Evaluating a community nursing service: listening to the voices of clients with an intellectual disability and/or their proxies

Abstract

The aim of this study was to evaluate a specialist nursing service programme for people with an intellectual disability residing in the community. It is important to correct the imbalance in the literature that has neglected the voices of the clients themselves or denied expression by their proxies. The aim of the study was to gain a better understanding of matters of importance for clients and their families and to involve them in the evaluation of a service that directly affects their care. Only three clients were able to participate; however, 17 parents (next of kin) agreed to be interviewed. In-depth interviews were audio-taped, transcribed and analysed relating to the questions asked and were checked against the domains of the nursing practice in the disability area: continuity of care, advanced nursing practice, education and credentialling, personal and professional attributes, primary health care, and normalization. The findings confirm the high regard in which the programme is held. Service evaluation is crucial in providing evidence for programme funders. The favourable outcome of this evaluation meant that the programme gained funding for another few years.

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

“…[51][52][53][54][55] The CBPR process allowed us to successfully adapt instruments to directly collect data from autistic individuals. To our knowledge, this is the first study to directly obtain data from autistic adults about their perceptions of unmet healthcare needs, patient-provider communication, and healthcare self-efficacy.…”

A cascade of disparities: Health and health care access for people with intellectual disabilities

“…Proxy reporting by direct caregivers has been implicated in substantial underreporting of problems, most dramatically for hearing and vision problems . Researchers have advocated for soliciting the input of people with ID [Koch et al, 2001] and several studies have looked at this specifically [Cea and Fisher, 2003;Schwartz and Rabinovitz, 2003]. These findings suggest that proxy reporting should only be used judiciously and with knowledge of its limitations.…”

“…Friedman and colleagues [1999], along with numerous other authors [Koch et al, 2001;Tuffrey-Wijne, 2003;Kerins et al, 2004], have called for the standard and systematic inclusion of intellectual and developmental disabilities in curricula for health care providers. Additionally, problems have been described in the transition from pediatric care to adult systems [Banta, 2004], with many efforts underway to address transition barriers.…”

“…A series of professional development articles on ID offer continuing education nursing credits in the United Kingdom on topics such as health promotion [Bollard, 2002], sexuality of persons with ID [Savarimuthu and Bunnell, 2003], and improving services for people with ID [Williamson and Johnson, 2004]. Koch et al [2001] advocate for the use of credentialed nurse consultants as case coordinators for persons with ID in Australia, to expedite proper diagnosis and improve access to treatment. Nehring [2003] documents the nursing role in the United States as it relates to persons with ID.…”

Primary health care provision for adults with a learning disability

“…Further research is required to establish how carers and people with learning disabilities themselves perceive health care in the community. People with learning disabilities are not routinely consulted about health service provision (Koch et al . 2001).…”