Coping with mental illness

: examining the experience of former young carers of people with severe mental illness

Abstract

Introduction: Research has explored the factors that contribute to caregiving and subsequent support needs, and the stress process model has been used as a theoretical framework for adult carers of people with a severe mental illness (SMI). However its applicability to a population of young carers looking after someone with SMI is yet to be explored. The aim of this study was to identify a theoretically informed model for young carers of those with SMI as a guide for the future development of more supportive interventions for this group of carers. 
Method: The thesis was based on a constructivist approach, which took into account multiple perspectives, including the researcher’s own lived experience. A focus group discussion with 10 participants and in-depth interviews with 14 participants were conducted, from a sample of 23 young people with experience of caregiving for a relative with SMI. The data collected on young carers was retrospective, since the participants were all former young carers, and some were also young adult carers. Additionally, the interventions suggested were fed back to a nominal group with 4 of the interviewed participants, and individual interviews with 7 young carer support workers were conducted. The thesis was structured on the Medical Research Council (MRC) guidelines for developing complex interventions which suggests the following elements as part of the development phase: (i) identifying the evidence base; this was done via systematic review, (ii) developing theory; qualitative methodology was used, (iii) modeling process and outcomes; the data informed a stress process model for young carers. 
Results: (i) Identifying the evidence base: A systematic review of interventions for children, siblings and young carers of people with SMI was conducted to identify the evidence base for effectively supporting this population. 14 studies were identified as relevant and a narrative review undertaken to incorporate differently designed studies. There were few high quality studies focused on those whose parents have affective disorders, and no studies found of family members with psychosis. (ii) Developing theory: Data from the qualitative study were analysed using thematic analysis. The contextual factors and stressors which are present need to be considered for the outcomes of a young person providing care. A range of emotional, information and instrumental support needs of a young person caring for somebody with a severe mental illness were found to be important. (iii) Modelling process and outcomes: Using the stress process model as an example, an adapted model for young carers of those with SMI was proposed. 
Discussion: As evidenced previously, young carers of those with SMI have somewhat different needs from adult caregivers. Young caregivers also need different amounts of support at different stages, particularly age appropriate information. It is suggested that any intervention would need to consider the likelihood that some young people without caregiving responsibilities and who do not live with the person with SMI might also need support, corroborating the need for a whole family approach. The thesis provided a relevant theoretical framework within which to plan interventions for this population, and provides tentative support for the hypothesis that increasing coping and social support will mediate better outcomes. The results from the qualitative study are discussed in comparison with the literature for adult caregivers of people with SMI and other young caregivers, as it was found that current support did not ensure better outcomes. The limitations and strengths of the study are discussed and the thesis concludes with implications for practice and policy. While it adds to the evidence and argument for a whole family approach to supporting young carers, it also has importance for the development of interventions for this population, such as specific information, recognition of the role and its impact, both by services and in educational settings, and the need for a range of support particularly other family/confidante support. There is an urgent need for these kinds of support for this neglected group of carers.

Date of Award	1 Jan 2016
Original language	English
Awarding Institution	King's College London
Supervisor	Joanna Price (Supervisor) & Elizabeth Kuipers (Supervisor)