Impact of a child’s cancer disease on parents’ everyday life: a longitudinal study from Sweden

Abstract

Background: A child's cancer disease may disrupt the daily life of the affected family for a long period. The aim was to describe restrictions on parents' leisure activities and work/studies during and after the child's treatment. Methods: This study used data from a cohort of mothers and fathers (n ¼ 246) of children diagnosed with cancer. Data was collected five times from two months after diagnosis to one year after end of treatment. Reports of restrictions were evaluated over time, between mothers and fathers, and in relation to parent-reported child symptom burden (The Memorial Symptom Assessment Scale) and partial post-traumatic stress disorder (PTSD) (The PTSD Checklist-Civilian Version). Results: Two (51%) and four (45%) months after diagnosis, about half reported that their leisure activities were restricted at least some of the time. Corresponding percentages for restrictions on work/ studies were 84% and 77%. One year after end of treatment, the great majority reported that their leisure activities (91%) and/or work/studies (76%) were never/seldom restricted. During treatment, more mothers than fathers reported restrictions on work/studies all/most of the time. After end of treatment, gender was only related to reports of restrictions among parents not reporting partial PTSD. More parents who reported being restricted all/most of the time also reported partial PTSD and/or a greater symptom burden for the child. Conclusion: Parents report frequent restrictions on everyday life during treatment. One year after end of treatment, parents report only a limited impact of the child's cancer on their leisure activities and work/studies. More parents who report restrictions also report partial PTSD and/or a greater child symptom burden. The effect of gender on restrictions varies depending on reports of partial PTSD. Future studies of gender differences regarding the impact of a child's cancer on parents' everyday life should thus consider mothers' and fathers' level of psychological distress.

The impact of childhood cancer on parents' socio‐economic situation—A systematic review

“…However, two studies from Australia and the United Kingdom observed that mothers were less likely to reduce work hours compared with fathers. Most work disruptions occurred shortly after diagnosis and attenuated within 1 year . However, studies from Sweden and Switzerland identified higher unemployment among mothers even many years after diagnosis.…”

“…We identified 3359 articles through literature searches and included 35 articles, reporting on 29 individual studies (Figure ). Thirteen (37%) studies were conducted in Europe, 16 (46%) in North America/Australia, and six (17%) in Asia/Africa (Table ).…”

“…Most work disruptions occurred shortly after diagnosis and attenuated within 1 year. 24,29,31,50 However, studies from Sweden 28 and Switzerland 35 identified higher unemployment among mothers even many years after diagnosis. Diagnosis of haematological cancer, 35,38,45 younger age of child at diagnosis, 38,43 lower maternal education, 28,35 and having more children 28,31,35 were identified as the main characteristics associated with employment disruptions.…”

Post-traumatic Stress Disorder in Patients and Relatives Following a Diagnosis of De novo Neurofibromatosis Type 1

“…These data suggest that receiving a diagnosis of NF1 may be as difficult as receiving a cancer diagnosis. In previous Swedish studies describing PTSD in parents of children diagnosed with cancer, Hovén et al (6) demonstrated that approximately half of them presented PTSD (PTSD Checklist-Civilian version was used) 4 months after diagnosis, whereas 19% of the mothers and 8% of the fathers still presented ongoing symptoms 5 years after cancer treatment (7). Hence, even if PTSD is less frequent and less severe over time, it is important to know that it can continue for a few years in some parents, and doctors must be able to detect the symptoms and suggest psychotherapeutic intervention, if necessary.…”

Cancer Treatment-Related Symptoms Aggregation and Distribution among Saudi Children with Cancer

“…Regardless of cancer cytopathological features, it is well documented that children with cancer experience various upsetting symptoms related to disease process or treatment modality (Rodgers et al, 2013). Satisfactory relief of these distressing symptoms is an imperative goal for patients, parents and practitioners during treatment for cancer (Miller et al, 2011;Rodgers et al, 2016;Hovén et al, 2017). Not only are these upsetting symptoms key contributors to decreased perception of quality of life, disability to function and disease-related interference with daily activities, but they may also disturb treatment process and impact treatment efficacy (Arslan et al, 2013;Baggott et al, 2014).…”