Refine
Document Type
- Article (3)
Language
- English (3)
Has Fulltext
- yes (3)
Is part of the Bibliography
- no (3)
Keywords
- - (2)
- cancer (2)
- oncology (2)
- MENTAL HEALTH (1)
- PAEDIATRICS (1)
- Paediatric oncology (1)
- Quality in health care (1)
- children (1)
- distress (1)
- family (1)
- parental cancer (1)
- prevalence (1)
- psychosocial needs (1)
- quality of life (1)
- well-being (1)
Institute
Publisher
Introduction
Patients and families affected by paediatric cancer experience psychosocial burden not only during active treatment but also during follow-up care. Use of health services during follow-up treatment should be organised according to patients’ and family members’ needs with regard to their physical and mental situation. This study aims (1) at analysing healthcare use (medical and psychosocial) and associated factors in follow-up care of paediatric cancer patients and (2) at investigating the psychosocial situation and support needs of children and their families during follow-up care. Based on the results, recommendations for healthcare planning and for the development of new and the optimisation of existing support offers will be derived.
Methods and analysis
We will conduct a prospective observational study using a naturalistic explorative design with quantitative and qualitative methods. Paediatric cancer patients in follow-up care, their parents and siblings will be invited to fill out a questionnaire at three measurement points (baseline, 6 months follow-up, 12 months follow-up; target n=252 complete data sets over all measurement points). Additionally, parents will be interviewed using a semistructured interview guideline (target n=15–20) at baseline. Quantitative data will be analysed using descriptive statistics, linear mixed models and regression models. Moreover, explorative analyses will be conducted. Qualitative data will be analysed using qualitative content analyses.
Ethics and dissemination
The study was approved by the Local Psychological Ethics Committee (LPEK-0281). Our findings will be published in scientific, peer-reviewed journals and presented to clinicians and researchers on conferences. To assure that results will be available to affected patients and families, a lay summary will be written and disseminated using several ways (upload on the homepage of the research group, upload on the homepage of the psychosocial working group in the Society for Paediatric Oncology/Haematology in Germany, sending to relevant patient organisations).
Trial registration numberDRKS00025289.
This review assessed population-based estimate rates of cancer patients with minor and young adult children (≤ 25 years), children and young adults having a parent with cancer as well as the psychosocial situation and well-being of children and young adults affected by parental cancer. Eighteen publications on population-based studies were included. Studies varied in the age ranges of both cancer patients and children. The prevalence rates of cancer patients having children ranged from 14 to 24.7% depending on the sample structure (e.g., age, gender). Studies reported that between 1.6 and 8.4% of children resp. young adult children have a parent with a history of cancer. Seven publications reported on the psychosocial situation or well-being in children and young adults affected by parental cancer. Estimate rates of psychosocial problems, psychiatric diagnoses or distress ranged between 2.5 and 34% of children depending on the method of measurement and outcome. The differences in the sample structure between the studies impeded the comparison of prevalence rates. However, the findings help to determine the need for specific support services and health care planning. The results emphazise the importance to routinely include issues on the parental role of patients and questions on the well-being and coping of children into psychooncological care. If necessary, support should be provided to families living with a cancer diagnosis.
Parental cancer poses major challenges for families with minor children. Due to diagnosis and treatment family life is disrupted. To prevent long-term consequences in all family members and to design needs-oriented family-centered interventions, further understanding of the family's situation including the impact on the children, quality of life levels and the parental psychosocial needs is necessary. This study aims at investigating the impact of parental cancer on the minor children, family-specific psychosocial needs and quality of life levels of parents and children. Cancer patients parenting at least 1 minor child (<18 years) were eligible for study participation. In total, n=86 cancer patients under treatment participated in the study. After excluding participants without a minor child, 78 patients remained for analyses. We assessed children's quality of life using the parent proxy version of the KIDSCREEN-10 and parental quality of life using the EORTC QLQ C30 quality of life questionnaire. Additionally, the questionnaire comprised open questions about positive and negative changes parents perceived in their children as well as questions on specific family- and child-related psychosocial needs. The majority of participants were mothers (91%), mainly diagnosed with breast cancer (59%). The participating parents provided data on 117 minor children. Parents mentioned positive changes in 38% of the children (e.g., being more attentive and helpful). Negative changes were reported in 37% of the children (e.g., being more anxious and clingy). Parents reported family-specific psychosocial supportive care needs for themselves as a parent (e.g., support regarding parenting concerns), support needs for the partner or the children. Moreover, parents expressed family-related information needs and needs regarding practical aspects (e.g., childcare, household help). Global quality of life was M = 55.7 (SD = 23.4) for parents and M = 57.5 (SD = 15.5) for children. Pearson's correlation coefficient between parental and children's quality of life was 0.377 (p < 0.001). To identify parents with cancer and children in need for additional support, health care providers should proactively inquire about the impact of the disease on the children. In terms of a comprehensive cancer care, the direct assessment of family impact and family-specific support needs in cancer patients with minor children allows for needs-based allocation to support offers.