Entering and adjusting to a different and uncertain world: experiences and support needs of adult family members, partners and friends in England who care for an adult at risk of suicide
Background: Mental health services in England are dependent on family and friends to support patients who may be at risk of suicide. However, support for these informal caregivers is lacking despite evidence of caregiver burden, poor health outcomes, and difficult encounters with mental health services. Stigmatising experiences have been unearthed in qualitative studies although perceived stigma relating to suicidal behaviour has not been formally assessed in carers. To date, minimal research specifically investigating carers of adults at risk of suicide has been conducted in England and there is a dearth of mixed methods inquiry in the field. Aim: This exploratory mixed methods research aimed to develop an understanding of the experiences and support needs of adult informal caregivers of adults at risk of suicide. Methods: An online survey of 101 self-selecting adult carers of an adult at risk of suicide assessed perceived stigma of suicide attempt, quality of life and helpfulness of support services, as well as obtaining qualitative data on experiences and support needs. Semi structured interviews were carried out with 15 of the survey participants. Statistical analyses were conducted with quantitative data, summative content analysis was used for qualitative survey data and reflexive thematic analysis for interview data. The three data sets were integrated, and, through a process of abduction, mixed methods interpretations were achieved. Results: The overarching theme of ‘entering and adjusting to a different and uncertain world’ was generated, with uncertainty being the main response of carers. The finding of uncertainty is explained by the Uncertainty in Illness Theory. Carer uncertainty was acute on entry to the different world, enduring in the longer term, and inherent in perspectives on the future. Uncertainty manifested emotionally, psychologically, interpersonally and behaviourally, was perpetuated by difficult encounters with healthcare providers, and had detrimental effects on mental and physical wellbeing. Stress was propagated by lack of support from mental health services, which were the least helpful support agency. Perceived stigma was inversely associated with carer support, caring choice and carer stress, and accounts indicated experiences of provider-based stigma. Carers demonstrated an adept ability to balance uncertainty with hope, which helped them to tolerate uncertainty and sustain their caring role. Identified support needs included recognition, information and education, authentic collaboration and tailored peer support and psychosocial interventions. Conclusion: The Uncertainty in Illness Theory provides a helpful framework for caregivers and clinicians to make sense of carers experiences including how uncertainty can be perpetuated by healthcare providers. This understanding should be used to inform coproduced resources and interventions for carers and education for mental health clinicians. There is a need for further research with this population of carers, particularly longitudinal studies, with a view to developing and evaluating tailored psychosocial interventions to help carers tolerate the longstanding uncertainty caring for someone at risk of suicide entails.
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