In the final post of 2019, three Masters students in the School of Sociology and Social Policy at the University of Leeds write about their applied project research. Their contribution is prefaced with a brief introduction by Professor Sarah Irwin, programme lead for the MSc Inequalities and Social Science.
The applied projects, an option on the MSc Inequalities and Social Science programme, are dissertations developed in partnership with non-academic organisations. They have enthused students and provided them with meaningful opportunities to contribute to policy development. The projects have also been of real practical value to the community partners. Below Natalie Aldridge, Dean Hanley and Zoe Maggs present summaries of the aims, insights and policy relevance of their research.
Taking a relational caregiving perspective, Natalie analysed the lived experiences, values and practices of older carers, and their challenges and support needs in navigating complex caring transitions. Dean researched the experiences of young people who are not in education, employment or training (NEET), their difficult and often chaotic biographical pathways and third sector strategies for supporting them towards desired employment outcomes. Zoe examined the experiences of people with learning disabilities who are claiming Universal Credit under the new ‘Help to Claim’ arrangements. She analysed the troubling consequences of unsuitable and inaccessible information and makes recommendations for improved claimant support for this group.
This important research undertaken by Natalie, Dean and Zoe exemplifies our School’s commitment to having research at the heart of student learning, strengthening our links with city communities and contributing to related policy and practice.
‘Older people caring: Giving voice to untold stories’, by Natalie Aldridge
“People say to me ‘why do you visit him every day?’ and I say well because that’s what I want to do… I want to see him every day. I find it more stressful not to go really.” (Grace caring for her husband)
In the context of an aging population, the provision of care for older people holds increasing relevance and concern to social policy in the UK. Statutory care provision is supported by vast levels of unpaid care, much of which is delivered by older family caregivers who support their loved one through multiple stages of change and experiences of transition (Independent Age, 2015). Carers Leeds, an independent third sector organisation providing guidance and support to unpaid carers, wanted to better understand the challenges faced by older carers. Through an applied project partnership, I developed a research project exploring older people’s lived experiences of navigating complex and distressing familial caring transitions, the impact on their lives and identities and their associated support needs. I interviewed older carers who were experiencing pivotal caring transitions, for example, after their care recipient’s admission to hospital or a formal care destination. I argue for a conceptualisation of relational caregiving as well as for the prioritisation of older carers’ health and wellbeing. My research has produced academic insights and outcomes that are relevant to policy and practice.
A review of the literature revealed the dyadic nature of identity maintenance and construction into and through older age (Hellstrom 2014) and the associated relational impact of familial caregiving (Pini et al 2014). Building on these themes, my data analysis allowed a conceptualisation of ‘relational caregiving’ to develop, showing that many features of an older family caregiver’s role are profoundly linked to the dyadic identity they share with the care recipient. This is further demonstrated by my participants’ experiences of psychological impact arising from personal distress interwoven with their loved one’s deflected anxieties. Demonstrations of apparent grief, guilt, distress and anxiety appeared to manifest in participants during key transitional points, such as their loved one’s diagnosis or a move to residential care. Services’ apparent under-appreciation of these relational factors can prove challenging for carers in this context.
The literature also revealed the inequalities and challenges faced by older people and suggests older caregivers are likely to be balancing their own health needs with caring commitments (McGarry and Arthur 2001). In my study, participants displayed neglect of major personal health needs in order to maintain a caregiving relationship and role, presenting implications for the sustainability of rising numbers of older carers (also see Age UK, 2017). Age-related challenges became more apparent during my analysis of the logistical impact of caring, as reduced mobility, energy levels and travel options impact on care decisions and carer wellbeing during key transitional points, such as their loved one’s hospitalisation. By specifically considering older carers’ experiences and needs, holistic insights into their challenges emerged from the research findings.
To facilitate the study’s applicability to policy and practice, I translated my academic analysis into several policy recommendations related to staff training, support for carers and professionals’ communications with carers. Dissemination involved presenting to a diverse audience from the public, private and third sectors by utilising the project partner’s professional networks. This engagement with the sector proved invaluable to my final academic submission. Because this research has led to further dissemination, new networks and the potential to contribute to the project partner’s evidence base, the project has presented further opportunities for me to deliver impact across the sector.
‘From crisis point to turning point. Young people’s experiences of NEET support services in Leeds’, by Dean Hanley
In England, young people aged sixteen or seventeen are legally required to be in some form of education or training. However, in February 2019, 9.9 per cent of this age group in Leeds (and 5.5 per cent across England) were not in education, employment or training (NEET) (Department for Education, 2019). There is considerable concern about this socially excluded group. For example, being NEET can have a deleterious impact on wellbeing, increase chances of substance abuse or criminal activity and negatively impact long-term employment and life prospects (Public Health England 2014).
I began my Masters in Inequalities and Social Science intending to write my dissertation on barriers preventing disadvantaged young people from achieving in the workplace. Fortuitously, the MSc programme was offering the chance to conduct an applied research project with Young Lives Leeds, the forum in Leeds for third sector organisations working with children, young people and families. The project focused on young people who have multiple, complex problems and consequently get one-to-one support with the aim of enabling them to re-engage in education, training or employment. Conducting the research in partnership with Young Lives Leeds, I developed the project research questions:
- what events or processes led to NEET status?
- what further barriers prevent re-engagement?
- what differences do young people feel support services have made to their lives?
I accessed young adult participants through NEET support services and ran in-depth qualitative interviews to understand their experiences. For the young people in this study, NEET status was a beast with a long tail that stretched into their past. It was a crisis point which they had often reached after being overwhelmed by waves of chaotic, often unaddressed, problems in their private lives. Their situation was exacerbated by limited structural opportunities and insufficient access to guidance on education and labour markets. Participants also had a lack of ‘bridging social capital’ (Putnam 2001) that could be converted into opportunity in the workplace. They described being so overwhelmed by their crisis point that they retreated from social life into inactivity and poor mental health.
Young people valued one-to-one support based on their personal circumstances. By building a trusting relationship with NEET support workers they were able to begin to overcome personal barriers, obtain support from a network of relevant support agencies and get a better understanding of opportunities open to them. The relationship with the NEET support worker also broadened a young person’s ‘horizon for action’ (Hodkinson et al 1996), a field of view, comprising structural opportunities, personal dispositions and cultural influences from which young people make decisions about their lives. As young people’s decisions about their future working life are based on information falling within the horizon for action, increasing their understanding of opportunities open to them helped them to turn a crisis point into a turning point by enabling them to plan ahead, for the short and long term.
However, despite their successes, NEET support services cannot change the wider structural or socio-cultural factors shaping social exclusion. Therefore, for them to have maximum impact they will need to be part of a broader NEET strategy that includes pre-emptive measures, better information, advice and guidance and work experience opportunities, improvements to the youth training and labour markets and continued support after young people re-engage with education, employment or training.
Working in partnership with Young Lives Leeds offered an opportunity to turn an academic interest into a practical piece of research. It has led to the creation of two policy papers that the forum are using in discussions with local stakeholders to demonstrate the kind of support that young people say is of most value to them. However, the partnership was also vital to the success of the research itself. It provided access to NEET support services, which in turn acted as gatekeepers, building trust in the research among potential participants and providing important insights into the day-to-day work of NEET support workers. Most crucially, it provided access to research participants who were generous enough to talk openly about personal experiences, their impact on their lives and how they were drawing on support to try to shape a positive future for themselves.
‘Not an easy read: the experiences of people with learning disabilities claiming Universal Credit’, by Zoe Maggs
Following a government decision to end local councils’ ‘Universal Support’ service, which aimed to help benefit claimants make and maintain applications for Universal Credit (UC), the Citizens Advice Bureau (CAB) received £39m in government funding to set up “help to claim” as its replacement. We know from previous research that the experience of welfare reforms can be particularly difficult for people with disabilities, but how much do we know about how these developments are affecting those with learning disabilities? I conducted an applied project in collaboration with Chapeltown CAB to probe this question in a local setting. Alongside qualitative interviews with people with learning disabilities, this research explored recent policy developments and trends pertaining to work, conditionality/sanction-rates and UC. The findings and outcomes of this research will ensure that CAB can more appropriately support this particular social group.
Examination of the Valuing People Now policy demonstrates that the Department for Work and Pensions (DWP) does not have a robust process for identifying people with learning disabilities under UC, and as such any reasonable accommodations and extra help which may be available at a policy-level are not necessarily implemented or actualised in practice. Secondary research found reports of individuals being denied access to phone-based applications, even when they identify as learning-disabled.
Insights are lacking in terms of the sanctioning rates that are applied to those with learning disabilities under UC. However, my research found that this demographic is often subject to the same degrees of welfare conditionality as other claimants both in principle and practice. Valuing People Now’s stance of ‘presumed employability’ seeks to treat people with learning disabilities as if they are individuals without impairments, and experiences shared during interviews with participants in this research largely map onto those found in other studies of non-disabled people’s experiences of welfare reform.
Due mostly to a lack of accessible information, my research found that the new requirements of UC are not sufficiently flexible to the needs of people with learning disabilities. Despite being prompted five years ago by Dr Litchfield to make benefit applications accessible to this group via Easy-Read documents, the DWP have not implemented this for UC. According to both secondary and primary data analysed for my research, inaccessible information is the main cause of late and reduced payments for people with learning disabilities, sometimes resulting in devastating consequences such as homelessness.
Under UC, individuals are required to accept a ‘Claimant Commitment’ that outlines steps they are expected to take to move towards paid work, or seek higher earnings if they are already in work but not earning above a given threshold. My research found that people with learning disabilities are not benefitting from the flexibility which an ever-evolving Claimant Commitment could offer them under UC. The claimants I interviewed highlighted feelings of fear, anxiety and confusion when talking to their case managers and work coaches about changing their commitments to suit their needs. There was also some evidence of coercive techniques being used by case managers and work coaches that troubled the notion of informed consent for claimants with learning disabilities.
The DWP’s unwillingness to provide a meaningful definition of ‘vulnerable claimants’, as well as the fact that information regarding the claimant’s right to shape their commitment is not available in easy-read format means that, though the opportunity of flexibility may exist in principle, it is not being realised in practice.
Conducting this research has been of real, practical benefit to the Chapeltown Citizen Advice Bureau (CCAB). I have been able to recommend that CCAB should lobby government to provide easy-read applications for people with learning disabilities, and this is acutely relevant now that government are funding CAB to provide “help to claim” nationally. I also recommended that until easy-read applications are made available, CCAB should give people with learning disabilities guidance on the meaning of UC’s application questions, to help this demographic avoid giving ‘false’ information simply because they have misinterpreted the questions. As a broader recommendation, this project also showed that CCAB should focus heavily on the role, process, and rights of this demographic in terms of their claimant commitments and the availability of reasonable accommodations.
Hellström, I. 2014. “I’m his wife not his carer!”— dignity and couplehood in dementia. In Hydén, LC, Lindemann, H and Brockmeier, J. Beyond Loss: Dementia, Identity, Personhood. New York: Oxford University Press.
Hodkinson, P., Sparkes, A. C. and Hodkinson, H. 1996. Triumphs and Tears: Young People, Markets and the Transition from School to Work. London: David Fulton.
McGarry, J and Arthur, A. 2001. Informal caring in late life: a qualitative study of the experiences of older carers. Journal of Advanced Nursing. 33 : 182-189.
Pini, S, Ingleson, E, Megson, M, Clare, L, Wright, P, Oyebode, JR. 2018. A needs-led framework for understanding the impact of caring for a family member with dementia. Gerontologist. 58 Public Health England. 2014. Local Action on Health Inequalities: Reducing the Number of Young People Not in Employment, Education or Training (NEET). London: Public Health England.
Putnam, R. D. 2001. Bowling Alone. New York: Simon and Schuster Paperbacks.
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