Parent-performed invasive procedures in children with complex care needs: scoping review protocol

cania torres; Lídia Soares; Ana Lucía Noreña-Peña; Maria do Céu Barbieri-Figueiredo; Maria Loreto Macia Soler

doi:10.62741/ahrj.v3iSuppl.229

Authors

cania torres Faculty of Health Sciences, University of Alicante, Carretera de San Vicente del Raspeig, s/n 03690 San Vicente del Raspeig (Alicante) Spain; RISE-Health, Nursing School, University of Porto (ESEP), Rua Dr. Bernardino de Almeida, 830, 844, 856, 4200-072, Porto, Portugal https://orcid.org/0000-0003-1827-9479
Lídia Soares RISE-Health, Rua Dr. Plácido da Costa, 4200-450, Porto, Portugal https://orcid.org/0000-0001-6156-7869
Ana Noreña-Peña Faculty of Health Sciences, University of Alicante, Carretera de San Vicente del Raspeig, s/n 03690 San Vicente del Raspeig (Alicante) Spain; https://orcid.org/0000-0002-5997-493X
Maria Barbieri-Figueiredo RISE-Health, Nursing School, University of Porto (ESEP), Rua Dr. Bernardino de Almeida, 830, 844, 856, 4200-072, Porto, Portugal https://orcid.org/0000-0003-0329-0325
Maria Macia Soler Faculty of Health Sciences, University of Alicante, Carretera de San Vicente del Raspeig, s/n 03690 San Vicente del Raspeig (Alicante) Spain; https://orcid.org/0000-0002-1801-7607

DOI:

https://doi.org/10.62741/ahrj.v3iSuppl.229

Keywords:

Caregivers, Children with Complex Care Needs, Invasive Procedures, Parents, Transitional Care

Abstract

Introduction: Advances in pediatric medicine and life-support technologies have increased survival among children with complex care needs, while healthcare reorganisation has shifted complex care from hospital to home. As a result, parents are increasingly performing invasive or high-risk clinical procedures traditionally delivered by healthcare professionals. However, the literature remains fragmented regarding which procedures are undertaken by parents and how these practices are organised across care contexts.

Objectives: To map and analyse how parental involvement in invasive or high-risk clinical procedures among children with complex care needs is described across care contexts, with attention to accountability and support. Methodology: This scoping review will be conducted in accordance with the JBI methodology and reported following the PRISMA-ScR guidelines. A three-step search strategy will be implemented across MEDLINE (via EBSCO), CINAHL Ultimate (via EBSCO), Scopus, and Web of Science Core Collection, as well as relevant grey literature sources. Study selection and data extraction will be conducted independently by two reviewers. Findings will be presented in descriptive and tabular formats.

Results: Findings will be presented descriptively, supported by tables and figures, and synthesised narratively to characterise the procedures performed by parents and how accountability, training, competency validation, and support are described across care contexts.

Conclusion: This review will clarify how parent-performed invasive or high-risk clinical procedures are described and supported across care contexts, identifying gaps in training, supervision, and accountability that may inform safer and more consistent approaches to complex care in the home setting.

References

Berry JG, Hall DE, Kuo DZ, et al. Hospital utilization and characteristics of children with complex chronic conditions. JAMA. 2011;305(7):682-690. doi:10.1001/jama.2011.122 DOI: https://doi.org/10.1001/jama.2011.122

Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr. 2014;14(1):199. doi:10.1186/1471-2431-14-199 DOI: https://doi.org/10.1186/1471-2431-14-199

Sterni LM, Collaco JM, Baker CD, et al. An official American Thoracic Society clinical practice guideline: pediatric chronic home invasive ventilation. Am J Respir Crit Care Med. 2016;193(8):e16-e35. doi:10.1164/rccm.201602-0276ST DOI: https://doi.org/10.1164/rccm.201602-0276ST

Pironi L, Boeykens K, Bozzetti F, et al. ESPEN practical guideline: home parenteral nutrition. Clin Nutr. 2023;42(3):411-430. doi:10.1016/j.clnu.2022.12.003 DOI: https://doi.org/10.1016/j.clnu.2022.12.003

Kirk S, Glendinning C. Developing services to support parents caring for a technology-dependent child at home. Child Care Health Dev. 2004;30(3):209-218. doi:10.1111/j.1365-2214.2004.00393.x DOI: https://doi.org/10.1111/j.1365-2214.2004.00393.x

Leyenaar JK, Ralston SL, Shieh MS, et al. Epidemiology of pediatric hospitalizations at general hospitals and freestanding children’s hospitals in the United States. J Hosp Med. 2016;11(11):743-749. doi:10.1002/jhm.2624 DOI: https://doi.org/10.1002/jhm.2624

Toly VB, Blanchette JE, Musil CM. Mothers caring for technology-dependent children at home: what is most helpful and least helpful? Appl Nurs Res. 2019;46:24-27. doi:10.1016/j.apnr.2019.02.001 DOI: https://doi.org/10.1016/j.apnr.2019.02.001

Aromataris E, Munn Z, eds. JBI Manual for Evidence Synthesis. Joanna Briggs Institute; 2020. doi:10.46658/JBIMES-20-01 DOI: https://doi.org/10.46658/JBIMES-20-01

Peters MDJ, Godfrey C, McInerney P, et al. Chapter 11: Scoping reviews. In: Aromataris E, Munn Z, eds. JBI Manual for Evidence Synthesis. Joanna Briggs Institute; 2020. DOI: https://doi.org/10.46658/JBIRM-20-01

Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-473. doi:10.7326/M18-0850 DOI: https://doi.org/10.7326/M18-0850

Kuo DZ. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2012;16(2):297-305. doi:10.1007/s10995-011-0751-7 DOI: https://doi.org/10.1007/s10995-011-0751-7