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