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

Lion, Katarzyna; Pike, Kerryn E.; Dhillon, Haryana M.; Koh, Eng‐Siew; Pinkham, Mark B; Shaw, Joanne; Halkett, Georgia; Ownsworth, Tamara

doi:10.1002/pon.6142

Cited by 8 publications

(4 citation statements)

References 47 publications

(78 reference statements)

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“…Our findings highlighted the high proportion of participants who had engaged with peer support, with a key theme around its perceived value. This is consistent with a large amount of previous research highlighting the benefits of peer support in relation to general cancer and benign brain tumour populations (Wong et al 2011;Jablotschkin et al 2022;Ownsworth et al 2022;Lion et al 2023) as well as AN (e.g. Brooker et al 2009).…”

Section: Peer Supportsupporting

confidence: 91%

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Ben-Harosh,

Barker-Collo,

Nowacka

et al. 2024

Brain I.

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Background Acoustic neuromas (ANs) are consistently associated with decreased quality of life (QOL) related to the physical and psychosocial impacts of symptoms experienced from the tumour and its treatment. This study explored patient-reported experiences of ANs in New Zealand, with a focus on the impact on QOL and the provision of information, support and services. Methods A mixed methods approach was taken, conducting an online community survey that included the Penn Acoustic Neuroma Quality of Life Scale (N = 52). Those who indicated interest were offered semi-structured interviews after the survey (N = 17), which were analysed using content analysis. Results A negative impact on QOL was found, highlighting five key themes in the experiences of people: (1) ongoing physical, social and psychological impacts; (2) information and support from the medical system; (3) autonomy and decision-making; (4) the importance of peer support; and (5) remaining positive – life goes on. Conclusions Our findings indicate areas for improvement that may benefit people’s healthcare experience and QOL. Both quantitative and qualitative results identified gaps associated with person-centred care and the need for information, education, emotional support and access to services. Recommendations include a need for more information (verbal and written) during all stages of diagnosis and treatment, shared decision-making and increased access to allied health, including psychological services and support groups.

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Section: Peer Supportsupporting

confidence: 91%

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Ben-Harosh,

Barker-Collo,

Nowacka

et al. 2024

Brain I.

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“…Despite variations in disease characteristics, treatment pathways and prognosis, 2 individuals with PBT regardless of subtype experience stressors related to diagnosis and complex neurocognitive impairments which significantly impact their mental health. 2,3 High rates of depression and anxiety (30%-50%) persist beyond the initial treatment phase for both individuals with PBT and caregivers. 4,5 Despite the significant psychosocial impacts, there are few evidence-based interventions for improving mental health and QoL of people with PBT and their caregivers.…”

Section: Introductionmentioning

confidence: 99%

“… 1 PBT broadly encompasses three subtypes: benign (non‐malignant) tumor, lower‐grade glioma (less aggressive initially, but risk of progression or recurrence over time) and high‐grade glioma (malignant). Despite variations in disease characteristics, treatment pathways and prognosis, 2 individuals with PBT regardless of subtype experience stressors related to diagnosis and complex neurocognitive impairments which significantly impact their mental health. 2 , 3 High rates of depression and anxiety (30%–50%) persist beyond the initial treatment phase for both individuals with PBT and caregivers.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial

et al. 2023

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ObjectiveThis pragmatic randomized control trial aimed to evaluate clinical efficacy of the Making Sense of Brain Tumour program delivered via videoconferencing (Tele‐MAST) for improving mental health and quality of life (QoL) relative to standard care in individuals with primary brain tumor (PBT).MethodAdults with PBT experiencing at least mild distress (Distress Thermometer ≥4) and caregivers were randomly allocated to the 10‐session Tele‐MAST program or standard care. Mental health and QoL were assessed pre‐intervention, post‐intervention (primary endpoint), and 6‐weeks and 6‐months follow‐up. The primary outcome was clinician‐rated depressive symptoms on the Montgomery‐Asberg Depression Rating Scale.Results82 participants with PBT (34% benign, 20% lower‐grade glioma, 46% high‐grade glioma) and 36 caregivers were recruited (2018–2021). Controlling for baseline functioning, Tele‐MAST participants with PBT had lower depressive symptoms at post‐intervention (95% CI: 10.2–14.6, vs. 15.2–19.6, p = 0.002) and 6‐weeks post‐intervention (95% CI: 11.5–15.8 vs. 15.6–19.9, p = 0.010) than standard care, and were almost 4 times more likely to experience clinically reduced depression (OR, 3.89; 95% CI: 1.5–9.9). Tele‐MAST participants with PBT also reported significantly better global QoL, emotional QoL and lower anxiety at post‐intervention and 6‐weeks post‐intervention than standard care. There were no significant intervention effects for caregivers. At 6‐months follow‐up participants with PBT who received Tele‐MAST reported significantly better mental health and QoL relative to pre‐intervention.ConclusionsTele‐MAST was found to be more effective for reducing depressive symptoms at post‐intervention than standard care for people with PBT but not caregivers. Tailored and extended psychological support may be beneficial for people with PBT.

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“…Beyond this, the existing literature for caregiving burden in ICs of people with LGGs is limited, with studies typically including heterogeneous samples of LGG and HGG care recipients (Chen et al, 2021), groups which have very different prognoses (Pellerino et al, 2022). Moreover, available support services and interventions for ICs have largely been developed for ICs of people with HGGs (Heinsch et al, 2022) and lack continuity across the illness trajectory (Lion et al, 2023); thus, ICs of people with LGGs may have limited access to formal support. The nature of the prognosis, the impact of the tumour and its treatment, and limited available support services may mean, therefore, that ICs of people with…”

mentioning

confidence: 99%

‘A Constant Black Cloud’: The Emotional Impact of Informal Caregiving for Someone With a Lower-Grade Glioma

Rimmer,

Balla,

Dutton

et al. 2023

Qual Health Res

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Those closest to people with lower-grade gliomas (LGGs) often assume the role of informal caregiver (IC). The additional responsibilities mean ICs of people with cancer can experience adverse impacts on their own lives. We explored the emotional impact of informal caregiving for people with LGGs. This was a descriptive qualitative study within the multi-method Ways Ahead project. We conducted semi-structured interviews with individuals from the United Kingdom, who currently, or in the past 5 years, informally cared for someone with an LGG. Interviews encompassed experiences of emotional impact as a consequence of caregiving for someone with an LGG. Inductive thematic analysis was undertaken. We interviewed 19 ICs (mean age 54.6 years; 14 females, 5 males). Participants reported substantial emotional impact. Four themes and associated subthemes were generated: Emotional responses to the illness (e.g. feeling helpless), Emotional responses to the unknown (e.g. anxiety about future uncertainty), Emotional consequences of care recipient changes (e.g. challenges of changed relationship dynamics), and Emotional weight of the responsibility (e.g. feeling burnout). Emotional impact in one area often exacerbated impact in another (e.g. future uncertainty impacted feelings of helplessness). Participants detailed the factors that helped them manage the emotional impact (e.g. being resilient). ICs of people with LGGs can experience wide-ranging emotional responses to and impacts of the illness, uncertain prognosis, care recipient changes, and the toll of caregiving. Adjustment and resilience are key protective factors, though further consideration of ways to identify and fulfil the emotional support needs of ICs of people with LGGs is required.

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

Cited by 8 publications

References 47 publications

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial

‘A Constant Black Cloud’: The Emotional Impact of Informal Caregiving for Someone With a Lower-Grade Glioma

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