Tímarit hjúkrunarfræðinga - 2020, Page 101

ritrýnd grein scientific paper
tímarit hjúkrunarfræðinga • 3. tbl. 96. árg. 2020 101
Aim: The elderly population is growing in Iceland, and informal
caregivers, spouses or daughters assist about a third of them. In
this situation, the relatives can experience a burden, which can
negatively affect their physical and mental health. However, re-
search has demonstrated benefits of education and support for rel-
atives. The aim of the study was to explore daughters’ experience
of being caregivers of a parent with a functional decline and their
need for education.
Method: This was a qualitative phenomenological study. Partici-
pants were 12 adult daughters of parents who had a functional de-
cline and lived at home. Data was collected with semi–structured
individual interviews and analyzed using the systematic text con-
densation method of Malterud.
Results: Two main themes emerged. The first theme, multifaceted
caregiver strain, was divided into psychological distress, such as anx-
iety, physical discomfort manifesting in energy deficiency, and
limited social participation manifesting in parents assuming assist -
ance. The second main theme, uncertainty, included three themes,
the first one being difficult information search which showed that
it was difficult to access information. The next theme, need for ed-
ucation, counseling and support, revealed that support from family
and friends was most helpful. The last theme, navigated informa-
tion source, described the need for access to health professionals
and information in one place. The daughters also expressed need
for education and counseling from professionals, which could
partly be provided online.
Conclusions: The results strongly suggest that the daughters ex-
perience psychological, physical, and social distress related to their
parents’ care. Furthermore, the daughters had much need for ed-
ucation and counseling as they experienced uncertainty related to
being unfamiliar with the formal care system and inaccessible in-
formation.
Keywords: Frail elderly, daughters, caregivers, education, well-
being, burden.
Correspondent: bjarnadottirfjola@gmail.com
English Summary
Bjarnadóttir, F. S., Thórarinsdóttir, K., Svavarsdóttir, M. H.
What should I do — to whom should i refer?
Daughters’ experience of caring for elderly parents: Multifaceted caregiver strain and uncertainty