Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process

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Abstract
Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. Methods Online, arts-based interactive workshops were held with people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Results Themes identified were: Getting the Process Right, Lack of trust as a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process. They felt that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes, as reflected in the recommendations, would be carried out. Suggestions were made for improving the ReSPECT process for people with a learning disability and used to develop resources to support ReSPECT planning. Conclusions Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system regarding treatment of people with a learning disability.
Funding Information
  • Arts and Humanities Research Council (AH/X009505/1)
  • Health and Social Care Delivery Research (13/13/16)
  • National Institute for Health and Care Research (NIHR205211)
  • Wellcome (219754/Z/19/Z)

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