'Standing up for Myself' (STORM): Development and qualitative evaluation of a psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma.

BACKGROUND: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. METHOD: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2-4 months after the intervention assessed perceived impact. RESULTS: Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self-efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre-existing self-advocacy skills was noted. CONCLUSIONS: This early-stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.

Caregiver experiences of supporting adults with intellectual disabilities in pain.

BACKGROUND: Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain-related behaviours and report them, but little is known as to how they experience their role. METHODS: Information was collected from 11 caregivers using semi-structured interviews about their experiences of caring for adults with intellectual disabilities who were suspected or definitely in pain. Transcripts were analysed using Interpretative Phenomenological Analysis. RESULTS: Six superordinate themes were identified from participants' experiences: suffering in silence; searching for meaning to explain the complaint; knowledge and skills needed to recognize and manage pain; perceptions of the pain experience; acting to try and reduce pain; and the emotional impact of pain. CONCLUSIONS: There seems an art to detect pain using existing skills and knowledge of the individual's ways of expressing pain. Despite best efforts, recognizing and treating pain was experienced as complex and ambiguous. Some caregivers described a negative emotional impact and dissatisfaction with the management of pain by health care services.