Dissertation
The experience of caregivers of children with intestinal failure managing a central venous catheter in the home
University of Iowa
Doctor of Philosophy (PhD), University of Iowa
Autumn 2024
DOI: 10.25820/etd.007586
Abstract
Background: Children with intestinal failure (IF) have significant long-term medical needs that require continual complex procedures the family caregiver provides in the home. This care contributes to a high burden of care, leading to increased stress, anxiety, and depression. Understanding the family caregiver experiences for the child of IF is crucial for identifying and developing effective support programs and resources.
Methods: This descriptive study explored the experiences of caregivers of children with IF through a scoping literature review and a descriptive cross-sectional national survey with quantitative and qualitative analysis. The study focused on the caregiving experience by examining the current literature, exploring caregivers confidence in providing their child’s central venous catheter (CVC) care, the number of informal and formal supports, how the CVC care provision impacts their ability to manage the condition, the impact of condition management on the family, and caregiver reflections on their experiences caring for a child with IF. A scoping review will be conducted using the Arksey and O’Malley methodology. The cross-sectional survey will measure confidence with CVC care with a 5-point lickert scale, supports will be quantified by informal and formal multi select options, the family management experience will be measured through the Family Integration Experience Scale (FIES) and the Family Management Measure (FaMM). These measures will be analysis using descriptive and linear regression analysis. Caregivers will reflect on their experience through 8 open ended questions that will be analyzed qualitatively.
Results: Caregivers reported confidence providing critical care for their child themselves but expressed little confidence in others doing so. The care burden for children with IF as measured by the FaMM was higher than for other medically complex children, impacting the entire family. Caregivers reported that caring for their child requires high effort with the caregiver needing to maintain a continuous hypervigilant state. Factors such as duration of caregiving and the availability of informal and formal supports were found to positively influence caregiver confidence and satisfaction with their parental partner.
Conclusion: Preparing families to care for children with IF in the home may bolster caregiver confidence but may also impose a significant burden. Developing programs that offer optimal training, support, and interventions for caregivers can help alleviate stress and improve outcomes for both children and families.
Details
- Title: Subtitle
- The experience of caregivers of children with intestinal failure managing a central venous catheter in the home
- Creators
- Mary Beth Hovda Davis
- Contributors
- Ann Marie McCarthy (Advisor)Catherine Cherwin (Advisor)Melissa Lehan Mackin (Committee Member)Riad Rahhal (Committee Member)Valerie Toly (Committee Member)Patricia Groves (Committee Member)
- Resource Type
- Dissertation
- Degree Awarded
- Doctor of Philosophy (PhD), University of Iowa
- Degree in
- Nursing
- Date degree season
- Autumn 2024
- DOI
- 10.25820/etd.007586
- Publisher
- University of Iowa
- Number of pages
- xi, 92 pages
- Copyright
- Copyright 2024 Mary Beth Hovda Davis
- Language
- English
- Date submitted
- 12/05/2024
- Description illustrations
- illustrations, tables, graphs
- Description bibliographic
- Includes bibliographical references (pages 86-92).
- Public Abstract (ETD)
- Caregivers of children with intestinal failure (IF) often experience a high burden of care, leading to increased stress, anxiety, and depression. Understanding their experiences is crucial for developing effective support programs. This study explored the experiences of family caregivers of children with IF, focusing on their confidence in providing care, care burden, and factors influencing these outcomes. Caregivers’ reported confidence in providing essential care themselves but expressed little confidence in others doing so. The care burden for children with IF was higher than for other medically complex children, impacting the entire family. Factors such as duration of caregiving and the availability of informal and formal supports were found to influence caregiver confidence and satisfaction with their parental partner. Preparing families to care for children with IF in the home can bolster caregiver confidence but also imposes a significant burden for a considerable amount of time. Developing programs that offer optimal training, support, and interventions for caregivers can help alleviate stress and improve outcomes for both children and families. Future research needs to explore resources to increase psychosocial wellbeing such as resiliency training and access to mental health therapists to ensure that the caregiver can safely and effectively provide this care in the home for an extended time period.
- Academic Unit
- Nursing
- Record Identifier
- 9984774548902771
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