This qualitative multi case research asks how the needs of caregivers of primary malignant brain tumour (PMBT) patients are met through structured neuro-oncology programs in Canadian centres. Utilizing telephone interviews with eleven social workers and one psychologist the study analyses their perspectives on the scope and nature of services to brain tumour patients and their caregivers. PMBT is a rare and palliative disease often with neurocognitive and neurobehavioral effects posing special challenges for caregivers. Health care system reliance on family caregivers has resulted in significant implications for their emotional and physical risk. Findings show exclusive patient focused health care in ambulatory programs with fragmented care resulting in marginalization and invisibility of caregivers. This approach is inconsistent with current literature promoting collaborative family centered care, recommended for continuity of care throughout the illness trajectory. Recommendations focus on systemic caregiver service improvements.

This qualitative multi case research asks how the needs of caregivers of primary malignant brain tumour (PMBT) patients are met through structured neuro-oncology programs in Canadian centres. Utilizing telephone interviews with eleven social workers and one psychologist the study analyses their perspectives on the scope and nature of services to brain tumour patients and their caregivers. PMBT is a rare and palliative disease often with neurocognitive and neurobehavioral effects posing special challenges for caregivers. Health care system reliance on family caregivers has resulted in significant implications for their emotional and physical risk. Findings show exclusive patient focused health care in ambulatory programs with fragmented care resulting in marginalization and invisibility of caregivers. This approach is inconsistent with current literature promoting collaborative family centered care, recommended for continuity of care throughout the illness trajectory. Recommendations focus on systemic caregiver service improvements.

The needs of the informal caregiver can be difficult to determine apart from those related to caring for the terminally ill loved one. Often, informal caregivers' individual needs are lost because of their day-to-day responsibility and care of their terminally ill loved one. The purpose of this project was to discover the characteristics of informal caregivers of the terminally ill. An integrated literature review was conducted using the Fineout-Overhalt, Melnyk, Stillwell, and Williamson's (2010) analytical approach to reviewing the evidence. The approach consisted of 7 levels for evaluating the hierachy of evidence. Inclusion criteria were studies limited from January 2004 to October 2015, English language, and full text. A total of 22 studies were reviewed and categorized according to 1 of the 7 hierachial levels, and findings related to the characteristics of informal caregivers were summarized at each appropriate level. Characteristics of informal caregivers were described regarding sociodemogrphics, such as age, gender, relationship with family members, financial status, and educational level. Characteristics of informal caregivers were discussed in relationship to the terminally ill loved one. The evidence did not concentrate on who the informal caregiver was without assessing their relationship to the terminally ill patient. It is recommended that a mixed-method approach be conducted to indentify characteristics of informal caregivers outside of their relationship with the terminally ill. Gaining a new perspective about the characteristics of informal caregivers for the terminally ill patient would help health care providers to more effectively meet their needs independent of the needs of the terminally ill loved one.