and (3) signpost to other literature that may be helpful for those new to LQR. We discuss key steps related to conducting LQR with particular emphasis on applications in family medicine and primary healthcare research. The steps presented are structured around key stages of any qualitative study, including planning and design, recruitment and data collection, and data analysis. We also discuss ethical considerations as cross-cutting these stages. As experienced qualitative researchers in primary care, we draw on wider applied healthcare research when discussing these steps as well as our experience of conducting qualitative research (including longitudinal design) while highlighting papers that have used longitudinal qualitative design in primary care in order to showcase the different approaches and the value of LQR in this particular setting. Table 1 provides more information on selected examples of longitudinal qualitative studies in family medicine and community health research. This is not an exhaustive list; rather, these were chosen by the authors to illustrate the diversity of LQR in primary care, including methodological approaches, aims and samples.

It is important to highlight that the steps and considerations presented in this paper are applicable to ‘experiential’ methodological approaches 14 (such as interpretative phenomenological analysis (IPA), narrative analysis or thematic analysis) which focus on understanding people’s views and experiences rather than discursive approaches (such as discourse analysis and conversation analysis) which are concerned with how language is used to construct a particular version of a reality. In relation to methods of data collection, we focus here on steps relevant to interviews and focus groups as these are one of the most common methods in LQR 15 and in primary care research as they allow exploration of people’s views and experiences.

Step 1: deciding on the length of data collection and timing and number of interviews

When employing LQR, researchers need to decide on three key inter-related aspects: (1) the length of the time needed for data collection, (2) timing and spacing of the interviews, and (3) number of interviews. Neale 1 suggested thinking of the overall length of data collection as the time frame of a qualitative longitudinal study, and of the number, timing and spacing of the interviews as the study tempo . Together, time frame and tempo can be seen as a framework for designing and conducting LQR.

Length of data collection

One of the key considerations when designing LQR is to decide on the overall length of the data collection period. The time frames of published longitudinal studies in primary care vary, as they are (rightly) guided by the study focus and research question. For example, a recent study on experiences of primary care HCPs on implementing remote consultations during the COVID-19 pandemic focused on the first wave of the pandemic and thus collected data over a period of 4 months (April–July 2020)20 (see also table 1 ). However, some topics may not lend themselves to such clear cut-off points. For example, when studying patients’ recovery from a particular treatment or adjustment to a new diagnosis, for example, asthma, it may be difficult for researchers to decide for how long they should follow the participants. Being guided by clinical information (eg, the ‘usual’ recovery time) might be useful for researchers while being mindful that individual trajectories may differ. Also, stopping data collection sooner may not capture some of the aspects of recovery. Finally, researchers may want to consider other factors such as availability of resources and staff.

Timing and spacing of interviews

The timing of the interviews is also crucial, and researchers may want to consider three approaches.

Approach 1: data collection around researcher-led events

One approach to deciding the timing of the interviews may involve researchers trying to define ‘events’ which may act as important time points for data collection. These time points need to be decided in relation to the population and topic under study. When exploring patient experiences of the illness trajectory, the timing of the interviews may be based on the events linked to their journey, which, for example, may involve talking to patients shortly after being diagnosed or after they complete their treatment. 16 17 One may also conduct interviews before and after the event, with the aim of understanding and comparing one’s expectations and experiences. 18 19 For example, Gordon et al studied the process of transition from trainee to trained doctor and conducted interviews with participants before they graduated from their degree (thus studying their expectations of what it means to become a doctor) and after they obtained their degree. 20 Similarly, Lester et al interviewed patients within 6 months of inception into the early intervention service and after being discharged to primary care. 19 Neale 1 suggested that having such clear events can be very helpful for establishing a clear baseline as well as a closure point for a qualitative longitudinal study and urged researchers to think carefully how the beginning and the end of the study will be defined.

Approach 2: data collection around participant-led events

Defining such events may not always be beneficial, and some highlighted the benefits of flexibility in deciding the timing of data collection 1 7 and allowing for conducting interviews around, for example, unexpected events. This may mean that researchers would be guided by the participants, who would advise when they experience any significant events in relation to the phenomena of interest. This approach is known as the mirroring process, 1 where data collection mirrors the events in participants’ lives. Consequently, researchers may be collecting data around events defined in the same way but which may not occur at the same intervals for all participants. 21 However, others also highlighted the drawbacks of this approach, noting that in larger samples, it may be difficult to keep track of all the participants and conduct interviews around the key events. 4

Approach 3: data collection based on pre-established, regular intervals

Deciding on the events may not always be possible. For example, Murray et al 13 highlighted that defining key events in relation to patient experience requires a researcher to have an understanding of a ‘typical’ illness trajectory of a given condition. For certain conditions, these may be less well defined. In such situations, it may be useful to conduct interviews at regular intervals over a period of time to facilitate an in-depth understanding of issues during a particular period rather than around key events. Nissim et al , who studied the experiences of patients with advanced cancer with the focus on the desire for hastened death, largely adopted this approach by interviewing their participants at 2–4 month intervals. 22 However, they also shortened these intervals in a number of scenarios including when participants started new treatments; self-reported measures indicated a change in their physical or psychosocial distress or patients’ condition began deteriorating. The study thus highlights the benefits of a flexible approach, combining data collection at regular intervals with participant-led events.

Number of interviews

The third aspect, the number of the interviews, will be partially framed by the two aspects discussed previously: the length of data collection and timing of the interviews. For example, if a researcher decides to collect data over a 1-year period, the significant events participants experience in their lives will somewhat indicate the number of interviews as well. However, it still leaves researchers scope to decide on the number of interviews. Neale et al 1 23 suggested that one way of viewing LQR may be to see it on a spectrum from intensive to extensive. The most intensive approach may mean that the numerous data collection points can lead to almost blurred boundaries between time points, which have been referred to as a ‘description through time’. 1 23

Regardless of the approach, it is crucial to plan the length of data collection, timing and frequency of the interviews to facilitate the primary aim of the LQR, which is to study change and continuity. 11 Also, these three aspects will need to be guided not only by the research question but also by resources and (existing) expertise within the team. Having multidisciplinary teams can be beneficial as advice from both clinicians and patients 24 on, for example, a typical clinical pathway or illness trajectory can be crucial in deciding on the timing and number of interviews and, ultimately, the success of the study.

Step 2: planning recruitment: attrition versus oversampling

Recruitment and sampling are important aspects of all qualitative research but can be particularly challenging in LQR. One of the key aspects is to decide on sample size, which may have numerous implications.

First, researchers need to strike a fine balance between sampling a sufficient number of participants and oversampling. While it is often recommended that researchers allow for sample attrition by recruiting more participants for the initial interviews than needed, in the studies where retention is high, this may lead to an excessively large sample and dataset. In this case, researchers may have to decide whether they want to follow up all the participants or a subset, taking the implications of that into account. For example, Calman et al described how initial oversampling of their participants (caregivers of cancer patients) led to a decision not to interview some participants at subsequent time points, which created tensions between researchers and participants. 4 Equally, high levels of attrition may lead to bias in the sample and the subsequent study results. 25 For example, Lester et al highlighted that they faced problems in accessing contact details of participants for the follow-up interview 3 years later and thus had relatively high attrition rate (33% of participants took part in the follow-up interview). 19

Second, as in all qualitative research, sample size will influence the depth of the analysis. Smaller samples may allow a more in-depth understanding of individual experiences and lend themselves well to methodologies that value an idiographic approach (eg, phenomenology). For example, Smith conducted interviews with four women as case studies to develop an initial theory of transitions to motherhood. In contrast, larger sample sizes may allow, through their breadth, the identification of patterns and the influence of external factors shaping individuals’ experiences to be recognised. 1 Neale 1 also pointed out that a small number of participants do not necessarily mean a small dataset, given the number of times participants might be interviewed.

Step 3: approaching data collection: asking the same or different questions

One of the key considerations when conducting subsequent interviews in LQR is deciding on what questions will be asked at each time point. Holland et al 3 suggested two approaches: one involves researchers asking the same set of questions at each time point, thus facilitating close mapping of the data at all time points. The second involves anchoring data collection on specific topics of interest which in turn may mean asking the same and/or different questions related to these topics. The reason for this is that some questions will only be relevant at particular time points. This will be especially relevant for researchers conducting interviews around key events, as described earlier. For example, in interviews with patients with limiting illness over 18 months, Worth et al covered the majority of the same topics at all time points (eg, patients’ needs) while also asking some questions only at particular time points (eg, about illness history at interview one only). 26 In contrast, Lester et al used two different topic guides and asked different questions at each time point. 19 Researchers need to consider whether and how participants may be encouraged to discuss change in their lives. Here, we outline three approaches for doing this. One approach may involve providing a participant with a summary of a previous interview at the beginning of each interview. 27 This may be useful in providing a starting point for the subsequent interview and can be an example of member checking, an approach used to enhance trustworthiness of qualitative data. 28 However, care must be taken when preparing such a summary as researchers could inadvertently impose their interpretations of the previous interview, thus distorting the participant’s story and affecting how they approach the subsequent interview. An approach facilitating a dialogue where a researcher summarises the previous interview(s) while inviting participants’ views on it might be more constructive. Such an approach can provide an opportunity for participant reflection and enhance analysis (see step 4). A second approach may involve focusing the summary on more factual events, thus acting as a reminder of when the last interview took place. A third approach may be to encourage participants to reflect on any changes they have witnessed in their lives. Researchers may want to ask participants directly whether they have experienced any changes in their lives, as well as what remained the same, and more importantly, how they feel about it. For example, Lawton et al used this approach when studying the experiences of patients with diabetes transitioning from specialist care to primary care. They encouraged participants to reflect on any changes related to their contact with diabetes services and HCPs since their last interview, as well as their understandings of why their service contact had changed over time. 29

Step 4: planning and conducting the analysis, and writing-up findings

When planning and conducting analysis in LQR, the researchers should consider (1) aims and questions that guide the analysis, (2) which approach to the analysis and writing up is appropriate for the research questions and objectives, and (3) practicalities involved in the analysis.

Aims and questions guiding LQR analysis

As the main aim of LQR is to identify change and continuity over time in phenomena of interest, the analysis needs to focus on exploring and identifying how and why change occurs or not over the study period. The analysis may also aim to identify different types of change. Researchers may want to explore the types of change proposed by Lewis 5 : individual, service, policy and structural; narrative (ie, ‘unfolding of individual stories’); participant’s reinterpretations (ie, ‘rethinking or retelling of experiences described earlier’); and researcher’s reinterpretations (eg, of what the participant described earlier). It is also important to identify when and why change is absent, and what remains stable and consistent and why.

Asking different types of questions of the data can help guide the analysis. Researchers need to relate to the research aims and questions, explore the different types of change and strive for a comprehensive understanding of the dataset, including how the analytical categories and codes relate to each other. For example, Saldaña 7 suggests using three types of questions to facilitate the analytical process: framing questions to capture the context and influences (eg, what contextual and intervening conditions appear to influence and affect participant changes through time?); descriptive questions to capture information to help answer questions (eg, what happens, increases or emerges through time?); and analytical and interpretive questions to integrate the descriptive and framing information (eg, which changes interrelate through time?).

Approaches to analysis

After deciding on research question/aims and the data collection methods, researchers need to select an appropriate analytical approach. They may want to consider two common approaches (or a combination of both) commonly described: (1) recurrent cross-sectional (ie, comparing multiple time points) and (2) trajectory or longitudinal (ie, identifying development or narratives over time). 4 9 12 Using a theoretical approach/framework may help decide on the approach to analysis and presentation of findings 4 ; for example, Murphy et al used the normalisation process theory constructs to structure the coding framework in their longitudinal study of the implementation of remote consultations in primary care during the COVID-19 pandemic.

Recurrent cross-sectional analysis focuses on changes and themes at different time points at the level of the whole sample. 4 9 12 In this approach, each round of data analysis explores a particular moment in time, but it should also aim to capture the temporal aspect and change between time points. Helpful approaches include thematic analysis (especially when the codes used capture aspects of change/stability) and framework-based analysis (eg, charting themes per time points). The strength of the recurrent cross-sectional approach is in that it enables a comparison and identification of patterns across the whole sample and that it often remains grounded in the data. The drawback may be difficulty in capturing individual narratives over time, 9 which in turn may result in a description of each time point rather than an understanding of change. 4

Trajectory or longitudinal analysis focuses on change of individuals or groups to identify trajectories of change over time. 12 It needs to include the same participants at different time points and can be facilitated by developing ‘case’ summaries or narratives that capture the changes and key themes across time for each participant. IPA might be particularly suitable to this approach, and a framework analysis may also be useful to identify the types of trajectories for subgroups of participants. The trajectory approach enables capturing and presenting the temporality of data, but it can be more difficult to capture and present patterns across the sample. With complex LQR datasets, combining cross-sectional and trajectory approaches and multiple types of analysis may be needed to capture the various aspects of the data. 9

Writing up the findings

As writing up the findings can form a part of, or refine, the analysis in qualitative research, it may be helpful to consider the analytical approach together with an approach to presenting the findings. Farr and Nizza 15 identified two common approaches to presenting the findings in longitudinal IPA papers, which may be relevant to other methodologies as well.

In the ‘themes tied to time points’ approach, each theme captures a time point or stage and includes a description of all aspects of the participants’ experiences relevant to that time point. In other words, each theme illustrates the different experiences apparent at each time point that contribute to the overall process of change/transition over time (eg, pre-event and postevent). Therefore, different themes could be identified at different time points. This approach may help present findings from the recurrent cross-sectional analysis . For example, Smith described women’s transitions to motherhood at different time points during pregnancy and after giving birth, with themes such as ‘Early pregnancy: adjustment and uncertainty’. 18

In the ‘themes spanning time’ approach, the findings are presented in one set of themes with each theme describing change over time. It may be that the focus is on a subset of themes to allow for including a more nuanced and in-depth account of change and commonalities and differences between participants. This approach may help present findings from the trajectory/longitudinal analysis and include descriptions of ‘cases’ or groups/types of trajectories. Most studies in primary care presented in table 1 used this approach; for example, Lawton et al captured the changes over time in patients’ perceptions and experiences of transitions from secondary to primary diabetes care within themes, such as ‘Practice-based care: a mixed blessing’. 29

A combined approach is also possible, such as with one theme that is divided into time points and other themes which span time. For example, Murphy et al 30 first summarised the changes over time during the transition to remote consulting and then used theoretical concepts to describe different types of changes. In all approaches it can help to present a single case and then highlight similarities and differences with other participants, label the quotes to indicate the participant and time point, and use paired quotes from the same participant that show change/progression (eg, before and after) 15 (eg, see Lester et al 19 ).

Practical considerations

With LQR analysis, researchers need to carefully think through and plan how to best manage the practical aspects of the analysis. First, this involves data management—LQR often generates large amounts of data over a prolonged period, so thoughtful, consistent and secure data management is critical. Researchers should plan consistent record-keeping (eg, labelling the interviews, researchers involved, recording summaries and reflections) and data anonymisation processes (eg, when and how it should occur) to allow engagement with participants over longer time while protecting their identities. It may help to record other relevant details to inform the analysis and interpretation, especially at later stages and in longer studies. These may include contextual details, such as records of events, changing policies, media stories, etc, which are relevant to the research topic. Agreeing a consistent approach to note-taking and researcher reflexivity can help capture, access and use the researchers’ reflections and reinterpretations over time.

Second, it is important to plan when the analysis takes place (eg, after each interview, sets of interviews, time points, at the end), what tools and strategies are used to manage the process and the amount of data, and who is involved. For example, Lewis 5 describes using different types of analysis at different points: summarising each interview after the interview within a framework organised by key themes (cross-sectional analysis) and developing ‘whole case’ summaries (a narrative analysis) after a number of interviews. Similarly, Thompson and Holland 9 describe a provisional analysis after each interview focused on processual features (eg, structure and absences), substantive content and researcher’s reflections; then after a few interviews writing a ‘summary narrative’ for each location, identifying local themes and ‘case profiles’, and tracing changes and continuities in the individual narratives over time. Summarising and conducting a provisional analysis after each interview can help inform future data collection and make incremental progress with the analysis. Analysing the whole dataset at a later or the end stage of the study may be overwhelming when faced with a large dataset but may also enable more global, holistic meaning-making through an immersive and intense analysis of the whole dataset (rather than small ‘chunks’ of the data). Working with bigger datasets or longer studies often requires a team-based approach with different researchers contributing to different parts of the study and analytical process, which highlights the need for planning and consistency of the aspects discussed previously.

Finally, researchers need to consider the implications of the sampling on analysis and data management. Overly heterogeneous samples add complexity as comparisons could be made not only between participants and time points but also between groups of participants. For example, Calman et al 4 describe the challenges of analysing data from patients with different types of cancer and trying to identify common trajectories. Analysing data from multiple types of health professionals or patients can make it more difficult to identify common trajectories than when focusing the data collection and analysis on a more homogeneous group from the outset. However, the differences between subgroups of participants may only become apparent during data collection and analysis. In this case, the use of frameworks can help with analysing and comparing data between groups of participants.

• Conducting ethical LQR in primary care

LQR is subject to the same ethical concerns and considerations as qualitative research. However, given the immersive and prolonged nature of the approach, there may be more opportunities for ethical complications to arise. LQR has the potential to affect participants and researchers in particular ways that warrant special consideration. Care must be taken to avoid undue intrusion into people’s lives and to minimise the distortion of the experience being researched. 3 7 Some ethical issues may take on a particular salience when LQR is conducted by clinicians-as-researchers in primary care, so it is vital that they understand and plan for how to mitigate these issues.

Issues of confidentiality and consent

Collecting data at multiple time points generates more data, and the amount and depth of data generated means that participants may be more readily identifiable, particularly in research within organisations or with discrete populations such as primary care, where patients may be more identifiable to clinicians than in other settings. Participants must be made aware of this and informed about how researchers will protect their privacy and confidentiality. As such, consent must be seen as an ongoing iterative process, 3 4 with researchers informing participants of changes to the study or new developments as the research progresses to ensure their consent is always informed. Study materials should be clear, easy to follow, and prepared or reviewed by stakeholders, including patient and public involvement (PPI) contributors to ensure that they are sufficiently informative and acceptable to potential participants. They should provide comprehensive information about how the large volume of data will be securely stored and used in the research. Each time data is collected; participants must be informed of their right to withdraw from the study without their healthcare or rights being affected. In some instances, they may also need to be informed that data that have already been published cannot be withdrawn.

Establishing, maintaining and ending research relationships

Rapport building is an important part of any relationship between researchers and participants. Deepening relationships based on trust and familiarity invariably enrich the data and offer opportunities for producing a more complete analysis. 13 In LQR, researchers need to take care to ensure that relationships with participants do not become exploitative 3 and that appropriate boundaries are maintained. Clinician–researchers may find that disclosing their clinical status facilitates rapport-building and interviewing their own patients, with whom they have already established a rapport, may increase research participation, particularly among ‘seldom heard’ groups. 31 However, as patients may feel obliged to take part in research conducted by their clinician, it is important that invitations are made through a third party rather than by the clinician themselves.

There is potential for ‘blurred lines’ between participants and researchers to occur due to increasing familiarity and the repeated interactions that characterise LQR. For instance, Calman et al 4 found that the participants in their LQR study turned to researchers for information or advice about their diagnoses. This may particularly apply in LQR in primary care with clinicians as researchers and highlights the need to have a plan in place to deal with such occurrences. We suggest that primary care researchers can develop and maintain appropriate boundaries with clear information, discussions and reminders of the researchers’ role, and clarity over what they can and cannot offer participants. It is the researcher’s responsibility to ensure that they maintain appropriate professional boundaries and that participants remain safe. They might do this by acknowledging their dual role as clinician and researcher upfront, then explaining that offering medical advice in a research context is inappropriate, so patients should seek advice from their own clinician for any medical issues they face. Conversely, Hoddinott, a general practitioner (GP), suggests clinicians can offer advice, but that they should tell participants to raise their questions at the end of the interview. 31

A common ethical concern for qualitative research relationships is the disparity of power between researchers and participants, with power being presumed to sit with researchers and particularly clinicians-as-researchers. However, Christensen 32 argues that power does not reside with the people but is embedded in the research process and can be negotiated. By its nature, LQR offers multiple opportunities to negotiate power and to minimise its impact on the research participants and process. To that end, researchers should carefully document the impact of relationships on the research and participants. 3 This will provide opportunities to reflect on and address power imbalances, in addition to providing helpful context for understanding the data. Issues of power may not always be a concern—for example, in the case of a GP interviewing GPs. Literature on this suggests that being a GP and having insider knowledge facilitates the research process and enrichens the data. 33 It has been suggested that this is because of a shared knowledge and shared common experience. However, we would caution against presuming that sharing an experience is synonymous with sharing the same perspective. Researchers must set aside their prior assumptions and ask participants to explain what they assume to be shared assumptions. This may also help to overcome subsequent potential biases that might arise in analysis.

Participant attrition in LQR can be associated with power disparities, lack of rapport between researchers and participants, participant characteristics (eg, cognitive decline) or participation fatigue (including because of repetitious questions). As discussed in step 2, attrition needs to be considered when designing the research, and attempts to mitigate its impact should be implemented. 13 Establishing good rapport between researchers and participants may decrease the likelihood of participant attrition. 34 Efforts to do this need also to be considered in the design stage and decisions over whether participants interact with the same or various researchers need to be made. This is particularly important as there is also more chance of researcher attrition, given the length of LQR projects, 4 so teams should consider how to manage relationships with participants in the event of a researcher leaving midway through a project.

Equally, thought needs to be given to ending research relationships in LQR in a way that is satisfying for the participants. This needs to be managed from the outset by giving participants clear information about how many interactions they can expect to have with the research team. It may be appropriate to offer participants an opportunity to debrief at the end of the study to discuss their experience of the research and provide a defined endpoint. 4 This opportunity to debrief may be particularly important if the research has been conducted by a clinician based in the patients’ general practice, where there is potential for them to see each other outside of the research context. In this case, clinician–researchers should discuss the participants’ feelings about seeing them in their general practice and whether it is appropriate to make an appointment with them in future.

Emotional implications for participants and researchers

Consideration about the emotional implications of taking part in LQR is particularly important as the nature of the study design means that participants may be invited to discuss stressful, distressing or sensitive topics repeatedly over a period of time. Ethics committees may be concerned about the impact of asking people to discuss sensitive issues, 35 when discussing their experiences with a researcher may actually be cathartic. 36 In fact, LQR may offer more opportunities for catharsis than those found in other types of qualitative design. Murray et al 13 found that participants wanted to talk about sensitive issues, like death and dying, that they sometimes found it easier to talk to a researcher, and that talking in research settings made it easier for them to discuss these issues with friends and family.

LQR also has emotional implications for researchers 37 —even reading transcripts can provoke an emotional reaction. 38 Prolonged interactions with participants and data, particularly on sensitive or distressing topics, may exacerbate emotional reactions. Equally, researchers working with participants who might die during the course of the study (eg, Nissim et al ’s study on desire for hastened death 22 ) need to have a plan in place to deal with potential feelings of grief and loss. With all these risk factors, researchers may be at increased risk of burnout or ‘researcher saturation’ 39 in LQR, given the sustained nature of their involvement in the research. Researcher saturation may manifest as headaches, anxiety and distress 39 and may be the result of inappropriate management of emotional tension. Those involved in longitudinal studies on sensitive or distressing topics, in which they are repeatedly exposed to traumatic stories, may be most at risk. It is worth remembering that distressing data can affect anyone who interacts with it, including researchers, but also transcriptionists. In designing LQR, researchers have a responsibility to mitigate risk for everyone involved in the study, from participants to junior research assistants to typists.

Parker and O’Reilly 40 propose a framework for managing ethical risk. It involves raising awareness among the research community about the impact of qualitative research on researchers. Although it is not specific to LQR, it certainly is applicable, particularly in primary care, where it may be assumed that the skills associated with qualitative interviewing are similar to clinical interviewing in consultations. 31 It calls for specialist training for researchers to help them appraise, identify and manage risk. It also highlights the importance of transparent risk assessment by institutions and calls for teams to adopt a collaborative approach, ensuring researchers have an established support network and access to confidential spaces for debriefing.

Ethical conduct must be iterative and reflexive

Like all qualitative research, the emergent and iterative nature of LQR studies in primary care means that ethical issues cannot be entirely predicted. Therefore, it is important that researchers approach ethical risk assessment in qualitative research as a reflexive and iterative process. 41 This applies equally to LQR. Teams must have explicit processes in place to increase the chances of ethical concerns being addressed before they have an adverse effect on participants. PPI can ensure that researchers are aware of the scope and range of possible ethical issues that may arise in their research. 42 Reflexivity, the consideration of the impact of the researcher on the researched, 43 is an important practice in all aspects of LQR. Self-awareness and reflection throughout can prevent ethical quandaries from arising and can minimise the researcher’s impact on the research process.

• Contribution to family medicine and community health research

Throughout the previous sections, we have described how LQR could be used to study change and continuity in healthcare, drawing on examples from primary and community care. In this section, we make a further case for how LQR can be a valuable approach in family medicine and community health research. We summarise five potential contributions of LQR and its relevance to these fields.

Exploring views and experiences of a variety of participants over time

Exploring views and experiences of participants over time is one of the most commonly used and suggested uses of LQR, which can be invaluable in family medicine. First, following patients’ and/or carers’ experiences of health and care in primary and community settings can aid in identifying what matters to them over time and in recognising their (changing) needs. 13 Previous studies have explored patients’ and/or carers’ changing experiences of different conditions, including diabetes, 44 chronic obstructive pulmonary disease 45 or heart failure. 46 Second, LQR can be used to study HCPs’ views and experiences within their work context. It can be useful in identifying professionals’ (changing) views, experiences of how they deliver care or the challenges they face. Third, LQR can be used to study experiences of other key actors in family medicine, such as policy makers responsible for designing or commissioning primary care services. 47

Following participants through important transitions

LQR may also be useful when following participants through important transitions and exploring how they adjust, make sense of and manage them. 3 4 For patients, this may mean following them through transitions related to their health and healthcare use, and identifying key barriers and facilitators they face when transitioning through services (eg, see Lester et al and Lawton et al in table 1 ). 19 29 Transitions, such as changing jobs or progressing through career pathways, can also be a useful lens when studying HCPs’ experiences (eg, Gordon et al 20 ).

Studying implementation of new practices, processes or interventions

LQR can also be used to study the process of implementing new practices, processes or interventions alongside clinical trials, as well as in routine clinical care, 5 thus highlighting barriers and facilitators to embedding new processes, practices or interventions at different stages. Qualitative methods are now a well-recognised way of studying implementation of interventions alongside evaluative studies (also known as process evaluation 48 ) and in service evaluations; they can contribute to an understanding of what is implemented and how, how an intervention produces change, and how context can affect implementation and outcomes of an intervention. 48 However, the longitudinal design is still not widely used, including in family medicine. Studies which used it highlighted the benefits of doing so, including more dynamic understandings of key barriers and facilitators to implementation of new processes, 30 and whether and how these barriers and facilitators may be specific to different stages of the project. 49

Exploring the importance of historical change and/or the macro context on individuals’ lives

As highlighted by Holland, 8 LQR can also contribute to studying change at a historic level, and the relationship between micro, meso and macro dimensions can be very helpful when illuminating the relationship between individual experiences and social change. 1 The COVID-19 pandemic can be one example of such historical change, which may be of relevance for studying both patients’ and HCPs’ experiences (eg, studies by Murphy et al 50 or Guzman et al 51 ). These studies can highlight how external events may affect both patients’ and HCPs’ experiences of receiving and delivering care, and how LQR is able to capture participants’ evolving experiences in relation to historical change.

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Methodology

• Longitudinal Study | Definition, Approaches & Examples

Longitudinal Study | Definition, Approaches & Examples

Published on May 8, 2020 by Lauren Thomas . Revised on June 22, 2023.

In a longitudinal study, researchers repeatedly examine the same individuals to detect any changes that might occur over a period of time.

Longitudinal studies are a type of correlational research in which researchers observe and collect data on a number of variables without trying to influence those variables.

While they are most commonly used in medicine, economics, and epidemiology, longitudinal studies can also be found in the other social or medical sciences.

Table of contents

How long is a longitudinal study, longitudinal vs cross-sectional studies, how to perform a longitudinal study, advantages and disadvantages of longitudinal studies, other interesting articles, frequently asked questions about longitudinal studies.

No set amount of time is required for a longitudinal study, so long as the participants are repeatedly observed. They can range from as short as a few weeks to as long as several decades. However, they usually last at least a year, oftentimes several.

One of the longest longitudinal studies, the Harvard Study of Adult Development , has been collecting data on the physical and mental health of a group of Boston men for over 80 years!

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The opposite of a longitudinal study is a cross-sectional study. While longitudinal studies repeatedly observe the same participants over a period of time, cross-sectional studies examine different samples (or a “cross-section”) of the population at one point in time. They can be used to provide a snapshot of a group or society at a specific moment.

Both types of study can prove useful in research. Because cross-sectional studies are shorter and therefore cheaper to carry out, they can be used to discover correlations that can then be investigated in a longitudinal study.

If you want to implement a longitudinal study, you have two choices: collecting your own data or using data already gathered by somebody else.

Using data from other sources

Many governments or research centers carry out longitudinal studies and make the data freely available to the general public. For example, anyone can access data from the 1970 British Cohort Study, which has followed the lives of 17,000 Brits since their births in a single week in 1970, through the UK Data Service website .

These statistics are generally very trustworthy and allow you to investigate changes over a long period of time. However, they are more restrictive than data you collect yourself. To preserve the anonymity of the participants, the data collected is often aggregated so that it can only be analyzed on a regional level. You will also be restricted to whichever variables the original researchers decided to investigate.

If you choose to go this route, you should carefully examine the source of the dataset as well as what data is available to you.

Collecting your own data

If you choose to collect your own data, the way you go about it will be determined by the type of longitudinal study you choose to perform. You can choose to conduct a retrospective or a prospective study.

• In a retrospective study , you collect data on events that have already happened.
• In a prospective study , you choose a group of subjects and follow them over time, collecting data in real time.

Retrospective studies are generally less expensive and take less time than prospective studies, but are more prone to measurement error.

Like any other research design , longitudinal studies have their tradeoffs: they provide a unique set of benefits, but also come with some downsides.

Longitudinal studies allow researchers to follow their subjects in real time. This means you can better establish the real sequence of events, allowing you insight into cause-and-effect relationships.

Longitudinal studies also allow repeated observations of the same individual over time. This means any changes in the outcome variable cannot be attributed to differences between individuals.

Prospective longitudinal studies eliminate the risk of recall bias , or the inability to correctly recall past events.

Disadvantages

Longitudinal studies are time-consuming and often more expensive than other types of studies, so they require significant commitment and resources to be effective.

Since longitudinal studies repeatedly observe subjects over a period of time, any potential insights from the study can take a while to be discovered.

Attrition, which occurs when participants drop out of a study, is common in longitudinal studies and may result in invalid conclusions.

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If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Normal distribution
• Degrees of freedom
• Null hypothesis
• Discourse analysis
• Control groups
• Mixed methods research
• Non-probability sampling
• Quantitative research
• Ecological validity

Research bias

• Rosenthal effect
• Implicit bias
• Cognitive bias
• Selection bias
• Negativity bias
• Status quo bias

Longitudinal studies and cross-sectional studies are two different types of research design . In a cross-sectional study you collect data from a population at a specific point in time; in a longitudinal study you repeatedly collect data from the same sample over an extended period of time.

Longitudinal studies can last anywhere from weeks to decades, although they tend to be at least a year long.

Longitudinal studies are better to establish the correct sequence of events, identify changes over time, and provide insight into cause-and-effect relationships, but they also tend to be more expensive and time-consuming than other types of studies.

The 1970 British Cohort Study , which has collected data on the lives of 17,000 Brits since their births in 1970, is one well-known example of a longitudinal study .

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Mixed Methods Longitudinal Research

• Susanne Vogl Universität Stuttgart

Longitudinal research holds great promise for researching change and continuity. Qualitative and quantitative longitudinal research can be combined within a mixed methods framework, which enables gaining complementary insights that are more nuanced and more valid. However, longitudinal research generally entails more practical challenges than cross-sectional research. Further, combining qualitative and quantitative strategies in mixed methods longitudinal research (MMLR) multiplies these challenges. In this publication, I start by conceptualizing qualitative and quantitative longitudinal research and highlighting their respective strengths and challenges. I subsequently outline design options and implications of mixed methods longitudinal projects. Hereby, I distinguish traditional dimensions of mixed methods and longitudinal research designs, such as time and timing, priority, purpose, sampling, data collection, analysis and interpretation, and reporting. In MMLR these dimensions have an extended time dimension because these design decisions have to be made or revisited in each wave. With this contribution, I aim to advance conceptual thinking in an area of research that is certainly underdeveloped, but has great potential.

Author Biography

Susanne vogl, universität stuttgart.

Susanne VOGL is professor of sociology at the University of Stuttgart with a focus on research methods. Her research agenda is centered on improving existing methods in social sciences and further developing techniques and methods. Based on her aim to contribute to a more inclusive research practice, she develops integrative strategies for data collection and methods of analysis. Professor VOGL's substantive fields of research include the sociology of deviance, children and young people, family, and life course.

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The Methods podcast brings you conversations with leading international experts on a wide range of topics related to research methods. The podcast explores methodological innovations, provides practical tips and discusses new challenges and opportunities. The latest series focuses on qualitative longitudinal and mixed methods research and was recorded as part of the EU-funded YouthLife project. The podcast is produced by the National Centre for Research Methods (NCRM), a UK centre that delivers training and resources on research methods, supporting researchers in the social sciences and beyond.

Laura Bernardi on mixed methods and research questions (NCRM) - Catherine McDonald, Laura Bernardi

In this episode of the Methods podcast, host Catherine McDonald talks to Laura Bernardi, Professor of Demography and Sociology of the Life Course within the LIVES Centre at the University of Lausanne. Laura is also the former Deputy Director of the Swiss National Centre of Competence in Research (LIVES), which studied the effects of the post-industrial economy and society on the development of vulnerability – using a longitudinal and comparative approach. Laura discusses just how mixed mixed-methods can be, how most research questions relating to change and development over time lend themselves well to longitudinal and mixed methods research, and the importance of establishing and retaining professional parameters with study participants. This series of the Methods podcast is produced by the National Centre for Research Methods as part of the EU Horizon2020 funded YouthLife project, and is looking at how researchers can do better longitudinal research on youth transitions. For further information on the YouthLife project, visit www.EUqualimix.ncrm.ac.uk

JD Carpentieri on qualitative research and theory (NCRM) - Catherine McDonald, JD Carpentieri

In this episode of the Methods podcast, host Catherine McDonald talks to JD Carpentieri, Associate Professor of Social Science and Policy in the Department of Education, Practice and Society at University College London, and an Honorary Research Associate at the Centre for Longitudinal Studies. JD talks about how qualitative research can add nuance to theory, which questions he feels are best suited to mixed methods longitudinal research and he shares his top tip on keeping participants on board. He also explains how he likes to try different analytic techniques for different studies. This series of the Methods podcast is produced by the National Centre for Research Methods as part of the EU Horizon2020 funded YouthLife project, and is looking at how researchers can do better longitudinal research on youth transitions. For further information on the YouthLife project, visit www.EUqualimix.ncrm.ac.uk

Laura Camfield on undertaking cross-national mixed methods research (NCRM) - Catherine McDonald, Laura Camfield

In this episode of the Methods podcast, host Catherine McDonald talks to Laura Camfield, Professor of Development Research and Evaluation in the School of International Development at the University of East Anglia. Laura discusses cross-country comparisons, the importance of theory in relation to mixed methods work and gives her advice around what can and can’t be compared. She also talks about the ethical challenges around presenting project work in regard to recognising younger researchers and other members of the team. The series of the Methods podcast is produced by the National Centre for Research Methods as part of the EU Horizon2020 funded YouthLife project, and is looking at how researchers can do better longitudinal research on youth transitions. For further information on the YouthLife project, visit www.EUqualimix.ncrm.ac.uk

Dan Woodman on mixed and qualitative longitudinal approaches (NCRM) - Catherine McDonald, Dan Woodman

In this episode of the Methods podcast, host Catherine McDonald talks to Dan Woodman, Associate Professor of Sociology at the School of Social and Political Sciences at the University of Melbourne. Dan is an internationally recognised authority on conceptualising generational change and the social conditions impacting our young adults. Dan discusses explains what drew him to his area of study, why iterative models are so important in longitudinal research and how reciprocity can help reduce attrition. He also talks about his approach to writing and being wary of allowing the data to simply say what you want it to say. This series of the Methods podcast is produced by the National Centre for Research Methods as part of the EU Horizon2020 funded YouthLife project, and is looking at how researchers can do better longitudinal research on youth transitions. For further information on the YouthLife project, visit www.EUqualimix.ncrm.ac.uk.

Jane Gray on researching social change over time (NCRM) - Catherine McDonald, Jane Gray

In this episode of the Methods podcast, host Catherine McDonald talk to Jane Gray, Professor of Sociology at the Social Sciences Institute at Maynooth University in Ireland. Jane is the programme leader for the Irish Qualitative Data Archive and played a key role in the development of the Digital Repository of Ireland and her research looks at families, households and social change. Jane discusses her passion for looking at how individual lives intersect with macro social change and what patterns can be found within that, the range of different approaches she adopts when it comes to analysis and the importance of knowing your audience when it comes to the writing up of your research. The Methods podcast is produced by the National Centre for Research Methods as part of the EU Horizon2020 funded YouthLife project, and is looking at how researchers can do better longitudinal research on youth transitions. For further information on the YouthLife project, visit www.EUqualimix.ncrm.ac.uk

Johnny Saldaña on qualitative longitudinal research (NCRM) - Catherine McDonald, Johnny Saldaña

In this episode of the Methods podcast, host Catherine McDonald talks to Johnny Saldaña, Professor Emeritus at Arizona State University’s School of Film, Dance and Theatre, and a leading authority on qualitative and qualitative longitudinal methods. Johnny discusses his research methodology model and shares advice his advice on research questions, analytical approaches and writing. He also shares his experience of an ethical dilemma he faced and tells us what his key bit of advice would be to his younger self. This series of the Methods podcast is produced by the National Centre for Research Methods as part of the EU Horizon2020 funded YouthLife project, and is looking at how researchers can do better longitudinal research on youth transitions. Content warning: This episode includes a reference to suicide. If you have been affected by any of the issues raised in this episode, you can call Samaritans for free on 116 123, email them at [email protected], or visit www.samaritans.org to find your nearest branch. For further information on the YouthLife project, visit www.EUqualimix.ncrm.ac.uk

Making space for Big Qual: new ideas in research methods and teaching (NCRM) - Lynn Jamieson and Sarah Lewthwaite

In a special mini-series of our podcast, we discuss the secondary analysis of large-scale qualitative data as a new research method. Here Lynn Jamieson from the University of Edinburgh and Sarah Lewthwaite from the University of Southampton reflect on the method’s development and potential use in the teaching of research methods.

Teaching Big Qual: benefits and challenges for students and teachers (NCRM) - Ros Edwards and Sarah Lewthwaite

In a special mini-series of our podcast, we discuss the secondary analysis of large-scale qualitative data as a new research method. Here Ros Edwards and Sarah Lewthwaite from the University of Southampton talk about how the method might benefit and challenge teachers and students of research methods.

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Methodological developments in qualitative longitudinal research: the advantages and challenges of regular telephone contact with participants in a qualitative longitudinal interview study

Emma carduff.

Primary Palliative Care Research Group, Centre for Population Health Sciences, The Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK

Marie Curie, Fairmile, Frogston Road West, Edinburgh, EH10 7DR, UK

Scott A Murray

Marilyn kendall.

Qualitative longitudinal research is an evolving methodology, particularly within health care research. It facilitates a nuanced understanding of how phenomena change over time and is ripe for innovative approaches. However, methodological reflections which are tailored to health care research are scarce. This article provides a synthesised and practical account of the advantages and challenges of maintaining regular telephone contact between interviews with participants in a qualitative longitudinal study.

Participants with metastatic colorectal cancer were interviewed at 3 time points over the course of a year. Half the group also received monthly telephone calls to explore the added value and the feasibility of capturing change as close to when it was occurring as possible.

The data gathered from the telephone calls added context to the participants’ overall narrative and informed subsequent interviews. The telephone calls meant we were able to capture change close to when it happened and there was a more evolved, and involved, relationship between the researcher and the participants who were called on a monthly basis. However, ethical challenges were amplified, boundaries of the participant/researcher relationship questioned, and there was the added analytical burden.

Conclusions

The telephone calls facilitated a more nuanced understanding of the illness experience to emerge, when compared with the interview only group. The findings suggest that intensive telephone contact may be justified if retention is an issue, when the phenomena being studied is unpredictable and when participants feel disempowered or lack control. These are potential issues for research involving participants with long-term illness.

Qualitative longitudinal research has an established role in social science disciplines such as anthropology, criminology, education, psychology, social policy, and sociology. Contemporary qualitative longitudinal research is driven by a desire to understand what change happens, but also how and why it happens, in the socio-cultural context [ 1 ]. It also captures the interplay between time, and the cultural dimensions of social life, thus depicting time as non-linear [ 2 ]. One of the major advantages of qualitative longitudinal research is the nuanced understanding of phenomena which evolves through time. This is particularly relevant for understanding the experience of illness.

One key facet of qualitative longitudinal data generation is that it is iterative, drawing on what was learnt previously to understand what has changed to tell a story over time [ 3 ]. Qualitative longitudinal studies are complex, and there are many variables in terms of study design, including the length. Saldana argued that length is dependent on context, theoretical paradigm and discipline [ 4 ]. So too is the question of when to generate data throughout the longitudinal study, although our review of the literature showed that this is rarely discussed.

Longitudinal research is about exploring change, but what changes occur (if any) are dependant on the context of the study. Lewis highlights the multi-faceted nature of change that can be exposed through analysing qualitative longitudinal data in evaluation research: 1) Narrative change shows how individual stories change over time, 2) Change in the context of time, when a story is retold and re-interpreted by the participant at later interviews, 3) Change that is evoked as the researcher sees the participant more clearly over time, 4) In some cases there will be no change [ 5 ]. The qualitative longitudinal researcher should confront their preconceptions about change and let a definition of change (if there is one) emerge [ 4 - 6 ].

The potential benefits of a qualitative longitudinal approach for exploring the needs of people with progressive diseases have been highlighted in response to the complex, temporal changes that these people experience [ 7 - 9 ]. Qualitative longitudinal research in health care has increased in popularity over recent years [ 10 - 15 ], yet there are still relatively few studies when compared to one-off qualitative studies. Possible reasons for this include: financial constraints from funders who privilege quantitative methods more than qualitative, concerns about recruiting people suffering long-term illness to longitudinal studies [ 8 ], and the epistemological difference between the social sciences and medicine [ 16 ], insomuch as health care research remains a predominantly positivist discipline, where randomised control trials and cohort studies are considered to be the gold standard. When compared with social science journals, the short word limits in many health care journals might prevent qualitative longitudinal researchers adequately detailing and reflecting on their methods and the complex issues that they might face. Nevertheless, there is growing recognition of the need for methodological literature which is tailored to the complexities of conducting qualitative longitudinal health care research [ 1 , 10 ].

This paper aims to expand the methodological discussion of qualitative longitudinal research. We provide a synthesised and practical account of the benefits and challenges of telephoning participants between face to face interviews in a qualitative longitudinal study. This paper extends from a study which was designed to explore the overall potential of qualitative longitudinal methods for understanding the experience of metastatic colorectal cancer.

We adopted a qualitative longitudinal design using interviews and telephone calls with participants with metastatic colorectal cancer to generate data over the course of 1 year. The design involved 2 groups of participants; in group 1 (6 monthly group), interviews were conducted at regular intervals of 6 months and no other contact was made between the waves of data generation (number of participants = 8). We decided on 6 monthly intervals for 1 year considering the average prognosis of our participants [ 17 ]. This decision was guided by advice from specialist colorectal cancer physicians and previous end-of-life qualitative longitudinal studies which involved patients with similar prognoses. In group 2 (flexible interval group), interviews were supplemented by monthly telephone calls (number of participants = 8).

Recruitment

Participants with metastatic colorectal cancer (Dukes stage D) were recruited from the outpatient clinic of a national cancer centre in Scotland and were randomly assigned to each group. Ethical approval was granted by the South East Scotland Research Ethics Committee. The study was introduced to participants at the time of their consultation with the physician. If they were willing, the researcher (EC) explained the study, gave them a participant information sheet and agreed to telephone them a few days later to discuss the study. Written informed consent for participation in the study was obtained from participants prior to the first face to face interview. Verbal informed consent was obtained prior to each subsequent interview.

Data collection

This study adopted a narrative approach to interviewing and analysis. Narratives are commonplace in medicine and there is increasing awareness that those with illness tell stories; to their doctor, their family, their friends, and in this way they recapitulate events [ 18 - 20 ]. It has been argued that people make sense of their illness through narratives [ 21 ] and that studying them can transform stories of individual experience of illness to a social phenomenon [ 22 ]. We hypothesised that those with advanced colorectal cancer would have a story to tell and that narrative methods would encourage participants to share their accounts. The researcher (EC) commenced each interview by asking the participant to describe what had happened to them, meaning they could start their story where they wanted. All interviews were audio-recorded and transcribed by a paid transcriber, and then checked by the researcher. Each participant was assigned a pseudonym.

Telephone conversations are commonly used as a mode of social interaction and are not socially or age exclusive [ 23 ]. We conducted telephone calls with each of the 8 participants in the flexible group on a monthly basis. Although participants had the researcher’s contact details on the information sheet they had received, we did not encourage them to call, and received no telephone calls over the course of the study. The telephone calls to the participants were not digitally audio-recorded, because we hoped that the informality of the telephone conversations, in comparison to the face to face interviews, would allow the relationship between the researcher and the participants to flourish [ 23 ]. Instead, detailed field notes were written immediately after the telephone calls [ 24 ]. The participants were aware that the telephone calls would be used as data for the study.

During the calls, participants were asked to consider how their situation had changed. If there had been a significant change, they were invited to meet for an interview before the default 6 month interval. If no change was identified, we met again no more than 6 months after the previous interview to a maximum of 3 interviews. We used Thomson et al’s definition of critical moment - an event described in an interview which either the researcher or interviewee thinks will effect lives or identities [ 25 ]. We adopted this definition because we thought it was broad enough to capture change in all 4 domains of the illness experience; physical, psychological, social and spiritual [ 25 ].

We used a narrative analysis using the Voice Centred Relational Method (VCRM) [ 26 ]. Other methods of narrative analysis are more prescriptive, and some have been criticised for fragmenting and decontextualizing narratives [ 20 , 27 , 28 ]. VCRM is an inclusive method, which focuses on what is said by participants but also what is unsaid through 4 different readings of each interview transcript.

• Reading 1a is for overall plot; what story is the participant telling? Who are the characters? What events which unfold over the course of the story?
• Reading 1b invites the researcher to share thoughts and feelings about the interview.
• Reading 2 focuses on the active voice of the participants, and how they used pronouns throughout the narrative.
• Reading 3 explores the participants’ relationships and how they spoke and saw themselves in relation to others.
• Reading 4 is about context, and the wider social and cultural frameworks in which the stories are told and heard [ 26 ].

One of the advantages of qualitative longitudinal research is the multiple opportunities that it presents in terms of analysis. The data were analysed; for each individual at each time point, as patient groups at each time point, and longitudinally, where individual cases were examined over time.

Tables  1 and ​ and2 2 show the demographics of groups 1 and 2, respectively. The sample comprised of 10 men and 6 women, with a median age of 64 years (range 48 to 80 years). The sample size allowed the researcher to maintain engagement with the vast amount of data. The median time from diagnosis of the metastases to recruitment into the study was 9 months (range 2 to 18 months). All the participants had been told that the cancer could not be cured prior to recruitment. Some were receiving palliative treatment, others were not. Eight of the patients identified a family member who was considered to have a caring role and they too were recruited to the study.

Characteristics and number of interviews for participants in group 1 (6 monthly group)

Characteristics, number of interviews and number of telephone calls for participants in group 2 (flexible interval group)

Table  3 shows the number of interviews conducted at each time point and the total number of telephone interviews. Thirty-six interviews were conducted in total, each lasting between 30 minutes and 120 minutes. Generally, the interviews became shorter as the study progressed. Two participants requested that the interviews be conducted at the hospital. The telephone calls totalled 46 by the end of the study and ranged in length from just a few minutes to approximately 40 minutes. All attrition resulted from death.

Number of interviews conducted at each time point for patients and total number of telephone interviews

The results are supported by excerpts from the researcher’s (EC) field notes, the monthly telephone calls and in some instances quotes from the face to face interviews.

Advantages of monthly telephone calls

Contextualising the narrative.

The data gathered from the telephone calls added contextual information to the accounts of illness. We gained a real-time impression of how the illness progressed, and were able to map those ‘ups and downs’, which the participants in this study described as characteristic of the experience of advanced cancer. The longitudinal analysis explored how the contextual aspects of the illness stories changed over time. For example, Deirdre ceased discussing her friends or talking about social outings during our telephone calls. She did not seem to be socialising much at all; an activity she had previously enjoyed. At the subsequent face to face interview, Deirdre told the researcher that she had not seen her friends for some time. Another participant, Fred, explained that he and his wife had decided to take a day trip for some respite. This was something they had enjoyed before the illness and describing it enabled us to understand how he was striving to maintain some aspects of his pre-illness lifestyle. John mentioned he had given up his much-loved hobby during the third telephone call; a longstanding pastime that he had enjoyed for decades. We asked John to reflect on his feelings about this at interview 2 and whether it had affected his quality of life. In this way, the contextual data from the telephone calls also informed subsequent interviews.

Capturing change as it happened

The telephone conversations gave participants the opportunity to consider critical events or junctures in the illness trajectory that were significant to them. For example, during the fourth telephone call, Deirdre mentioned that she would discontinue chemotherapy if she suffered the same hideous side effects that had resulted in an earlier hospitalisation. At the time, we were unsure of the significance of her telling this within her overall narrative, but were given the opportunity to explore the issue further at a face to face interview a month later. During the longitudinal analysis of Deirdre’s case study, we identified that her thoughts about discontinuing treatment signified her strive to ensure that the responsibility for making decisions about her care remained her own. Although we originally thought that this signified her desire to maintain autonomy, the longitudinal analysis showed that it was actually about her family. Deirdre did not want them to be distressed by the decisions they felt they had to make on her behalf, as the quote below illustrates.

“I says ‘I don’t want [husband] or [daughter] and [son] to have to make the decision to pull my plug’. I’m saying now that if it’s a no-go thing, then just do it.” (Deirdre, interview 2)

Using data from the telephone calls informed the topic guide for subsequent interviews and enabled us to track the process of change that participants described.

John described how he had asked his doctor about his prognosis at telephone call 2. We considered this to be a critical moment as he not asked before, and as a result, John started to plan the remaining time he had. Below is an excerpt from the researcher’s field notes which were written immediately after the second telephone call with him. John had not asked about his prognosis at interview 1. Indeed Mary, John’s sister, who was also recruited to the study, confided to the researcher that John had thought he must have at least a year to live because he had been invited to participate in this longitudinal study. This suggests he had previously considered his prognosis which supported the notion that John asking about it at month 2 was significant.

John has had what he described as a strange week. He watched a film about 2 men, both with cancer, who met in hospital and decided to write a list of things they wanted to do before they died. John found the movie really poignant, and for him it was the impetus to ask about his prognosis when he went to clinic yesterday. Both Mary (John’s sister) and John had told me that they hadn’t yet inquired about this let alone talk about the future and what may happen. I think he had been building up to this for some time and the film was the catalyst. So he asked the doctor yesterday about how long he had left and was told it would probably be months, rather than years, but could even be 12 – 24 months. I asked him how he felt about this and he responded that he really didn’t have any idea how long it would be, so in a way it was a relief to know. Knowing this information also made him think about the things he wants to do before his death. (Field notes, telephone call 2 with John)

We were surprised that this was not raised again by John at his second face to face interview. Perhaps he wanted to forget about it; intent on thinking positive, rather than how much time he had left. Or, perhaps the use of the telephone offered him a degree of anonymity when compared with a face to face interview.

The telephone calls often enabled us to identify significant events or changes, but not always. We spoke with Fred every month and usually his wife Jane was at work. Unfortunately, we were unable to meet with Fred for a second interview because he died suddenly after suffering a fall. His wife Jane informed us that Fred had brain metastases, in addition to lung metastases; something which Fred had never mentioned.

Relationship and reciprocity

The relationship between the researcher and participants in the flexible group evolved in parallel with the telephone calls. Participants in the flexible group often divulged a private account of their experience more readily than those in the routine group – as compared to the public and well-rehearsed cancer story that defined the beginning of the interview. For example, we spoke with Faye every month between interviews 1 and 2. We shared lengthy chats where she told the researcher about her family and friends, in addition to her worries about cancer. At the second face to face interview with Faye she immediately told the researcher that she felt she now had a death sentence.

“I actually feel now, and I never felt it before, I’ve got a death-sentence now.” (Faye, interview 2)

This change could be because she felt more comfortable in the presence of the researcher. This is not to say that those in the 6 monthly interview group did not produce private accounts, rather they told the cancer story before sharing their private accounts, as if first setting the scene.

Although we gained contextual information and sometimes captured real time transitions in the lives of participants in the flexible group, this could have been the result of reasons other than the increased contact and more evolved relationship. For example, some participants were more talkative, particularly the female participants.

Challenges of the flexible approach to interviewing

Balancing ethical integrity and research integrity.

This study also explored the feasibility and added value of conducting interviews as close as possible to when change was occurring, but this only happened on two occasions. Eve was told just 2 months after the first interview that she would require a course of the more aggressive chemotherapy and that she had been referred to the hospice for pain control. We were keen to capture this transition to hospice care so we met for an interview. Eve deteriorated quickly after the initial interview, and died quickly after the second interview. Similarly, Faye told the researcher that she had been given a few weeks to live at month 9 of the study and so we invited her to an interview then. Capturing change in real time was challenging because change in the social, psychological and spiritual domains was subtle, and often obvious in retrospect, when we conducted the longitudinal analysis of the individual cases. In contrast, Eve and Faye experienced physical changes and their deterioration was evident.

However, during the study there were times when we felt that conducting a face to face interview was not appropriate, even if there had been a significant change in circumstances. For example, during the penultimate telephone call with Deirdre, she described that the health care team had decided to discontinue treatment. Deirdre was aware that her life was approaching the end and accordingly we respected Deirdre’s priority to be with her family. Needless to say, the same ethical considerations were given to those in the 6 monthly interval group. For example, the third interview with Cath was an informal chat rather than a recorded interview because she was in the hospice and was frail, weak and close to death.

We propose that all the participants would have willingly participated in an interview had they been asked, and it could be argued that deciding not to interview was disempowering them. Given the good relationship that had evolved over the course of the study, perhaps we should have been able to ask them about participating in an interview in such a way that would have allowed them to say no. However, we were concerned that doing so would have threatened the research relationship and ethical integrity of the study. In the cases of Eve and Faye, it could be argued that hastening the interviews in light of their deteriorating condition was unethical, but denying them a voice would have been also. We wanted all the participants to remain autonomous for as long as they could and verbal consent was taken prior to every subsequent interview.

The unpredictability of research

South East Scotland Research Ethics Committee had asked us to check the status (alive or deceased) of the participants before making any telephone calls, which we adhered to. However, we were faced with 2 challenging incidents involving the family members of participants from the flexible interval group. First, Fred usually answered the telephone because it was beside his chair in the living room so we were alerted that something was wrong when Jane, his wife answered the telephone. She tearfully explained that Fred had died, peacefully, just days earlier and described the circumstances of his death. Indeed, she had been looking for the researcher’s details so she could call and inform us about what had happened. A similar situation occurred a short while later with Eve’s daughter. These incidents were unique to the flexible group and were a direct result of the increased contact. They highlight the complexity and unpredictability of researching the experiences of people with serious illness, where circumstances change quickly. The outcome of these telephone calls was because of unfortunate timing, and they happened because of limitations in information sharing between health systems.

Blurred boundaries

The telephone conversations with participants were often long and profound. Over time, the boundaries of the researcher’s role in maintaining relationships became blurred. This issue was exaggerated in the flexible interval group, which could reflect the more evolved, and involved relationship with the participants. Although the researcher anticipated her role in the project, the same due consideration had not been given to how the participants would perceive the researcher - nurse, confidante, shoulder to cry on - and how this would change as the relationship strengthened and their condition deteriorated. For example, the researcher was asked to comment on the participants’ clinical care. This became more prevalent as the study progressed and the relationship evolved. Although this could be viewed as a positive outcome of the flexible approach and telephone calls, for example a sign of trust; it presented us with a challenge. These were questions that research professionals are not permitted to answer. This was complicated further as the researcher in this study was a nurse and therefore had a basic understanding of participants’ concerns. When such situations occurred we suggested that the participants discuss their concerns with the specialist nurses at the recruiting centre.

In this paper we have presented a practical account of conducting monthly telephone calls in addition to face to face interviews in a qualitative longitudinal study with people towards the end of life. There is currently a dearth of methodological literature relating to qualitative longitudinal methods for health care research and so this article adds to the small, but expanding debate. Qualitative longitudinal research can provide rich insights into the dynamic experience of illness, but as yet it has still to be used to its full potential by health care researchers.

Proponents of qualitative longitudinal research advocate that a responsive approach should be used at all stages in the research process because we do not know what or when change will emerge [ 1 , 4 ]. Understanding change over time is the key tenet of qualitative longitudinal research. The telephone calls allowed us to capture processes, and nuances, that might have otherwise been overlooked, or their significance underestimated, when they were being described retrospectively. This supports Pettigrew’s definition of qualitative longitudinal research, which describes the process of chang ing as opposed to change as a one off event [ 6 ]. Likewise, Taylor found that the phone calls allowed events to be seen in real time, which could then be discussed at subsequent interviews [ 29 ]. We also found that a strength of regular telephone calls was that they informed subsequent interviews, and in this way our findings echo those of Taylor.

The telephone calls enabled greater insight into each of Lewis’s four types of change [ 5 ].

• The first type of change is narrative change and it reflects how the participants’ stories change over time. The contextual information gained through the telephone calls provided a more detailed timeline of events over the course of the study. Moreover, as the relationship with the participants intensified, they shared their private accounts on a more regular basis.
• The second type of change occurs from the participants’ reinterpretation and retelling of their stories. Those in the flexible group were given more opportunity to retell and refine their stories. We heard about everyday experiences, meaning we captured the small changes, which were often precursors for bigger changes and thus, how the process of change evolved. One of the many advantages of qualitative longitudinal research is that prospective and retrospective accounts of experience can be explored over time [ 1 ]. This allowed participants to reflect, recount and recapitulate their experiences as the study progressed. In this way, participants were reminded of events or feelings that they might have otherwise thought insignificant, giving them more detail to reinterpret and retell. This finding is supported by Taylor, who posited that the immediacy of the transitions that the youths in her study experienced had been lost between waves of interviews [ 29 ].
• The third type of change is evoked through the continuous reinterpretation of the researcher. Qualitative longitudinal research encourages reflexivity for the participant and the researcher, and as the study progressed we saw the participants differently as individuals, and in relation to one another. This meant we were continuously reinterpreting their stories. Such reinterpretation was amplified as we developed a reciprocal relationship with the participants, which was particularly the case for participants who were telephoned. As the findings suggest, the data gathered from the telephone calls informed subsequent interviews in a literal way; a participant would tell us something on the phone and we would then probe further about it at the interview. But at another level, the everyday chit chat about their lives influenced the data generation and the analysis in a subtle way.
• Lewis’s [ 5 ] fourth category is no change. In the context of this research, no change was generally positive, because changes usually meant participants were closer to death. Often participants’ chatted about their everyday activities, which supports the idea that is with the normal everyday activities that participants find comfort, control and sense of self [ 30 - 36 ].

The research relationship

This paper has raised questions about the ethics of the research relationship and highlighted the importance of ensuring the physical and psychological safety of both the researcher and the participant. Qualitative longitudinal research forces the research relationship into starker focus than one-off qualitative studies. Reflexivity is key to rigorous qualitative research and qualitative longitudinal research emphasises the importance of this. The researcher in this study (EC) kept a research diary where she noted her reflections on change – changes in the participant physical and psycho-social wellbeing, changes in her own feelings about the study, participants, interviews or analysis. In this way she could map her own journey with that of the participants. These reflections were included in the longitudinal analyses of the individual cases using diagrammatical timelines to ensure reflexivity.

The researcher’s diary was also used as a way of de-briefing after the interviews and telephone calls. The project did carry an emotional burden and the research team met at regular intervals to discuss the project. The researcher was made aware of counselling services that were available to her and her transcriber. Qualitative longitudinal studies are often thought to emphasis issues concerned with data management, consent, confidentiality, anonymity, ending the participant/researcher relationship [ 8 ] and arguably the telephone calls exaggerated this further. However, with careful planning, adequate support and an evidence base of methodological accounts to help qualitative longitudinal researchers, these issues can be overcome.

The participant and the researcher require a trusting relationship which empowers participants to share their stories. There is evidence to suggest that qualitative longitudinal research has therapeutic potential for participants [ 1 , 8 , 29 , 37 - 40 ]. For example, participants talking about diabetes enjoyed the experience and had time to discuss their issues, when compared with rushed hospital appointments [ 37 ]. Likewise, parents of children with leukaemia felt it gave them the opportunity to release their thoughts and emotions [ 39 ]. The longitudinal aspect allowed participants to reflect on their own stories. Perhaps in doing this they were able make sense of their illness as Frank suggested [ 18 ].

When is increased contact justified?

The findings in this paper suggest that using telephone calls, in addition to face to face interviewing may be indicated to tackle 3 challenges of qualitative longitudinal research.

Countering attrition

As a result of the telephone calls we conducted 2 interviews that would have otherwise been missed because the participants would have died. Unsurprisingly, attrition is common in qualitative longitudinal studies because of the longitudinal aspect [ 8 ]. No participants in this study withdrew, meaning we are unable to say with any certainty that the telephone calls helped to keep participants recruited into the study. Nevertheless, being able to get a sense of what was happening to them in real time meant we could address the small changes that participants experienced. As the study progressed, the telephone calls were useful in keeping up with how people were doing and if they were going to hospital or hospice. The findings in this article largely support Taylor, who found that the frequent contact she had with the vulnerable youths in her study improved retention [ 29 ]. Research which involves potentially transient groups of participants might also benefit from regular contact. For example, studies involving participants with mental health issues or addiction, or other groups who are regularly in and out of hospital like those with chronic illness or frail older people.

Strategies such as birthday and Christmas cards, and diaries have been reported in other qualitative longitudinal studies [ 41 - 43 ], but our experience supports Holt, who suggests that telephone calls are a socially inclusive method of generating data [ 23 ]. Moreover the telephone calls were informal, and part of what people did in everyday life. This is in contrast to the research interview which none of the participants had undertaken before. Neither were the telephone calls pre-planned in the same way as the face to face interviews which meant we captured what the participants were doing at exactly the time of the phone call. In this way, the telephone calls enabled accounts of a different participant experience to emerge.

Exploring an unpredictable disease trajectory

Often, the illness trajectory of participants took a sudden unpredictable downward turn. As a result of the regular telephone contact we were able to capture this time. Nissim et al. also incorporated flexibility into their research design to capture how the desire for a hastened death evolved over time for people dying of cancer [ 44 ]. Our experience, and that of Nissim et al. supports the recommendation that a flexible approach is necessary in qualitative longitudinal research, because we do not know what change will occur [ 4 ].

Shifting control

Holt found one of the benefits of telephone interviewing to be that participants had control over the privacy of the call, and over their social space [ 23 ]. The participants in this study described experiencing a loss of control, and feeling powerless, as they gradually relinquished control to the health professionals who were caring for them. If the telephone calls enabled participants to feel more in control of their social space it might go some way to restoring feelings of empowerment. Sturges and Hanrahan also commented that research participants might be more comfortable discussing sensitive topics on the telephone. In the context of their work ‘sensitive’ meant ‘embarrassing’, but the same could apply to emotionally sensitive topics, such as deciding to stop treatment, choosing where to die or how to involve family in such decisions [ 45 ].

Limitations

This paper reflects the accounts of 16 participants with metastatic colorectal cancer. They were recruited from the same centre within a period of 9 months. It is unlikely that participants’ accounts would have been the same if we had we recruited at a different time, and from a different place. The group were all white Caucasian. Those with moderate to severe memory impairment and those who were considered to be approaching the terminal phase were excluded from the study. No participants withdrew from the study which suggests that the method of recruitment and the qualitative longitudinal approach were acceptable to participants, in an area which is known to be difficult to conduct research.

Qualitative longitudinal research is increasing in popularity, as researchers appreciate the importance of understanding change in the lives of ill people. As yet, there are inadequate reflections on the qualitative longitudinal methodology itself, particularly within healthcare. This paper has provided a practical account of supplementing face to face longitudinal interviews with telephone calls. There are benefits and challenges to this approach and balancing the research agenda with the ethical agenda, whilst fostering a trusting relationship, was a continuous endeavour. There is agreement that qualitative longitudinal research is about understanding change and adding telephone calls created a more nuanced understanding and greater narrative depth. Moreover, telephone calls between qualitative longitudinal interviews have the potential to overcome some of the complex issues that are inherent to health care research, particularly with those with life-limiting illness. Researchers should not be put off by the challenges, rather embrace the potential for rich, dynamic, contextualised accounts of experience. Finally, we support Calman et al’s plea to encourage qualitative longitudinal researchers to publish their methodological reflections, to move this valuable method forward [ 10 ].

Acknowledgements

This study was funded by a PhD studentship from the Economic and Social Research Council. The authors would also like to acknowledge the patients and carers who participated in the interviews and to the health professionals who helped to recruit participants.

Competing interests

The authors declare that they have no competing interests.

Authors’ contributions

All authors made substantial contributions to conception and design and have been involved in drafting the manuscript and revising it critically for important intellectual content. EC conducted the interviews and analysis. EC drafted the manuscript. All authors read and approved the final manuscript.

Authors’ information

EC, MK and SAM have extensive experience of conducting end of life qualitative longitudinal research involving patients and their carers. SAM is a practising GP.

Contributor Information

Emma Carduff, Email: [email protected] .

Scott A Murray, Email: [email protected] .

Marilyn Kendall, Email: [email protected] .

• Correspondence
• Open access
• Published: 06 February 2013

Developing longitudinal qualitative designs: lessons learned and recommendations for health services research

• Lynn Calman 1 ,
• Lisa Brunton 1 &
• Alex Molassiotis 1 , 2  

BMC Medical Research Methodology volume  13 , Article number:  14 ( 2013 ) Cite this article

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Longitudinal qualitative methods are becoming increasingly used in the health service research, but the method and challenges particular to health care settings are not well described in the literature.We reflect on the strategies used in a longitudinal qualitative study to explore the experience of symptoms in cancer patients and their carers, following participants from diagnosis for twelve months; we highlight ethical, practical, theoretical and methodological issues that need to be considered and addressed from the outset of a longitudinal qualitative study.

Key considerations in undertaking longitudinal qualitative projects in health research, include the use of theory, utilizing multiple methods of analysis and giving consideration to the practical and ethical issues at an early stage. These can include issues of time and timing; data collection processes; changing the topic guide over time; recruitment considerations; retention of staff; issues around confidentiality; effects of project on staff and patients, and analyzing data within and across time.

Conclusions

As longitudinal qualitative methods are becoming increasingly used in health services research, the methodological and practical challenges particular to health care settings need more robust approaches and conceptual improvement. We provide recommendations for the use of such designs. We have a particular focus on cancer patients, so this paper will have particular relevance for researchers interested in chronic and life limiting conditions.

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Longitudinal qualitative research (LQR) has been an emerging methodology over the last decade with methodological discussion and debate taking place within social research [ 1 ]. Longitudinal qualitative research is distinguished from other qualitative approaches by the way in which time is designed into the research process, making change a key focus for analysis [ 1 ]. LQR answers qualitative questions about the lived experience of change, or sometimes stability, over time. Findings can establish the processes by which this experience is created and illuminates the causes and consequences of change. Qualitative research is about why and how health care is experienced and LQR focuses on how and why these experiences change over time. In contrast to longitudinal quantitative methodologies LQR focuses on individual narratives and trajectories and can capture critical moments and processes involved in change. LQR is also particularly helpful in capturing “transitions” in care; for example, while researchers are beginning to more clearly map the cancer journey or pathway [ 2 ] we less clearly understand the processes involved in the experience of transition along this pathway whether that be to long term survivor or living with active or advanced disease. Saldana [ 3 ] identifies the principles that underpin LQR as duration, time and change and emphasizes that time and change are contextual and may transform during the course of a study.

Holland [ 4 ] identifies four methodological models of LQR.

Mixed methods approaches. LQR may be imbedded within case studies, ethnographies and within quantitative longitudinal studies such as cohort studies and randomized controlled trials. Mixed methods studies are the context of most LQR studies in healthcare [ 5 ].

Planned prospective longitudinal studies. Where the analysis can be the individual or the family or an organization.

Follow-up studies, where an original study of participants are followed up after a period of time.

Evaluation studies, for policy evaluation.

LQR methodologies can be particularly useful in assessing interventions. LQR studies embedded within randomized controlled trials or evaluation studies, of often complex interventions, are used as part of process evaluation. This can help us to understand not just whether an intervention may work but the mechanisms through which it works and if it is feasible and acceptable to the population under study [ 6 ].

LQR is becoming more frequently used in health research. LQR has been used, for example, to explore the prospect of dying [ 7 ], journeys to the diagnosis of cancer [ 8 ] and living with haemodialysis [ 9 ]. Published papers report mainly interview based studies, sometimes called serial interviews [ 10 , 11 ] to explore change over time, although other data collection methods are used. Different approaches have been taken to collection and analysis of data, for example, the use of longitudinal data to fully develop theoretical saturation of a category in a grounded theory study [ 12 , 13 ]. Data is not presented as a longitudinal narrative but as contributing to the properties of a category.

There are limitations in the published literature. Analysis is complex and multidimensional and can be tackled both cross-sectionally at each time point to allow analysis between individuals at the same time as well as longitudinally capturing each individual’s narrative. Thematic analysis is widely used [ 13 – 15 ] but can lead to cross-sectional descriptive accounts (what is happening at this time point) rather than focusing on causes and consequences of change. Research founded on explicit theoretical perspectives can move beyond descriptive analysis to further explore the complexities of experience over time [ 16 ]. LQR generates a rich source of data which has been used successfully for secondary analysis of data [ 11 , 17 ].

How analysis with this multidimensional data can be integrated is a particular challenge and is not well described or reported in the literature [ 4 ]. Papers tend to focus on either the cross-sectional or longitudinal (narrative) data. This means that the longitudinal aspects of the study, time and change, are often poorly captured. In particular the reporting of cross-sectional data alone can lead to descriptions of each time point rather than focusing on the changes between time points. Studies may have the explicit aim to focus on one or other aspect of analysis and this will achieve different analysis and reporting. The addition of a theoretical framework can help to guide researchers during analysis to move beyond description.

The purpose of this paper is to reflect on the strategies used in an LQR programme and highlight ethical, practical, theoretical and methodological issues that need to be considered and addressed from the outset of a study, giving researchers in the field some direction and raising the debate and discussion among researchers on ways to develop and carry out LQR projects.

We have carried out over the past six years a large LQR programme of research about experiences of symptoms in cancer patients [ 18 – 25 ]. This included interviews with patients from eight cancer diagnostic groups (and their caregivers) from diagnosis to three, six and 12 months later. As researchers working for the first time with longitudinal qualitative data we developed our research design and analysis strategy iteratively throughout the project. We have a particular focus on cancer patients, so this paper will have particular relevance for researchers interested in chronic and life limiting conditions.

As we were completing the analysis and dissemination of this large programme of research we wished to reflect on our experience of a health services research LQR project. As members of the core research team we felt that we had developed a great deal of experience in the development and management of such a project. We felt that if we pooled our knowledge we could suggest some important lessons learned from our experience. The authors met at regular intervals to identify the key aspects of the researchers’ experience of conducting this LQR project that we considered were not well addressed within the current literature. Issues were identified through brainstorming sessions among the investigators and consideration of past formal discussions (recorded or not) during the project duration. A final complete list was presented and discussed in an open meeting with a group of qualitative researchers from a supportive care research team and further discussions took place. Common issues that are relevant to any qualitative research and for which there is significant literature where left out, and only issues that were closely linked with LQR remained in the list for further discussion. Alongide our experience and consultation with experienced qualitative researchers, we have also searched the literature to find out if there is any clear information on each issues/topic. Recommendations, thus, were both experience-based and literature based, although due to lack of or limited literature around some of the issues discussed, experience-based recommendations were more common. This paper was developed to give examples of how specific ethical and practical issues in the project were tackled so they might stimulate debate and discussion amongst LQR researchers.

We present the results of our discussions and suggested solutions below and these are summarized in Table 1 .

Ethical issues: participant related

Patients with cancer may be vulnerable, with a high symptom burden and poor prognosis, but patients still value being able to contribute their views [ 10 , 26 ]. Longitudinal research with this patient group is important but some ethical issues are amplified by collecting in-depth data from the same participants over time. Particular issues have been identified as intrusion (into people’s lives), distortion (of experience due to repeated contact, personal involvement and closure of relationships) and dependency [ 4 ].

We wished to interview patients shortly after diagnosis, which is a critical point in the patient pathway. Sensitive recruitment of participants soon after a life changing diagnosis, such as cancer, is important in building relationships and establishing a long term commitment to a study. Although building relationships and developing trust is essential this adds complexity to the role of the researcher involved in longitudinal research. Both the researcher and the researched can be affected by their involvement over time [ 27 ]. We found that on occasion patients did contact the research team for advice or information relating to their diagnosis. It is important that a research team have plans in place to manage this sort of situation without detriment to the relationship with the participant. There was a clear written distress policy for interviews and participants were given information about local support in case they wanted this after the interview.

There was a significant risk in our research that patients would become too unwell to participate or die between interviews. We sought consent from participants to access medical records and were able to check the health status of participants prior to contacting the participants to make arrangements for the next interview to ensure this was done sensitively. Consent was an ongoing process and was given in writing prior to the first interview and consent was checked verbally prior to each subsequent interview and also during the interview if a participant became upset or was talking about a particularly sensitive issue. The participant would be reminded that the tape recorder could be switched off at any time and the interview could be terminated at any time. If upset the participant would be given time to recover before the researcher asked if it was acceptable to continue with the interview. These procedures were built into the study protocol and the application for ethical approval.

Ethical issues: researcher related

Researchers too can be affected by their role [ 27 ]. Despite good training and support protocols for researchers qualitative research can be emotionally challenging [ 27 ]. Building a relationship over time, hearing about distressing situations and the impact that diagnosis can have on everyday life and relationships is hard. Information may be disclosed to the researcher that has not been discussed with anyone else; this builds a bond between those involved. Researchers may see participants deteriorate and die. The research team needs to build a supportive network and procedures to ensure that researchers are well supported in their role. In our study we used debriefing for very stressful events and researchers had regular supervision with the study team. Peer support within the research team also proved important on a day to day basis. It has been suggested that professional counseling is made available for researchers for whom debriefing is not sufficient support [ 27 ].

Staff retention may be an issue over time. There is a tension between the need to build relationships with participants in difficult circumstances and researcher burn out. It is ideal that one researcher builds a relationship with a participant over time but due to staff turnover or sickness this may not always be possible. Changes in staffing on LQR projects need to be well managed; the participant should be made aware that a different researcher will interview them and the researcher should read through previous transcripts so that participants feel there is some continuity and they do not have to repeat their story.

“Escaping the field” [ 4 ] or closure of relationships that have been built over time requires thought. Participants in our studies were prepared for the longitudinal element and the closure of the relationships. Study information was clear so participants knew that they were going to be interviewed 4 times over the year, and researchers prepared participants for the last interview: when ringing to arrange last interview participants were reminded that it was the final visit. At the end of the last interview we asked participants how they had found the process of being involved in research and had an informal “debriefing” session with them. If patients died whilst on the study a card would be sent on behalf of the research team to offer condolences.

It is important to ensure the confidentiality is maintained throughout the project as personal details, such as addresses, may be kept for longer than in studies with a single data collection point. Any ad hoc correspondence, phone messages or emails, for example, from participants to update researchers on their condition, should be handled in line with ethical approval requirements. As data is collected over time and experiences may be bound in particular circumstances and contexts ensuring that participants are not identifiable becomes more pertinent. The “blurred boundaries” for example taking your “emotional work” home with you [ 27 ] may also need special attention in LQR. Wray et al. [ 27 ] report, in their study, taking telephone calls from participants at home and ensuring women got evidence based care. These are complex, grey areas in LQR and it may become harder to separate, or manage ethically, empathy as a human being and a wish to help people who are suffering, with the role of a researcher when relationships deepen over time. These issues may have implications for the confidentiality of participants’ identities and data.

Data may have to be shared across large teams; this may mean that the core research team loses control of the data set and it is important to ensure that all team members are working to the ethical principles agreed with the relevant ethics committee. Large volumes of data may be generated from LQR and consideration should be given to how this data is archived and stored for the required length of time stipulated by the university, hospital or other regulatory body. LQR data is a valuable resource for archiving, data sharing and secondary data analysis, and may be a requirement of some funding bodies. To date this has been more common for large qualitative population data sets and is a specialist service offered by some Universities. The correct ethical approval, and participant consent to this, should be sought at the outset.

It is important to consider how researchers will deal with participant fatigue; within quantitative studies much thought is given to the burden of lengthy repeated questionnaires, the same consideration should be made for LQR, particularly as new topics of interest may emerge during the course of the study and it is tempting just to add a few more questions to the interview. Focusing on the purpose of the research, finding different ways to ask questions can avoid repetition and participants anticipating questions and giving the “right” response [ 28 ]. It is also wise to involve patients or service users in the design of the research and ongoing management to get the participants’ perspective of burden and balance research interest with participants’ well being.

Recruitment and retention of participants

We were successful in the recruitment of participants to the study. Patients were identified by the clinical team at the research site and then approached by a member of the research team to give information about the study. Once participants were recruited to the study retention was satisfactory. Recruitment and retention are important in all longitudinal studies. In qualitative studies sufficient participants are required at the last time point to ensure data saturation particularly if any new themes become evident at this point. We also wished to interview carers and this created a significant number of interviews at follow-up. We eventually made the decision not to interview some carers at follow-up as data was saturated. This created some difficulty with carer participants who valued this ongoing opportunity to ventilate feelings. The oversampling at the beginning (in order to have an adequate number of subjects at the last interview) was not a successful technique and overstretched the researchers and the data collection process unnecessarily.

There were two groups of patients where attrition was particularly poor: lung cancer patients (where 18 were recruited and four finished the study) and brain cancer patients (where 11 started and only one patient completed the fourth interview). For both of these groups there was a significant drop off after the third time point at six months. These attrition rates were not unexpected and almost all of these participants withdrew because they were too unwell or had died; this type of attrition may be unavoidable in some patient groups. All breast and gynecology patients completed all four interviews. Hence, a more selective approach to over-recruitment at the beginning of a LQR project is advocated, basing such decision on the outlook of participants over the timeline of the project. In some LQR studies it might be appropriate to develop newsletters or a web site with news of the study for participants to sustain interest. Good researcher communication skills are required to develop trust and convey the importance of the project to participants in the initial stages of the project. We have field notes that suggest that participants found participation in the study beneficial and this may also have contributed to our successful retention rates in populations with better health and survival.

The attrition in the sample highlights the complexity of having a heterogeneous sample in longitudinal research. We were well aware at the outset of the different disease trajectories of the tumor groups but for the purposes of analysis we designed the data collection points to be the same for all patients. In retrospect this was not entirely appropriate as there were different disease and treatment trajectories within each diagnostic group. In future research we would think differently about timing of interviews and link it to, for example, critical incidents rather than having set time points. Careful thought should be given to heterogeneity of the sample; by sampling over a number of cancer diagnostic groups we complicated our analysis making it difficult to draw together the experiences of patients with different disease trajectories. It may have been a better strategy to sample for heterogeneity within, for example, patients with advanced cancer. While heterogeneity in qualitative research is a desirable sampling feature, in LQR it is the “change” in events that is of more importance, and depicting change in very heterogeneous populations may not be so meaningful. Hence, defining clearly what an appropriate sample is for a given LQR study and understanding the trajectory of this sample over time are highly important considerations.

Issues of time and timing are of importance. Longitudinal research often focuses on change: how does coping or experience change? or how do participants manage change over time? [ 1 ]. Quantitative longitudinal research, such as cohort studies, assumes linearity of experiences and that people may experience time in the same way. However, the notion of time in a disease trajectory is complex. The difference between clock time and embodied time (or the experience of time) of the cancer patient has been recently illustrated in lung cancer, and this research highlights the lack of relationship between these two conceptualizations of time [ 29 ]. The differences between research time and biographical time have been explored elsewhere too [ 1 ]. Thus, consideration needs to be given to how time is defined in the study by the participants and by the research team.

One of the central issues we faced in this study was about the nature of time. As discussed above we identified set time points for data collection at the outset. However, we discovered that it is important to balance the pragmatics of a research design with flexible notions of time. We had significant attrition after the data collection point at six months and in retrospect we had not factored in the short disease trajectories of some patients or that some patients may have different notions of time. It may have been more useful to identify potential turning points or defining moments, from initial interviews, previously published research or clinical understanding of disease and focus on those rather than identifying set time points. For example, we know that the end of treatment, be that palliative or curative, is a significant time for patients [ 30 , 31 ] but treatment duration may not fall neatly into the first three months after diagnosis. That said, the focus of interviews should not be about “concrete events, practices, relationships and transitions which can be measured in precise ways, but with the agency of individuals in crafting these processes [ 32 ], p 192.” However, defining moments do often lead to change, in experience, coping or relationships and are useful points to tap into participants’ experiences. However, on a practical level, it would have been very difficult with our large data set to keep track of these critical incidents for every participant and to be able to organize researcher appointments to conduct interviews.

Issues of time need to be explicitly placed within the interview, an aspect we could have strengthened in our study. Looking both forwards and backwards in time moves away from linear notions of time as discussed above, asking participants to reflect on the content of their previous interviews. One way of doing this may be to encourage participants to approach the interview with reflexivity [ 33 ], a concept we are familiar with as researchers but in longitudinal research may be as important for the participant. For example, an issue that seems important for participants in the short term may not prove to be as important in the long term with the benefit of hindsight or increased understanding of the context [ 34 ]. This tentative or provisional, often contradictory, understanding makes analysis complex. As researchers we must endeavour to understand these complexities and make sense of them.

McLeod [ 33 ] suggests that reflexivity within the interview did not work for all of her research participants (in a study of school children) and is a point worth pursuing as we further develop our understanding of this methodology with patients. Reflexivity on a health state is complex for patients and it has been suggested that interviewing the ill may pose particular difficulties for the researcher [ 35 , 36 ], [a]s sick people, participants are unfamiliar with their everyday worlds, and they are often incapable of describing their condition and perceptions, so that researchers have difficulty in obtaining data to comprehend, interpret and generally conduct their research. … When researching participants who are sick, these methodological problems result in decisions about the timing of data collection, challenges to validity and reliability, and debates about who should be conducting the research [ 35 ], p 538.

Longitudinal qualitative research may in some way solve some of these issues as researchers will have the chance to incorporate changing illness perceptions into data collection and analysis. Patients whose illness has a long term impact will develop vocabulary and a way of expressing their illness experience in a way that patients with an acute episode will not. These changing perceptions, often moving from a lay perspective to one of the patients managing and controlling their illness [ 37 ], needs to be factored into analysis.

Data collection and management of resources

One of the main difficulties with LQR is the time and resources that are required to undertake a study. Dealing with a large data set can bring logistical challenges and there is a significant amount of time spent on project management, keeping up to date with participants, sending reminders and checking on a patient’s status. Analysis between interviews, across the participants and longitudinally within the individual narrative, can be a significant challenge in LQR.

There are no guidelines about how long a longitudinal study should be (although at least 2 points are necessary to examine change [ 3 ]) or how often data needs to be collected; this should be determined by the processes and population under investigation and the research question. Many health/patient related studies are short in duration, one to two years, in comparison to LQR in the social sciences where issues, such as transitions in identity from child to adult, are investigated over decades. This may of course be because of differences in the issues/processes under investigation but may also reflect research funding in health care which is often limited to a fixed duration. This poses problems for a research team who wish to follow a population for a number of years and requires ongoing generation of funds to complete the research.

The topic guide and the focus of the interview may change over time, this may prove challenging when seeking ethical approval for a study. Ethics committees usually ask for all documentation including topic guides prior to giving an opinion. Our interview schedule had broad questions both to comply with ethical approval procedures and to allow participants to talk about what is important for them at the time of each interview. Example opening questions include “How have you been feeling physically this past month” or “How have you been feeling emotionally this past month”. Developing a relationship with an ethics committee and seeking guidance about how to approach this with the committee is advisable.

LQR is a prospective approach and therefore can give a different perspective on processes. Issues that seem very important at one time point may change with the perspective of time and processes may change the way experiences are viewed. One off qualitative interviews rely on recall, for example, asking about symptom experience at diagnosis when a patient is several months away from that point. There will always be some element of retrospective discussion in an LQR interview but with a focus on change over time, this can be aided by summarizing or reflecting on the previous interview. As data is collected prospectively, causation, the temporality of cause and effect, and the processes or conditions by which this happens can also be explored in the data [ 4 ].

As we describe below, the richness of the interview content and overwhelming amount of data made it difficult to analyze in-depth each interview before the next one, an issue also been reported in other studies [ 27 ]. When this is the case we would propose that a preliminary analysis and summary of the interview is made so that the next interview can commence with a recap of what was previously discussed. Subsequent interviews could start by the interviewer providing a short summary of themes they have identified from the last interview and asking the participant to reflect on this summary of experiences before moving on to ask how the participant is feeling now and what has changed for them since the last interview. This more selective interview approach in subsequent interviews may also decrease the amount of data collected, easing the analysis and making the data collected more focused and less overwhelming for the researcher. Indeed we have noticed that often subsequent interviews tended to be shorter than the initial one. This helps the researcher and participant to keep the focus on longitudinal elements, what has changed since last time, why has this happened? Preliminary analysis will also highlight emerging themes to be further pursued in later interviews.

Using LQR researchers can respond to a change in focus and interviews can be adapted to the individual narratives. This is particularly useful as at the outset it is often not clear what the important processes are over time. Thus much data collected in the initial stages may not be relevant in the emerging processes over time, and data collection necessarily will become more focused at later time points. Flexibility and responsiveness to the data and emerging analysis and interpretation is a key skill for the LQR researcher.

Analyzing data

Longitudinal qualitative data analysis is complex and time consuming. A longitudinal analysis occurs within each case and as comparison between cases. The focus is not on snapshots across time (a cross-sectional design will achieve this) but “to ground the interviews in an exploration of processes and changes which look both backwards and forwards in time [ 32 ], p194.”

Holland [ 4 ] synthesizes two approaches to analyzing data and suggests some questions to guide analysis. Firstly, framing questions focus on the contexts and conditions that influence changes over time, she gives the example, “what contextual and intervening conditions appear to influence and affect participant changes over time? [ 4 ].” Descriptive questions generate descriptive information about what kinds of changes occur, for example, “what increases or emerges through time? [ 4 ].” These two types of questions move the researcher forward to develop deeper levels of analysis and interpretation.

Data collection and analysis should be informed by the research question, data collection methods and theoretical perspective, if one is being used from the outset. It may be possible to anticipate whether cross-sectional or longitudinal analysis would be the most helpful method of answering the research question. Considering these issues at the outset may allow the researcher to be alert to themes in the data during analysis whilst keeping an open mind to emerging issues.

As described above we planned to analyze each interview before moving onto the next interview with each participant to allow reflexivity of the researcher and participant and to focus on “processes and changes” rather than snapshots. Due to the volume of data it was not always possible to do this and this is certainly a limitation of our work and may reflect the predominance of cross-sectional data in our reporting of the studies.

We decided to analyze each tumor group separately rather than across the whole sample as it was clear that there were significant differences in these populations due to different disease trajectories and symptom experience. There was a different analysis and theoretical perspective taken in each analysis reflecting that data from each tumor group. McLeod [ 33 ] suggests that the nature of longitudinal data means that multiple theoretical frameworks may be useful to analyses and interpretation and the use of different paradigms may lead to new insights and interpretations.

Interpretative Phenomenological Analysis was used in lung cancer analysis [ 21 ], Interpretative Description with lymphoma data [ 20 ], content or thematic analysis using Leventhal’s self-regulation theory, the theoretical framework for the study, was used for gynecological, brain, and head and neck cancer data analysis [ 18 , 22 , 23 ], and thematic narrative analysis for breast cancer patients, The above approach took into consideration the data analysis experience of the researchers involved or the type of information collected through the interviews. For example, the analysis of breast cancer patients’ accounts [ 25 ] lead itself to narrative analysis because the women expressed their feelings much more than other groups and we analysed the data through patient stories about their cancer journey; this fitted well with the approach to data generation and Frank’s [ 38 ] concept of the cancer journey was used as the theoretical lens though which data were analyzed. In data from other diagnostic groups the unit of analysis was often the whole interview, as in the case of patients with head and neck cancer, where coding units in the first interview were assessed for presence and information in subsequent interviews. This captured well some experiences over time, such as the continuous nature of fatigue and tiredness over time, or the attempts for maintaining normality which were evident only after T2, increasing in complexity at T3 and T4 [ 22 ]. Detailed practical examples are presented in the respective papers [ 18 – 25 ] and a summary of the themes alongside other qualitative research related to symptom experience of cancer patients is presented in a meta-synthesis of these data [ 39 ].

Our analyses have highlighted new insights into the symptom experiences of patients with cancer. Utilizing multiple analysis strategies and theoretical perspectives has its strengths and allows comparison and gives direction for reanalysis and further interpretation of this important research resource.

Recommendations

Through reflecting on and describing our experiences we have identified broad recommendations for undertaking LQR projects in health research which we hope will stimulate debate amongst qualitative researchers.

We would recommend incorporating a theoretical perspective (if appropriate to the methodology), that encompasses concepts such as time or the experience of change. This may help researchers keep the analysis “alive” to longitudinal aspects of analysis and move beyond descriptions of experience at each time point to explore change between time points.

Qualitative researchers are familiar with complex ethical issues involved in being in the field. However, there are some ethical issues that are amplified whilst undertaking LQR, and require careful consideration and planning, such as how relationships are built and sustained over time whilst adhering to ethical practices, how relationships are ended, maintaining confidentiality over time and managing distress in participant and researchers.

Good project management is essential when working with large data sets. Ensure adequate time is included in project plans for project management and communication with participants.

Developing good team working is important; there are advantages to working with large teams which may be an unfamiliar way of working for qualitative researchers. Different perspectives can be brought to bear on the analysis making it richer and generating new insights. Communication is particularly important when analysis is undertaken by researchers who have not been involved in collecting data.

We would encourage researchers to consider multiple methods of analysis and secondary analysis within the same data set to explore the rich data that is generated.

We have clearly identified that longitudinal research with patients with a poor prognosis and experiencing long term challenges is worthwhile. However, thought needs to be given to the timing of data collection and the heterogeneity of the sample. Support for participants and researchers, and any additional ethical considerations, should be built into protocols as there is an increased burden for all involved in LQR.

We recommend that from the outset the research team should consider how the volume of data can be managed and consider practical issues such as timing of interviews so data can be transcribed and analyzed in time for the next round of interviews. This early analysis may help keep the focus on change and transitions rather than description of events.

Funders of research may be unfamiliar to funding longitudinal qualitative research and recommend that a strong case for the added value of this method should be made.

This paper has explored our experience of LQR and highlighted areas where we have learned a great deal about the methodology. During this longitudinal project we developed expertise in managing practical and ethical issues, tried different analysis strategies to look for alternative ways of examining data and understanding the experience of participants. There have been successes in the strategies we have used and areas in retrospect that we could have worked differently. For example, ensuring sensitivity during initial recruitment and subsequent contacts, putting procedures in place from the outset of the study to manage issues such as patient distress during interviews and patient initiated contact regarding health issues during data collection all helped the researchers to build trusting relationships with participants. These factors, together with researcher continuity, were important in helping to maintain good recruitment rates for participants with better health and survival rates throughout the study.

It is important to note that findings were generated from one particular study and issues highlighted here reflect the conduct of this study. There are other methodological issues that may be illustrated better through other examples of LQR research and we would encourage researchers to publish methodological issues highlighted by their studies to strengthen debate in this area. Although we consider that there are general lessons to be learned from our experience, which can be usefully considered by other researchers, we acknowledge that there may be aspects of the study, particularly the heath status of the participants that will not necessarily be broadly relevant. For this reason we do consider that this paper will have particular relevance for researchers interested in chronic and life limiting conditions.

We found that when seeking guidance for the project published literature was limited in highlighting debates about LQR focusing on the reporting of findings rather than developing debate about this emerging methodology. Much of the methodological literature cited in this paper comes from the social science literature where there is a long standing tradition of LQR and where debates about LQR with schoolchildren or other healthy populations in society are well rehearsed. There is little literature that examines the methodology in the context of health services research and whether there are particular issues about following participants through the trajectory of their illness to recovery, living with impairments or death. This paper has started to highlight some of the areas where further methodological exploration would be valuable.

One of the ongoing debates in qualitative methodology is how quality and credibility are evaluated [ 40 , 41 ]. There is little debate about whether LQR poses additional questions about quality. We have highlighted where, for example, there may be heightened concerns about ethical conduct, and using multiple methods of analysis. Longitudinal analysis is complex and is often reported a-theoretically and descriptively [ 13 – 15 ] and this also has implications for the quality and credibility of LQR. It may be that established guidance for the evaluation of qualitative research can be utilised with LQR but little exploration of this can be found in the published literature. Summaries of the researcher’s interpretation of a data collected in a previous interview when discussed with participants at a subsequent interview can enhance the credibility of the data. We have highlighted some ways in which these aspects of LQR can be enhanced, and by providing a record of our experiences it can help to start standardising a process by which QLR can be conducted which can enhance the credibility of research and quality of data collected.

LQR is an increasingly utilised methodology in health services research, for example in the development and evaluation of complex health interventions or to study transitions in recovery or long term illness. The findings presented in this paper are important as they begin to identify areas of LQR where there is potential for debate and multiple perspectives on these would be valuable.

Additional research and inquiry is also essential to further develop the methodology. There is little published work about rigour in LQR, and it would be worth investigating whether additional elements should be added to accepted conceptualizations of the quality of qualitative research so judgments can be made about the rigour of research. Research to explore participants’ perspectives of being in a longitudinal study would be valuable as there may be additional burden to the participant, emotional and practical, of being involved in LQR. Eliciting participants’ insights into their experiences of participation may give us greater insight into the method itself.

This paper has highlighted specific methodological, practical and ethical issues identified in an LQR programme of research about experiences of symptoms in cancer patients in the first year after diagnosis. The study itself has highlighted useful insights into these experiences and allowed examination of data from multiple perspectives, but importantly has been an important learning opportunity of the research team. Next steps may include agreement among the qualitative research community about standardization of the process, identification of LQR research questions that would be distinct from what can be achieved from cross-sectional work, and influencing funders for the value and uniqueness of this methodological approach.

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Calman, L., Brunton, L. & Molassiotis, A. Developing longitudinal qualitative designs: lessons learned and recommendations for health services research. BMC Med Res Methodol 13 , 14 (2013). https://doi.org/10.1186/1471-2288-13-14

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The graduate dietitian experience of employment and employability: A longitudinal qualitative research study from one Australian university

Affiliations.

• 1 Department of Nutrition, Dietetics and Food, Monash University, Melbourne, Victoria, Australia.
• 2 School of Allied Health Sciences, Griffith University, Gold Coast, Queensland, Australia.
• 3 School of Clinical Sciences, Monash University, Melbourne, Victoria, Australia.
• 4 School of Health Sciences, College of Health, Medicine and Wellbeing, The University of Newcastle, Newcastle, New South Wales, Australia.
• 5 Monash Centre for Scholarship in Health Education, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Victoria, Australia.
• 6 Waranara (Healthcare Professions Education Research Network), Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
• 7 Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Victoria, Australia.
• PMID: 37400363
• DOI: 10.1111/1747-0080.12832

Aims: Diet-related chronic disease contributes significantly to the global burden of disease. Dietitians are best placed to address this disease burden, yet graduate dietitians may struggle to find employment. This study aimed to explore dietetics graduates' experiences of employment and employability, up to 6-month post-degree completion.

Methods: Secondary data analysis of in-depth qualitative interview data and longitudinal audio-diaries was undertaken. An interpretivist approach was employed whereby knowledge was viewed as subjective and multiple realities exist. A total of five entrance interviews, 31 audio-diaries and three exit interviews, from nine graduates were included in the analysis. This comprised 12 h of longitudinal audio data. Thematic analysis was undertaken using a framework analysis method.

Results: Four key themes were identified: (1) The tumultuous process of applying for jobs demonstrated that graduates struggled with repeated rejections. (2) The uncertain journey to employment indicated that job-seeking was a limbo stage marked by uncertainty. (3) Feeling the pressure showed that graduates experienced pressure from multiple sources. (4) Enhancing employability explained that graduates were not prepared for available employment opportunities, but utilised resources to increase their employability.

Conclusion: Diverse placement experiences may better prepare graduates for available employment opportunities. To enhance employability, it may be beneficial to assist students to develop job-seeking skills, and to engage in networking and volunteering experiences during their education.

Keywords: dietitian; education; employability; graduate workforce; qualitative research.

© 2023 The Authors. Nutrition & Dietetics published by John Wiley & Sons Australia, Ltd on behalf of Dietitians Australia.

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Unit 6: Qual vs Quant.

28 Qualitative Methods in Communication Research

Qualitative methods in communication research.

In communication research, both quantitative and qualitative methods are essential for understanding different aspects of communication processes and effects. Here’s how qual methods can be applied:

• Conducting in-depth interviews to explore individuals’ experiences and perceptions of their interpersonal relationships
• Conducting in-depth interviews with individuals to explore their experiences, opinions, and feelings about communication topics.
• Facilitating group discussions to gather diverse perspectives on communication issues within relationships.
• Facilitating group discussions to gather diverse perspectives on communication issues or media content.
• Observing and documenting communication practices within specific social or cultural groups to understand their norms and behaviors.
• Observing and documenting communication practices within specific cultural or social groups to understand their communication norms and behaviors.
• Thematic Analysis : Analyzing qualitative data from interviews, focus groups, or media content to identify recurring themes and patterns, for example, patterns in interpersonal communication and relationships.

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