You Pray for Him a Bit More”: Young Adults’ Positive Aspects of Caregiving (PAC) Towards Parental Cancer

Young adult caregivers are growing in number, yet there is a paucity of literature on their role in informal family caregiving. The Positive Aspects of Caregiving (PAC) framework has been developed within Dementia carers to indicate positive outcomes of the caring experience. The current study specifically explored the narratives of four young adult carers’ lived experience of caring towards their parents with cancer, using Interpretative Phenomenological Analysis (IPA) through the lens of PAC. Main themes developed from this study were unfolding the child-parent dyad, character building and affirmation of value systems, time reframed, and sustaining caregiving continuity with subthemes surrounding responsibility, appreciation beyond the role reversal, acceptance and sources of comfort. This small-scaled study contributes towards a new understanding of the young adult population, their perception of caregiving and briefly informs the PAC beyond a dementia population.

Estimates of Prevalence Rates of Cancer Patients With Children and Well-Being in Affected Children: A Systematic Review on Population-Based Findings

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.

Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs

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.

Managing Cancer as a Family Disease - Feasibility, Satisfaction and Family Functioning after Short-Time Counselling for Families with Parental Cancer

Background: Parental cancer affects not only the patient, but all family members. Access to psychological support for the entire family is highly relevant, but still scarce. The aim of the present research project was to develop, implement, and evaluate the effectiveness of a short-term counselling intervention for families with parental cancer. Methods: The short-term counselling intervention consisted of six sessions and was developed based on pre-existing evaluated concepts. All participating family members had to complete questionnaires prior and post-intervention. These questionnaires investigated changes in family communication and satisfaction levels, parental anxiety and depression levels, parental partnership quality and self-assessed quality of life of children and adolescents. Furthermore, feasibility of and satisfaction with the intervention was assessed. Results: Acceptability of short-term counselling was high in participating families, although feasibility was limited with regard to the final inclusion rate (n = 10). Comparison of pre and post intervention measures showed a significant increase in family communication and satisfaction levels. Anxiety and depression levels were low, quality of parental partnership within the normal range, and quality of life reported from children was high. These scores remained stable from pre to post intervention. Conclusions: The counselling intervention most likely had positive effects in all family members with either stabilizing or increasing all measured outcomes. Although interpretation of the results is limited due to the small sample size, we believe that integrated in clinical routine of adult care of a hospital, this additional offer might be a valuable benefice to cancer patients and their families. Clinical Trial Registration Number: NCT03097458 (clinicaltrials.gov)

Comprehensive support for families with parental cancer (Family-SCOUT), evaluation of a complex intervention: study protocol for a non-randomized controlled trial

Background Families with minor children affected by parental cancer are at risk of considerable emotional and organizational stress that can severely burden all family members. So far, there has been a lack of comprehensive support services for affected families. The aim of this project is to implement and evaluate a complex psychosocial intervention for these families by providing advice, information, and care on an emotional, psycho-social, and communicative level during and after the cancer experience and across healthcare sectors. Methods Family-SCOUT is a project supported by the German Innovation Fund (https://innovationsfonds.g-ba.de/). The evaluation is based on a mixed-methods quasi-experimental design with the intervention and control groups. A standardized postal survey at three measurement points (T0: study enrollment; T1: 3 months of follow-up; T2: 9 months of follow-up), secondary data from the participating health insurance funds, and semi-structured qualitative interviews are used for summative and formative evaluation. The study aim is to include n=560 families. Data will be analyzed according to the intention-to-treat principle. The primary analysis is the comparison of the Hospital Anxiety and Depression Scale (HADS) response rates (minimal important difference (MID) ≥ 1.6 in at least one of the two parents) at T2 between the intervention and control group using Fisher’s exact test. The conduct of the study as well as the development and implementation of the intervention will be accompanied by comprehensive study monitoring following the principles of an effectiveness-implementation hybrid study. Discussion The results will allow to test the effectiveness and efficiency of the intervention for the target group. The first experience with the implementation of the intervention in model regions will be available. The evaluation results will serve as the basis to assess the need of including the intervention in the catalog of services of the statutory health insurance funds in Germany. Trial registration ClinicalTrials.gov, NCT04186923. Retrospectively registered on 4 December 2019.

Challenge and hope for parents who have cancer

Parents who have cancer face particular problems in their relationships with children. This study aims to clarify 1) the current status of challenge/hope in parental cancer, 2) the factors related to challenge/hope, and 3) the relationship between challenge/hope and QOL/stress-coping ability. Cross-sectional national survey was conducted at designated cancer hospitals in Japan. Participants were undergoing cancer treatment and have children under 18 years old. The questionnaire included demographic data, QOL, ability to cope with stress, and challenge/hope. From 11 hospitals, 54 patients (response rate: 79.4%) participated. Majority of participants were female (72.2%) with the mean age of 39.3 ± 5.3 (SD). The total score was QOL (FACT-G: 50.4 ± 16.2), stress-coping ability (SOC: 46.7 ± 10.4). The main challenges were an inability to fulfill the parental role and children’s mental suffering due to loneliness. The main aspects of hope were the value of the children’s present self, being a parent, and strengthening family bonds. Gender and disease duration were significantly related with challenge/hope. Challenge was significantly related with QOL/stress-coping ability. Parents who have cancer derive hope from their relationship with their children, although they feel a gap between their ideal role/value as a parent and their current status.

Nurses’ realisation of an inadequate toolbox for approaching adolescents with a parent suffering from cancer: A constructivist grounded theory study

How to approach adolescents (aged 13–18 years) when their parent is suffering from cancer has become a relevant issue in healthcare, as parental cancer may have an impact on adolescents’ health and development. Nurses are well positioned to identify adolescents’ needs and provide information and support to them but often feel ill equipped to approach them appropriately. The aim of this study was to explore nurses’ experiences of approaching adolescents whose parent had cancer. Interviews with 12 nurses were conducted and analysed in line with a constructivist grounded theory approach. Nurses made efforts to create welcoming environments for adolescents but realised that the contact was unsatisfactory. Primarily, the nurses offered face-to-face conversations with adolescents, which did not correspond with adolescents’ communication channels. To better provide information and support to adolescents, nurses must expand their nursing toolbox so that it is better adapted to adolescents’ communication channels.