Don’t need help, don’t want help, can’t get help: How patients with brain tumors account for not using rehabilitation, psychosocial and community services

Highlights

• Patients may downplay or not recognize their issues or problems.

• Patients may not understand if their issues are ‘normal’ or can be treated.

• Patients may wish to self-manage or use informal sources of support.

• Patients’ limitations may themselves act as barriers to accessing services.

Abstract

Objective

To understand why some adults with primary brain tumors do not use support services despite indications of a need for help.

Methods

Nineteen adults recently diagnosed with primary brain tumors participated in semi-structured interviews. Thematic analysis was used to identify recurrent ways participants explained their non-use of support services.

Results

Some patients indicated that they did not use support services as they did not need help, in particular reporting positive experiences relative to their expectations or to others, that their needs were met, or difficulties recognizing their needs. Some patients reported not wanting help, citing preferences to self-manage, other priorities, or negative perceptions of the services available. Many patients identified barriers to support service utilization, particularly problems recognizing that services could address their needs and that their needs were valid concerns.

Conclusion

The gap between patients’ needs and their service use may result from patients’ expectations from the medical system, shifting of standards for well-being, cognitive changes, and access issues.

Practice implications

Addressing knowledge barriers and perceptions relating to help-seeking, as well as recognizing the challenges specific to this patient group in terms of need recognition and access issues, may assist in improving patients’ physical, psychological and social well-being.

Introduction

Primary brain tumors are associated with numerous physical, cognitive and neurological impairments, and psychosocial sequelae to the tumor and its treatment [1], [2]. Patients often experience functional, occupational, family and social changes, and high levels of unmet supportive care needs [3], [4], [5]. Clinical guidelines for glioma, the most common primary brain tumor, recommend offering patients multidisciplinary rehabilitation to address any residual deficits during and following treatment [6], [7]. Assessment of patients’ needs and referral to information, support and counseling services, and sources of practical assistance, are also recommended [8], [9].

Although a clear pathway including assessment of unmet needs, appropriate clinician referral, patient use of services, and subsequent resolution of unmet needs would be ideal, few people affected by brain tumors experience such care. We recently conducted a population-based study in the Australian state of Queensland to assess the supportive care needs and use of multidisciplinary rehabilitation, community and psychosocial services, collectively referred to hereafter as ‘support services’, among adults recently diagnosed with a primary brain tumor [10]. Participants reported high levels of unmet needs; forty to seventy percent of patients had a moderate to high level of need for help with each of the five most prevalent supportive care needs at each time point. Patient awareness of support services was high, with all or almost all participants being aware of at least one support service in each category of information, health professionals, support and counseling, and practical assistance. Clinician referral to services varied across categories, but the proportion of patients referred to at least one service in each category ranged from 47% to 81%. However, use of support services was low relative to need, particularly for support and counseling services and practical assistance.

Our results add to growing evidence that a gap between patients’ needs and their use of supports or support services exists [2], [3], [4], [11], [12], [13]. The gap may be partly due to factors relating to the availability of appropriate services, particularly in regional or rural areas [14]. Low clinician rates of referral of people with brain tumors to support services have been demonstrated in the US [15], the UK [16], and Australia [17]. Even if support services are available and accessible, however, patients must choose to use them.

A number of studies have qualitatively explored the reasons why patients with brain tumors use support services of various kinds. These studies suggest that patients want support services to help address their needs for information, navigate through bureaucratic processes, and to return to pre-treatment responsibilities or prepare for long term care [18]. Patients with brain tumors found brain tumor-specific support services valuable for understanding their illness and receiving emotional support [19], and brain tumor support groups helpful to maintain morale [20]. Health professionals were seen as able to provide expert opinion, treatment and support, which was valued as patients grappled with uncertainty over their prognoses and how their diagnoses would affect their quality of life [21]. Cognitive and physical rehabilitation services were used to help patients to understand their impairments and develop strategies to manage them [19], and to ‘get back to normal’, gain independence, maintain hope, and connect with everyday life [22]. To the best of our knowledge, no study has specifically investigated why patients with brain tumors do not use support services, although Hackman suggested that some patients may not understand the purpose of rehabilitation in light of a poor prognosis [22].

The reasons why patients with primary brain tumors do not access support services is unclear. This paper reports a qualitative study designed to explore the experiences of adults with primary brain tumors who have unmet needs. Our purpose here is to explore the reasons reported by patients with brain tumors when explaining their non-use of support services to address their unmet needs.