How to Provide Holistic Care for Disabled People Affect-ed by Prader-Willi Syndrome : A descriptive literature review
Joly, Gwendoline (2022)
Joly, Gwendoline
2022
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Julkaisun pysyvä osoite on
https://urn.fi/URN:NBN:fi:amk-2022090219794
https://urn.fi/URN:NBN:fi:amk-2022090219794
Tiivistelmä
Prader-Willi Syndrome was first reported in 1956 by Prader, Labhart and Willi as a genetic multisystem disorder with eating disorders, hormones deficiency, cognitive impairment, intellectual deficits and behavioral disorders.
Prader-Willi Syndrome (PWS) is quite unknown and rare. This rarity makes it harder to understand and de facto harder to take care of it from a nursing point of view. Studies show that nursing care is mostly done at home by family, and for adults with PWS care is mostly provided in home care centers. Usually, home care centers are not specialized in PWS, but general home care for people with disabilities. The fact that there is not special home care specialized for individuals with PWS may also mean that there is not appropriate nursing care regarding this syndrome. Nurses and caregivers are mostly taught to provide care for people with disabilities, but not very often specialized in certain care what individuals with PWS need.
The aim of this thesis was to put forward different kinds of care for disabled people having Prader-Willi Syndrome (PWS). The purpose was to do a literature review, to regroup and organize different studies and research studies regarding this syndrome, thus permitting to caregivers to provide holistic and appropriate care for disabled people affected by Prader-Willi Syndrome. As this syndrome is quite rare and unknown, an English descriptive literature review was done. Finally, to answer to the research question, 18 articles were analysed using inductive content analysis.
The results show that individuals with PWS may face different symptoms, such as obesity and behaviour problems. However, some support and care are possible, and caregivers need to know what the special needs of individuals with PWS are, to also help them in their work and in the support they provide for them. Some methods are available to offer the food security that individuals with PWS need, but also support methods are available for caregivers, regarding the psychological side of the syndrome, such as tantrums. There is some way to avoid them, and it requires knowledge from caregivers.
Prader-Willi Syndrome (PWS) is quite unknown and rare. This rarity makes it harder to understand and de facto harder to take care of it from a nursing point of view. Studies show that nursing care is mostly done at home by family, and for adults with PWS care is mostly provided in home care centers. Usually, home care centers are not specialized in PWS, but general home care for people with disabilities. The fact that there is not special home care specialized for individuals with PWS may also mean that there is not appropriate nursing care regarding this syndrome. Nurses and caregivers are mostly taught to provide care for people with disabilities, but not very often specialized in certain care what individuals with PWS need.
The aim of this thesis was to put forward different kinds of care for disabled people having Prader-Willi Syndrome (PWS). The purpose was to do a literature review, to regroup and organize different studies and research studies regarding this syndrome, thus permitting to caregivers to provide holistic and appropriate care for disabled people affected by Prader-Willi Syndrome. As this syndrome is quite rare and unknown, an English descriptive literature review was done. Finally, to answer to the research question, 18 articles were analysed using inductive content analysis.
The results show that individuals with PWS may face different symptoms, such as obesity and behaviour problems. However, some support and care are possible, and caregivers need to know what the special needs of individuals with PWS are, to also help them in their work and in the support they provide for them. Some methods are available to offer the food security that individuals with PWS need, but also support methods are available for caregivers, regarding the psychological side of the syndrome, such as tantrums. There is some way to avoid them, and it requires knowledge from caregivers.