Returning to daily life: a qualitative interview study on parents of childhood cancer survivors in Germany

Abstract

ObjectivesTo investigate experiences of parents of paediatric cancer survivors in cancer-related changes in the parents’ daily life (work life, family life, partner relationship and social life) during and after intensive cancer treatment and to examine the reintegration process with its impeding and facilitating factors.DesignThe design of this cross-sectional study involves a qualitative content analysis of semistructured interviews.SettingParticipants were consecutively recruited in clinical settings throughout Germany.ParticipantsForty-nine parents (59% female) of 31 cancer survivors (aged 0–17 at diagnosis of leukaemia or central nervous system tumour) were interviewed approximately 16–24 months after the end of intensive cancer treatment (eg, chemotherapy).ResultsDuring treatment, more than 70% of parents reported difficulties reconciling paid work, household and family responsibilities and caring for the ill child. Couples spent little time with each other and approximately 25% reported dispute and burden. Many parents did not have enough energy for pursuing any hobbies during treatment. However, over the long term, being faced with the child’s disease also led to strengthened relationships, new priorities, improved communication, increased mutual trust and greater appreciation for daily life. Supportive social networks (family/friends/employers), a strong partner relationship prior to the diagnosis and the use of psychosocial services (eg, family-oriented rehabilitation) had a positive impact. At the time of the interview, most families had adapted well. However, reintegration took time and some parents lacked the energy required to continue life as they did before the diagnosis.ConclusionsEven though most parents successfully readjusted to a new ‘normality’, reintegrating into daily life after paediatric cancer treatment remains difficult. Professional psychosocial support could help families with the reintegration process. Lastly, clinical staff (eg, physicians, psychologists, social workers) should bear in mind that the burden of parents does not automatically end with the end of intensive cancer treatment.

Parents’ perception of their children’s process of reintegration after childhood cancer treatment

“…We conducted a qualitative study using semi-structured interviews to gain information on relevant themes and factors from the parental perspective during their child's cancer trajectory and reintegration process. Results on changes and reintegration of the parents are presented elsewhere [31].…”

Fear of progression in parents of childhood cancer survivors: A dyadic data analysis

“…According to an expert online survey in Germany, health care professionals are frequently confronted with parental FoP in clinical practice 15 . Additionally, a recent interview study identified parental FoP as an impeding factor when reintegrating into daily life after the end of treatment 16 …”

“…15 Additionally, a recent interview study identified parental FoP as an impeding factor when reintegrating into daily life after the end of treatment. 16 Overall, research on FoP of parents of childhood cancer survivors is still in its infancy. Previous studies used a broad sample of parents from children still receiving cancer treatment to long-term survivors.…”

A Balancing Act: Working and Caring for a Child with Cancer

“…In the existing studies, parents of children with cancer have reported difficulties in combining work with caring for the ill child, as well as for others in the family, due to significant disruptions in the everyday life (Granek et al, 2012;Long & Marsland, 2011;Molinaro & Fletcher, 2018;Peikert et al, 2020;Wakefield et al, 2014). Parents of children with cancer have to reorganize roles and responsibilities for childcare and work, with mothers often taking primary responsibility of the ill child (Clarke et al, 2009;Long & Marsland, 2011;Molinaro & Fletcher, 2018).…”

“…Parents of children with cancer have to reorganize roles and responsibilities for childcare and work, with mothers often taking primary responsibility of the ill child (Clarke et al, 2009;Long & Marsland, 2011;Molinaro & Fletcher, 2018). The most pronounced changes in role reorganization usually takes place during the initial stages of diagnosis and early treatment (Long & Marsland, 2011), although difficulties in managing the increased caregiving demands may last longterm (Peikert et al, 2020). High levels of caregiving stress have been reported by parents of children with cancer (Rodriguez et al, 2012), which in turn have been found to associate with impaired parental functioning (Sulkers et al, 2015).…”