Captains on call: A qualitative investigation of an intervention to support children with retinoblastoma undergoing regular eye examinations.

BACKGROUND: Retinoblastoma is a rare childhood ophthalmic cancer that requires frequent eye examinations under anaesthesia and painful or distressing procedures. This can cause significant anxiety for children and their families. OBJECTIVE: We evaluated a Starlight Children's Foundation programme, 'Captains on Call', at the Queensland Children's Hospital, which aims to provide positive distraction and reduce stress, anxiety and pain during the perioperative journey for children in the retinoblastoma treatment pathway. This study examined the impact of the programme on the perioperative experience of the children and their families, using a qualitative design. METHODS: This study was conducted in a paediatric operating suite at a tertiary-level children's hospital in Australia. We interviewed a parent from 20 families (from a cohort of 40 families, including 44 children), whose children received treatment or screening for retinoblastoma, focusing on the programme's impact on the child and family at various stages during the perioperative journey. We undertook a thematic analysis of transcribed interviews. RESULTS: We identified two themes, each with two sub-themes: (1) the programme positively contributed to the overall treatment journey, by addressing different needs at different times, and helping to reframe a traumatic medical experience, and (2), the programme supported the whole family unit by empowering children through play, and adopting a family systems approach which recognised the impact of cancer treatment on the whole family. CONCLUSION: This study highlights the value of the Captains on Call programme in supporting children with retinoblastoma and their families during perioperative visits. The Captains, particularly as non-medicalised professionals in a healthcare setting, built trust and rapport with the children through play over repeated episodes of care. The interprofessional collaborative approach with a reflective cycle of practice extended it beyond a programme providing simple distraction. Other retinoblastoma services may benefit from implementing a similar approach.

Wellbeing and distress in young people with chronic conditions: how do positive psychology variables relate to mental health outcomes?

Objective: The aim of this study was to determine the unique and shared contributions of various positive psychology constructs (gratitude, optimism, hope, self-compassion, self-efficacy, and emotion regulation) to wellbeing and distress outcomes in young people living with a diverse range of chronic health conditions. Methods and Measures: 169 Australians (84.0% female, mean age = 21.2) who reported living with a chronic physical condition completed a cross-sectional survey assessing wellbeing, distress, and each positive psychology variable. Two multiple regressions were used to determine the unique and shared contributions of the positive psychology variables to wellbeing and distress outcomes. Results: When considered alongside symptom severity, the variables explained 53.4% and 38.1% of variance in distress and wellbeing, respectively. Only optimism and self-efficacy accounted for unique and significant variance in the model predicting wellbeing, accounting for 6.1% and 4.6% of unique variance, respectively. For the distress model, optimism, self-compassion, and emotion regulation each accounted for significant variance. When considered alongside other variables, hope and gratitude did not contribute to either model. Conclusion: Findings suggest that individual positive psychology variables differentially contribute to wellbeing and distress outcomes in young people with chronic conditions. Optimism appears to account for unique variance in both outcomes, suggesting it may be a parsimonious target to promote complete mental health in this population.

A Review of Creative Play Interventions to Improve Children's Hospital Experience and Wellbeing.

CONTEXT: Being in the hospital can be stressful for children and caregivers. Evidence-based play interventions to reduce this stress, such as play therapy or Child Life services, have been introduced in hospitals globally, with growing awareness of potential benefits. OBJECTIVES: To evaluate the impact of nonmedical/illness-specific creative or play-based programs in hospital settings on children's (<18 years) and their caregivers' hospital experiences, wellbeing, and other health outcomes. DATA SOURCES: PubMed, CINAHL, Google Scholar. METHODS: We conducted a systematic review of original articles published since 2011, screening 2701 de-duplicated articles. RESULTS: We identified 25 eligible articles, representing 1629 children (57% male), 422 caregivers, and 128 health professionals. Included studies most commonly evaluated professional children's entertainers (n = 8 studies), music therapy (n = 4), unstructured play (n = 3), and humanoid/animal robots (n = 3). Most studies evaluated the impact on the child's level of anxiety (n = 14/25), mostly supporting a reduction (n = 13/14 studies). Several studies provided evidence for a reduction in children's pain (n = 4/6), and negative emotional/behavioral outcomes (eg, sadness, anger, irritability; n = 5/6 studies). There was mixed evidence for the impact of the included interventions on physiologic outcomes (eg, systolic pressure, heart frequency; n = 3/5 studies) and fatigue (n = 1/2 studies). Evidence on caregiver outcomes and the impact on health care services was limited. CONCLUSIONS: The findings of our review generally supported the value of play-based interventions on children's' wellbeing while in the hospital, particularly reducing anxiety and pain. Further evaluation of their impact on caregivers' outcomes and the health care system is needed.

Priority setting for children and young people with chronic conditions and disabilities.

BACKGROUND: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. METHODS: We conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia. RESULTS: In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis. CONCLUSIONS: The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. PATIENT OR PUBLIC CONTRIBUTION: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.

Facilitating the Voice of Adolescents in Hospitals Through Art: A Case Report.

Adolescence can be a challenging time, but even more so when diagnosed with a serious or chronic illness. Starlight Children's Foundation established the Livewire program after recognizing the unique needs of adolescents in hospitals. This article describes our experience of implementing an art-based project within the Livewire program, designed to facilitate the voice of adolescents with a serious or chronic illness and their siblings. We invited young people across Australia to contribute their artwork which would be used as the design for a deck of playing cards. The final 54 cards were a creative reflection of the unique interests, personalities, and experiences of 45 young people. In this article, we also share the experiences of two young people who contributed to this project. We conclude with our learnings in delivering an art-based project for young people that is not presented directly as "therapy".

Evaluation of an In-Hospital Recreation Room for Hospitalised Children and Their Families.

OBJECTIVE: Many children's hospitals have established 'recreation rooms' to help reduce distress among hospitalised children and families. We investigated recreation rooms in two Australian children's hospitals to determine: 1) families' first use of the room (including discovery and delays); 2) characteristics of families accessing the room; 3) parents' positive and negative associations with the room; and 4) parents' most and least valued aspects of the room. METHOD: Using a concurrent mixed methods design, parents completed questionnaires (Restorative Experiences Tool, Parenting Stress Index-Short Form, Paediatric Quality of Life Inventory) and an optional interview. We analysed data using t-tests and multiple regressions (questionnaires) and content analysis (interviews). RESULTS: Parents (n = 123) commonly reported delays in accessing the recreation room (n = 74, 60.2%). Parents' distress was positively related to their frequency of room use (r = 0.28, p = .001). Families of hospitalised children with lower physical (r = -0.36, p < .001) and psychosocial (r = -0.31, p = .001) functioning used the room more frequently than families of children with higher functioning. Parents reported more positive than negative associations with the rooms for themselves (t(121) = 20.92, 95% CI = 4.34-5.25), their hospitalised child (t(117) = 23.91, 95% CI = 5.00-5.90), and any siblings (t(79) = 15.76, 95% CI = 4.28-5.52). Thirteen parents completed the interviews. We identified three themes: 1) respite; 2) social support and reduced isolation; and 3) need for greater accessibility (particularly for infants/toddlers). CONCLUSIONS: Respite and social support provided within the recreation rooms may be particularly important for highly distressed parents and families of children with lower psychosocial and physical functioning. Dedicated areas for different age groups may help to improve accessibility of the recreation rooms.

Positive distraction for children during burn wound care in Australia - An evaluation of the 'Captains on Call' pilot.

INTRODUCTION: Burn wound care procedures can cause severe pain to the child, and distress for both the child and caregivers. We evaluated a new Starlight Children's Foundation program, 'Captains on Call', which aims to provide positive distraction during burn wound care procedures to reduce the child's anxiety and pain. This paper presents a preliminary evaluation, using a qualitative design, of Captains on Call at the Women's and Children's Hospital, Australia. METHODS: We conducted interviews with caregivers (n = 18), patients (n = 6), nurses (n = 5) and Captain Starlights (n = 3). Interviews focused on program impact and recommendations for how to improve the program. RESULTS: We identified seven themes: (1) positive distraction from pain and boredom, (2) benefit of additional support, (3) creating positive memories of the hospital, (4) catering for unique needs of each patient and family, (5) general appreciation, (6) importance of regular visits, and (7) a desire to expand the program. All caregivers, nurses and patients reported that they were likely to recommend the program to others. CONCLUSION: This study provides early evidence to support the benefit of the Captains on Call program to families and health professionals, as well as the feasibility in providing this integrated care.

Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer.

The purpose of this article is to review the current literature on the provision of support groups for adolescent and young adult (AYA) patients with cancer with a focus on the challenges that are faced by these initiatives. The value of group support to patients with cancer and particularly to this age group has been well documented. However, with the advent and increase in popularity of online support options, it is an opportune time to examine the options available to the AYA group and highlight areas that would benefit from further investigation. This article will review the literature on the need to provide support groups to this age group, the available options, and the challenges they face.