Exploring grandparents' psychosocial responses to childhood cancer: A qualitative study.

OBJECTIVE: A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. METHODS: We collected data using a semi-structured interview guide and applied qualitative content analysis. RESULTS: We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0-82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0-18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4-1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. CONCLUSIONS: Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system.

Fear of cancer recurrence experienced by pediatric survivors of childhood cancer: a scoping review.

PURPOSE: In contrast to the extensive literature on fear of cancer recurrence (FCR) experienced by adults, literature evaluating pediatric FCR has just begun to emerge. Given the rapidly expanding body of work assessing FCR in childhood and adolescence, a scoping review was conducted to synthesize existing findings. We aimed to assess (1) the characteristics and methods of this literature, (2) how pediatric FCR has been measured, and (3) the extant knowledge of FCR experienced by pediatric survivors of cancer. METHODS: Inclusion criteria were: (1) original reports, (2) participants diagnosed with cancer before age 18, (3) current mean age under 18, (4) FCR was explicitly measured (quantitatively) or captured (qualitatively) via survivor self-report, and (6) published in English. Exclusion criteria were: (1) case studies, and (2) grey literature. Three databases (Embase, MEDLINE, PsycINFO) and reference lists from included studies were searched. All studies were screened for inclusion by two authors and all data were extracted by a single author. RESULTS: Of 3906 identified studies, 19 were included. Studies (published 1991 - 2023) encompassed diverse geographical locations, study designs, and measurement methods. Few assessed FCR as a primary aim (n = 6, 32%). FCR was experienced by 43 - 90% of pediatric survivors. FCR was often positively associated with somatic symptoms and negatively associated with quality of life and emotional functioning. CONCLUSION: FCR is a prevalent issue for children and adolescents. Additional evidence is needed to explore and confirm preliminary findings. Future pediatric FCR studies should aim to align with published priority research areas.

Posttraumatic growth and illness perception in survivors of adolescent and young adult cancer.

BACKGROUND: Adolescents and young adults (AYAs) are diagnosed with cancer during a challenging period of life. We aimed to (1) describe positive changes (posttraumatic growth; PTG) and illness perception, and (2) determine associations between PTG and illness perception, sociodemographic, and cancer-related characteristics in Swiss AYA cancer survivors. METHODS: We conducted a population-based survey among AYA cancer survivors diagnosed 1990-2005 at age 16-25 years, who had survived ≥ 5 years. We used the Posttraumatic Growth Inventory (PTGI) and the Brief Illness Perception Questionnaire (BIPQ). Data were analyzed using descriptive statistics and linear regressions. RESULTS: Among 389 contacted survivors, 160 responded (61.3% male; mean age = 34 years, SD = 5.8). The mean PTG sum score was 54.63 (SD = 20.24; range: 8-101). Survivors reported high PTG especially in the domains Appreciation of life (mean = 3.23; 95% confidence interval, 3.05-3.40), Personal strength (2.94; 2.77-3.12), and Relating to others (2.57; 2.40-2.74). Neither sociodemographic nor cancer-related characteristics were associated with PTG. Survivors who perceived follow-up care as helpful (p < 0.001) and those with high concerns about the consequences of the illness (p < 0.001) reported higher PTG. CONCLUSIONS: Finding ways to promote PTG and to identify and address maladaptive illness perceptions may help survivors transform their experience into something meaningful for their future life.

Acute and long-term psychosocial consequences in grandparents when a grandchild is diagnosed with cancer - the GROKids Project: a population-based mixed-methods study protocol.

BACKGROUND: Grandparents play a crucial role in providing their families with love, support, and wisdom, often also supporting them in practical and financial ways. The psychosocial effects experienced by grandparents when a grandchild is diagnosed with an illness can be significant, including increased stress, anxiety, grief, and disruptions in their own lives. Yet, the experience of grandparents is often overlooked in the literature. METHODS/DESIGN: The GROKids Project aims to investigate how grandparents are affected by a grandchild's cancer diagnosis. It employs a mixed-methods approach and consists of three studies: a longitudinal cohort study (Study 1) and a qualitative study (Study 2) involving grandparents of children with a recent cancer diagnosis, and a cross-sectional study (Study 3) of grandparents of childhood cancer survivors. Study 1 covers four time points over two years after the cancer diagnosis, while Study 2 explores the lived experiences of a subsample of these grandparents. Study 3 collects data from grandparents of childhood cancer survivors diagnosed 3 to 10 years ago. Participants are recruited across eight pediatric oncology centers in Switzerland, and through patient advocacy and support groups. Eligibility criteria include having a grandchild diagnosed with cancer and being fluent in German, French, or Italian. Study procedures involve requesting grandparents' contacts from eligible families, and later contacting grandparents, providing study information, obtaining informed consent, and sending out questionnaires by post or online. Reminder calls and mails are used to improve response rates. Data analysis includes multilevel regression (Study 1), thematic analysis (Study 2), and regression analyses (Study 3). Various validated questionnaires are used to assess physical health and overall well-being, psychological health, internal, and external factors. DISCUSSION: This project addresses the gaps in understanding the psychosocial effects on grandparents having a grandchild diagnosed with cancer. It utilizes a comprehensive approach, including multiple methodologies and considering the broader family context. The project's strengths lie in its mixed-methods design, longitudinal approach, and inclusion of the perspectives of the sick children, siblings, and parents, besides grandparents. By gaining a more profound understanding of grandparents' experiences, researchers and healthcare professionals can develop targeted interventions and support services to address grandparents' unique needs.

Psychological outcomes and support in grandparents whose grandchildren suffer from a severe physical illness: A systematic review.

Objective: When a child is facing a severe physical illness, the entire family is affected. Grandparents provide invaluable emotional and practical support to families dealing with this situation, but little is known about the psychological impact on them. We aimed to synthesize the evidence on 1) the psychological outcomes experienced by grandparents when a grandchild is seriously ill and 2) the psychological support needed and used by grandparents. Methods: We systematically searched four databases with the search terms "grandchild", "grandparents", "psychological outcomes" and "severe diseases", and we used narrative synthesis to analyze the extracted data. Results: Our search identified 3319 records of which 12 were included in the analysis. Grandparents reported experiencing a wide spectrum of feelings, with fear being the most prevalent feeling. Grandparents rarely accessed professional services due to their lack of knowledge about available programs or because of the absence of formal services addressing their needs. In consequence, grandparents asked and received informal support from other family members, friends or their church community. Conclusion: Grandparents need to be better informed about their grandchild's disease and the available support services in order to reduce their psychological burden and to better attend to the needs of the other family members.