The sands of time: Adolescents' temporal perceptions of peer relationships and autonomy in the context of living with chronic pain

Abstract The incidence of chronic and recurrent pain increases in adolescence. Prevalence of adolescent chronic pain is estimated to be 11%‐44%, with approximately 5% adolescents experiencing moderate‐to‐severe chronic pain. Adolescents with chronic pain also report unwanted changes in emotional, social, and developmental functioning. Very little is known about how adolescents with chronic pain make sense of their development, the role of pain in that development, and how such developmental trajectories progress over time. A multi‐methods qualitative study was designed to explore how adolescents make sense of their experience of chronic pain in the context of development. Nine adolescents (8 girls) aged 12‐22 years old (Mean = 15.7, SD = 2.8) were recruited from a UK national pain service. Adolescents completed an interview on entering the service, and a follow‐up interview 12 months later. They also completed monthly diaries in this 12‐month period. Data comprised 18 interviews and 60 diary entries, which were analyzed using inductive reflexive thematic analysis. Analyses generated one overarching theme entitled “tug of war: push and pull,” demonstrating developmental tension related to pain, and the cumulative impact these had over time. This overarching theme comprised two subthemes which capture these tensions across the developmental domains of peer relationships and autonomy. The first subtheme, “the shifting sands of peer relationships,” explores the ever‐changing closeness between self and peers. The second subtheme referred to “restricted choices” and how pain limited the participants' autonomy but that this, over time could push development forward. These results extend previous cross‐sectional research on the developmental consequences of chronic pain, showing the dynamic fluctuations and alterations to developmental trajectories over time.


| INTRODUC TI ON
Adolescence, the period of transition between childhood and adulthood, is characterized by a number of key tasks such as the development of identity and autonomy, in addition to changes in the dynamics of peer relationships and their influence. 1 Although everyday pain in childhood is common, it is often clinically uncomplicated. 2,3 Chronic pain, however, is pain that lasts for 3 months or longer and is associated with significant distress, disability, and developmental delay. 4 The consequences of chronic pain on adolescents' social development have only recently garnered attention in the literature. Our definition of adolescence is an inclusive one, adopting the recent Lancet definition which extends into young adulthood (ages [10][11][12][13][14][15][16][17][18][19][20][21][22][23][24]. 5 In part, this extension was to recognize that tasks of independence in the early to mid-21st century have slowed compared to previous generations. 5 This delay is particularly relevant to a chronic pain population for whom normative developmental milestones may take longer to achieve. 6 However, evidence highlights how the picture might be more complex. Indeed, adolescents who have chronic pain report that they perceive themselves as being behind their peers in areas such as school progress and independence, but ahead of their peers in areas such as problem-solving. 7 In addition to self-reported developmental differences as compared to their peers, adolescents who experience chronic pain also report alterations to their relationships with those peers. 8 Although interesting, these observations are limited in their reach and ability to unravel the observed complexities. In a recent scoping review, we identified three key limitations of current evidence. First, there is a dominance of cross-sectional approaches to studying social development, resulting in a lack of understanding as to how adolescent developmental functioning may change over time. 9 Second, while there is a strong tradition of quantitative enquiry, 10 -13 there is a lack of qualitative, idiographic analysis of the lived experiences, perceptions, and conceptualizations of adolescents who live with chronic pain. Although unusual, it is possible to undertake longitudinal qualitative research, achieved by conducting follow-up interviews, which allow for reflection on changes over time, 14 and diaries, which collect data on life as it unfolds. 15 Such methods have been used individually with adolescents who experience chronic pain, 16 and in an integrated manner with adults who live with chronic pain. 17 Finally, our review identified a lack of research which explored the specific developmental domains (ie, peer relationships and autonomy) in detail, with many studies exploring social development or social functioning more broadly.
Consequently, to address the above-identified gaps, the current research study aimed to answer the following research question, using a combination of interviews and diary methodology: how do the perceptions and experiences of adolescents who have chronic pain, in relation to their social development, change over the course of 12 months? 2 | ME THODS

| Design
This study used a longitudinal design comprising semi-structured interviews at two time points across a 12-month period, and monthly online diaries over the same 12-month period. This study presents findings from the data received from adolescent participants taking part in a wider project which also included interviews with parent participants. Parental data are not presented here to enable a sufficiently detailed analysis of the adolescent data.

| Participants
Thirteen adolescents provided informed assent or consent and took part in the initial interviews; however, four were subsequently excluded for non-completion of the follow-up interviews and/or the diaries. Reasons for non-completion were not given, participants either stated they did not wish to continue (n = 1) or did not complete the diaries and failed to respond to invitations to the follow-up interview (n = 3). Consequently, the final sample of participants comprised nine adolescents (8 girls and 1 boy) aged from 12 to 22 years old at the point of consent (Mean = 15.7, SD = 2.8), all of whom described themselves as White British. Participants reported pain for a mean duration of 58 months (median = 37 months, range 15-120 months, SD = 40.9), with a mean pain intensity of 6.25 (range 3-9, SD = 2.1) at time of asking, on an 11-point numerical pain rating scale. All participants were in full time education. See Table 1 for further participant details.

| Procedure
Following University of Bath (ref  and UK National Health Service ethical approvals (IRAS 237547), potential participants were approached during their assessment for an NHS tertiary pain service in England (UK) between July 2018 and February 2019.
Participants were approached if they were aged 11-25 years old, assessed by the clinicians to have chronic pain (ie, pain lasting at least 3 months), and be sufficiently literate in use of the English language to be able to complete the study tasks. Interested participants were introduced to the researcher and completed assent or consent procedures via email and post. Eligibility criteria for inclusion in the final sample also included the completion of at least one of the two longitudinal elements of the study, that is, either completing the second interview or providing at least six diary entries (with at least one diary from each quarter of the year). Due to competing educational academic pressures, we did not require participants to complete all 12 diaries. The final data set comprised 60 diary entries and 18 interviews, providing a total of 78 sources of data. All participants completed both interviews, and six participants also completed at least six diaries, with at least one diary from each quarter of the year (mean = 10 diaries, range = 6-12). Interviews were transcribed verbatim and checked for accuracy by an independent reviewer. During their time in the study, three participants received intensive pain rehabilitation, with the other participants either receiving outpatient treatment or no treatment from the NHS tertiary pain service. See Table 1 for further details regarding treatment. Most interview data, and all diary data, were collected prior to the COVID-19 pandemic.

| Measures
Participants completed basic demographic information and were interviewed remotely due to in-person interviews being impractical given the geographically diverse participant sample. Telephone interviews were used as these provided the most accessible option for remote interviews at this point in time. After completing the interview, participants were sent an online qualitative diary for a period of 12 months. Online diaries took the form of a survey using Qualtrics (online survey tool, see Qualtrics) 18 . See Table 2, for examples of questions included in the interviews and diaries, with Appendices A-C providing the full interview schedules and diary format. Following the final diary, participants were contacted to arrange the second interview where they re-confirmed their assent/consent prior to the interview. Participants received a £15 online shopping voucher following the first interview, and a £20 voucher following completion of the diaries and second interview.
The combination of interviews and diaries allowed us to gather rich, detailed data comprising both verbal and written responses, which detailed the participant's experiences throughout the course of a year. Diaries allow for the convenient near-time personal record of difficult to access perceptions, including the opportunity for reflection before disclosure. 19,20 In contrast, the interviews gave participants the chance to reflect on their experiences overall, and on their past, present, and perceived future. The interviews also provided a more conversational style. 21

| Analytical approach
We adopted a critical realist stance to analyses, which assumes an objective reality, accessible only through the subjective lens of experience and research. 22 We used the inductive reflexive thematic analysis approach outlined by Braun and Clarke [23][24][25] to analyze the interview and diary data. Reflexive thematic analysis has a well-established history of use within a critical realist paradigm for the analysis of interview and diary data. 19,22 To address the ing the initial stages of data familiarization, inductive coding, and initial theme development. Initial coding and theme development took place using NVivo, 28 and initial themes were then entered into the temporal matrix shown in Figure 1 (see Appendix D for worked examples). This temporal matrix demonstrated how the initial themes were represented throughout the data at each time point. In conjunction with discussions with two co-authors (ALJ and LC), the temporal matrix was then used to further develop the themes, which were subsequently entered into a new matrix.
We completed this iterative cycle several times, with each cycle refining the themes, which were then finalized through discussion with all authors.
As noted above, most data were collected prior to COVID-19 and related restrictions. However, Helen's second interview was conducted very shortly after the implementation of UK lockdown restrictions which began in March 2020. In this interview, Helen was asked to focus on her experiences pre-COVID, and distinctions were made between life "now" (ie, during lockdown) and "before"

| Quality in qualitative research
Ensuring a high quality and robust analysis was a priority throughout, with several specific considerations relating to credibility, transferability, dependability, and confirmability. Credibility, which relates to the results being a fair representation of the phenomena under investigation, 29 was partly achieved through the use of multiple sources of data. The use of two forms of data collection, and data collected at multiple time points increased our confidence in the accuracy of the record of participant experiences over time.
Additionally, the data analysis process itself included credibility checks through the use of the trajectory matrices and co-author checking at various points. Related to credibility, confirmability concerns the extent to which the results are grounded in the data, 29  In addition to the considerations outlined above, reflexivity regarding the active role of the researcher is a key component of reflexive thematic analysis. 24 To ensure that such reflexivity was present throughout the analysis, the first author (AFJ) had regular

Example interview questions (self and independence) Example diary question (friendships and social life)
• TA B L E 2 Example questions from interview schedule and diary meetings with ALJ and LC to discuss the analysis. Themes were then finalized in discussion with all authors. As the first author (AFJ) recruited and interviewed all participants, reflexivity regarding this unique relationship with the data was considered throughout the analyses. Finally, reflexivity requires researchers to be aware of their position in relation to their participants and the data. 24 Participants were approached at the point of assessment with a clinical team by the lead author, AFJ, a researcher with a background in psychology who is a mid-30s white woman with no visible disabilities and who also conducted all data collection and was therefore the "face" of the study. In relation to author's positionality regarding the data, all authors are aware that due to circumstances (eg, age) we are not part a part of the group from which the data originates. Additionally, the research team has extensive experience in the scientific study of adolescent chronic pain.

| RE SULTS
Analyses of interview and diary data generated one overarch-

| "The shifting sands of peer relationships"
This subtheme explores changes which occurred in participant's relationships with their peers, and how they often lacked control over such changes. All participants reported loneliness as a result of their pain. For many, this was due to the time-intensive and multifaceted nature of efforts adolescents made to self-manage their pain, placing constraints on their physical and mental functioning. This finding is congruent with a growing body of research showing developmental advantages associated with chronic pain. 6,7,13 Interestingly, tension between pushes and pulls may exist both

ACK N OWLED G M ENTS
We would like to thank the Pain Relief Foundation for funding this work, staff at the Bath Centre for Pain Services who supported participant recruitment, our research assistant Karl Mears and placement student Megan Armond for their support with transcription.

CO N FLI C T O F I NTE R E S T
The authors report no conflicts of interest.

Introduction
Hello, I am Abbie Jones. I am PhD student at the University of Bath looking at the impact of chronic pain on young people. As part of this study, I am interviewing young people who experience pain, and their families. We will complete an interview with you now, and again in a years' time. You have given your consent to take part in this study, but you are welcome to withdraw at any time and without giving a reason. Taking part does not have an effect on the clinical care you receive, and I will not share any information you give me with the clinical team. However, if you tell me something which makes me concerned for the safety of yourself or someone else, I will need to pass this on to appropriate people, and I will tell you if I need to do that. This interview will last approximately 30-50 min, but we can stop at any time, or have breaks if you would like. If you don't understand a question, please tell me. If, I ask you a question that you do not want to answer, please do let me know and I will move onto the next one. Is there anything you would like to ask at this point?

Family and home life
In this section, we are asking about your experience of family and home life over the past month.
• Can you describe your relationships with your close family over the past month?
• Can you tell us about how you have felt about your relationships with your family over the past month?
• What activities did you do with your family over the past month?
• How did you typically communicate with your family over the past month?
• What do you tend to talk about with your family in the past month?
• Can you tell us about any effects that your pain has had on these relationships over the past month?
• Can you tell us about any worries you had around your relationships with your family over the past month?

Friendships and social life
In this section, we are asking about your experience of friends and social life over the past month.
• What contact have you had with your friends over the past month? (eg, what activities, spending time together, phone calls, social media, seeing at school/university/work) • Can you tell us about times over the last month when your pain got in the way of friendships, and in what ways?
• How have you felt about your friendships over the last month?

Education and work
In this section, we are asking about your experience of education and work life over the past month.
• Can you tell us about how things have been at school/university/ work over the last month?
• How did you feel about yourself at school/university/work over the past month? This could include how much you enjoy your work, how much you feel you achieve at work, how much you feel part of a team, etc.
• Can you tell us about the activities you took part in at school/ university/work over the past month?
• Can you tell us about any activities that you weren't able to take part in over the past month because of your pain?
• How were your relationships with your classmates/colleagues over the past month?
• Can you tell us about any worries you had about school/university/work over the past month?

Being you
In this section, we are asking about your experiences around your identity and sense of self over the past month.
• How do you feel that your pain has affected how you felt about yourself over the past month?
• What things did you enjoy doing over the past month? Can you tell us about any ways your pain affect things?
• How much control did you feel you had about what you do, and in making decisions about your life over the past month?
• Can you tell us about any ways your pain affected the control you had and decisions you made over the past month?
• What do you think about how your pain may affect your future day-to-day life?
• What do you think about how your pain may affect your future overall life plans?

Other areas
Is there anything else you would like to tell us around how you feel about yourself, your place in the world, your relationship with others, or how you feel you are developing, and how your pain affects this?
Thank you for completing this month's diary and sharing with us your experiences and insights. If you have any questions, please email kotstudy@bath.ac.uk. We will send you the next diary at the start of next month, but if there is something that you would like to tell us about between now and then, you can send it to us over email, on Facebook, on Twitter, or on Instagram.
If you have any questions about the study, you can contact the researcher on the details below. If this study has raised issues that you would like some support with, here are details for some organizations which may be able to help.
Researcher contact details Abbie Jones (PhD Student at the University of Bath) A.jones@bath.ac.uk 01225 386982 Pain concern www.painc oncern.org.uk 0300 123 0789 (please see website for helpline opening hours) Away with pain www.awayw ithpa in.co.uk There is a specific section for young people with ongoing pain on the website Samaritans www.samar itans.org jo@samaritans.org Call: 116 123