Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives

Ongoing access to psychosocial support is important to maintain the well‐being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals.


| INTRODUCTION
Primary brain tumor refers to a heterogeneous group of tumors originating within the skull. The three main types include benign brain tumor, lower-grade glioma and high-grade glioma. 1 Individuals with high-grade glioma have the poorest prognosis with an average 5-year survival rate of only 36%. 2 Lower-grade gliomas usually recur (52%-62% within 5 years) and/or progress to malignant (80% within 10 years). 3,4 Due to the high likelihood of tumor recurrence or progression and need for ongoing surveillance and treatment, individuals with glioma of any grade, face considerable uncertainty and existential distress. 5 Benign tumors are the most common type of brain tumor and, while not typically life-threatening, can be associated with significant functional impairments and symptoms negatively impacting the quality of survivorship. 6 Irrespective of tumor type, people with brain tumor (PwBT) face distressing changes to their physical, cognitive and behavioral functioning related to effects of the tumor and treatment. 7 Personality and behavioral changes can be particularly confronting and distressing for individuals and their caregivers. 8 Such effects compromise individuals' independence and social participation and place considerable strain on family relationships. 8,9 High rates of psychological distress have been reported in PwBT (22%-48%) [10][11][12][13] and family caregivers (26%-62%). [14][15][16][17] Supportive care in cancer [18][19][20] and brain tumor 21,22 refers to approaches, interventions, and services aiming to meet individual and family members' information, emotional, spiritual, social, or practical support needs across the disease trajectory. 23,24 Integral to supportive care, psychosocial support entails diverse components including psychoeducation, counseling or emotional support, and family, peer, and spiritual support to help individuals and/or family members to understand and cope with the illness. 25 Such psychosocial components of support may be provided by different health professionals (HPs) involved in the person's care, including medical, nursing, psychology, and allied HPs, as well as trained consumer advocates or peer supports.
Research on psychosocial support needs of PwBT and their families highlights the need for flexible and timely access to support based on individual needs from diagnosis into long-term survivorship and end-of-life care. 20,24 However, a recent survey 26

of 107 Australian
HPs identified variability in provision of psychosocial support according to HP discipline, setting and illness phase. Psychosocial support was more commonly provided to PwBT than family members.
System-level barriers to accessing psychosocial support included insufficient staffing and resources, waitlists and costs, poor service coordination and lack of staff with brain tumor-specific expertise.
Tumor characteristics also impacted service access, with individuals with benign tumors less likely to receive psychosocial management and those with malignant tumors rarely able to access rehabilitation services. Notably, HPs surveyed were typically referred PwBT as part of a mixed caseload in diverse settings (e.g., cancer, brain injury, disability, and mental health) with over half only seeing PwBT monthly or less frequently. Many of these HPs expressed a lack of knowledge of psychosocial support pathways most relevant or specific to PwBT.
Therefore, there is a need for a deeper understanding of psychosocial care pathways and practices specific to PwBT and how these vary across patient characteristics and clinical settings.

| Aims
This study aimed to identify Australian HPs' perceptions of psychosocial care pathways and practices specific to PwBT. The following questions were addressed.
(1) What are the existing pathways for PwBT and their families to access psychosocial care across different illness phases?
(2) How does access to psychosocial support differ according to patient characteristics and the clinical context? 2 | METHODS

| Participants and recruitment
Health professionals routinely involved in providing supportive care to PwBT and their families were eligible to participate. We aimed to LION ET AL.
-981 recruit a minimum of 20 HPs from different disciplines, clinical settings, states, and territories across Australia. Participants were recruited from a national survey of 107 HPs, 26 which invited them to indicate interest in being interviewed. After initial recruitment of 14 HPs, purposeful and snowballing sampling was used to recruit a further seven participants to increase representation of different disciplines and clinical settings. Prospective participants were contacted via email or telephone and received an electronic copy of the information and consent form. All participants provided verbal consent.

| Data collection
A semi-structured interview topic guide (Table 1)

| Data analysis
Transcripts were anonymized and imported into NVivo (QSR International Pty Ltd). Data were analyzed using a six-step thematic approach, involving both inductive and deductive strategies to identify subthemes and themes relevant to the research questions. 28,29 The first transcript was coded by three researchers (KL, TO, MH) to develop a preliminary coding framework. Five transcripts were then independently coded by two researchers (89% agreement on category-level coding). The remaining transcripts were coded by KL who regularly met with other co-authors to collaboratively discuss and consolidate codes. Similar codes were aggregated to generate representative themes and subthemes (Supplementary material 2).

| Sample characteristics
The 21 participants (81% female) included seven psychologists, four nurses, four allied HPs, three medical professionals and three cancer support advisors (Table 2). Four worked as cancer care coordinators (3 nurses, 1 occupational therapist) and three had prior personal experience of brain tumor or were family caregivers to PwBT.
Approximately half of the participants had >10 years of experience working with PwBT and most worked in hospital settings (71%).

| Themes
The thematic analysis generated three over-arching themes. The first theme, Challenges in fitting people into the care system within existing pathways, addresses the research questions regarding existing psychosocial pathways and access to support by characterizing the challenges HPs perceive in supporting the varied needs of PwBT across the illness within the healthcare system. 3.2.1 | Theme 1: Challenges in fitting people into the care system within existing pathways

Psychosocial care variations based on tumor type
People with high-grade glioma are more likely to have access to psychosocial support because interdisciplinary care is typically integrated into their longer-term medical management, which includes regular contact with care coordinators for symptom monitoring and healthcare appointments. Some sites offer psychosocial support to all patients with high-grade glioma. Conversely, people with benign tumors or lower-grade gliomas are not always treated within oncology settings as their disease is not malignant, rendering them ineligible for care coordination services. Health professionals recognized the need for such services; however, access was lacking: They obviously need to have a cancer diagnosis -just having a brain tumor alone, they wouldn't be eligible for our service, it needs to be a medical malignancy (P16). The diagnosis can also limit access to peer support: There's certainly a history of people with benign brain tumor feeling like T A B L E 1 Semi-structured interview topic guide.

Topic guide
1. HP demographics and work characteristics.

HP scope of practice, role and clinical setting:
-Referral pathways for psychosocial support for PwBT and their families. -Variations in support according to health characteristics or factors influencing access (e.g., tumor type, geography, socio-cultural background). -Scope of psychological/emotional/social support provided within their role.
3. HP perceptions of scope, gaps, and limits to psychosocial support within their service context and their state/territory.
they've been excluded from brain tumor groups because they didn't have cancer (P18).

Access to psychosocial support varies across the illness trajectory
Individuals are more likely to receive psychosocial support soon after diagnosis and in the acute treatment phase: So often, I think they get a lot of intense support when they're coming in to see us, like they come in daily for 6 weeks, and they'll then be on like a 3-week chemotherapy cycle for a little while. But after that active treatment has stopped, there's probably a gap for a lot of people getting that psychological support (P4).  -983 People with brain tumor discharged without outpatient followup tend to have limited access to psychosocial support due to lack of ongoing contact with HPs. People who experience longer-term survivorship, most typically those with benign or lower-grade glioma, often face different challenges, but rarely qualify for or have access to psycho-oncological management.
I've got a group of young men in their 30 and 40s, who've been diagnosed with Grade II/III brain tumors and they've been told they've got sort of between five and 10 years survival… they're still physically functioning, but psychologically, they can't get past the fact that they were given this, as they see it, a death sentence and it's really hard to support them, because they're not necessarily an active cancer patient (P10).

Social impacts of brain tumor
The entire family system is affected by brain tumor due to the sudden onset and long-term care needs of PwBT: As soon as the diagnosis has come, the person diagnosed has had to stop working, generally the partner or full-time carer has had to stop work as well (P17).
Initially, social workers based in hospitals have a key role in providing practical support to PwBT and their families, including financial and legal support and access to funding through disability schemes: the [scheme] process can bring them assistance into the home….
It can also bring in support workers to allow the carer to return to work or to have some respite or some freedom (P17). However, due to the nature of the disease and its prognosis, people with brain cancer face greater challenges accessing long-term disability support.  40 ).
For those exhibiting distress, more comprehensive psychological assessment is warranted to distinguish 'normal' adjustment reactions from clinically significant depression or anxiety to guide referrals for psychosocial care. 18 Psychosocial support also needs to be accessible irrespective of geographic location, potentially through telehealth delivery, 23

| Limitations
Although purposive sampling was used to recruit HPs representing different disciplines, clinical settings, and Australian states and territories, some disciplines (e.g., social work & psychiatry) and settings (private practice & community) were underrepresented, which may impact the psychosocial care pathways depicted.
Further, only Australian HPs were interviewed and therefore the applicability of the findings to other socio-cultural contexts and healthcare systems is unknown. It is recommended that future research examines differences in psychosocial care pathways be-