The health consultation experience for people with learning disabilities: A constructivist grounded theory study based on symbolic interactionism

摘要

Aims. The aim of this study was to explore the effects of the health consultation experience for people with learning disabilities, particularly in terms of their self-conceptudBackground. Annual health checks have been introduced as a reasonable adjustment for health providers to make in meeting the needs of people with learning disabilities, who experience significantly poorer health outcomes than the general population. Evaluation of the health consultation from the service user perspective can inform this service provision.udDesign. A constructivist grounded theory approach, based on symbolic interactionism, was used to explore the meaning of the health consultation experience for the person with learning disabilities, and its effects on their sense of self.udMethods. Purposive and snowballing sampling was used to recruit 25 participants with learning disabilities through a GP practice, self-advocacy groups and a health facilitator. Nine individual interviews, three interviews with two participants, three focus groups (n=7, n=5 and n=3), and an audio-recorded health check consultation were carried out (with two participants interviewed twice and four attending two focus groups), as well as a member check used to assess the resonance of the findings. Data collection was undertaken in different primary care trusts across the north west of England. Data were subjected to constant comparative analysis, using a symbolic interactionist approach, to explore all aspects of the health consultation experience and its effects on the self.udFindings. Current expectations, attitudes and feelings about health consultations were strongly influenced by previous experience. Participants negotiated their own reality within the consultation, which affected their self-concept and engagement with their health care. Respectful and secure health professional – service user relationships, developed over time, were central to an effective consultation. Perspectives on the consultation, and engagement within it, were co-constructed with a companion, who could help to promote the personhood of the service user with support from the health professional. Anxiety, embarrassment and felt stigma were identified as significant barriers to communication and engagement within the consultation.udConclusions. People with learning disabilities have similar health consultation needs and expectations to other people, but may have more difficulties in engaging with the process and building trusting relationships with the health professional, due to previous negative experiences, anticipated stigma and loss of self within health settings leading to a fear of disclosure. This, combined with difficulties in communication and cognitive processing, results in less satisfactory outcomes persisting over time. The effects of triadic consultations are generally positive, particularly where relatives or health facilitators are involved. However, continuity of companion as well as health professional is needed, and more service user engagement should be supported. Fundamental attitude change by health professionals, supported by specific educational initiatives to enhance their understanding of the service user perspective, is needed to reduce health inequalities. Participatory research by people with learning disabilities should inform future health care practice.