TY - JOUR
T1 - Improving Support for Care at Home
T2 - Parental Needs and Preferences When Caring for Children with Medical Complexity
AU - Foster, Carolyn C.
AU - Shaunfield, Sara
AU - Black, Laura E.
AU - Labellarte, Patricia Z.
AU - Davis, Matthew M.
N1 - Funding Information:
This study was funded by the Lucile Packard Foundation for Children's Health, Palo Alto, CA funded this study (grant no. 2017-00219). None of the authors have a financial interest in the subject matter within the submitted manuscript nor have a conflict of interest to disclose. This work has not been published previously, except in the form of an abstract at a conference, and it is not under consideration for publication elsewhere. All authors have contributed to the study design, data collection, and/or manuscript preparation; and approved the manuscript as submitted.
Publisher Copyright:
© 2020 National Association of Pediatric Nurse Practitioners
PY - 2022/3/1
Y1 - 2022/3/1
N2 - Introduction: We sought to characterize the current supports used by parents to care for children with medical complexity (CMC) at home and parental preferences for additional supports to meet identified gaps. Method: Semistructured interviews were conducted with parents of 18 CMC. Interviews were transcribed then analyzed using a constant comparative approach. Results: Extended family and community offloaded nonmedical tasks, assisted financially, gave emotional reinforcement, and cared for CMC. Home health providers also directly cared for CMC, but access and quality varied. Government programs paid for in-home care, but eligibility varied. Parents wanted more paid home care but also more support completing nonmedical tasks, mitigating financial strains, and accessing mental health services. Discussion: Parents of CMC relied on family and community members to help fill existing gaps in-home care, but gaps remained, suggesting the need for more medical and social supports for the in-home care of CMC and their families.
AB - Introduction: We sought to characterize the current supports used by parents to care for children with medical complexity (CMC) at home and parental preferences for additional supports to meet identified gaps. Method: Semistructured interviews were conducted with parents of 18 CMC. Interviews were transcribed then analyzed using a constant comparative approach. Results: Extended family and community offloaded nonmedical tasks, assisted financially, gave emotional reinforcement, and cared for CMC. Home health providers also directly cared for CMC, but access and quality varied. Government programs paid for in-home care, but eligibility varied. Parents wanted more paid home care but also more support completing nonmedical tasks, mitigating financial strains, and accessing mental health services. Discussion: Parents of CMC relied on family and community members to help fill existing gaps in-home care, but gaps remained, suggesting the need for more medical and social supports for the in-home care of CMC and their families.
KW - Children with medical complexity
KW - family caregiving
KW - home health care
KW - long-term services and supports
KW - private duty nursing
UR - http://www.scopus.com/inward/record.url?scp=85119115249&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85119115249&partnerID=8YFLogxK
U2 - 10.1016/j.pedhc.2020.08.005
DO - 10.1016/j.pedhc.2020.08.005
M3 - Article
C2 - 34688541
AN - SCOPUS:85119115249
VL - 36
SP - 154
EP - 164
JO - Journal of Pediatric Health Care
JF - Journal of Pediatric Health Care
SN - 0891-5245
IS - 2
ER -
