Family Care and Health Care

Afza.Malik GDA

Role of Family In Health Care

Family Care and Health Care

What is Family Care,What are Include In Family Care,Parents Bond to Child,Formal Care Givers and Family Interlinking,Grand Parents and Care Aspects,Spouse Will Chronic Illness,Research Findings.

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.


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