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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.
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INTRODUCTION: The currently accepted best practice radiation treatment for left breast cancer patients is Deep Inspiration Breath Hold (DIBH) where patients hold a deep breath to reduce late cardiac and pulmonary effects from treatment. DIBH can be challenging and induce or exacerbate anxiety in patients due to the perceived pressure to reduce radiation treatment side effects. This study explored the experiences of patients treated with Deep Inspiration Breath Hold Radiation Therapy (DIBH-RT) to improve patient-centred care and inform the design of multimedia educational tools for future patients undergoing DIBH. METHODS: This descriptive qualitative study was underpinned by a social constructivist approach to create new educational and patient care approaches based on previous patients' experiences. Semi-structured interviews were conducted with patients who had completed DIBH-RT for breast cancer. Data was analysed with reflexive thematical analysis. RESULTS: Twenty-two patients were interviewed with five key themes identified: (1) informational needs, (2) care needs, (3) autonomy, (4) DIBH performance influencers and (5) other centredness. Recommendations were derived from these themes to improve future treatments of DIBH patients. These recommendations revolved around improvements to education, patient-centred care and strategies to improve self-efficacy with breath holding. CONCLUSION: Patients offer a wealth of knowledge regarding their lived experiences with treatment which can enhance future patients' experiences if incorporated into their education and care. Eliciting patients' views of their DIBH-RT treatment highlighted the need to improve patient self-efficacy with DIBH through familiarity with their planned treatment from new multimedia education, and foster patient care to enhance their experience.
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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.
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Background: Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with. Methods: Responses from 188 carers of patients with HGG participating in a randomized controlled trial of the Care-IS intervention were analyzed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyze the qualitative data and observe trends across participant responses. Results: Five overarching themes were identified: carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression, and processing and supporting end-of-life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end-of-life care. Conclusions: Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centered on carer needs, their changed circumstances, living with uncertainty, and care transition.
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BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.