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Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis.

Publication ,  Journal Article
Koch, A; Kozhumam, AS; Seeler, E; Docherty, SL; Brandon, D
Published in: Journal of pediatric nursing
November 2021

Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework.We employed a qualitative descriptive design, secondary analysis of a longitudinal study on parent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35 infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless death occurred. Content analysis and thematic generation were performed capturing the various parental roles embedded within provider expectations of informal parental caregiving.Results showed that parents of children with CLTCs serve multidimensional roles, including that of informal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Parents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as well as lack of support, often leading to role strain, conflict, overload, and sometimes exit.Parents of children with CLTCs experience both common and unique challenges inn balancing multiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver carries significant risk for role strain and overload. We recommend the implementation of strategies for increasing parental support and family-centered care.

Duke Scholars

Published In

Journal of pediatric nursing

DOI

EISSN

1532-8449

ISSN

0882-5963

Publication Date

November 2021

Volume

61

Start / End Page

67 / 74

Related Subject Headings

  • Parents
  • Nursing
  • Longitudinal Studies
  • Infant
  • Humans
  • Child
  • Caregivers
  • Adaptation, Psychological
  • 4205 Nursing
  • 3213 Paediatrics
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Koch, A., Kozhumam, A. S., Seeler, E., Docherty, S. L., & Brandon, D. (2021). Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis. Journal of Pediatric Nursing, 61, 67–74. https://doi.org/10.1016/j.pedn.2021.03.017
Koch, Amie, Arthi S. Kozhumam, Erika Seeler, Sharron L. Docherty, and Debra Brandon. “Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis.Journal of Pediatric Nursing 61 (November 2021): 67–74. https://doi.org/10.1016/j.pedn.2021.03.017.
Koch A, Kozhumam AS, Seeler E, Docherty SL, Brandon D. Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis. Journal of pediatric nursing. 2021 Nov;61:67–74.
Koch, Amie, et al. “Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis.Journal of Pediatric Nursing, vol. 61, Nov. 2021, pp. 67–74. Epmc, doi:10.1016/j.pedn.2021.03.017.
Koch A, Kozhumam AS, Seeler E, Docherty SL, Brandon D. Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis. Journal of pediatric nursing. 2021 Nov;61:67–74.
Journal cover image

Published In

Journal of pediatric nursing

DOI

EISSN

1532-8449

ISSN

0882-5963

Publication Date

November 2021

Volume

61

Start / End Page

67 / 74

Related Subject Headings

  • Parents
  • Nursing
  • Longitudinal Studies
  • Infant
  • Humans
  • Child
  • Caregivers
  • Adaptation, Psychological
  • 4205 Nursing
  • 3213 Paediatrics