The impact of disease on the lives of family members [Abstract]
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Abstract
There is evidence that family members of patients with chronic conditions
experience impaired Quality of Life (QoL) themselves and
there is a link between the QoL of patients and that of their family
members. Family Quality of Life is an area which has been largely
overlooked and the majority of previous research has been focused
on dermatology, oncology and patients with physical and mental
disabilities. To date, no study has been carried out to investigate
the impact of disease on family members of patients across a wide
range of medical specialties. The aim of the study was to explore
the impact of disease on family members of patients across a wide
range of specialties. Semi-structured interviews were carried out
with family members of patients from 25 different specialties,
including dermatology. After obtaining informed consent, family
members were invited to talk in detail about different ways that
their own lives had been affected by having an unwell relative.
Interviews were audio-recorded and transcribed. 117 relatives
of patients suffering from over 80 chronic medical and surgical
conditions were interviewed. Many of the themes mentioned by
relatives were common throughout the study, but the extent of
the impact was often much greater than reported previously. This
was especially evident in the area of emotional impact, where
family members talked about the difficulties of hiding their
emotions in order to provide support for the patient. Important
themes mentioned were problems with time planning and organisation,
financial impact, family relationships, effect on sleep
and the health of the family member, and the great impact on the
social life, hobbies and daily activities of the family. Many of
the relatives also said that they had never been given the chance
to talk about these topics before. The impact of disease on family
members of patients is widespread and profound. Consideration of
this aspect of QoL will potentially allow for more appropriate care
of patients and their families