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Abstract
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Background
Over the course of their adult lives 17% of children will care for an elderly parent; many for their parents at the end of life (EOL). Even in the best of circumstances there is evidence that EOL family caregivers have tremendous unmet needs and are at significant risk for mental and physical illness, social isolation, and death compared to the general population. It is unknown if caring for a parent who was formerly abusive or neglectful during childhood compounds these risks and what might be done to improve caregiver outcomes.
Research Aim
The purpose of this study was to gain an understanding of the experiences of previously abused or neglected adult children who provide EOL care to a parent.
Methods
Utilizing a qualitative dominant mixed methods design, we conducted in depth interviews of 23 people who reported being maltreated as a child and cared for their parent during EOL. Basic demographic information, a modified adverse childhood experiences (ACE) questionnaire and the PROMIS-v.1.2 Global Health Scale was obtained. We triangulated our qualitative data with quantitative data to identify domains of abuse and neglect for further exploration in qualitative interviews.
Results
We identified several themes from the interviews: 1) Parental instability/self-absorption; 2) taking on adult roles during childhood leading to the development of a heightened sense of responsibility in adulthood; 3) disrupted sibling relationships affecting caregiving resources and functioning; and 4) lack of opportunity for disclosure of abuse and neglect history in EOL health care settings.
Conclusion
Findings from this study suggest that the experience of childhood abuse or neglect markedly complicates the experience of providing EOL care to a parent.
Implications for Research, Policy or Practice
Understanding this experience is essential to the development of supportive caregiver interventions. Assessment of family relationships and additional research are essential.
Language: en |