Forty-eight mothers and fathers caring for a medically fragile child at home completed questionnaires and were interviewed about the impact of this caregiving on their family and about their relationship with home care professionals. Factors contributing to a positive parent-professional relationship were professional competence, genuine caring for the child, and respectful, supportive collaboration with the family. More hours of care provided by home health aides increased mothers’ strain with the professional caregivers; more hours of care from nurses increased fathers’ strain. Family cohesion, family organization, and support from the community reduced the amount of strain parents reported having with home care providers. Implications for training providers and reducing the negative impact of home care are discussed.
Patterson JM, Jernell J, Leonard BJ, Titus JC. Caring for medically fragile children at home: the parent-professional relationship. J Pediatr Nurs. 1994 Apr;9(2):98-106. PMID: 8027945.