Caregiving Interactions and Behaviors in the Care of Children with Rare Genetic or Undiagnosed Conditions

Abstract

Previous literature documented that interpersonal strain arising from caregiving roles can negatively impact caregivers’ health and well-being, and interpersonal support can buffer this association. Using a social network approach, we evaluated interpersonal strain due to malfeasant and nonfeasant care-related interactions and behaviors and interpersonal support through uplifting care-related interactions and behaviors. We investigated whether caregivers’ perceptions of network members’ malfeasant, nonfeasant, and uplifting interactions and behaviors were associated with caregivers’ expectations regarding social network members’ involvement in caring for a child with a rare or undiagnosed disease. Qualitative data was further utilized to explain how caregivers interpret these concepts. One hundred sixty-six (n = 166) primary caregivers providing care to 104 relatives diagnosed with a rare genetic or undiagnosed disease were recruited through ongoing research, advocacy groups, and family referrals. Caregivers provided information about 2,806 familial network members and interactions with them. For each network member, perceived contribution to caregiving and whether the contributions met caregivers’ expectations, and interactions representing nonfeasance, malfeasance, and uplift were assessed. Confirmatory factor analysis for malfeasance, nonfeasance, and uplift demonstrated high construct validity for each and construct correlations were significant. Caregivers reported that network members whose care role contribution did not meet expectations were more likely to engage in malfeasance and nonfeasance (Odds Ratios range between 0.02 and 0.09, ps < 0.001); whereas network members providing uplift were meeting caregivers’ support expectations (OR = 1.98; p = 0.024). Thematic analysis demonstrated that respondents’ expectations of each network members’ care role involvement derived from social roles and attributes of both the network members and the child. These findings can inform strategies that maximize opportunities for interpersonal support and minimize interpersonal strain.