Freedom of choice and decision-making in health and social care

Abstract

Dementia, November 2006, 5: 479-502. Sammendrag:People with dementia represent a significant and growing proportion of patients, but little is known about their involvement in making choices about their health or social care. This study explored the experiences of French older patients with dementia and their caregivers about their participation in decision-making. Individual semi-directive interviews were conducted with patients (n= 21) and their primary carer focusing on a recently made decision (to accept professional help at home, to attend a day centre, or to move into residential care). Five aspects of decision-making were explored: information received; being listened to; expression of opinion; time allowed to reflect on decision; and possibility of changing one's mind. Carers tended to be more satisfied than patients on most criteria. Many patients felt they had not been listened to sufficiently, and had limited freedom to participate in decision-making. Continuing education may help professionals to improve their ability to involve patients with dementia in decision-making concerning their care arrangements.Omsorgsbiblioteket har ikke tilgang til å publisere dette dokumentet i fulltekst. Kanskje ditt lokale bibliotek kan hjelpe deg, eller kanskje du kommer videre med lenken nedenfor.

How do persons with dementia participate in decision making related to health and daily care? A multi-case study

“…Health professionals can more actively seek the opinions of the family rather than those of the person with dementia [15] or empathize with family members and form alliances against the person with dementia or exclude them from making decisions [13,14]. Another possibility is that the person’s wishes are overridden by the wishes of the family in spite of support from professional caregivers.…”

“…There is evidence that people with dementia in institutions as well as people living in their own homes in the community are excluded from making decisions about their lives [13-15]. Some do not wish to participate in decision making [16], whilst others have the will and the ability to participate but are not given the chance [1,17].…”

The Association between Freedom of Choice and Effectiveness of Home Care Services

“…They may also be unaware of the fact that they are entitled to choose or at least to express their opinion [1843] or of what the service supply contains. Therefore, information intended for these clients should be communicated to them in different ways in order to account for differences between them [10]. This result emphasises how important the role of the person assessing the service need is to the client’s quality of life.…”

“…Older persons are exposed to a higher risk of being excluded from information because information might not be available in a form suitable for them, or it may not be sufficiently well targeted to them [18]. However, older persons are capable of expressing their opinions and providing meaningful points about their care [10]. …”

“…Previous empirical literature on the topic has demonstrated how freedom of choice impacts the effectiveness of social services [8910]. However, there is no previous research available on the association between freedom of choice and the effectiveness of home care services.…”