Title: Family based support to build capability and resilience in family carers of adults with learning disabilities and challenging behaviours: collaborative research.
Funder: Department of Health and Social Care

Abstract: Approximately 170 000 households in England live with an adult family member with a learning disability and behaviour that challenges. We know very little about such families although two recent studies (Griffith & Hastings, 2014; Burtcher 2012) plus experience of working with families, reveals that families constantly juggle day to day home life and the challenge of coping with their son/daughter s unpredictable behaviour. They do this against a background of strong commitment to being the provider of excellent emotional and physical care for their son/daughter and providing them with the broadest possible life opportunities. For family carers however this long-term, potentially disruptive environment, holds the potential for destabilising the family and leading to poor health/mental for other family members (IASSIDD 2014). There is very little training-based support for parents once their son/daughter becomes an adult and no known intervention protocol for training-based support activities. Research on training and support needs for parents, and the impact of training, is under-developed. This research will investigate what might underpin the effectiveness of an intervention designed to support parents in improving their resilience and hence the quality of life for themselves and as a consequence, their adult son/daughter. It aims to illuminate the key elements for effective family based support programmes (FBSP) for parents/family carers. The research will contribute to the development of theories for and understandings of: what parents need to help them stay resilient to the ongoing, long-term challenges of living with challenging behaviour what elements of an intervention, based on positive behaviour support (PBS) and acceptance and commitment therapy (ACT) are successful in supporting parents indicators for recognising success for training based interventions that aim to build resilience. Plan of investigation The research design is an iterative approach using qualitative participatory methods. Its focus is an FBPS Programme incorporating both PBS, an established approach for working with people with learning disabilities who exhibit behaviours described as challenging, fundamentally rooted in person centred values and ACT. ACT differs from traditional cognitive behavioural therapy in that rather than trying to teach people how to control their thoughts, feelings, memories etc it helps people to alter their relationship with stressful thoughts that act to evoke powerful emotional responses (Hayes et al 2012). It helps people to clarify and commit to what is important in their live (core values) and to develop specific skills in mindfulness (Teasdale & Chaskalson: 2011). Three sets of family members will be invited to participate in an FBSP that has been designed with the help of parents with the experience of living with adult sons/daughters with challenging behaviour. The research will be carried out by a mixed team of clinicians, parents and academics who will investigate: parent needs and expectations of undertaking a FBSP using PBS/ACT ongoing experiences in relation to participation, including recruitment to such a programme and retention the successful elements of such a programme and its impact key indicators for success of an FPBS The research approach will be qualitative, with the main elements being interviews and focus groups, facilitated by clinical, academic and parent researchers as appropriate. Parent participants and staff facilitators will also contribute to validating the findings through opportunities for shared dialogue about key themes and outcomes. Potential benefits to patients and the NHS. The policy of closing institutional beds and keeping people at home with families means that more people are living longer at home. The NHS is aware of families' need for support and is creating care pathways. This study would provide researched principles for providing effective support for families to maintain family well-being for on-going care.

Lay abstract: Background: Existing research highlights the physical and psychological impact of caring for someone with learning disability and challenging behaviour. Established interventions focus on supporting parents of children. Caring for an adult presents ongoing and additional challenges that can cause acute stress for carers. We know of no evidenced based interventions available for parents once their child reaches adulthood. Aims: To understand the basis of a successful training (intervention) from the perspective of parents, that supports the capabilities and resilience of parents caring for an adult son/daughter with learning disability and behaviour that challenges. The focus of this intervention is Positive Behaviour Support with Acceptance and Commitment Therapy with mindfulness as a key part. Design and methods and Patient and Public Involvement: We will use interviews and focus groups, designed with parents, to find out about the impact of this intervention and what makes it effective. The intervention will be repeated (x3) incorporating what has been learnt from each intervention into the next one. Parents have been involved in the development of the intervention and research. Three parents are members of the research team. Additionally parents participating in the research will be directly involved providing feedback on the intervention and articulating its impact. This will be central to the development of the final intervention protocol and the evaluation process. Dissemination: The research team (parents, clinicians and academics) are linked locally, regionally and nationally to a range of bodies and committees including the Challenging Behaviour National Strategy Group, The National Valuing Families Forum, NICE Guidelines Development Group for Challenging Behaviour in Learning Disability and NTW Trust Learning Disability Clinical Pathway Development. Findings will also be disseminated through conference presentations, academic papers and publications designed to reach parents and the range of people who support parents. There will be a web presence.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH