Review: Research involving people with a learning disability - methodological challenges and ethical considerations

摘要

The population of children and adults with learning disabilities is changing, with more living into older age, some with complex multimorbid care needs (Maulix et al., 2011). As a result, many are high and frequent users of all care services, yet experience barriers to accessing healthcare appropriate to their needs (Alborz et al., 2005; Brown et al., 2012). Due to their pattern of health disease and multimorbidities, there is a need to ensure that all studies that receive public funding and ethical approval are inclusive of and accessible to people with learning disabilities. There is therefore an opportunity to ensure there is research undertaken about what works for this population. A learning disability is characterised by issues resulting from cognitive impairment which can impact on the ability of some to give informed consent (Cameron and Murphy, 2006). Many people with learning disabilities, particularly those with mild to moderate impairments, may be able to independently give informed consent; however, there are ethical issues that researchers need to consider, ensuring that this potentially vulnerable group is not exploited. This is important from a research perspective, with obtaining informed consent being a central part of the process (Iacono and Carling-Jenkins, 2012).