Table 2. Characteristics of included studies.
| Author | Settings | Samples | Methods | Objectives | Patient with glioma | Interview time and place | Phase in the disease trajectory | Key findings |
|---|---|---|---|---|---|---|---|---|
| Whisenant (17), 2011 | National Cancer Institute-designated comprehensive cancer center, USA | 20 caregivers (14 spouses, 1 parent, 1 child, 4 others); 12 males and 8 females | Descriptive exploratory method and story theory | To scrutinize population-specific caregiving experience themes via experiences of informal caregivers of primary brain tumor patients | Grade II–IV primary brain glioma | At outpatient/inpatient areas and private rooms | Diagnosed with PMBT between less than 1 year to more than 5 years |
1. Commitment |
| 2. Managing expectations | ||||||||
| 3. Role negotiation | ||||||||
| 4. Self-care | ||||||||
| 5. Novel perception | ||||||||
| 6. Role support | ||||||||
| Arber (21), 2013 | Cancer center in the south east of the England, UK | 22 caregivers (12 female partners, 5 male partners, 2 daughters, 1 son, 1 mother, and 1 father); 7 males and 15 females | constructivist grounded theory and open-ended approach interviews | To scrutinize primary malignant brain tumor patients’ family caregivers’ experiences | Primary malignant brain tumor (glioblastoma, multiforme, ependymoma, oligodendroglioma and astrocytoma) | Not mentioned | With a diagnosis of brain tumor | The core concept was “Connecting on the caring journey” with the following themes: |
| 1. Fostering supportive relationships | ||||||||
| 2. Places with safety comfort | ||||||||
| 3. Barriers of support connection | ||||||||
| Cavers (22), 2013 | Regional neuro-surgical center, UK | 23 relatives (8 husbands, 11 wives, 3 parents, 1 daughter); 10 males and 13 females | Grounded theory and in-depth qualitative interviews | To comprehend factors impacting the adjusting process to glioma diagnosis | High and low grade gliomas | Home and hospital; around 1 hour | Four times: prior to official diagnosis; at commencement of therapy; on completion of treatment; 6 months subsequent to treatment; and following mourning | 1. Anguish, anxiety and distress prior to and from diagnosis |
| 2. Information preference disparity | ||||||||
| 3. Vital involvement of hope, reassurance, and support | ||||||||
| Collins (23), 2014 | Two metropolitan hospitals, including neurosurgery, oncology and palliative care, Australia | 23 caregivers (17 spouses, 4 children, 2 others); 9 males and 14 females | Grounded Theory and in-depth interviews | To comprehend the setting-based supportive and palliative care requirements, with explicit focus upon care at the end-of-life phase | PMG grades III–IV | 7 home; 9 hospitals; 4 hospices; 3 by telephone | 15 current and 8 bereaved; patient survival was between 1 month and 14 years (median 14 months) | 1. The trials of caring |
| 2. Caregivers facing a paucity of support available to them | ||||||||
| 3. The suffering of caring | ||||||||
| Coolbrandt (24), 2015 | The oncology wards of the University Hospitals Leuven, Belgium | 16 caregivers (13 spouses, 2 parents, 1 friend); 6 males and 10 females | Grounded theory and semi-structured interviews | To scrutinize the HGG patients’ caregivers (family) and their requisites concerning professional care | HGG | 7 hospital, 9 home; 78 minutes on average (range from 46 to 126 minutes) | Treated with chemotherapy and/or radiotherapy or in the follow-up phase after treatment | 1. Finding oneself being lost and alone in a new life |
| 2. Committed but struggling to care | ||||||||
| 3. Caring needs | ||||||||
| Edvardsson (25), 2008 | Sweden | 28 caregivers (15 spouses or cohabitants, 3 live-apart partners, 8 parents, 1 adult child, 1 sibling); 8 males and 20 females | Semi-structured interview | To scrutinize different themes across the family via qualitative analysis | 25 low-grade gliomas and 2 grade III gliomas | Place and time chosen in agreement with the interviewer | Not mentioned | 1. Tremendously stressful emotions |
| 2. Being ignored and invisible | ||||||||
| 3. Altered roles and relations | ||||||||
| 4. Boosting strength in everyday life | ||||||||
| Heckel (26), 2018 | The Regional Cancer Centre and the hospital information system of 7 departments of a university hospital, Germany | 17 caregivers (10 spouse, 7 children); 5 males and 12 females | Semi-structured face-to-face interviews | To ascertain and contrast variations across informal caregivers of brain tumor patients vs. non-brain tumor patients in terms of needs, personal experiences, and perceived burdens | Glioblastoma WHO grade III or IV | Palliative medicine, home; on average 95.96 minutes (min: 40; max: 211) | Patient died | 1. Situation consideration |
| 2. Facing the situation | ||||||||
| 3. Impacts of the situation | ||||||||
| 4. Others’ support | ||||||||
| 5. Information | ||||||||
| 6. Perception by others | ||||||||
| McConigley (27), 2010 | The medical oncology department of a tertiary referral center for neurological cancers, Australia | 21 caregivers (20 spouses, 1 parent); 4 males and 17 females | Grounded theory and semi-structured interviews | To convey high-grade glioma patients’ family caregiver experiences regarding their information and requisite support | Malignant HGGs (astrocytoma grade 3–4, n=3; glioblastoma multiforme, n=18) | Not mentioned | 6–8 weeks postdiagnosis (7 participants), 5–6 months postdiagnosis (7 participants), 9–12 months postdiagnosis (7 participants) | A time of rapid change with 2 subthemes: |
| 1. Renegotiating relationships | ||||||||
| 2. Learning to be a caregiver | ||||||||
| Ownsworth (28), 2015 | The Cancer Council Queensland or a private neurosurgery clinic, Australia | 11 caregivers (8 spouses, 1 father, 2 mothers); 6 males and 5 females | Phenomenological approach and in-depth semi-structured interview | To scrutinize the impact of brain tumor on support and relationship shifts of family caregivers | Grade I–II tumors (n=6); grade III–IV tumors (n=5) | 10 caregivers’ homes, 1 telephone interview; 51 minutes (range, 27–88 minutes) | Between 9 months and 22 years post diagnosis | 1. Meanings of support: requisite intertwined and distinct support, altered support expectations, and factors impacting these expectations |
| 2. Relationship impacts: the experience of strengthened, maintained, or strained relations | ||||||||
| Piil (29), 2018 | The Department of Neurosurgery, Rigshospitalet, University of Copenhagen, Denmark | 33 caregivers (25 spouses/partners, 7 children, 1 sibling) | Semi-structured telephone interviews | To longitudinally ascertain the explicit preferences and requirements for care, support, and rehabilitation along with their link to psychological aspects, physical activity, and health quality across the first year post- HGG diagnosis in patients and their caregivers to encompass qualitative and quantitative aspects | Malignant glioma | 13–25 minutes | At 5 fixed time-points across a disease and treatment trajectory over 1 year: baseline, week 6, week 28, week 40, and week 52 | 1. Individual approach to get prognosis-based data for either seeking or limiting the amount and content of prognostic information |
| 2. The shared hope of patients and their caregivers with the solidarity of the latter with the former | ||||||||
| 3. Patients and caregivers working towards a healthier lifestyle | ||||||||
| 4. Role transition from family member to caregiver | ||||||||
| Sacher (30), 2018 | The Neurooncological Outpatient Division, Department of Neurosurgery, University Hospital of Leipzig, Germany | 45 caregivers (31 spouses/partner, 9 parents, 5 children); 12 males and 33 females | Semi-structured interviews | To ascertain the sociodemographic, clinical and personality factors that impact the quality of life of patients and their caregivers and employ standardized and qualitative approaches to scrutinize for a reciprocal impact of their coping, distress, mood, and well-being | Anaplastic astrocytoma grade III (n=16), glioblastoma grade IV (n=29) | 15–20 minutes | The median interval from cancer diagnosis was 12 months | 1. Daily life alterations and diagnosis |
| 2. Dependency and restrained freedom | ||||||||
| 3. Altered roles and relationships | ||||||||
| 4. Sources of power in everyday life | ||||||||
| Salander (31), 1996 | Sweden | 24 spouses; 7 males and 17 females | Grounded theory | To scrutinize the emotional and cognitive handling in malignant brain tumor patients’ spouses | Grade III or Grade IV malignant glioma | Home and hospital | Four times: be discharge from the neurosurgical ward; 2 months later, when the patient’s 6 weeks of radiation therapy had been completed; 5 months later at home when patients and caregivers were likely to encounter problems; about a month after the patient had died | 1. A crisis delayed until disease advancement |
| 2. A high-priority crisis | ||||||||
| 3. A crisis delayed until homecoming of the patient | ||||||||
| Schmer (32), 2008 | An urban midwestern city, USA | 10 caregivers (7 spouses, 2 daughters, 1 son-in-law) | Phenomenological approach and semi-structured interviews | To explore the impacts on caregivers’ lives when caring for a brain tumor-afflicted family member | Malignant brain tumor | Conducted at a private conference room away from the treatment area; 42 minutes (range, 35–90 minutes) | Within the initial 6 months of treatment | 1. The shock of brain diagnosis |
| 2. Instantaneous alterations in family roles | ||||||||
| 3. Psychosocial effects on the patient, the caregiver, and family | ||||||||
| Tastan (33), 2011 | The neurosurgery department of a military training and research hospital, Turkey | 10 patients’ relatives (4 spouses, 4 offspring, 1 parent, 1 sibling) | Phenomenological approach and semi-structured interviews | To ascertain and to categorize patient relatives’ experiences over the perioperative period and home care | Glioblastoma(n=4) astrocytoma (n=3), schwannoma (n=1), oligodendroglioma (n=1), and pituitary adenoma (n=1) | 30–45 minutes | The surgery was at least 3 months prior to the study period (3–6 months) | Three categories and 9 themes: |
| (a) Personal feelings | ||||||||
| 1. Foremost reactions: shock and terror of death | ||||||||
| 2. Surgery choice: helplessness or acquiescence | ||||||||
| 3. First meeting post- surgery: joy or trepidation | ||||||||
| 4. Uncertainty and angst | ||||||||
| (b) Change management of: | ||||||||
| 5. Tumor side effects | ||||||||
| 6. Behavior and roles | ||||||||
| 7. Home care | ||||||||
| 8. Social support | ||||||||
| (c) 9. Requisite knowledge to handle the malady | ||||||||
| Wasner (34), 2013 | The neuro-oncological outpatient clinic and the palliative care unit at a university hospital in Germany | 27 caregivers (19 spouses, 3 parents, 4 children, 1 friend) | Narrative mindreading and semi-structured interviews | A personal experience-based approach to examine quality of life, burden of caring, and psychological health of caregivers of PMBT patients | Astrocytoma WHO grade III, glioblastoma | Patients’ private rooms or in a meeting room; 20–60 minutes | PMBT between 1 and 59 months prior to the study | 1. Psychological distress and burden of care |
| 2. Taking responsibility | ||||||||
| 3. Recognizing the significant role of PMBT caregiver | ||||||||
| 4. Need for solid and continuous support | ||||||||
| 5. Practical advice and help | ||||||||
| Wideheim (35), 2002 | A neurology clinic, Sweden | 5 next of kin (2 partners, 2 parents, 1 adult child) | Descriptive prospective interview study | To describe what it like to live with a family member with a highly malignant brain tumor | Highly malignant glioma (grade III and IV) | Not mentioned | Twice: 2–3 weeks after surgery and 3 and 6 months after onset |
(a) How the families felt post-disease onset and receiving diagnosis: |
| 1. Deviant behavior of the patient | ||||||||
| 2. Distancing | ||||||||
| 3. Recognition of death | ||||||||
| (b) Families’ experiences of daily life: | ||||||||
| 4. Fear and anxiety | ||||||||
| 5. Burden | ||||||||
| 6. Support | ||||||||
| 7. Return to a normal life | ||||||||
| 8. Hope | ||||||||
| 9. Preventing illness | ||||||||
| 10. Learning to cope with the grief | ||||||||
| (c) Families’ experiences concerning the association with care staff and information: | ||||||||
| 11. Encounter with staff | ||||||||
| 12. Information |
HGG, high-grade glioma; WHO, World Health Organization; PMG, primary malignant glioma; PMBT, primary malignant brain tumor.