Role of Family In Health Care
What is Family Care
Family care is defined in many ways, dependent on the
study and approach and how it is applied in health care system policies or
regulations affecting support to family members. The role of the family in
providing care is considered a normative family role with the obligations and
responsibilities that go with such roles.
Family care as a normative role
includes that of a person caring for a child or the usual role relationships
with other members, such as a spouse.
Family care however, is also care that goes
beyond such a role and takes on the role of a health care provider as the
family member assists the individual with the tasks, duties, and
responsibilities required of one with a chronic illness, injury, or disability.
What are Include In Family Care
Research on family care includes the normal parenting
for the growth and development of children, care of children with disabilities,
care of children with chronic illness such as cancer or asthma, care of an ill
spouse, care of an aging and frail parent, caring for brain damaged adults, caregiving
for adults with dementia, and grandparents caring for children.
The care role
activities and demands on family members vary markedly depending on age,
relationship, and patient problems.
Parents Bond to Child
The parental care of an infant or child is considered
a normative patient role. Research in the normative areas examines
mother infant bonds or father infant bonds and relationships, parenting, and
the role of the parent in growth and development.
Recent activities include the
father more often, and examine the father-child bonds (Coleman & Garfield,
2004).
Some work looks at the role of the single parent with infants and
children, and follows the mother across time looking at parenting (Evans, M.,
2004; McCreary & Dancy, 2004).
The role that is difficult and assumes the
non normative role of the parent is caring for a child with low birth weight
and infants and children with physical or developmental disabilities. There are
also studies of parents with the provision of technological support.
Decisions
and normalization around children with disabilities and birth defects are also
present in the literature. The effort of the patient then is to try to
normalize the experience for the whole family (Deatrick, Knafl, &
Murphy-Moore, 1999; Sullivan-Bolyai, Knafl, Sadler, & Gilliss, 2004;
Sullivan-Bolyai, Sadler, Knafl, & Gilliss, 2003).
Consideration of time
away from school, social restrictions, fear of exacerbations, and uncertainty
about treatment evolve. Child, parent caregiver, and family outcomes in general
may be examined.
Parental concerns are about time management, child status,
finances, and family relations. Family hardiness, family functioning, family
stressors, and family need for knowledge to reduce uncertainty, are areas
reviewed in family care research.
Formal Care Givers and Family Interlinking
Formal professional caregivers must work in
partnership with family members of a child with a chronic and long-term
illness. Much of the research on family care of children with chronic disease
is related to the child with asthma, cancer, or diabetes.
Health care
professionals support the family by providing thorough advice, helping them to
cope, assessing perceptions, encouraging expression of feelings, and securing
resources (Kurnat & Moore, 1999). The environment, child, family view of
health, attitudes towards illness, everyday routines, and social network are
important.
The chronic illness must be normalized so that both the family and
child can have a positive quality of life (Miles, MS, 2003). Although a lot of
the research is related to quality of life of the parent and child, coping, and
adjustment, some recent models look at family strengths, assets, and resilience
rather than negative dimensions of care.
Care responsibilities of parents
include managing illness, coordinating resources, maintaining the family unit,
and maintaining themselves (Sullivan-Bolyai et al., 2003).
Grand Parents and Care Aspects
Recent research includes studies on grandparents
caring for grandchildren. Many of these studies are descriptive and identify
the distress experienced by those who provide care. Grandparents often care for
grandchildren with developmental disabilities, chronic illness, or HIV/AIDS.
Other care for children from dysfunctional families where a parent is not
responsible, abuses substances, abuses or neglects the children, and those
whose parents are divorced. Many of the grandparent family caregivers are older
and have chronic illnesses themselves, which puts them at risk for additional
health problems.
In addition, the multiple roles add to their stress and
distress. Grandparents who live on fixed in- comes may lack support and
respect, as well as experience emotional and financial strains (Green, S.,
2001; Fuller-Thompson & Minkler, 2001) from their care role.
Spouse Will Chronic Illness
For the spouse of the adult with chronic illness,
literature is limited for the younger spouses, although there is some work in
cancer, especially bone marrow transplants and hematological cancers (Langer,
Abrams, & Syrjala, 2003). Most of the spouse literature focuses on the
female spouse and relates to the older patient with chronic illness.
Most of
that research relates to dementia, stroke, and degenerative diseases such as
multiple sclerosis and Parkinson’s disease, with cancer being a more recent
focus (Palmer, S., & Glass, 2003; Bakas, Austin, Jessup, Williams, &
Oberst, 2004).
The definition of this care usually calls the person a family
career, and is defined as one who provides assistance with health-related tasks
for someone who is frail or chronically ill. Recent work includes other family
relationships, including men who care (Kramer, B., & Lambert, 1999; Kramer,
B., & Thompson, 2002).
The tasks of care provided by family members sort
out those that are direct tasks, and those that are subjective or less direct,
such as supervision for patient protection.
A variety of conceptual models have
been used to examine family care of the adult, but most have been built on the
stress and coping literature. There is concern that families may benefit from
skill building, which may be more beneficial than information and support
(Farran, Loukissa, Perraud, & Pann, 2004).
Research Findings
Literature also includes increasing research on
younger family members who care for the older parent or parent-in-law. Most
research on family care examines the role of the adult daughter (Chumbler,
Grimm, Cody, & Beck, 2003). Few studies exist that look at sons caring for
parents (Kramer & Thompson, 2002).
The mix of task and care activities and
response to that care seem to differ by gender, relationship, and age of the
caregiver. Care tasks provided by family members and concerns may center around
competence to perform tasks (Farran et al., 2004; Schumacher, Stewart,
Archbold, Dodd, & Dibble, 2000).
Males may not be comfortable with cooking,
cleaning, or community services, but females may find these activities normative.
Models for the adult children caring for a parent are likely built around
stress and coping, although a few models look at role theory (Sherwood, P., et
al., 2004).
The problem with family care literature is that most of the
outcomes for all ages to date have been coping, adjustment, and mental health
issues such as burden or depression. Only recently has there been research to
examine the health practices, health promotion, health status, and skill
requirements of the adult family member providing care.
Recent research has
begun to examine the long-term effect on family members who provide care, and
indeed, the mortality rate is higher than for the non-caregiver (Schultz &
Beach, 1999). The distress that family members experience for parent care is
determined by gender and age.
Women more than men and younger persons more than
older persons who are involved in family care, report more distress.
Methodologically, most of the early studies of family care are descriptive and
cross-sectional, and many still are. Recent studies of families providing
health care are beginning to include intervention studies.
These studies often
do not include a family frame-family. After evaluating the dying experience
against a well-defined universal benchmark of what constitutes a good death, it
would make sense to apply various independent variables, such as those that
have been touched on in the study by Baker and others.
The independent
variables might include testing the effect of SUPPORT interventions, examining
the differences between structure of care provided by same type institutions
and then versus other types, and then determining precisely which elements of
hospice care make it so much more effective in meeting the needs of dying
patients and their families.
Another variable to be examined is how
professionals in various disciplines are educated (or not) to address the needs
of the terminally ill. This variable was touched upon in the study by Stein
Hauser and others, but much more could be done to better understand the impact
of this component.
Caring for the terminally ill is an essential aspect
of professional nursing, and this review indicates that much research still
needs to be done to understand and appropriately care for the dying and their
families.