Family Caregiving
Family caregiving required a great amount of energy and effort whether the needs were for normative conditions or unpredictable situations. These routines pertained to the ways members interacted as mutual caregivers across the life course. Parents socialized children and adolescents about a wide variety of health related care modalities that included participation in health and illness care needs and supporting others when they had needs.
Aspects of family life pertinent to family caregiving included things like health teaching, member roles and responsibilities, balancing use of family resources, and providing support for illness care.
Caregiving seemed to assume different characteristics when the family encountered normative conditions versus what might be considered unexpected or unpredicted life events. Members were likely to define parameters of care and assume caregiving roles associated with systemic maturation in ways similar to their families of origin. However, when family caregiving demanded more than what was usually expected, then it seemed that families deconstructed old routines and reconstruct new ones.
Mothers with preschool children played more active roles in child caregiving and were more involved in caring for life aspects with health potential than fathers. Mothers had many sources of information that supported child needs, but mothers were often unprepared to assume the complex and responsibilities related to the household production of health. Family caregiving also included member actions needed to assist adherence to medical regimens; these routines included obligatory roles, responsibilities, and sometimes kinship rules. Members described greater stress burden when caring for individuals with chronic or terminal conditions and for members with disabilities.
Some family members noted that family misunderstandings sometimes occurred related to provision of physical or medically prescribed needs that resulted in less adherence to the prescribed regimen. For example, one family had a toddler that had experienced seizure activity and the father wanted to withhold her medicine. He did not think she really needed it and wanted to avoid the lethargy he had observed in two other children, but the mother thought the medication was necessary. The result was frequent heated family discussions about whether to use the medicine, increased internal tension within the family, and missed doses. Families with chronically ill or disabled members often describe member conflict and household stress as members vacillate between being supportive and indifferent.
Family routines may need to be restructured to adhere to prescribed medical regimens.
For example, when caregiving involved a dying member, many caregivers reported interrupted sleep, dietary changes, weight loss, and personal stress that occurred simultaneously with multiple family members. Responsibilities that extended for prolonged time periods sometimes meant adult children had roles and expectations to meet in the family of origin while they retained those in their primary household. Many spouses discussed variations in personal health routines and extreme stress during the time of the member’s illness and dying that continued into the bereavement period. Caregiving routines are an area where most families seemed to need the kinds of support and interventions that might be delivered through family-focused care.
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