Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.

Parents of a child with a chronic illness can experience greater distress than the average population, yet little is understood about differences between illness groups. This cross-sectional survey study aimed to compare parents' psychological distress and perceived wellbeing across five chronic illnesses. Parents from one Australian pediatric hospital completed the Kessler Psychological Distress Scale and seven purpose-designed items about their wellbeing. Data from 106 parents (cancer = 48, cystic fibrosis [CF] = 27, kidney disease = 12, gastrointestinal condition/disorder = 9, developmental and epileptic encephalopathy [DEE] = 10) was analysed using bivariate Pearson's Correlation and linear mixed-effects models. Parents' distress scores differed between groups (F(4,80) = 2.50, p = .049), with the DEE group reporting higher distress than the CF group (mean difference = 6.76, 95% CI [0.11, 13.42]). Distress scores were moderately correlated to parents' perceptions of their child's health and their own wellbeing. Parents' self-reported coping with their child's condition/treatments differed (F(4,81) = 3.24, p = .016), with the DEE group rating their coping as poorer than the CF group (mean difference = -25.32, 95% CI [-46.52, 4.11]). Across all groups, parents reported unmet needs, particularly for psychosocial support and practical/financial assistance. Support interventions may be most effective if tailored to the child's illness, with greater support potentially needed for parents who have a child with DEE and/or severe comorbidities.

Precision Medicine Is Changing the Roles of Healthcare Professionals, Scientists, and Research Staff: Learnings from a Childhood Cancer Precision Medicine Trial.

Precision medicine programs aim to utilize novel technologies to identify personalized treatments for children with cancer. Delivering these programs requires interdisciplinary efforts, yet the many groups involved are understudied. This study explored the experiences of a broad range of professionals delivering Australia's first precision medicine trial for children with poor-prognosis cancer: the PRecISion Medicine for Children with Cancer (PRISM) national clinical trial of the Zero Childhood Cancer Program. We conducted semi-structured interviews with 85 PRISM professionals from eight professional groups, including oncologists, surgeons, clinical research associates, scientists, genetic professionals, pathologists, animal care technicians, and nurses. We analyzed interviews thematically. Professionals shared that precision medicine can add complexity to their role and result in less certain outcomes for families. Although many participants described experiencing a greater emotional impact from their work, most expressed very positive views about the impact of precision medicine on their profession and its future potential. Most reported navigating precision medicine without formal training. Each group described unique challenges involved in adapting to precision medicine in their profession. Addressing training gaps and meeting the specific needs of many professional groups involved in precision medicine will be essential to ensure the successful implementation of standard care.

It's made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness.

OBJECTIVE: For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era. METHOD: Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children's Hospital were invited to participate. We used qualitative methodology, including a semi-structured interview guide, verbatim transcription, and thematic analysis supported by QSR NVivo. RESULTS: Thirteen parents of children receiving tertiary-level care, for nine chronic illnesses, participated. Parents reported intense fears relating to their ill child's additional vulnerabilities, which included their risk of developing severe COVID-19 disease and the potential impact of COVID-19-related disruptions to accessing clinical care, medications, allied health support and daily care protocols should their parent contract COVID-19. Parents perceived telehealth as a highly convenient and preferred method for ongoing management of less complex healthcare needs. Parents reported that the accrual of additional stressors and responsibilities during the pandemic, experienced in combination with restricted social interaction and reduced access to usual support networks was detrimental to their own mental health. Hospital-based visitation restrictions reduced emotional support, coping, and resilience for both parents and children and in some cases led to marital discord, sibling distress, and financial loss. Supportive factors included increased time spent together at home during the pandemic and improved hygiene practices at school, which dramatically reduced the incidence of non-COVID-19-related communicable illnesses in chronically ill children. DISCUSSION: For families caring for a chronically ill child, COVID-19 made a difficult situation harder. The pandemic has highlighted the need for targeted psychosocial intervention for vulnerable families, to mitigate current mental health burden and prevent chronic psychological distress.

Siblings of young people with chronic illness: Caring responsibilities and psychosocial functioning.

Siblings of young people with chronic illness commonly undertake caring responsibilities for their affected brother/sister, which may encourage maturation, yet may also be perceived as a burden. Our study determined (1) siblings' caring responsibilities, (2) siblings' current emotional distress and psychosocial functioning, and (3) how siblings' caring responsibilities and psychosocial functioning related to familial relationships and coping strategies. Siblings completed questionnaires which contained Sibling Inventory of Behavior, Sibling Inventory of Differential Experiences, PedsQL, emotion thermometers, Brief COPE, and a checklist of caregiving responsibilities. We analyzed the data with t-tests and multi-level models. Forty-five siblings (mean age = 15.40 years, SD = 3.31 years; 60.0% female) participated. Siblings who had caring responsibilities (n = 26, 57.8%) reported lower anxiety symptoms, lower need for help, greater use of problem-focused coping, and more companionship and teaching/directiveness with their affected brother/sister than siblings without caring responsibilities. Siblings reported lower psychosocial and physical functioning when they perceived their parents provided them with less affection than their affected brother/sister. Family-based psychosocial interventions may aim to improve the sibling-parent relationship (including expressing affection) and the sibling-sibling relationship. Future interventions may also focus on increasing siblings' use of problem-focused coping strategies.

Development and Evaluation of an Information Booklet for Grandparents of Children With Cancer.

The needs of grandparents of children with cancer are often overlooked. This study evaluated a new educational resource (booklet) targeted toward grandparents of children with cancer. A multidisciplinary committee developed a printed booklet targeting grandparents' information needs identified in a previous study. Seventy-nine grandparents of children with cancer (63% grandmothers, Mage = 66.04, SD = 7.0 years) read and evaluated the booklet. Quantitative responses were analyzed with SPSS, and qualitative responses were thematically coded using QSR NVivo 10. Grandparents' responses to the resource were positive, with 92% finding the booklet "informative" (n = 73), "useful" (84%, n = 66), and "very relevant" (50%, n = 39). Qualitative responses reflected an appreciation for the booklet's readability, informative content, and quotes from grandparent experiences. The developed booklet was highly acceptable to grandparents of children with cancer and addressed their need for reassurance and guidance on obtaining further support. This study demonstrates the feasibility of developing and evaluating a targeted resource to meet grandparent's identified information needs.

Grandparents of children with cancer: a controlled study of distress, support, and barriers to care.

OBJECTIVE: For families under stress, positive grandparental relationships provide a valued 'safety net'. However, coping with family stressors can place a heavy burden on older individuals who may be experiencing declining health/energy themselves. This mixed-methods study assessed the prevalence of distress in grandparents of children with, and without, cancer, aiming to identify predictors of grandparental distress and quantify their barriers to care. METHODS: Two hundred twenty-one grandparents [87 cancer group; 134 controls; mean age 65.47 years (SD = 6.97); 33.5% male] completed self-report questionnaires assessing distress, anxiety, depression, anger, 'need for help', support use, and barriers to psychosocial care. RESULTS: A higher proportion of grandparents in the cancer group reported clinically relevant distress (32.9% vs. 12.7%; p < 0.001), anxiety (48.8% vs. 23.9%; p < 0.001), depression (24.4% vs. 6.0%; p < 0.001), and anger (23.5% vs. 6.8%; p = 0.001). In the cancer group, distress was higher in grandmothers and in families with fewer siblings. Grandparents rarely accessed evidence-based psychosocial support (<5% in both groups), although grandparents of children with cancer were more likely to seek religious/spiritual support. Barriers to help seeking included lack of knowledge and rurality. Grandparents of children with cancer qualitatively described undisclosed feelings of uncertainty and helplessness and provided advice to other grandparents to facilitate their coping. CONCLUSIONS: Grandparents of children with cancer were clearly more distressed than controls. Grandparents' capacity to support their families may be limited by their own, untreated, distress.

'What they're not telling you': a new scale to measure grandparents' information needs when their grandchild has cancer.

OBJECTIVE: To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents' information needs regarding their grandchild's cancer. METHODS: Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs. RESULTS: Eighty-seven grandparents participated (mean age 65.02 years, range 46-81, 31% male). Grandparents' information needs were high, especially among young and paternal grandparents. Grandparents' greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported "high need"), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents' booklet, distributed at diagnosis and available online. CONCLUSIONS: Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on 'second-hand' information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources. PRACTICE IMPLICATIONS: Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.

Results of a nurse-led intervention: connecting pediatric cancer patients from the hospital to the school using videoconferencing technologies.

The objectives of this study were to assess the feasibility and perceived academic/psychosocial outcomes of a pilot program using videoconferencing facilities to connect children with cancer to their home school. Eight parents, three patients, and five teachers (n = 16) participated in semistructured interviews evaluating the efficacy/feasibility of this program. Results were analyzed using the qualitative framework of Miles and Huberman. Parents reported that videoconferencing provided the family with a sense of normalcy and connection to the outside world (4/8), often boosting patients' mood (6/8). Further benefits included stronger relationships with classmates and teachers (15/16) and improved peer acceptance and school reintegration. There were no notable impacts on patients' academic progression. Reported barriers included: costs, time commitments, bureaucratic hurdles, and technical and logistical difficulties. Videoconferencing technologies provide an important tool to connect childhood cancer patients to their classrooms; however, further solution-based investigation is warranted to overcome existing barriers.