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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

Open access

Rechten:

Samenvatting

Objective To explore how people with dementia, their
informal caregivers and their professionals participate
in decision making about daycare and to develop a
typology of participation trajectories.
Design A qualitative study with a prospective,
multiperspective design, based on 244 semistructured
interviews, conducted during three interview rounds
over the course of a year. Analysis was by means of
content analysis and typology construction.
Setting Community settings and nursing homes in the
Netherlands.
Participants 19 people with dementia, 36 of their
informal caregivers and 38 of their professionals
(including nurses, daycare employees and case
managers).
Results The participants’ responses related to three
critical points in the decision-making trajectory
about daycare: (1) the initial positive or negative
expectations of daycare; (2) negotiation about trying
out daycare by promoting, resisting or attuning
to others; and (3) trying daycare, which resulted
in positive or negative reactions from people with
dementia and led to a decision. The ways in which
care networks proceeded through these three
critical points resulted in a typology of participation
trajectories, including (1) working together positively
toward daycare, (2) bringing conflicting perspectives
together toward trying daycare and (3) not reaching
commitment to try daycare.
Conclusion Shared decision making with people
with dementia is possible and requires and adapted
process of decision making. Our results show that
initial preferences based on information alone may
change when people with dementia experience
daycare. It is important to have a try-out period so
that people with dementia can experience daycare
without having to decide whether to continue it.
Whereas shared decision making in general aims
at moving from initial preferences to informed
preferences, professionals should focus more on
moving from initial preferences to experienced
preferences for people with dementia. Professionals
can play a crucial role in facilitating the possibilities
for a try-out period.

Toon meer
OrganisatieHogeschool Windesheim
AfdelingDomein Gezondheid en Welzijn
LectoraatGoed Leven met Dementie
Gepubliceerd inBMJ Open Vol. 2017, Uitgave: 7, Pagina's: 1-13
Datum2017-08-25
TypeArtikel
TaalEngels

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