Relationships between informal caregiving and family dynamics within the experience of chronic illness

: Stories from Maltese Context

Abstract

Chronic neurological conditions such as multiple sclerosis, muscular dystrophy
and cerebral palsy often lead to visible impairments that have a devastating
impact on both the patient and the family. With advancement in technology and
hospitals becoming more targeted to deal with acute medical care, more people
with chronic neurological illnesses are living in the community. Family members
play an important role in providing informal care to these individuals. This
research project aimed to learn about the impact of informal family caregiving on
family dynamics within a context of chronic neurological illness in Malta.
A literature search that was carried out prior to data collection identified some
research around distinct areas of interest in relation to this study. A vast amount
of the literature that was retrieved considers the impact of chronic illnesses on
the patient or on family members. However, this search suggested that studies
about how informal caregiving impacts the family dynamics is very limited.
A qualitative approach using narrative inquiry and case studies was the method
used to collect the data. Six families participated in this study. The primary family
informal caregiver and another family member from each family were interviewed
twice. The stories these participants narrated were written in six case studies,
each of them representing one family.
The resulting five main themes presented a discussion about the complex
relationships within family dynamics, the emotional aspects of caregiving,
spirituality and meaning making, the physical burden of caregiving, and the
influences from outside the family on caregiving experiences. These findings
highlight that there are both general and unique aspects for each family providing
the holistic patient care. This study calls for an interdisciplinary approach that
addresses health and social care from an individualized family-centred
perspective. Recommendations for education, policy, and research based on this
care approach were made.

Date of Award	23 Jan 2024
Original language	English
Awarding Institution	University of Bristol
Supervisor	Tim N Bond (Supervisor), Ioanna Bakopoulou (Supervisor) & Helen Manchester (Supervisor)