Supporting families through paediatric brain tumour: Unmet needs and suggestions for change

Abstract Objective From diagnosis and beyond, a paediatric brain tumour and its treatment impact the child and their family in a myriad of ways. While it is considered best practice to offer ongoing psychosocial support for all family members, there is little scholarly investigation of both families' experiences and the practical implications of offering such care. We aimed to explore families' experiences of paediatric brain tumour and their associated psychosocial health service needs. Methods Families receiving care at the Queensland Children's Hospital in Brisbane, Australia, for a child (0–18 years) who had been diagnosed with a brain tumour between 2019 and 2022 were invited to be interviewed about their experiences. Using qualitative description, we analysed these interviews to identify families' unmet psychosocial health service needs and their suggestions for improvement. Results Twenty‐three clinically and socially diverse families were represented. While parents/carers expressed gratitude for the care their child had received, most also described unmet needs for the broader family. We identified three primary needs to be addressed: (1) parents want accessible psychological/emotional support for themselves; (2) parents/carers want additional guidance to navigate the hospital setting to reduce uncertainty and loss of control; and (3) parents want support to minimise treatment‐associated trauma for their child. Conclusions Our findings evidence the need for improved family‐centred psychosocial care within paediatric brain tumour care in Queensland, Australia. We propose a counselling and care coordination intervention to support parents/carers to care for themselves, their child, and their family through an extremely challenging experience.


| INTRODUCTION
Brain tumour is the most common and deadliest solid tumour for children worldwide. 1,2 While 5-year survival rates for most brain tumours in developed nations have improved in recent decades, around 26% of children diagnosed with a brain tumour will not survive. 3 Families must then face living the rest of their lives without their child. When a child does survive, they and their families must navigate complex additional concerns because of the brain tumour and treatment at a pivotal point in physical and cognitive development. 4,5 These include seizures, cognitive deficits, and behavioural changes.
Few scholarly studies have considered the psychosocial experiences and associated health service needs of families who have a child diagnosed with a brain tumour. A recent qualitative review suggests each family member has varying unmet needs (see Young et al. 6 and Young et al. 7 ). Mothers, for example, report shouldering the burden of a lack of healthcare, policy, and social support in the often lifelong complex care required for their child, while adolescents and adult survivors emphasised a lack of care to address their mental health, particularly around body image. 6 Quantitative studies suggest survivors of a brain tumour are more likely to experience depression and anxiety, and reduced self-esteem and quality of life, later in life. [8][9][10][11] Parental distress-particularly for mothers-remains high years after their child's treatment is completed. 12 Little is known about families' experiences soon after diagnosis and during treatment, with scant literature that explicitly explores and identifies what families want in terms of psychosocial health service delivery. 6 In 2015, an international and interdisciplinary group of 80 stakeholders developed and published the Standards for Psychosocial Care for Children with Cancer and Their Families (see Weiner et al. 13 ). These standards advocate for ongoing psychosocial support for all family members from the time of the child's diagnosis of cancer and beyond, recognising the complex interplay between the wellbeing of the child, caregivers, and family unit. 14 However, such standards may be difficult to implement due to little use of standardised psychosocial assessment measures, and a lack of funding for associated services and integrated care for all family members. [15][16][17] There is scant international research on the implementation of such standards or associated interventions, particularly with brain tumour where mortality is high and treatment involves many short and long-term biopsychosocial impacts for the child and family. 18 To the best of our knowledge, only one study with young adults has considered the Australian context where the aforementioned barriers are present, 19 in addition to the recent added complexities of the Covid-19 pandemic. 20 We aimed to explore the psychosocial care experiences and needs of all members in a family where a child has been diagnosed with a brain tumour, and how these may be best addressed within the current care system 21 in Queensland, Australia.

| METHODS
This study is part of a larger project aimed at improving psychological, social, and economic outcomes for families who have a child diagnosed with a brain tumour. This research was initiated by the requests of families and clinicians at the Queensland Children's Hospital (QCH), and the study protocol was reviewed through the consumer advocacy group, Brainchild (brainchild.org.au). QCH is a tertiary public hospital located in the city of Brisbane in the state of Queensland, Australia. Despite the state's vast geographical dispersion, covering an area of 1.853 million square kilometres, all children diagnosed with a brain tumour in Queensland receive centralised oncology care through QCH, which is in the South-East corner of the state. Our multidisciplinary research team includes clinical expertise in paediatric neuro-oncology, and academic expertise in psychology, public health, and qualitative research methods.
The study protocol was approved by the hospital's Human Research Ethics Committee HREC/19/QCHQ/53816.

| Participants and recruitment
Any family receiving care at QCH for a child who had been diagnosed with a brain tumour, or progression of a brain tumour, between 2019 and 2022 was eligible to participate. Children had to be under the age of 18 years at diagnosis of a malignant or non-malignant brain tumour, or a sibling of a child who met these criteria. Parent/caregivers had to be at least 18 years old. Due to a lack of available translation services, all participants had to be English speaking.
Possible families were identified at the weekly Solid Tumour Multi-disciplinary Team meetings by the clinical research nurse (Author B). If there was any concern regarding timing or appropriateness of approaching families, the neuro-oncology clinical nurse consultant was consulted for advice. Recruitment to the study followed established principles, giving families time to make decisions about their involvement. 22 If interested, Author B collected the participant's written informed consent and arranged a time of convenience to the family member/s to be interviewed.

| Data collection
We had originally anticipated that Author A would conduct the interview as she is a trained qualitative interviewer and, not being a clinician, was likely a 'neutral' person for families to speak with about their care experiences (see Young et al. 23 for original protocol).
However, policies implemented during the initial phase of the Covid-19 pandemic made it difficult for research staff to enter the hospital.
As such, we pivoted to Author A training our research nurse, Author B, to conduct most interviews. A semi-structured interview guide was YOUNG ET AL.
-943 developed, informed by our review, 6, 7 the study aims, and participants' responses in prior surveys and/or interviews within the larger study. Participants were also encouraged to discuss anything relevant to their experience beyond this guide. Interviews could be conducted by telephone or online video call, in person, in hospital, or at the co-located research facility. At the conclusion of each interview, participants were invited to email the study team if they wanted to arrange a later follow-up interview. Data were collected from February 2021 to December 2022.

| Data analysis
Interviews were transcribed verbatim through an external transcription service. We used qualitative description to identify families' unmet needs and suggestions for psychosocial care improvement at the system level. Qualitative description involves rich exploration of an experience or event where the researchers stay close to the data in both the analysis process and its presentation; it is particularly useful for medical research that seeks to describe patient and family experiences of a phenomenon. 24,25 Author A manually coded all transcripts using the software package, Nvivo, taking an inductive (data-driven) approach. She then grouped these codes into themes and sub-themes that were discussed and refined in several meetings with all authors who had varying familiarisation with the data having

| RESULTS
Participant characteristics are presented in Table 1. Twenty-three families are represented. Only one child elected to be interviewed and parents from four families participated in two interviews; for the purposes of this paper, only data from parents was included and data from multiple interviews with individual participants was pooled. Four children were in active treatment, two under observation with no treatment, one child had a terminal diagnosis, and the remainder were in remission with most having recently completed a treatment. We refer to participants as 'parents' unless the finding includes the one participant who is a relative and legal guardian of the diagnosed child. Each quoted participant is identified by their study identification number; brief descriptives for each are presented in Table 2.
Most parents/carers expressed gratitude for the care their child had received at the hospital. However, many also clearly described needs for themselves and their family that were not met by the current care system and gave suggestions for ways that this could be improved. Key points to action for intervention are outlined in Box 1.

| Theme 1: Parents and carers want accessible psychological/emotional support for themselves
Parents consistently discussed the need for access to psychological and emotional support for themselves, to (a) assist themselves to navigate a challenging and life-altering experience and to (b) enable them to better care for their child:  (ID 115). Others stated they would best benefit from a service offered when their child was in remission, when they had the Box 1 Parents' and carers' suggestions to improve psychosocial family wellbeing in paediatric brain tumour. � Provide a guide to families describing hospital layout, services, and processes, including: � Description of all hospital departments, staff within them, and how they relate to each other.
� Describe and map out hospital facilities for example, cafeteria, toy library.
� Describe day-to-day housekeeping within the hospital for example, timing of nursing shifts, food is available for parents/carers in this fridge, family toilet/shower location.
� Map out nearby facilities and services for families who do not live near the hospital for example, the nearest grocery store.
� List and describe all potential support services and financial assistance. Outline what services discontinue after time, departure from hospital, and/or treatment completing.
� Foster parents' autonomy over their child's care for example, reminder that they can request a nurse comes back another time to allow their child to sleep.
� Paper document or mobile phone application.* � Co-develop with families to incorporate their experiential knowledge.

Theme 3: Parents and carers want support to minimise treatment-associated trauma for their child.
� Provide parents with resources and support (e.g., occupational therapist, child co-developed resources) to prepare their child for procedures, contextualising the need for them within the broader 'story' of their child's illness.
� Support child to take control of aspects of their care, as appropriate.

| Theme 3: Parents and carers want support to minimise treatment-associated trauma for their child
Several parents, mostly of younger children, discussed the need for improved support to minimise treatment-associated trauma for their child. Specifically, parents reported their child was often hurried through procedures with little demonstrated consideration of the emotional impact on the child, and that parents felt unheard or dismissed when they suggested ways in which their child could be better supported. For example, one mother (ID 13)-for whom En- Those with adolescent children also spoke about giving their child control and autonomy over aspects of their treatment and the importance of having clinicians support this. Addressing the child's treatment goals and concerns was an essential element of this. One mother (ID 92), for example, spoke of her teenage son's concern about whether he would be able to play soccer after his surgery: He was … told by one of the doctors that you will have an injury from this, but not given any information

| Study limitations
Hospital restrictions related to the Covid-19 pandemic, coupled with the nature of brain tumour and its treatment, inhibited our plans to include the experiences of children from their own perspectives. 23 Recruitment was limited to a single Australian state, and those families who clinical staff deemed appropriate to contact and who could read and speak English. Nevertheless, parents of diverse families-in terms of both tumour type and treatment trajectory, and sociodemographic background-shared vital insight to their psychosocial care experiences and gave valuable suggestions for improvement.

| Clinical implications
The gold standard for psychosocial care in childhood cancer includes psychosocial support for all family members from diagnosis and beyond. 13,27 Our findings suggest this is not the experience of families in Queensland, with parents reporting minimal assessment of, and support for, their psychosocial functioning throughout their child's entire tumour trajectory. This is consistent with research conducted in America [15][16][17] and has been suggested by researchers trialling associated interventions in several countries including Iran, Sweden, Iceland, and Malaysia, 18 and in Canada 28 . 19 In our study hospital, with e280 referrals for childhood cancer each year, social work is universally offered to all families admitted to the oncology ward for 12 weeks only. There is designated psychological support for children but none available to parents/carers or siblings. While change at the hospital care system level is essential, a hospital-adjacent intervention may sooner address the psychosocial needs of families. A nurse-led counselling and education intervention to support carers of children with a brain tumour may improve caregiver psychosocial wellbeing (Theme 1). 29 Including standardised psychosocial assessment that is shared with the treating team, and a care navigation and coordination component, 30 may also improve families' access to hospital and community support services and resources (Themes 1 and 2). 28,30 To address paediatric medical trauma (Theme 3), there are several associated resources for families and clinicians to access, as summarised in De Young et al. 31 ; these too could be shared within the aforementioned counselling and education intervention.

| Conclusions
We can't yet cure cancer, but we can reduce associated distress for families. Consistent with other Australian and international studies, our findings clearly evidence the need for improved family-centred psychosocial care within paediatric brain tumour care in Queensland, Australia. While increased government funding and systemslevel change is desperately needed, a hospital-adjacent intervention may sooner address families' needs. We propose the development, implementation and evaluation of a counselling and care coordination intervention to support parents/carers to care for themselves, their child, and their family through an extremely challenging experience.