Table 1.

Characteristics of the included studies

Study and country	Methods for data collection and analysis	Phenomena of interest	Setting/context/culture	Participant characteristics and sample size	Description of main findings
Arber et al. [9] UK - England	In-depth qualitative interviews using grounded theory	Carer’s access to and experience of information/support	One specialist hospital in South of England	22 caregivers	Challenging experience with gaps in information provided. Main areas of difficulty were combining employment and caring, managing finances and benefits, locating support groups, what to expect following neurosurgery, managing medications.
Arber et al. [19] UK – England *Reporting same study as Aber et al. [9]	In-depth qualitative interviews using grounded theory	Experience of family caregivers when caring for a person with primary malignant brain tumour	One cancer centre in Southeast England	22 caregivers	The themes generated were those of developing helpful relationships, safe places, comfort zones, and threats to connecting.
Boele et al. [20] Netherlands	Individual semi-structured interviews that were audiotaped	Patients’ and caregivers’ attitudes and preferences toward symptoms and distress monitoring	One outpatient oncology department	15 patients and 15 informal caregivers	Advantages of monitoring generated by participants include increased awareness of problems and facilitating supportive care provision. Disadvantages included investment of time and mastering the discipline to monitor frequently.
Boele et al. [21] USA and Netherlands *Includes same sample as Boele et al. [20]	Individual semi-structured interviews that were audiotaped	Explore PBT caregivers’ preferences toward symptoms and distress monitoring	One Cancer Centres in USA and one cancer centre in the Netherlands	USA 12 caregivers Dutch 15 caregivers	Caregivers utilize both formal and informal support services. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline.
Cavers et al. [22] UK - Scotland	Prospective longitudinal qualitative interviews using grounded theory	Explore the multidimensional experience of patients and caregivers	A tertiary centre of clinical neurosciences	26 patients, 23 caregivers	Physical, social, psychological, and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment.
Collins et al. [23] Australia	Individual semi-structured interviews that were audiotaped	To understand the supportive and palliative care needs	Neurosurgery, oncology and palliative care services of two Australian metropolitan hospitals	23 caregivers (15 current and 8 bereaved)	Carers described significant needs in relation to three distinct domains: the challenge of caring; the lack of support available to carers and the suffering of caring. The need for care coordination to improve care.
Coolbrandt et al. [24] Belgium	Qualitative interviews using grounded theory	Explore the experience of informal caregivers	Oncology wards of the University Hospital	16 caregivers	The overall theme related to experiences of family caregivers this the following sub-themes, feeling lost and alone in a new life, committed but struggling to care, and caring needs.
Cubis et al. [25] Australia	Qualitative phenomenological study. Two in-depth semi-structured interviews were conducted three months apart	Aimed to understand how brain tumour influences people’s ability to manage, maintain, and rebuild their social networks	Patients at different stages of cancer interviewed in their own homes or other locations that were convenient for them and offered privacy	20 patients with diverse types of primary brain tumours	Two overarching and interrelated themes emerged: engaging and connecting and then versus now. An interplay of barriers, facilitators and strategies influenced people’s ability to engage and connect with their social groups, which in turn influenced whether they experienced stability; maintenance and expansion; loss and rebuilding; or loss and shrinkage of their social networks over time.
D’Agostino and Edelstein [26] Canada	Four focus groups	Explore needs of young adult PMBT survivors	Oncology wards of the University Hospital	7 young adult survivors	Common challenges across the groups included physical appearance, fertility, late effects, social relationships, and changing priorities. Childhood cancer survivors struggled with identity formation, social isolation, and health care transitions.
Dahlberg et al. [27] Sweden	An exploratory qualitative study. In-depth interviews were conducted and a social network-mapping tool (CareMaps) was tested	Explores how patients and informal caregivers perceive the potential usefulness of a social network-mapping tool in their self-care and to describe the qualities in the interpersonal relations that they map	Study participants were recruited via a series of workshops facilitated by the designer of the CareMaps tool	7 persons living with brain tumours, 12 informal caregivers (where of 6 bereaved)	Participants expressed positive opinions about the CareMaps tool but raised some questions regarding its design, how to use it in their self-care, and the optimal timing of introducing the tool. Two themes reflecting qualities in relations were found: self-care supportive relations during which daily management of the brain tumour is in focus and identity-preserving relations that allow individuals to disconnect from their brain tumour experiences. Both types of relations were described as important, were found in different contexts (e.g., social life, work life, and healthcare), and emphasized contrasting qualities.
Deatrick et al. [28] USA	Sequential, mixed-methods design	To explore a typology of family management (FM) patterns for young adult survivors	Neuro-oncology and survivorship outpatient clinics	45 mothers (involved in qualitative phase)	Need related to having successful strategies to incorporate changes in survivor functioning into everyday family life, profound stress related to daily challenges and families were able to manage, accommodate, and accept differences.
Foust Winton et al. [29] USA	A qualitative descriptive method study using semi-structured interviews	Describes how patients who have undergone craniotomy for brain tumour removal experience pain management while hospitalised	Interviews conducted with patients on a neurological step-down unit in an urban teaching hospital in the Midwest United States	27 patients who had undergone a craniotomy 2 weeks prior	Their pain experiences varied on 2 dimensions: salience of pain during recovery and complexity of pain management. Based on these dimensions, 3 distinct types of pain management experiences were identified: (1) pain-as-nonsalient, routine pain management experience; (2) pain-as-salient, routine pain management experience; and (3) pain-as-salient, complex pain management experience. Many post craniotomy patients experience their pain as tolerable and/or pain management as satisfying and effective; others experience pain and pain management as challenging.
Francis et al. [30] Denmark	Individual semi-structured interviews, over two time points, which were recorded	To investigate spouses’ experiences of suffering in their role as main caregiver of a partner with PMBT	Oncology ward of a university hospital	10 spouse caregivers (7 women and 3 men)	Three central themes: 1) “enduring everyday life”, 2) “being overlooked and hurt” and 3) “being acknowledged and feeling good”. Spouse caregivers are suffering from exhaustion and supress their own emotions to endure care responsibilities. Overlooking their experiences and everyday hardship causes disappointment and hurts their dignity. Acknowledgment through simple acts of practical help or time to talk are consoling and alleviate their experiences of suffering.
Fraulob and Davies [31] UK	Qualitative responses in the English Cancer Patient Experience Survey (CPES)	To explore experiences of general practice care and support	National Health Service care	84 comments analysed	Slowness in referral for investigation, delay in receiving scan results, lack of supportive response from the GPs, lack of follow-up care overall suboptimal coordination in care.
Gately et al. [32] Australia	Semi-structured interviews that were audiotaped and transcribed verbatim. Thematic analysis used	To explore the lived experience of long-term survivors of glioblastoma	Tertiary centre	6 long-term survivors and 4 caregivers	Long-term survivors of glioblastoma experience disconnection from themselves from the time of diagnosis into survivorship, which evolves over time. Clinicians need to consider the emotional impact and adopt a holistic approach, including the early introduction of psychosocial support to patients and their caregivers and the role of language in clinical encounters.
Halkett et al. [33] Australia	Qualitative interviews using grounded theory and Maslow’s hierarchy of needs	Explore the experience of patients with PMBT	Medical oncology department of a tertiary referral centre for neurological cancers	19 patients	Patients with brain tumours may have unique needs. Health professionals need to clarify patients’ information and support needs and be aware that this change over and within time.
Hazen et al. [34] USA	Individual semi-structured interviews that were audiotaped	Explore Information and symptom management	Medical oncology department of a tertiary referral centre	7 patients and 6 caregivers	Uncertain about the future, could not get a clear prognosis, did not know how their disease would progress or how to make plans. Concerns such as weight gain, seizures, visual and speech deficits, and inability to drive are more unique to patients with brain cancer. Carers played an essential role in assisting patients with decision making, managing their health, and assisting them physically.
Heckel et al. [35] USA	Individual semi-structured interviews that were audiotaped	Explore mobile health and patient-facing technologies	Local brain tumour support group and radiation clinic	7 patients and 6 caregivers	Participants highly willing to use technologies to capture and manage information, provided they were designed according to the needs, interests, and abilities of these users. Participants felt that such tools could benefit patient care activities and help to address information challenges for both current and future patients and caregivers.
Hricik et al. [36] USA	Individual semi-structured interviews that were audiotaped	To compare experiences, perceived burdens, and needs during home care of informal caregivers	Medical oncology department of a tertiary referral centre	10 informal caregivers affected by brain cancer	Need for improved informational support among caregivers and better support to cope with the physical and psychological changes of the patient.
Langbecker et al. [37] USA	Individual semi-structured using qualitative description	To explore the transition into the caregiver role and how their perceptions of this transition change over time	Neurosurgery and neuro-oncology clinics of a regional medical centre	10 informal caregivers	Caregivers described difficulties stemming from the patient’s tumour-related dysfunction and changes in their familial, occupational, and social roles. Support from family and friends was vital to caregivers’ emotional health, but shock and fear were evident. Difficulty in communicating with healthcare providers.
McConigley et al. [38] Australia	Qualitative interviews using grounded theory	To explore the experiences of adults with primary brain tumours who have unmet needs	Multidisciplinary rehabilitation, community, and psychosocial services	21 informal caregivers	Rapid change and need for timely informational support.
Molassiotis et al. [7] UK	Longitudinal Interviews over 4 time points analysed using content analysis	To explore symptom experience	Specialist oncology centre	9 patients	Key issues for support included ongoing fatigue, memory loss, and inability to drive. Fatalistic views about the outcomes of their disease. Adjustments to their lives to accommodate their functional limitations (including home alterations, introducing regular exercise to their lives, and using complementary therapies). Several participants angry and dissatisfied with health care professionals.
Nixon and Narayanasamy [39] UK	Qualitative study using critical incident technique	To explore spiritual needs	Specialist oncology centre	21 patients	Some patients with brain tumours do report spiritual needs during their hospital stay and some of these needs are not met by nurses.
Ownsworth et al. [40] UK	Critical Incident Technique questionnaire and analysed thematic content analysis	To gain insights into the spiritual needs of neuro-oncology patients	Neurosurgical unit of the local NHS trust	21 patients	Some but not all participants would like support from nurses in the neurosurgical setting with meeting spiritual needs. Identified needs related to family and emotional support, need for connection loneliness/state of despair, religious needs, reassurance meaning and purpose, plans for future/re-establishing a sense of normality.
Philip et al. [41] Australia	Phenomenological approach using in-depth interviews	To explore family caregivers’ experiences of support and relationship changes	Specialist oncology centre	11 family caregivers	Overall, the findings highlight that there is considerable variability in caregivers’ experiences and expectations of support and the impact of brain tumour on relationships.
Piil et al. [8] Denmark	Longitudinal Interviews over 5 time points and audio recorded	To elucidate patients’ and caregivers’ experiences and needs for rehabilitation	Department of Neurosurgery, University Hospital of Copenhagen	33 patients and 33 caregivers	Five themes 1) “individual strategy for acquiring prognostic information” revealed two different strategies for coping. 2) “shared hope,” was based on a strong sense of solidarity between the patient and the caregiver, 3) “engagement in health promotion activities,” was facilitated by shared hope, as the patients and caregivers jointed forces toward a healthier lifestyle reflecting that being involved and taking responsibility were highly valued. 4) (present for patients alone), “adjustment to symptom limitations,” emerged from experiences of and responses to the symptoms/complications and neurological deterioration resulting in physical/ cognitive and functional decline, daily activity limitations, and role changes. 5) (caregivers alone), “role transition from family member to caregiver,” describes the changing role from being a family member to becoming a caregiver.
Raju and Reddy [42] Australia	Qualitative interviews using grounded theory	To understand patient experience of high-grade glioma at the end of life	Specialist oncology centre	10 patients	Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Unmet needs related to loss of self, impending loss and decline, loneliness, and isolation, focus on the here and now, doping day to day and waiting and uncertainty.
Sterckx et al. [43] Germany	Retrospective thematic analysis of interviews at first consultation	To identify the concerns and burdens presented during initial consultation	Specialised in psycho-oncology	53 patients	Increased awareness of the psychological needs of patients to define treatment strategies.
Tastan et al. [44] Belgium	Qualitative interviews using grounded theory	Identify patient experience and care needs	Specialised in psycho-oncology	17 patients	Aa life-changing diagnosis associated with feelings of shock, loss, uncertainty, anxiety, and disregard. Patients also expressed great inner strength. Primary needs from professional caregivers included information, support, and availability.
Vedelø et al. [45] Turkey	Semi structured interviews analysed using a phenomenological approach	To explore experiences of patients’ relatives during the perioperative period and home care	Neurosurgery department of a military hospital	10 caregivers	The patients’ relatives’ needs for knowledge and the psychosocial situation were neglected. Relatives wanted more knowledge about the surgical procedure, possible complications, patient care and home care.
Vedelø et al. [46] Denmark	Longitudinal interviews and observations	Patient experiences during diagnosis of brain cancer	Hospital	4 patients	Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants’ perceptions of the relationship with the healthcare providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control.
Wasner et al. [47] Denmark Norway	Longitudinal single case study	Exploring an integrated Brain Cancer Pathway from a patient perspective	Specialist oncology centre	1 patient	Patient experienced being alone, although surrounded by healthcare providers Had to develop strategies to manage the responsibilities given in the pathway. Needs related to information, communication, and support clearly changed overtime.
Whisenant et al. [48] USA	Qualitative interviews using story theory	Explore the experiences of informal caregivers	Specialist cancer hospital	20 patients and 20 caregivers	Themes related to commitment, expectation management, role negotiation, self-care, new insight, and role support were identified in this caregiver population.