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Background Approximately 770 children are diagnosed with cancer in Australia every year. Research has explored their experiences and developed recommendations for improving support provided to families. These have included the provision of psychology services, improved communication between healthcare professionals and parents, and increased information for families. Methodology In our hermeneutic phenomenological study, 44 participants (21 fathers and 23 mothers), with ages ranging from 28 to 51 years (M  =   37 years, SD  =   5.6 years) were interviewed. Interviews ranged from 45 to 150 min (M  =   65 min, SD  =   18 min) duration. Findings Thematic analysis of the data generated seven themes. Take it second by second; Find some normality; Take care of yourself; You need to talk to someone; Just take all the help; Speaking up for your child; and Take care of the siblings. Conclusion The results of our study provide firsthand advice from parents. The overwhelming theme that emerged is that while many parents revealed that they had not asked for or received support, in hindsight they unanimously reflected that they wished they had sought out services. The strength of this study is that parents are more likely to accept the advice of other parents with a shared lived experience. The results of our study can be used to develop resources that could be provided to parents. These resources would emphasize that the recommendations come from parents who have traveled the same path and have learnt from hindsight and experience. [ABSTRACT FROM AUTHOR]

Background: Siblings of children with cancer have been shown to experience disruption in multiple domains including family, school, and friendships. Existing literature on siblings' experiences focuses on older children or on a broad range of ages. Aim: To explore the experience of siblings aged 8–12 years when their brother or sister is diagnosed with cancer. Method: A qualitative design incorporating phenomenology as the theoretical framework was used. Participants were recruited from across Australia via notices on social media sites and by the distribution of flyers. We used thematic analysis to analyze the data. Data were collected via semistructured interviews conducted either in person or online. Findings: A total of 13 siblings (7 boys and 6 girls) aged between 8 and 12 years (M = 9.8, SD = 1.6) were interviewed. Seven main themes were identified. These were "It was really hard": Reactions to the cancer diagnosis; "I'm really angry": Emotional and Physical Responses to siblings' treatment; "I pretend teddy is real": Play as an outlet; "It was very lonely": Missing their siblings; "I missed out on a lot of fun": Disruption of activities: School, sports, playdates, and parties; Change and Transition and "Making a difficult situation worse": COVID-19 Pandemic. Discussion: Findings extend the current understanding showing that younger siblings' developmental and cognitive skills impact their experiences of childhood cancer. Younger siblings outlined the many losses they experienced which demonstrated a need for a comprehensive and tailored program to support young siblings aged under 12 of children with cancer. [ABSTRACT FROM AUTHOR]

Objectives: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training. Methods: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis. Results: We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists. Significance of results: Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration. [ABSTRACT FROM AUTHOR]

We examined how family functioning and emotion regulation strategies relate to both a history of nonsuicidal self-injury (NSSI) and recovery from NSSI. Participants were 272 adolescents aged between 12 and 18 years (M = 14.50 years, SD = 1.46 years), of whom 17.6% reported a history of NSSI. As expected, poor family functioning was associated with engagement in NSSI. Among the emotion regulation variables, higher use of self-blame and lower use of refocus on planning was associated with NSSI. Self-blame and refocus on planning also mediated the relationship between family functioning and NSSI. Similarly, better family functioning and adaptive emotion regulation were related to recovery, while maladaptive emotion regulation was negatively related to recovery. Adaptive emotion regulation moderated the relationship between family functioning and NSSI recovery. We discuss how family-based interventions combined with emotion regulation education may help deter NSSI engagement.

Phenomenological and cultural understandings of recovery from the perspective of individuals who engage in nonsuicidal self-injury (NSSI) are rare. The primary study objective was to understand similarities across three samples in (a) how young people define recovery from NSSI and (b) what they consider helpful approaches taken by parents and professionals to assist their recovery. Using a cross-national sample of young people (n = 98) from Australia (n = 48), Belgium (n = 25) and the United States (n = 25), we assessed their perspectives on NSSI. Consistent across all samples, young people defined recovery as no longer having the urge to self-injure when distressed, often displayed ambivalence about recovery, and reported it was helpful when parents and professionals were calm and understanding. Acceptance of recovery as a process involving relapses may need to be emphasized in NSSI treatment, to ease the pressure young people often place on themselves to stop the behavior outright.

Nonsuicidal self-injury (NSSI) among adolescents poses a significant problem for schools, adolescents, and their families. However, appropriate guidelines for addressing NSSI, including when to disclose the behavior to parents, are currently lacking. The present study aimed to understand how school mental health staff and parents of secondary school students view NSSI to determine how parent--school communication about NSSI, and responses to NSSI, can be improved. Nineteen school mental health staff participated in interviews and 10 parents of adolescents with a history of NSSI completed open-ended questionnaire items. Staff identified that sector-wide NSSI policy and education for teachers and principals would help them feel more supported and improve consistency in addressing NSSI between and within schools. In contrast, parents wanted more support directed at them rather than solely their adolescent. Implications for policy and parental support provided by the school are discussed.

Aim: To explore the relationship between social care‐related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation. Method: As part of a larger pre‐post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables. Results: Seventy‐two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an 'ideal state' to 'high needs state'. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = −0.414, p < 0.000) and emotional representations of illness (r[70] = −0.503, p < 0.000), but not coherence (r = −0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127). Interpretation: Future research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL. What this paper adds: Caregiver social care‐related quality of life (SCrQoL) varied widely, from 'ideal state' to 'high needs state'.Most common high needs were doing enjoyable activities and self‐care.Caregivers with higher SCrQoL may perceive their child's illness as less threatening.SCrQoL does not appear to be related to caregiver activation in this sample. [ABSTRACT FROM AUTHOR]

A child's cancer diagnosis has a significant impact on the lives of grandparents. Grandparents experience the stress of worrying about both their adult children and their grandchildren. Our study aimed to explore the lived experience of grandparents of children diagnosed with cancer. A qualitative design involving semi-structured interviews was used and data were analyzed using reflexive thematic analysis. Twenty grandparents aged 41 to 77 years were interviewed. Six themes were identified: (a) Diagnosis: changing everything; (b) Aspects of treatment: A different world; (c) Sandwich generation; (d) Family: Worrying about everyone; (e) Balancing work; and (f) It's like suddenly a door opens. Our study demonstrates the life-changing impact of having a grandchild diagnosed with cancer. It expands on existing knowledge and shows that, due to an aging population and demographic changes, some grandparents must juggle the demands of caring for aging family members and working while supporting adult children and grandchildren. [ABSTRACT FROM AUTHOR]

Using the Conservation of Resources (COR) theory, we aimed to determine whether university students' loss and gain in resources during the pandemic mediated the relationships between COVID‐19 exposure/concern and depression and anxiety. In 2021, 7013 Israeli university students completed online questionnaires. We assessed the data using structural equation modeling. We found that resource loss was directly related to concern (β = 0.32, p < 0.001). Depression and anxiety were both directly related to loss of resources (depression: β = 0.75, p < 0.001; anxiety: β = 0.69, p < 0.001) and concern (depression: β = 0.06, p < 0.001; anxiety: β = 0.12, p < 0.001). Resource loss had an indirect effect on the relationships between concern and depression (β = 0.24, p < 0.001) and concern and anxiety (β = 0.22, p < 0.001). COR theory may help explain the mechanisms behind university students' mental health during the pandemic and provides a framework to better understand preparedness for future pandemics, epidemics, and major disasters. Governments and universities should help prevent the loss of resources during future emergencies. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Introduction: COVID-19 has had far-reaching impacts including changes in work, travel, social structures, education, and healthcare.Objective: This study aimed to explore the experiences of parents of children receiving treatment for cancer during the COVID-19 pandemic.Methods: Parents whose children were currently in treatment for childhood cancer or had completed treatment in the previous 12 months, participated in semi-structured interviews, face-to-face or via teleconferencing. Thematic analysis was used to analyze the data.Results: The sample consisted of 34 participants (17 fathers and 17 mothers) from all states across Australia. Median age 37.5 years (range 29-51, years, SD = 6.3). Five main themes were identified: "Welcome to the Club"; "Remote Work and Study"; "Silver Linings"; "The Loneliest Experience" with three sub-themes "Immediate Family"; "Friends"; and "Overseas Family" and "Lack of Support" with two sub-themes: "Community Support" and "Organized Support."Conclusion: These findings revealed contrasting experiences of the impact of the COVID-19 pandemic. For parents whose children were neutropenic, the pandemic provided benefits in increased community understanding of infection control. Parents also reflected that the movement to remote work made it easier to earn an income. In contrast, some parents observed that restrictions on visitors and family intensified feelings of isolation. Parents also described how the COVID-19 reduced access to support services. These findings contribute to an understanding of the multifaceted impacts of the COVID-19 pandemic on families of children with cancer. [ABSTRACT FROM AUTHOR]