Adaptation of informal care relationships following Acquired Brain Injury

Abstract

The number of informal carers in the UK is rising, yet the dynamics of care within informal care relationships remain poorly understood. The present research examined adaptation of informal care relationships affected by Acquired Brain Injury. The research addresses four pairs of questions: (1a) Are there any disagreements and/or misunderstandings between carers and people with Acquired Brain Injury (PwABI) regarding carer identity? (1b) How can the pattern of divergences be explained? (2a) Are there any disagreements and/or misunderstandings between carers and PwABI regarding PwABI identity? (2b) How can the pattern of divergences be explained? (3a) What strategies do carers and PwABI use in collaboration on a joint task? (3b) Is the type of input provided by carers on the joint task comparable to scaffolding as described in the child development literature? (4a) What happens when carers and PwABI collaborate to fill in the Disability Living Allowance (DLA) claim form? (4b) Why do carers see more disability than PwABI when filling in the DLA form? Four mixed-method data sets were used to answer these questions: (1) numerical ratings given by PwABI and carers to map out convergences and divergences (2) videos of discussions between participants and researcher during rating tasks (3) videos of carers and PwABI engaging in a joint task - planning inviting a friend or relative round for a meal and (4) videos of carers and PwABI filling in part of the DLA claim form. All data was collected from the same 28 PwABI/carer dyads who were two or more years post injury. Chapter 4 addresses questions 1a and 1b. Carers’ and PwABIs’ perspective ratings revealed a number of disagreements regarding carer identity. Carers perceived themselves negatively compared to their partners’ view of them. Regarding question 1b, carers feel negatively about themselves due to difficulties in the transition to the role of ‘carer’. They experience a lack of recognition for this caring role as a result of concealing the burden of care. Carers require more long term support from health services to help them achieve recognition for their role, such as facilitating attendance at support groups. Chapter 5 addresses questions 2a and 2b. Carers’ and PwABIs’ perspective ratings revealed only one disagreement and corresponding misunderstanding regarding PwABI identity. Regarding question 2b, alignment was found between the perspectives of carers and PwABI regarding PwABI due to the relational rating method used. It is carer identity which is the source of most divergences of perspective, not PwABI identity as commonly assumed. Using a relational rating method shows promise as a tool to explore perspectives as it treats all viewpoints as equal and avoids pathologising the perspective of PwABI. Chapter 6 addresses questions 3a and 3b. Analysis of strategies shows that completing a joint task is a collaborative process. Carers direct the background of the task but PwABI are in charge of the foreground, making task decisions. However, carers dominate the process and control where and how PwABI contribute. Regarding question 3b, the interaction meets the criteria for scaffolding in the strategies chosen and the flexibility of collaboration. However, removal of supports is often an unrealistic goal, leading to frustration in carers. Examination of processes of collaboration has elucidated the strategies used by carers and PwABI and can enhance theoretical discussion of the applicability of the scaffolding metaphor for a cognitively impaired adult sample. Chapter 7 address questions 4a and 4b. Disagreements were frequent when completing the DLA form. Contestations were almost exclusively in the direction of carers seeing greater disability than PwABI. Regarding question 4b, carers see greater disability due to the communication required to complete the form. Dyads are forced to confront disability, a pattern of interaction they avoid in everyday life. Carers marginalise PwABI point of view and position themselves as ‘expert’ on the PwABI. Differences in frames of reference regarding audience, aim and scope lead carers to maximise the disability and PwABI to minimise this. The impact of completing complex forms on relationships and identity needs to be considered during development of disability benefit assessment methods. A relational approach which studies both halves of informal care partnerships simultaneously allows us to go beyond outcomes of ABI and affords a greater understanding of processes of adaptation.