Socially disadvantaged parents of children treated with allogeneic haematopoietic stem cell transplantation (HSCT): Report from a supportive intervention study, Denmark

Hanne Bækgaard Larsen, Carsten Heilmann, Christoffer Johansen, Lis Adamsen

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Abstract

PURPOSE: This study was undertaken to test a daily Family Navigator Nurse (FNN) conducted intervention program, to support parents during the distressful experience of their child's Allogeneic Haematopoietic Stem Cell Transplantation (HSCT). METHODS: A qualitative analysis of the supportive intervention program for parents whose child is under HSCT treatment while hospitalized. Parents to 25 children were included in the intervention group. Twenty-five parents were included in a participant observational study and 21 of these completed a semi-structured interview 100 days following HSCT. RESULTS: Three main problems faced by all parents included 1) the emotional strain of the child's HSCT; 2) re-organizing of the family's daily life to include hospitalization with the child; and 3) the financial strain of manoeuvring within the Danish welfare system. The FNN performed daily intervention rounds to ease each of these problems during the study period. Having the following pre-existing risk factors, negatively influenced the parents' ability to address these problems: 1) being a single parents; 2) low-level income; 3) low-level education; 4) low-level network support: 5) being a student or unemployed; 6) physical/psychiatric illness; and 7) ethnicity. Six families with 4 or more risk factors had complex emotional, social and financial problems that required extensive intervention by the FNN and that impacted their ability to provide care for the child. CONCLUSION: The parents' pre-existing risk factors were further complicated by their children's HSCT. A recommendation for clinical practice is to identify families with multiple interrelated problems and allocate resources to support these families.
Original languageEnglish
JournalEuropean Journal of Oncology Nursing
Volume17
Issue number3
Pages (from-to)302-310
ISSN1462-3889
DOIs
Publication statusPublished - 2013

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