Exploring the concerns and experiences of parents of children scheduled to receive haematopoietic stem cell transplant

Abstract

AimsTo explore the concerns and experiences of parents of children scheduled to receive allogeneic haematopoietic stem cell transplantation.DesignA qualitative secondary analysis of interview data from an intervention study.MethodsA total of 28 parents (4 fathers and 24 mothers) were recruited from a children's hospital, which performs approximately one‐third of all paediatric haematopoietic stem cell transplantation cases in Taiwan. Data were collected between September 2015–August 2018 by one researcher with face‐to‐face interviews, which were tape‐recorded and transcribed verbatim. The data were analysed using inductive content analysis to extract the main themes.ResultsFive themes describing parental concerns prior to paediatric haematopoietic stem cell transplantation were identified: the child became their first priority, seeking solutions, an interweaving of hope and uncertainty, grateful for the chance of a cure and the long road to recovery.ConclusionUnderstanding the concerns and experiences of our participants as they navigated the pre‐transplantation period could reduce parents’ uncertainty and improve the care of their child.ImpactThese experiences provide information that could be used by healthcare professionals to develop support interventions and strategies tailored to the individual needs of each parent, which could prepare parents for their child's haematopoietic stem cell transplantation.

Parent Caregiving Experiences and Posttraumatic Growth Following Pediatric Hematopoietic Stem Cell Transplant

“…Positive emotional responses early after HSCT centered on finding hope and remaining optimistic for a good outcome. Parents often maintain optimism about HSCT success to help minimize fears surrounding HSCT failure, disease relapse, and complications (Liu et al, 2020b). As time passed after HSCT, parents adapted to caregiving responsibilities and expressed more happiness and relief, particularly as children felt increasingly well.…”

Parents’ experiences of living with a child with cancer undergoing hematopoietic stem cell transplantation: a qualitative content analysis study

“…Similarly, a phenomenological study conducted in Iran, focusing on parents whose children underwent BMT, highlighted that a primary concern for parents revolved around the potential rejection of the transplant, disease recurrence, and the fear of losing their child ( Asadi et al, 2011 ). Another qualitative study conducted by Liu et al (2020) in China revealed that a main concern among parents of children undergoing HSCT included worries about transplant rejection, disease recurrence, chronic GvHD, and potential infertility in their child ( Liu et al, 2020 ). Moreover, parents of children with primary immunodeficiency undergoing HSCT shared an essential experience characterized by uncertainty and the looming threat to their child’s life posed by both the disease and the treatment process ( McdDowell et al, 2010 ).…”

“…The treatment trajectory of children undergoing HSCT involves a protracted and intensive treatment process, encompassing immunosuppression, costly and extended hospitalizations ( Liu et al, 2020 ), a spectrum of physical and psychosocial problems ( Lindahl Norberg et al, 2014 ; Manookian et al, 2014 ), and Graft-versus-Host Disease (GvHD) ( Phan et al, 2021 ). While certain side effects may dissipate within the initial post-treatment year, others endure, presenting ongoing challenges for years or even becoming permanent ( Lindahl Norberg et al, 2014 ; Manookian et al, 2014 ).…”

“…Research by Sürer Adanir et al (2017) demonstrated elevated levels of obsessive-compulsive, anxiety, phobic anxiety, and interpersonal sensitivity in mothers with children undergoing HSCT compared to mothers with healthy children ( Sürer Adanir et al, 2017 ). In addition, the findings of a qualitative study in China revealed parental concerns about the extended road to recovery, potential disease recurrence, managing childcare issues at home, and the possibility of chronic GvHD and infertility in their children undergoing HSCT ( Liu et al, 2020 ). Additionally, a systematic review revealed that HSCT in children was associated with a substantial increase in anxiety, depression, distress, and post-traumatic stress disorder in their parents ( Packman et al, 2010 ).…”