Summary Report: The Transitions that Matter Project
Introduction
One of the complexities of social care is that people’s lives and their care needs change over time and are therefore in motion. People age, their health and disability status can fluctuate, and the things they want out of life can change. Care itself is a dynamic, inter-subjective process and the relationships that people have will alter over time. Therefore, the aim of this research was to understand the role of transitions across the life course in shaping people’s experiences of care, and how these could be improved.
We carried out interviews with working-age disabled people living in the community and their unpaid carer or paid care worker. The interviews aimed to explore the concept of transition, but with fluidity about how this term was interpreted. We looked at the data through the lens of care convoys. A ‘care convoy’ is a group of people travelling through life as a care network of social relations.
Methods
Ethics
The project gained ethical approval from the University of Birmingham [ERN_23-0454]. Disabled people and carers were involved in the research from the outset. Members of the University of Birmingham Lived Experience Panel (LEP) reviewed draft interview topic guides and the participant information sheet to improve them. The researcher collecting data was mentored by two disabled people from the LEP for the purposes of maintaining ethical and inclusive research throughout the project.
Participants had to be at least eighteen years old and be able to provide consent; all were sent a Participation Information Sheet and Data Consent form before being interviewed.
The participants, the interviews and their life transitions
Eight pairs of participants participated in the research; all are living in England and were recruited through different people and organisations in the community. The disabled participants’ ages ranged from thirty-two to fifty-seven; five were females and three were males. The unpaid carers and care workers’ ages ranged from twenty-six to sixty-eight; four out of seven were females and three were males (one male carer supported two of the disabled people in the research). The participants are of different ethnicities, ranging from those of an English heritage, to Caribbean, Irish and south Asian heritage.
The interview topic guides were semi-structured so that participants could talk about the transitions that matter to them. A total of twenty-four semi-structured interviews were carried out; two interviews each with the eight disabled people (the second interview being approximately two months after the first interview) and one each with the eight carers/care workers. The interviews were audio recorded, with the permission of the interviewees. The audio files of interviews were sent to a transcription company that has a confidentiality agreement with the University.
The transitions that people spoke about were many and varied: moving home; moving a care package; getting a new assistance dog; undergoing a Direct Payments (DP) review; recruiting care workers; applying for and receiving Access to Work support; becoming a mental health advocate; improving one’s I.T. knowledge and skills; taking up regular exercise; getting back into education; getting a new job; moving to England to escape war; health changes (e.g., menopause, diabetes, mental health problems); changes in medication; going into hospital (e.g., for mental health support); and a family member passing away.
Findings
Through the analysis of the interview data we identified four themes: (1) how people conceptualised ‘transitions’ and ‘care’ that matter to them; (2) lack of progression; (3) empty care convoys; and (4) mutual support.
(1) How people conceptualised ‘transitions’ and ‘care’ that matter to them
People conceptualised ‘transitions’ and ‘life changes’ in different ways. For example, gradually becoming disabled, getting diabetes, undergoing bereavement, etc. were viewed as a transition(s) because these elements have led to changes in (i) how people view themselves and life, (ii) coping with physical bodily changes, and (iii) coping with their day-to-day lives. Furthermore, often the transitions are interconnected and complex, with a strong element of different emotions involved in the given transition processes.
(2) Lack of progression
Many of the participants had made or were seeking to make major changes in their lives. This included moving to a new country, accessing work or higher education, or relocating within the UK. There were also societal barriers that led to a lack of progression.
(3) Empty convoys
We had initially asked the disabled participants if we could speak with up to five people in their formal or informal support network. The idea was to develop a holistic picture of that network which could be mapped using the care convoy model. However, people often could only name one person who they worked closely with who they would be happy for us to talk to in relation to their transitions. The participants did have convoys of support around them to some extent, however, when undergoing a transition there was usually only one person who acted as an ‘anchor’ in navigating the transition. In this sense, their convoy of care was relatively empty in relation to the transitions they were undergoing.
(4) Mutual support
Disabled people often support others who are disabled and not disabled – whether they be a family member(s), members in a support group, or people they work with as an advocate.
The four themes are connected. How people conceptualised ‘transitions’ and ‘care’ led to them seeking and receiving support as well as giving support to others in different ways during transitions. This was also connected with the other themes: participants sought the advice and assistance of other people and advocacy organisations when experiencing a lack of progress with their transitions.
Conclusion and policy recommendations
There are many ways that disabled people conceptualise ‘transitions’ and ‘care’ and attempt to initiate transitions. Disabled people and the carers/care workers within this study were able to exercise self-care and self-advocacy, draw from their existing care convoy and create familial and non-familial care convoys for the purposes of mutual support. They continued to tackle barriers and a lack of progression regarding transitions and care.
Recommendations for developing transitions and care oriented policies are:
- ‘Transitions’ and ‘care’ mean different things to different disabled people and carers/care workers. Therefore, it is worth having a fluid understanding and openness about this for different people whilst keeping in mind their emotional wellbeing when undergoing transitions and care. In turn, this has implications for (i) how legislation and policies are created in ‘transition friendly ways’, and (ii) how they are implemented/administered in ways that support the transitions that people want to make.
- Laws and policies ought to explicitly acknowledge the dynamic nature of people’s lives and care, with there being physical practices and spaces within services and communities to reflect this.
- Human beings need care and caring relationships and networks. When disabled people recruit care workers and/or seek to go into education, work, move home, get an assistance dog, etc. it is likely that they are also attempting to create a bigger and a more varied care convoy. For single disabled refugees with no family in their new country they may feel even more of a need to achieve this. Therefore, laws, policies and practices ought to reflect this in terms of humans’ need for caring relationships.
- Social networks and organisations such as charities and/or support groups need to provide the spaces and resources for mutual support to be created and maintained over time; they ought to be supported in this endeavour.
Acknowledgements
Our sincere thanks to the participants who came forward to contribute to this project.
We would also like to thank the members of the University of Birmingham Lived Experience Panel for their support with this work. Particular thanks to Ann Young, Nick Le Mesurier and Rupi Kaur for assisting with developing the interview topic guides and information sheets, and Ann Young and Nick Le Mesurier for their mentorship of Hayrunisa Pelge.
This research was funded by the Economic and Social Research Council-funded Centre for Care, https://centreforcare.ac.uk/ Award ES/W002302/1, with contribution from the National Institute for Health and Care Research (NIHR) (Department of Health and Social Care).
The views expressed are those of the authors, Dr. Hayrunisa Pelge and Prof. Catherine Needham, and not necessarily those of the ESRC, UKRI, NHS, the NIHR or DHSC.
About the authors
Dr. Hayrunisa Pelge
Dr. Hayrunisa Pelge has worked with disabled people / people with disabilities in various roles and organisations for twenty years now; spanning from special needs schools to family work to roles in universities and charities. Hayrunisa’s academic background is in psychology and research methods. Her Ph.D. focused on the inner lives of people on the ‘autism’ spectrum within the family context(s). She recently worked with Prof. Catherine Needham on the ‘Transitions that Matter’ project that is within the Centre’s ‘Care Trajectories and Constraints’ research group.
Professor Catherine Needham
Catherine Needham is Professor of Public Policy and Public Management at the Health Services Management Centre, University of Birmingham. Her research focuses on adult social care, including personalisation, co-production, personal budgets and care markets. She has published a wide range of articles, chapters and books for academic and practitioner audiences. Catherine led the Care in the Four Nations work package within the ESRC Sustainable Care team. She is now leading research on care systems as part of the ESRC Centre for Care and is also a member of IMPACT, the UK centre for evidence implementation in adult social care. She tweets as @DrCNeedham.