Quality of life as a concept for developing learning disability nursing practice?

Northway, Ruth; Jenkins, Rob

doi:10.1046/j.1365-2702.2003.00697.x

Cited by 18 publications

(13 citation statements)

References 33 publications

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“…More recent studies are examining the concept in the broader context of family life as a whole (Brown & Brown 2005; Jokinen & Brown 2005). Moreover, cognisance needs to be given to the fact that although research relating to the concept of QoL in healthcare has been extensive, its use in the field of intellectual disability nursing is relatively new (Northway and Jenkins, 2003). Much of the research to date has been qualitative in nature and has been conducted by community services, psychiatric, psychology and social study departments with few being nurse led.…”

Section: Quality Of Lifementioning

confidence: 99%

Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care

Caples

Sweeney

2011

Brit J Learn Disabil

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Accessible summary This article describes the findings of a small‐scale survey investigating the quality of life of parents of children and adults with an intellectual disability who are availing respite care with a response rate of 38% (n = 49). The findings of the study which was conducted in 2008 on parents’ experience of respite care in an Irish setting indicated that: Demand exceeds supply and many parents face a lengthy wait gaining access to respite care Respite care was not necessarily associated with parental desire for an improvement in quality of life The majority of parents reported that their quality of life was either ‘good’ or ‘excellent’ Further studies need to be conducted to establish what services are deemed most valuable to parents Summary Two‐thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., National Intellectual Disability Database Committee Annual Report 2006, Health Research, 2007). Use of respite care services by parents with a child/adult with an intellectual disability (ID) in Ireland is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Irish parents who care for their child/adult with an ID at home are not asking for the care of their child/adult to be taken away from them, but to assist them in this role and to help them to meet the demands of personal, family, social and work life, they need to be supported with reliable, flexible and responsive services (Redmond & Richardson, J Appl Res Intellect Disabil, 2003; 16: 205–218). Parents often have to negotiate complex barriers to access support services such as respite, health or social care (Sloper, Child Care Health Dev, 1999; 25: 85–99). Chadwick et al, (Child Adolesc Ment Health 2002; 7: 66–72) suggest that respite care was primarily regarded as a service that was provided to relieve parental burdens. This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care. The findings suggest that parents are experiencing ‘good’ to ‘excellent’ quality of life and that demand exceeds supply. More work needs to be carried out to establish what services are deemed most valuable to parents and to show how their needs can be met to the best of the Health Service Providers ability.

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Section: Quality Of Lifementioning

confidence: 99%

Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care

Caples

Sweeney

2011

Brit J Learn Disabil

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“…During the past decade, the concept of 'quality of life' has gained prominence in intellectual disability services, with a growing emphasis on the need for quality of life applications to be the basis for intervention and support (Schalock et al 2002. Whilst this is mostly hailed in the literature as a positive development, it can also be contentious, with concerns being raised that seeking to define 'quality of life' may lead to other people deciding what constitutes a good quality of life for people with intellectual disabilities, rather than empower people with intellectual disabilities themselves (Northway & Jenkins 2003). From this perspective too, then, ascertaining the views of people with intellectual disabilities themselves on end-of-life care is crucial, as they will be the experts on their own 'quality of life'.…”

Section: Introductionmentioning

confidence: 99%

Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end‐of‐life care provision

Tuffrey‐Wijne

Bernal

Butler

et al. 2007

Journal of Advanced Nursing

106

127

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“…The final set of studies in this section is associated with QoL research concerning marginalised groups. Rapley (2003) noted the way in which QoL has become a key factor in discussions of service quality, while Northway & Jenkins (2003) proposed that QoL continues to be a relevant concept for people supporting people with learning disabilities. However, this work has been dominated by psychometric approaches, which produce a whole range of philosophical and epistemological problems.…”

Section: Methodological Developments In Research Involving People Witmentioning

confidence: 99%

Involving people with learning disabilities in research: issues and possibilities

Gilbert

2004

Health Soc Care Community

138

134

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Advances in the social position of people with learning disabilities have led to a situation where research and evaluation studies are increasingly required to include the views and opinions of people with learning disabilities. One key outcome of this shift is that some of the major funding bodies now insist on the inclusion of people with learning disabilities as a condition of research funding. This has produced new possibilities and new challenges for researchers, and it has real consequences for people working in health and social care. The present paper sets out to explore some of the developments and challenges in research with people with learning disabilities. The author provides a selective overview of developments with the aim of demonstrating the richness, ingenuity and potential of research involving people with learning disabilities. The paper is divided into three broad sections that focus on: (1) the ethics and philosophy of participatory research; (2) the methodologies employed at particular points in the research process that are designed to ensure the involvement of participants in research; and (3) building capacity in participatory research as a precondition to the further development of this approach. An investment in capacity would enable this approach to move into the mainstream of research activity involving people with learning disabilities.

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Quality of life as a concept for developing learning disability nursing practice?

Cited by 18 publications

References 33 publications

Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care

Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care

Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end‐of‐life care provision

Involving people with learning disabilities in research: issues and possibilities

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