Understanding the supportive care needs of glioma patients and their relatives: a qualitative longitudinal study

Background: Malignant cerebral glioma is a rare cancer but has a devastating impact on patients and their families. In Scotland each year, around 450 people are diagnosed with glioma. Prognosis is generally poor and treatment is essentially palliative. There is a growing recognition that non-clinical aspects of care for both patients and their families need to be acknowledged and integrated into health care provision in line with a patient-focused ethos of care. Currently, there is relatively little research exploring the psychosocial issues and needs of this patient group. Aims: To give patients being investigated for malignant cerebral glioma and their families the opportunity to describe their shared experiences of their illness journey and voice their concerns and unmet needs. To examine how these experiences and needs change over time as the patient progresses through the illness journey. To ascertain the extent to which these needs are recognised and supported, taking into accounts professionals’ views and making suggestions for steps forward in improving patients’ psychosocial care. Methods: A total of 80 qualitative prospective longitudinal interviews (30 paired and 50 separate) were conducted with 26 people with a suspected or confirmed diagnosis of malignant cerebral glioma being treated at a regional hospital and 24 primary relative/informal carers. Patients and carers were interviewed at the following five times: leading up to diagnosis; following a formal diagnosis; around the end of initial treatment (radiotherapy); at a designated six-month follow-up stage; and bereavement interviews with carers. One-off interviews were carried out with 66 health professionals (19 case-linked GPs and 47 other health, health-related and social care professionals involved in patients' care). Interviews were recorded and transcribed verbatim and analysed using the constant comparative method from a grounded theory approach assisted by QSR NVivo Version 7. Findings: Distress, anxiety and shock were overwhelming reactions in the period leading up to a diagnosis of glioma, making it difficult for participants to make sense of their experience. Over time, participants employed a range of strategies in order to cope with their diagnosis. Social and emotional support from professionals and friends, family and other patients were vital in many cases but support often felt inadequate. The role of information and the manner in which it was communicated was closely linked to participants’ ability to cope. Information needs were variable but on the whole patients and carers did not feel well informed. Dealing with cognitive and physical symptoms of their illness and side effects of treatment inhibited patients’ ability to resume their everyday activities. The lives of relatives were also affected as they struggled to care for their loved ones. People with a diagnosis of glioma were faced with the possibility of death from an early point in their illness trajectory and awareness of this, coupled with ability to make sense of existential issues, varied across participants. Issues around support, communication, information and palliative care were considered to be important among health professionals involved in the care of people with a diagnosis of glioma but provision fell short. Conclusions: Concerns regarding information, communication and support reported elsewhere in the literature are enduring in glioma patients and their relatives. Reporting of unmet psychosocial and supportive care issues by patients and recognition by professionals of the need to improve these dimensions of care for people affected by glioma emphasises previous recommendations yet to be fully implemented into patient care