Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
BMJ Open. 2020 Mar 8;10(3):e033730. doi: 10.1136/bmjopen-2019-033730.
To 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.
The design of this cross-sectional study involves a qualitative content analysis of semistructured interviews.
Participants were consecutively recruited in clinical settings throughout Germany.
Forty-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).
During 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.
Even 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.
调查儿科癌症幸存者父母在癌症相关变化方面的经验，这些变化涉及父母在癌症强化治疗期间和之后日常生活（工作生活、家庭生活、伴侣关系和社会生活）的变化，并研究再融入过程及其阻碍和促进因素。
本横断面研究的设计包括对半结构化访谈的定性内容分析。
参与者是在德国各地的临床环境中连续招募的。
对 31 名癌症幸存者（白血病或中枢神经系统肿瘤诊断时年龄为 0-17 岁）的 49 名父母（59%为女性）进行了采访，大约在强化癌症治疗（如化疗）结束后 16-24 个月。
在治疗期间，超过 70%的父母报告说难以调和有偿工作、家务和家庭责任以及照顾生病的孩子。夫妻之间相处的时间很少，约有 25%的人报告有争执和负担。许多父母在治疗期间没有足够的精力从事任何爱好。然而，从长远来看，面对孩子的疾病也导致了关系的加强、新的优先事项、沟通的改善、相互信任的增加以及对日常生活的更多欣赏。支持性的社交网络（家庭/朋友/雇主）、诊断前强大的伴侣关系以及使用心理社会服务（如面向家庭的康复）都产生了积极的影响。在采访时，大多数家庭都适应得很好。然而，重新融入需要时间，一些父母缺乏继续过诊断前生活所需的精力。
尽管大多数父母成功地重新适应了新的“常态”，但在儿科癌症治疗后重新融入日常生活仍然很困难。专业的心理社会支持可以帮助家庭进行再融入过程。最后，临床工作人员（如医生、心理学家、社会工作者）应牢记，父母的负担不会随着癌症强化治疗的结束而自动结束。
