"Line care governs our entire world": Understanding the experience of caregivers of children with intestinal failure receiving long-term parenteral nutrition.
caregiver burden
intestinal failure
qualitative
Journal
JPEN. Journal of parenteral and enteral nutrition
ISSN: 1941-2444
Titre abrégé: JPEN J Parenter Enteral Nutr
Pays: United States
ID NLM: 7804134
Informations de publication
Date de publication:
09 2022
09 2022
Historique:
revised:
08
01
2022
received:
28
09
2021
accepted:
21
01
2022
pubmed:
29
1
2022
medline:
14
9
2022
entrez:
28
1
2022
Statut:
ppublish
Résumé
Children with intestinal failure (IF) receiving long-term parenteral nutrition (PN) require significant medical care, including high-risk procedures such as accessing a central venous catheter, with the majority provided by family caregivers in the home. This study sought to understand the experiences of family caregivers. This was a qualitative study of family caregivers of children with IF. Participants were recruited from an intestinal rehabilitation program to participate in virtual focus groups, which were recorded and transcribed. Thematic analysis was used to capture and describe experiences. Thirteen caregivers providing care to 11 children participated in three virtual focus groups held between May and June 2020. Data analysis revealed five primary themes: (1) caregiving as a 24/7 commitment, (2) facing constant risk of death, (3) chronic illness creates difficult feelings and emotions, (4) effects on all aspects of family life, and (5) adapting and functioning as a family. The findings of this study pair well with the biopsychosocial model highlighting the need for multifaceted assessment and supports. The impact of caring for a child with IF receiving long-term PN is significant for caregivers and their families and has implications for all aspects of their lives. A better understanding of the impact on caregivers and their coping strategies lays the groundwork for the optimization of quality of life for caregivers and their family.
Sections du résumé
BACKGROUND
Children with intestinal failure (IF) receiving long-term parenteral nutrition (PN) require significant medical care, including high-risk procedures such as accessing a central venous catheter, with the majority provided by family caregivers in the home. This study sought to understand the experiences of family caregivers.
METHODS
This was a qualitative study of family caregivers of children with IF. Participants were recruited from an intestinal rehabilitation program to participate in virtual focus groups, which were recorded and transcribed. Thematic analysis was used to capture and describe experiences.
RESULTS
Thirteen caregivers providing care to 11 children participated in three virtual focus groups held between May and June 2020. Data analysis revealed five primary themes: (1) caregiving as a 24/7 commitment, (2) facing constant risk of death, (3) chronic illness creates difficult feelings and emotions, (4) effects on all aspects of family life, and (5) adapting and functioning as a family. The findings of this study pair well with the biopsychosocial model highlighting the need for multifaceted assessment and supports.
CONCLUSION
The impact of caring for a child with IF receiving long-term PN is significant for caregivers and their families and has implications for all aspects of their lives. A better understanding of the impact on caregivers and their coping strategies lays the groundwork for the optimization of quality of life for caregivers and their family.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1602-1613Informations de copyright
© 2022 American Society for Parenteral and Enteral Nutrition.
Références
Peckham A, Spalding K, Watkins J, Bruce-Barrett C, Grasic M, Williams AP. Caring for caregivers of high-needs children. Healthc Q. 2014;17(3):30-35.
Statistics Canada. General social survey on caregiving and care receiving. (Cycle 26). Statistics Canada; 2012.
Sinha M. Portrait of caregivers, 2012. Spotlight on Canadians: Results from the General Social Survey. Statistics Canada Catalogue no. 89-652-X; 2013.
Patterson JM, Leonard BJ, Titus JC. Home care for medically fragile children: impact on family health and well-being. J Dev Behav Pediatr. 1992;13(4):248-255.
Leonard BJ, Brust JD, Nelson RP. Parental distress: caring for medically fragile children at home. J Pediatr Nurs. 1993;8(1):22-30.
Thyen U, Kuhlthau K, Perrin JM. Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics. 1999;103(6 pt 1):1235-1242.
Baumgardner DJ, Burtea ED. Quality-of-life in technology-dependent children receiving home care, and their families-a qualitative study. WMJ. 1998;97(8):51-55.
Kuster PA, Badr LK, Chang BL, Wuerker AK, Benjamin AE. Factors influencing health promoting activities of mothers caring for ventilator-assisted children. J Pediatr Nurs. 2004;19(4):276-287.
Rodrigue JR, MacNaughton K, Hoffmann RG 3rd, et al. Transplantation in children. A longitudinal assessment of mothers' stress, coping, and perceptions of family functioning. Psychosomatics. 1997;38(5):478-486.
Salvador A, Crespo C, Martins AR, Santos S, Canavarro MC. Parents' perceptions about their child's illness in pediatric cancer: links with caregiving burden and quality of life. J Child Fam Stud. 2015;24:1129-1140.
Keilty K, Cohen E, Spalding K, Pullenayegum E, Stremler R. Sleep disturbance in family caregivers of children who depend on medical technology. Arch Dis Child. 2018;103(2):137-142.
Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics. 2006;117(1):e48-e60.
Wingham J, Frost J, Britten N. Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure. BMJ Open. 2017;7(7):e014126.
D'Antiga L, Goulet O. Intestinal failure in children: the European view. J Pediatr Gastroenterol Nutr. 2013;56(2):118-126.
Goulet O, Ruemmele F. Causes and management of intestinal failure in children. Gastroenterology. 2006;130(2 suppl 1):S16-S28.
Wales PW, Christison-Lagay ER. Short bowel syndrome: epidemiology and etiology. Semin Pediatr Surg. 2010;19(1):3-9.
Squires RH, Duggan C, Teitelbaum DH, et al. Natural history of pediatric intestinal failure: initial report from the Pediatric Intestinal Failure Consortium. J Pediatr. 2012;161(4):723-8 e2.
Vanderhoof JA, Young RJ. Overview of considerations for the pediatric patient receiving home parenteral and enteral nutrition. Nutr Clin Pract. 2003;18(3):221-226.
Nucci A, Burns RC, Armah T, et al. Interdisciplinary management of pediatric intestinal failure: a 10-year review of rehabilitation and transplantation. J Gastrointest Surg. 2008;12(3):429-435. discussion 35-6.
Lacaille F, Gupte G, Colomb V, et al. Intestinal failure-associated liver disease: a position paper of the ESPGHAN Working Group of Intestinal Failure and Intestinal Transplantation. J Pediatr Gastroenterol Nutr. 2015;60(2):272-283.
Fallon EM, Le HD, Puder M. Prevention of parenteral nutrition-associated liver disease: role of omega-3 fish oil. Curr Opin Organ Transplant. 2010;15(3):334-340.
Hommel MJ, van Baren R, Haveman JW. Surgical management and autologous intestinal reconstruction in short bowel syndrome. Best Pract Res Clin Gastroenterol. 2016;30(2):263-280.
Pakarinen MP. Autologous intestinal reconstruction surgery as part of comprehensive management of intestinal failure. Pediatr Surg Int. 2015;31(5):453-464.
Ratliffe CE, Harrigan RC, Haley J, Tse A, Olson T. Stress in families with medically fragile children. Issues Compr Pediatr Nurs. 2002;25(3):167-188.
Braun VCV. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196(4286):129-136.
Patton MQ, ed. Qualitative Research and Evaluation Methods: Intergrating Theory and Practice. 4th ed. Sage Publications, Inc; 2014.
NVivo qualitative data analysis software (2020, March 18). Version 10. QRS International Pty Ltd.
Sowerbutts AM, Panter C, Dickie G, et al. Short bowel syndrome and the impact on patients and their families: a qualitative study. J Hum Nutr Diet. 2020;33(6):767-774.
Wightman A, Zimmerman CT, Neul S, Lepere K, Cedars K, Opel D. Caregiver experience in pediatric dialysis. Pediatrics. 2019;143(2):e20182102.
Dinleyici M, Dagli FS. Evaluation of quality of life of healthy siblings of children with chronic disease. Turk Pediatri Ars. 2018;53(4):205-213.
Dinleyici M, Çarman KB, Özdemir C, et al. Quality-of-life evaluation of healthy siblings of children with chronic illness. Balkan Med J. 2019;37(1):34-42.
Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol. 2002;27(8):699-710.
Golics CJ, Basra MK, Finlay AY, Salek S. The impact of disease on family members: a critical aspect of medical care. J R Soc Med. 2013;106(10):399-407.
Hollander MJ, Liu G, Chappell NL. Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly. Healthc Q. 2009;12(2):42-49.
Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff (Millwood). 1999;18(2):182-188.
Burke RE, Coleman EA. Interventions to decrease hospital readmissions: keys for cost-effectiveness. JAMA Intern Med. 2013;173(8):695-698.
Canadian Institute of Health Information Supporting informal caregivers-The heart of home care. Ottawa, Ontario: Canadian Institute of Health Information; 2010. Accessed October 25, 2020. https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf
Aggarwal B, Liao M, Mosca L. Medication adherence is associated with having a caregiver among cardiac patients. Ann Behav Med. 2013;46(2):237-242.
Ran MS, Chui CH, Wong IY, et al. Family caregivers and outcome of people with schizophrenia in rural China: 14-year follow-up study. Soc Psychiatry Psychiatr Epidemiol. 2016;51(4):513-520.
Noddings N. Moral obligation or moral support for high-tech home care? Hastings Cent Rep. 1994;24(5):S6-S10.