Development and Validation of the Carer Adaptation and Resilience Scale (CARS), Assessing Personal Recovery, Resilience and Growth for Carers of Those with Psychosis and Schizophrenia

Hilton, Claire and Sellwood, Bill and Jones, Steven (2025) Development and Validation of the Carer Adaptation and Resilience Scale (CARS), Assessing Personal Recovery, Resilience and Growth for Carers of Those with Psychosis and Schizophrenia. PhD thesis, Lancaster University.

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Abstract

Abstract INTRODUCTION: Caring for a relative with a diagnosis of psychosis or schizophrenia can be challenging and emotionally demanding, often with little training or support in managing difficult behaviours. Family carers provide invaluable support to their loved ones and save health services substantial amounts of resources. It is vital to support family carers so that they can support the service user they care for. To provide effective support it is important to gain a holistic view of carers’ experiences. An under-researched area relates to the concept of personal recovery for carers. Personal recovery mainly relates to how service users experience personal or social recovery despite still experiencing symptoms. By understanding carers’ experiences of personal recovery for themselves, we can promote this positive adaptation. OBJECTIVES: The main objective of this PhD was to explore personal recovery for carers and to develop a new outcome measure to evaluate it. METHODS: Personal recovery was explored by operationalising the concept for a carer population based on key literature. Mixed methods were employed to explore the concept of personal recovery using an exploratory sequential design. The exploratory phase of the PhD included a systematic review of relevant literature and a series of qualitative interviews with carers. The findings were then used sequentially to inform the development of a new outcome measure using cognitive interviews, and finally to validate the new measure by conducting a psychometric evaluation of the quantitative data gained from the larger questionnaire study. RESULTS: the systematic review of recovery related outcome measures showed no single measure is available to assess this for carers. In-depth qualitative interviews found that carers did not relate to the term personal recovery, however different facets of recovery were experienced such as acceptance, adaptation, resilience, and personal growth. This deviation from the expected findings showed the inductive nature of the qualitative study, and those results informed the development of the Carer Adaptation and Resilience Scale (CARS). The draft CARS was developed in conjunction with carers through a series of cognitive interviews. The validation study showed the CARS has a clear factor structure and good reliability and validity. CONCULSIONS: These findings expand our knowledge of carers’ experiences, highlighting factors that could contribute to positive adaptation, resilience, and personal growth, and provide a way to quantify this.