Interventions to help support caregivers of people with a brain or spinal cord tumour

Boele, Florien; Bulbeck, Helen; Browne, Catherine M.; Rooney, Alasdair G; Sherwood, Paula R.

doi:10.1002/14651858.cd012582

Cited by 8 publications

(11 citation statements)

References 30 publications

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“…Family support was more common in oncology settings, which may reflect the emphasis on carers within optimal care pathways for cancer and palliative care. 12,35 In research on family support, caregivers are typically involved in the same intervention as PwBT, [21][22][23]36 with few focused on the information and emotional support needs of family caregivers. 24,36 Accordingly, psychological support specific to family members was viewed as a gap by our respondents.…”

Section: Discussionmentioning

confidence: 99%

“…12,35 In research on family support, caregivers are typically involved in the same intervention as PwBT, [21][22][23]36 with few focused on the information and emotional support needs of family caregivers. 24,36 Accordingly, psychological support specific to family members was viewed as a gap by our respondents. Clinical guidelines for cancer highlight the need for caregiver support to extend from time of diagnosis through to bereavement.…”

Section: Discussionmentioning

confidence: 99%

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Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families

et al. 2022

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Objectives This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. Method Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. Results 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%–76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family‐based support (62%–73%). Psychological support was more frequently provided in the long‐term management phase (78%) than early post‐diagnosis/treatment (45%). System‐level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor‐specific training. Conclusions The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families

et al. 2022

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“…For this, it will be important for the relatives to feel welcomed, acknowledged and listened to and be considered as an essential part of the family [34]. Furthermore, research needs to be done regarding interventions for relatives of patients with glioblastoma, on which the body of literature regarding brain tumors is small and inconclusive [35]. Therefore, in the care of seriously ill patients, person-centered care is preferred and in case there are close relatives, he or she should be valued as an important part of this care.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life and emotional well-being in patients with glioblastoma and their relatives

et al. 2020

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Purpose The health-related quality of life (HRQoL) for patients with glioblastoma is known to be largely affected. Little is known about the HRQoL for relatives and the relationship between these two. To optimize family care, such issues need to be addressed early on, preferably from the time of diagnosis. This study aimed to describe and compare the HRQoL of patients with glioblastoma and their relatives before surgery. Methods A prospective cohort study including 89 patients diagnosed with glioblastoma and their relatives. HRQoL (Short Form Health Survey, SF-36) and emotional well-being (hospital anxiety and depression scale, HADS) were analysed with descriptive, comparative and multivariable regression analyses. Results Relatives scored worse for mental HRQoL (p < 0.001) and for symptoms of anxiety (p < 0.001) and depression (p = 0.022) compared to patients. The multivariable regression showed an increased risk of affected mental HRQoL in relatives of patients with poor functional status (WHO) (p = 0.01) and higher levels in symptoms of anxiety (p = 0.03), or when relatives had low physical HRQoL themselves (p = 0.01). There was increased risk of affected mental HRQoL in patients with comorbidities (p = 0.003), and when the respective relative showed higher levels in symptoms of anxiety (p = 0.005). Conclusion Relatives scored worse for mental HRQoL and emotional well-being than patients, suggesting that HRQoL in patients and relatives might be connected to symptoms of anxiety in the respective individual at disease onset. The results illustrate the need to screen HRQoL and emotional well-being in both patients and relatives from an early stage—before surgery.

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“…Sherwood and colleagues [16] undertook a narrative review of neuro-oncology family caregiving. Boele and colleagues [17] conducted a systematic Cochrane review identifying three randomised controlled trials (RCTs) of supportive interventions for carers of adults with HGG [18][19][20]. Ownsworth and colleagues [21] explored the use of telehealth platforms to deliver supportive care and identified participation by HGG carers in four studies [22][23][24][25].…”

Section: Introductionmentioning

confidence: 99%

Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review

Jones

Pinkham

Wallen

et al. 2022

Support Care Cancer

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Purpose To systematically review and examine current evidence for the carer-reported benefits of supportive care strategies for carers of adults with high-grade glioma (HGG). Methods Four databases (CINAHL, EMBASE, PubMed, PsycINFO) were searched for articles published between January 2005 and April 2022 that assessed strategies for addressing the supportive care needs of carers of adults with HGG (WHO grade 3–4). Study selection and critical appraisal were conducted independently by three authors (DJ/MC, 2021; DJ/RJ 2022). Data extraction was conducted by one author (DJ) and checked by a second author (RJ). Results were synthesised narratively. Results Twenty-one studies involving 1377 caregivers were included, targeting the carer directly (n = 10), the patient-carer dyad (n = 3), or focused on people with HGG + / − their carers (n = 8). A paucity of high-quality evidence exists for effective and comprehensive support directly addressing outcomes for carers of adults with HGG. Strategies that demonstrated some benefits included those that built carer knowledge or provided emotional support, delivered by health professionals or through peer support. Supportive and early palliative care programmes have potential to reduce unmet carer needs while providing ongoing carer support. Conclusion Strategies incorporating an educational component, emotional support, and a regular needs assessment with corresponding tailored support are most valued by carers. Future practice development research should adopt a value-based approach and exceed evaluation of efficacy outcomes to incorporate evaluation of the experience of patients, carers, and staff, as well as costs.

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Interventions to help support caregivers of people with a brain or spinal cord tumour

Cited by 8 publications

References 30 publications

Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families

Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families

Health-related quality of life and emotional well-being in patients with glioblastoma and their relatives

Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review

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