Other Titles
Care of the Child with Medical Complexity Through the Eyes of the Caregiver: A Photovoice Study [Title Slide]
Abstract
The population of children with a tracheostomy (trach) continues to grow as technological advancements have shifted how care is provided to children born with complex conditions, including more of them being offered a trach to prolong life.1 Home-based supportive services for children with a trach are underfunded and understaffed, putting the onus of care on the child’s family.2 The daily life of caregivers of these complex children has not been well documented.3 The home is an intimate and person-specific space with its own context, patterns of relationships, power structures, and rules that are uniquely different from other healthcare settings where children receive care and warrant a formal examination to understand the nature of this work.4-5 This qualitative descriptive study aimed to explore the concept of caregiving as it is experienced daily by caregivers of children with a trach as they provide care at home.
This study used photovoice, a community-based participatory research (CBPR) methodology. Photovoice combines photography and qualitative inquiry with community social action campaigns.6 Institutional review board approval was obtained. Caregivers of children with a trach who had been discharged home from a large urban pediatric hospital were purposefully recruited. Participants attended a photovoice education session to learn about the methodology. Participants then take photographs portraying their experiences caring for their child with a trach. An interview guide was used during semi-structured interviews. The researcher and participant reviewed each photograph and collaborated to develop narrative text that would be used to accompany photographs during future advocacy-based exhibitions.
Interview transcripts, photographs, and photograph narratives were analyzed using inductive content analysis. Eight participants were recruited. Four themes emerged in the thematic analysis: role transition, daily challenges, finding support, and thriving in the new normal. Member checking was used to validate the accuracy of themes.
Participant recruitment was challenging. The researcher will work with participants to plan advocacy efforts in accordance with CBPR methodology. Photographs and narratives will be exhibited to spread awareness of this often marginalized population. The results of this study may guide clinicians and policy-makers in what interventions are needed to better support these families as they care for their child at home.
Notes
References:
Nageswaran S, Gower WA, King NMP, Golden SL. Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need? Palliative & Supportive Care. August 2022:1-7. doi:10.1017/S1478951522001122
Sobotka SA, Hall DE, Thurm C, Gay J, Berry JG. Home health care utilization in children with Medicaid. Pediatrics. 2022;149(2). doi:10.1542/peds.2021-050534
Yu JA, Henderson C, Cook S, Ray K. Family caregivers of children with medical complexity: Health-related quality of life and experiences of care coordination. Academic Pediatrics. 2020;20(8):1116-1123. doi:10.1016/j.acap.2020.06.014
Hartley J, Bluebond-Langner M, Candy B, Downie J, Henderson EM. The physical health of caregivers of children with life-limiting conditions: A systematic review. Pediatrics. 2021;148(2). doi:10.1542/peds.2020-014423
LeGrow K, Cohen E, Espin S. Relational aspects of parent and home health care provider care practices for children with complex care needs receiving health care services in the home: A narrative review. Academic Pediatrics. 2022;22(2):196-202. doi:10.1016/j.acap.2021.08.009
Burris MA, Evans-Agnew RA, Strack RW. Braiding the healing gifts of photovoice for social change: The means are ends in the making. Health Promotion Practice. August 2023:15248399231192992. doi:10.1177/15248399231192993
Sigma Membership
Delta Theta
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Descriptive/Correlational
Research Approach
Qualitative Research
Keywords:
Health Equity or Social Determinants of Health, Policy, Advocacy, Tracheostomy, Caregivers
Recommended Citation
Van Orne, Julie and McCoy, Kia, "Caring for a Child with a Tracheostomy at Home: A Photovoice Study" (2025). International Nursing Research Congress (INRC). 74.
https://www.sigmarepository.org/inrc/2025/presentations_2025/74
Conference Name
36th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Seattle, Washington, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Caring for a Child with a Tracheostomy at Home: A Photovoice Study
Seattle, Washington, USA
The population of children with a tracheostomy (trach) continues to grow as technological advancements have shifted how care is provided to children born with complex conditions, including more of them being offered a trach to prolong life.1 Home-based supportive services for children with a trach are underfunded and understaffed, putting the onus of care on the child’s family.2 The daily life of caregivers of these complex children has not been well documented.3 The home is an intimate and person-specific space with its own context, patterns of relationships, power structures, and rules that are uniquely different from other healthcare settings where children receive care and warrant a formal examination to understand the nature of this work.4-5 This qualitative descriptive study aimed to explore the concept of caregiving as it is experienced daily by caregivers of children with a trach as they provide care at home.
This study used photovoice, a community-based participatory research (CBPR) methodology. Photovoice combines photography and qualitative inquiry with community social action campaigns.6 Institutional review board approval was obtained. Caregivers of children with a trach who had been discharged home from a large urban pediatric hospital were purposefully recruited. Participants attended a photovoice education session to learn about the methodology. Participants then take photographs portraying their experiences caring for their child with a trach. An interview guide was used during semi-structured interviews. The researcher and participant reviewed each photograph and collaborated to develop narrative text that would be used to accompany photographs during future advocacy-based exhibitions.
Interview transcripts, photographs, and photograph narratives were analyzed using inductive content analysis. Eight participants were recruited. Four themes emerged in the thematic analysis: role transition, daily challenges, finding support, and thriving in the new normal. Member checking was used to validate the accuracy of themes.
Participant recruitment was challenging. The researcher will work with participants to plan advocacy efforts in accordance with CBPR methodology. Photographs and narratives will be exhibited to spread awareness of this often marginalized population. The results of this study may guide clinicians and policy-makers in what interventions are needed to better support these families as they care for their child at home.
Description
Photovoice was used to explore the experiences of caregivers of children with a tracheostomy as they provide care for their child in the home. Study results may guide clinicians and policy-makers in what interventions are needed to better support these families as they care for their child at home.