Mastering chronic illness while growing up: the experiences of young adults and the advice they give to their contemporaries
Lead Research Organisation:
UNIVERSITY OF EXETER
Department Name: Sociology and Philosophy
Abstract
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Organisations
Publications
Heaton J
(2016)
'Rule your condition, don't let it rule you': young adults' sense of mastery in their accounts of growing up with a chronic illness.
in Sociology of health & illness
Heaton J
(2015)
Use of social comparisons in interviews about young adults' experiences of chronic illness.
in Qualitative health research
| Description | The main achievements of this research have been to generate new insights into the ways in which young adults self-manage chronic illnesses. This has resulted in: 1. New empirical findings showing the importance to young adults of being in medical control of their condition and having autonomy - the capacity to self-rule and live a 'normal' life unconstrained by their condition. What this study found was that, across the condition groups, the young adults had different views on how to achieve these goals. Some thought that achieving good medical control through adherence was the key to retaining their autonomy; others saw the relationship between control and autonomy to be independent, non-linear and potentially conflicting. Their strategies for managing their condition and their advice to others reflected these different conceptualisations, which were based on what they had learned from their experiences of growing up with a chronic illness. 2. Original applications of some of the concepts and tools from the science of complexity theory to better understand the mundane complexity of living with and managing a chronic illness. This shows how young adults variously adapted to and learned to manage their condition as they grew up, and the factors that affected their control and/or autonomy (including puberty; pregnancy; transitions in education and health services; support from friends and family; variations in the effectiveness and side-effects of medications). 3. Innovative use of social comparison theory to examine how young adults' compared and contrasted themselves with three different reference groups in interviews that were conducted to collect first-hand accounts for sharing with others via an online health education resource. 4. A methodological exemplar of the secondary analysis of archived qualitative data, including: use of datasets from three national studies; collaboration with the primary researchers; and involving young adults in an advisory capacity. 5. A methodological exemplar of the combination of thematic and narrative methods of qualitative data analysis used in the study. |
| Exploitation Route | This research has important implications for our understanding of how young adults self-manage various chronic illnesses. The findings suggest that whether or not young people and young adults adhere to their medical regime is a complex problem. The science of complexity potentially provides a new theoretical framework for studying how people variously adopt, adapt and resist different ways of managing conditions in the shifting contexts of their everyday lives. The findings also support the need for further research on 'minimally disruptive medicine' and the 'burden of treatment', in order to learn more about how healthcare interventions can be better integrated into people's everyday lives and made more acceptable in terms of promoting both control and autonomy. For healthcare policy makers and practitioners, and the pharmaceutical industry, this research suggests that they need to move away from a linear approach that is traditionally centered on promoting control through better adherence (eg to medications), towards a tailored, multi-pronged approach that: 1. Supports individual young people to not only achieve control of their condition but also to retain their autonomy. 2. Helps build their capacity to adapt to the myriad factors which influence their control and/or autonomy while growing up. 3. Uses patients' accounts of their experiences of living with a chronic illness as a means of helping others understand and deal with the complexity, uncertainty and individual nature of the experience. |
| Sectors | Healthcare Pharmaceuticals and Medical Biotechnology |
| URL | http://www.guci.org.uk |
| Description | A number of academic and economic and societal impacts have arisen so far from both the ways in which the research was conducted and the knowledge produced through it. These are described below in relation to the areas listed in the RCUK Pathways to Impact diagram. 1. Enhancing the Research Capacity, Knowledge and Skills of the Public + Increasing Public Engagement with Research and Related Societal Issues: In the course of the study I involved a small group of young adults as advisors on my project. They provided advice on my ongoing analysis at a workshop, and commented on a report of the discussions. The young adults came from different areas of the UK. Through this engagement, there were mutual benefits to me, in terms of improving the robustness of the analysis and accessibility of the findings. It also provided the young adults with an opportunity to be involved in a research project, shape the emerging findings, and to enhance the quality and wider impact of the work. One of the young adults was subsequently in touch asking how he might publish his own autobiography. More generally this work added to mine and the participants' experience and capacity for engaging with patients and the public in research, and demonstrated how this can be done in the case of a qualitative secondary analysis using archived datasets. 2. Innovative methodologies, techniques and cross-disciplinary approaches: In this study I used a novel approach to qualitative data analysis, which was to combine and integrate thematic and narrative methods of analysis. This approach was shared at the Methodology Innovations conference in 2012. As the work developed I drew on Complexity Theory in the data analysis. A paper on the former has been prepared for publication and is under review. In it I suggest that this multi-disciplinary theoretical framework can be used to help interpret the ways in which people adopt, adapt and resist therapeutic regimes. An unexpected finding that emerged from the work was that people used social comparisons in various ways to represent their experience of chronic illness to the audience of their accounts (extracts from which were available online for the public). A paper on this topic has been published in an international, peer-reviewed journal, in which I advance existing (mainly psychological) work on social comparison theory by proposing a new sociological perspective based on the empirical work carried out for this project. In the project I also set up and liaised with a group of people from academia, NHS and voluntary sectors in the UK. They provided advice at meetings and through consultation when needed. Through one healthcare professional I was able to inform a network of health care professionals working with adolescents about the research through an online publication she edited. Members of the advisory group also provided feedback on the analysis as it developed and advice on relevant places in which to publish the work. They also highlighted the potential for developing an online tool for the education and training of healthcare professionals based on a metaphor used in the study. 3. Worldwide academic advancement: Since the award concluded I was invited to join the international Scientific Advisory Board (SAB) of the Data, Infrastructure, Methods of investigation in the Social Sciences and Humanities (DIME-SHS) project in France. This is a collaboration of 7 organisations in France, coordinated by Sciences Po. The experience and skills I gained from this award, and from my previous work on the secondary analysis of qualitative data funded by the ESRC, have enabled me to contribute to this venture, which aims to develop resources for archiving and reusing data from the social sciences and humanities in France. 4. Enhancing the Knowledge Economy + Training Highly Skilled Researchers + Improving Teaching and Learning: Website - During the study a project web site (www.guci.org.uk) was developed where people could access information about the study. The GUCI web site also contains links for members of the public interested in accessing web sites where people share their stories about their experiences of illness, as well as links to further information and resources for academics planning to carry out a secondary analysis of qualitative data. Between 1/2/2011 and 28/2/2013, the website was visited 615 times by 389 people. Visitors were from the UK (68%), USA (12%), Canada (3%) and Australia (2%). Note: some data on subsequent visits was not available for a period after the website was transferred to a new address. Papers - I have so far prepared three papers from the award. Two have been published and one is currently under review. One of the papers (published by invitation in the Sage Research Methodology Cases) was aimed at post-graduates, lecturers and early-career researchers and aimed to improve their understanding and capacity for undertaking qualitative secondary analyses using archived data (eg through the UK Data Archive and Timescapes). Teaching - In 2012 I was invited to give a guest lecture for the Introduction to Qualitative methods 1-week course run by the University of Oxford. The lecture was on the secondary analysis of qualitative data and used the present study as an example of such a project. The audience was made up of post-graduates and early-career researchers from around the UK. Workshops - In 2013 I was invited to give a Novella seminar and run a workshop at the Thomas Coram Research Unit, Institute of Education, University of London on the secondary analysis of qualitative data. In the workshop we discussed how to develop and design a qualitative secondary analysis using archived data. I drew on my experience of the present study to inform the discussion. In 2013 I was also invited to talk at an invitation-only workshop hosted by the Health Experiences Research (HERG) group at the University of Oxford on promoting the secondary analysis of qualitative data. The event included senior academics from around the UK and representatives from the UK Data Archive and Timescapes, as well as previous users of the HERG datasets. The event led to a paper by Sue Ziebland and Kate Hunt published in the Journal of Health Services Research and Policy in 2014 on using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy. Collaborations - Immediately after the award period, I sought to build on the collaboration established with the University of Oxford by preparing a bid for an MRC Methodology Research Fellowship that followed up some of this work. The bid was short-listed but unfortunately it was not funded. I am still keen to seek further funding to follow up this award. Possible collaborators include colleagues from the University of Oxford and University College London. |
| First Year Of Impact | 2010 |
| Sector | Education,Healthcare |
| Impact Types | Societal Economic Policy & public services |
| Description | 'Control and resistance: young adults' sense of mastery in their accounts of growing up with a chronic illness' |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | There was a good discussion after the talk. Some members of the audience stayed afterwards and we further discussed issues arising from it. These included colleagues I had not met before, who had similar interests. The feedback from the meeting gave me and my co-authors the confidence to develop the paper into a possible publication. |
| Year(s) Of Engagement Activity | 2012 |
| Description | A potted and personal history of the reuse of data from qualitative studies |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | An invited presentation given as part of a 1-day workshop on Qualitative Secondary Analysis organised by the Oxford Health Experiences Research Group. It was held at the Dept Primary Care Health Sciences, University of Oxford, on 7 November 2012. The audience was by invitation only. It included researchers who had experience of qualitative secondary analysis and of archiving qualitative data. The information that was shared improved mutual understanding of how qualitative had been and could be better used in secondary analysis. It also helped HERG at the University of Oxford to develop an educational course on the secondary analysis of qualitative data, launched in 2013. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Combining thematic and narrative analysis in qualitative data analysis: a worked example from the growing up with chronic illness (GUCI) study |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | The talk was very positively received and sparked a great discussion. People got in touch afterwards to ask if I had published it yet. Not yet. I am hoping to write it up for publication in due course. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Designing a secondary analysis project using archived qualitative data |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | This was a workshop I designed and ran for a mix of senior and early-career researchers at TCRU after a seminar I gave earlier in the day. It was interactive, where participants created an outline research proposal for a study involving the re-use of archived qualitative data. The participants reported they found it provided helpful insights into the issues involved in designing a study for reusing archived qualitative data. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Research watch : mastering chronic illness while growing up : the experiences of young adults and the advice they give to their contemporaries |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Article in Adolescent Resource Newsletter. This is a newsletter of the Young Peoples Health Special Interest Group (YPHSIG) of the Royal College of Paediatrics and Child Health. Edited by Dr Janet McDonagh, Clinical Senior Lecturer in Paediatric and Adolescent Rheumatology, Birmingham Children's Hospital NHS Foundation Trust. Under 'Research Watch' an abstract of my study is publicised. The article raised awareness of the study. |
| Year(s) Of Engagement Activity | 2011 |
| URL | http://www.dreamteam-uk.org/upload/Microsoft%20Word%20-%20May%2011%20newsletter.pdf |
| Description | Reusing qualitative data to examine young adults' experiences of growing up with a chronic illness |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Invited presentation as part of the TCRU/NOVELLA Seminar Series to researchers at Thomas Coram Research Unit (TCRU), Institute of Education, University of London. It was attended by around 30 people, some of whom attended a workshop I gave later in the day. After the event, I received some good feedback from the person who had invited me to give the presentation and run the workshop. Audience welcomed information on the source of data I had used for my research, and the insights provided into designing similar studies using this and other sources of secondary qualitative data. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Secondary analysis of qualitative data : an illustrated overview |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Around 20 people attended this guest lecture, while attending the residential Introduction to Qualitative Research Methods course, University of Oxford. People learned what qualitative secondary analysis is and how it has been and could be used for various research purposes. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Summary report of GUCI study |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | The summary was prepared to provide a wide audience of researchers, patient groups and the public with early access to the findings. Positive feedback was received from those who reviewed it prior to publication. |
| Year(s) Of Engagement Activity | 2013 |
| Description | What can policy-makers learn tom the messages and advice young adults' give to their peers in interviews about their experiences of growing up with a chronic illness? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A small number of people attended this talk. Those who did were pleased that my talk related to younger people with chronic conditions, as the conference was mostly about older people with long-term care needs. I made contact with a researcher with similar interests to mine. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Workshop for young adults |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | The workshop was held on 14 June 2012 in Oxford. Four young adults took part, from the north, midlands and south of England, and three researchers. We listened to extracts from the interviews on the YouthHealthTalk website and discussed the different ways in which people talked about feeling in or out of control of their condition, and how they balanced looking after their condition with other priorities. The participants were asked how they would describe and classify the talk about control and mastery in the extracts using a selection of categories the researchers suggested, and to explain why they thought the categories they chose applied. The participants agreed with many of our provisional classifications and where they didn't this seemed to point to a lack of clarity or tightness in our definition of the categories rather than lack of agreement over the interpretation of the content. The researchers used the feedback to develop the analysis and write it up for publication. The participants were all invited to attend the final advisory group meeting in October 2012 and they kindly offered to help provide further advice and support if desired. The feedback from the participants helped the researchers to improve the analysis of the data and write up the findings. A summary of the findings was written in a language that was more accessible for them. |
| Year(s) Of Engagement Activity | 2012 |