Edinburgh Napier University

  Background: A significant number of adults with an intellectual disability (ID) live with a family member who often cares for them. ‘Mutual care’ has been defined as both the family carer and person with intellectual disabilities (ID) caring and supporting each other, and includes an element of practical and tangible support as well as potential emotional support. In situations where mutual care is occurring, both the person with the ID and the family carer have taken on a caring and supportive role, and are often interdependent on each other. However there is little research on mutual care in this population, or on the perspectives of health and social care professionals working with this population.
Focus of Project: This project explored the experiences of adults with an ID and family carers in relation to mutual care. This included the language used to describe mutual care, types of care adults with ID provided to their family carer, and how their mutual care developed. It also explored supports used, and barriers to getting support. This thesis analyses a subset of the data.
Method: Semi-structured interviews were used to explore the experiences of three adults with ID and three family carers. Interviews were recorded and transcribed. The data were analysed using Interpretative Phenomenological Analysis (IPA).
Results: For adults with ID, two master themes emerged; ‘Experiences of living with my ageing family carer’, and ‘Supports & Challenges’. Subordinate themes included; ‘Changes in my role’, ‘Changes in my parent’s abilities and health’, and ‘Barriers and difficulties’ - such as a lack of knowledge of available supports. For family carers, the two master themes that emerged were ‘Our roles living together over time’ and ‘Support, barriers and difficulties’. Subordinate themes included ‘Changes in our roles’, ‘Shared tasks’, and ‘An uncertain future’.
Discussion: Key findings are summarised, along with reflections from this project. Finally recommendations for clinical applications, and future directions for research are discussed.