Date Presented 4/21/2018
This study examined complex challenges experienced by families who manage invasive medical therapies for their children at home. Implications are discussed for occupational therapy practitioners who work with children and families with these special health care needs.
Primary Author and Speaker: Carol Haywood
Additional Authors and Speakers: Jesus Diaz, Mary Lawlor
Contributing Authors: Glenn C. Takata, Greg V. Placencia
BACKGROUND AND PURPOSE: Invasive medical therapies, including mechanical ventilation (HMV) and parenteral nutrition (HPN), are prescribed for children who have serious health complications. As medical care advances, more children depend on invasive medical therapies to live at home, but the associated care requires advanced training and highly technical skills. Despite the expanding use of these home therapies, few studies have examined how families manage such critical care at home and how the demands of such care can be supported. The purpose of this study, funded by the Southern California Clinical and Translational Science Institute (NIH/NCRR/NCATS #KL2TR00031), was to understand how families manage invasive medical therapies for their children at home in order to identify factors associated with risks for harm to the child that can be addressed by the health care team.
METHOD: For this descriptive, qualitative study, participants were parents of children under age 18 who used HMV or HPN, spoke English or Spanish, and had recently experienced a complication or emergency from medical care at home. Participants were contacted by clinical providers and research assistants during routine health care encounters or hospitalizations associated with their medical therapies.
Narrative eventcentered interviews were conducted with families in the hospital and their home to elicit details about barriers to and facilitators of care for children using HMV or HPN; probes were related to understanding medical needs and effective equipment management, minimizing risks for harm, and balancing home and family roles. In addition, photos were taken in family homes to examine strategies for organization of equipment and supplies.
Interviews were audio recorded and transcribed verbatim for categorical, thematic, and narrative coding in NVivo 11 (QSR International, Melbourne, Australia). Multiple reviewers in occupational science and occupational therapy analyzed the data, and themes were examined with a multidisciplinary team including professionals trained in human factors engineering and patient safety.
RESULTS: A range of complications were revealed through discussions of care at home and in the community. Across cases, families developed expertise and applied intuition to understand and manage invasive home medical therapies while also striving to facilitate opportunities for age appropriate developmental experiences. Often, resilience appeared alongside risk (Panter-Brick, 2014), but data showed how families developed careful ways to do what they felt was best for their child, even in the absence of clear medical advice.
CONCLUSION: The lessons learned from families in this study address a significant gap in understanding how specialized medical care at home affects meaningful areas of occupation (American Journal of Occupational Therapy, 2014) for parents, children, and families alike. Findings have critical implications for occupational therapy practitioners working with children who have a range of special health care needs, including, but not limited to, invasive home medical therapies. They also provide insight on the many opportunities for “partnering up” (Lawlor & Mattingly, 2014) among clinicians and families in this area of practice to understand complexities of bridging clinical and home worlds to promote optimal care.
References
American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1–S48. https://doi.org/10.5014/ajot.2014.682006
Lawlor, M. C., & Mattingly, C. (2014). Family perspectives on occupation, health, and disability. In B. A. Boyt Schell, G. Gillen, & M. E. Scaffa (Eds.), Willard and Spackman’s occupational therapy (12th ed., pp. 149–162). Philadelphia: Lippincott Williams & Wilkins.
Panter-Brick, C. (2014). Health, risk, and resilience: Interdisciplinary concepts and applications. Annual Review of Anthropology, 43, 431–448. https://doi.org/10.1146/annurevanthro102313025944
