Quality of life in mothers and fathers of children treated for acute lymphoblastic leukaemia in Sweden, Finland and Denmark

Abstract

Summary Acute lymphoblastic leukaemia (ALL) has a high survival rate, but treatment is lengthy with risk of severe side‐effects, which may also impact parents' health‐related quality of life (HRQOL). We present data on 526 parents of 310 children treated for ALL according to the NOPHO ALL2008‐protocol, in Sweden, Finland and Denmark. Parents were asked to complete the 36‐Item Short Form Survey (SF‐36) at least 6 months after end of treatment and data were compared with Norwegian reference data. Parental background factors were collected via a study‐specific questionnaire. Participating parents scored significantly lower than the reference population on both physical and mental summary indexes, but only surpassed a minimal clinically important difference for the mental summary index (Mental Component Summary [MCS]). Mothers scored lower than fathers in the MCS and stopped working and took care of the affected child more often than the fathers. Higher mental HRQOL was associated with male gender and living in Finland or Denmark (compared to Sweden). Correlations within spouses in physical and mental scores were weak to moderate. In conclusion, ALL negatively affects parental HRQOL, especially the mental domains, even after treatment. Findings suggest that mothers are more affected than fathers and may require extra support.

Quality of life in children and adolescents after treatment for acute lymphoblastic leukemia according to the NOPHO ALL2008 protocol

“…The reasons for this could be several. First, parents with high levels of distress or low HRQoL themselves tend to rate their child's HRQoL as low, 7,18,57–61 and parents, especially mothers, of children recently treated for cancer have been shown to have impaired HRQoL, 59,62 which is true also for this cohort 45 . Second, after a life‐altering event such as being diagnosed with a life‐threatening disease, a phenomenon referred to as response shift often occurs.…”

“…Parents were asked to estimate to what extent their child was affected by complications overall compared to other children with ALL. The possible answers on disposable income and education were based on the Swedish median for annual disposable income and ISCED‐97 (the International Standard Classification of Education 1997), respectively, 43,44 and has been described elsewhere 45 …”

Experiências E Estratégias De Enfrentamento De Familiares Com Crianças Em Cuidados Paliativos Pediátricos: Uma Revisão De Literatura

“…Dessa forma, dar e receber apoio psicológico foi uma das estratégias de enfrentamento utilizadas, o que acaba representando a importância do apoio familiar, e esses achados também coincidem com os estudos de Ghorbani et al, 2022. Os pais, por estarem vivenciando uma fase difícil diante o quadro do filho, tendem a ter prejuízos em relação a sua própria saúde, com questões emocionais, mas priorizam na maior parte das vezes a saúde do filho e as necessidades dele, estudos anteriores realizado por Mogensen et al, (2022) contribui com esses achados ao mostrar que os pais de crianças que estão em tratamento oncológico possuem grandes prejuízos psicológicos, em especial as mães, o que reforça a importância do apoio e avaliação individual das necessidades deles.…”

Beyond Anxiety and Grief: Mapping the Emotional Landscape of Parents Facing a Childhood Cancer Diagnosis

“…Equally interesting, some parental factors were unassociated with cluster membership, the most notable of which was respondent sex. While other analyses have identified notable differences in the psychosocial wellbeing of mothers versus fathers of children with cancer, such studies have focused on well-being during the course of the child's treatment and convalescence, 18,19 or following a child's death from cancer, 20 and are likely influenced by differences in caregiving responsibilities and return-to-work behaviors. Our study is unique is comparing emotions experienced at the time of diagnosis, where robust sex-differences were not observed.…”