2.1. Design

This cross-sectional qualitative study was nested within the wider Ways Ahead study. The study [21] was reviewed and approved by the Wales Research Ethics Committee (REC ref: 20/WA/0118). This study was reported in accordance with the Critical Appraisal Skills Programme (CASP) checklist for quality assessment of qualitative studies (Supplementary file 1). The present study focused specifically on the nature and quality of support from informal networks for ICs of LGG patients.

2.2. Participants and Recruitment

Participants were family-members or friends of an LGG patient who lived in the United Kingdom. Individuals were eligible if they were aged ≥18 years and currently, or have in the past five years, informally cared for someone with an LGG, specifically a grade II or III oligodendroglioma or grade II astrocytoma [22].

Potentially eligible ICs were approached as “family-members or friends” and identified via three avenues. Firstly, LGG patients interviewed in the Ways Ahead study were asked to nominate someone informally involved in their support. The researchers provided a participant information sheet to be passed on to the nominated IC. Secondly, healthcare professionals at collaborating National Health Service (NHS) sites identified and provided ICs with a participant information sheet. Thirdly, the study was advertised, with the participant information sheet attached, through The Brain Tumour Charity’s networks. For all avenues, ICs were asked to contact the study team to register their interest. BR and LD subsequently telephoned the IC to confirm eligibility, provide the opportunity to ask questions, and arrange a convenient interview date and time, if willing to take part. Participants were recruited between August 2020 and March 2022.

2.3. Data Collection

Interviews were conducted by BR and LD, both trained and experienced in qualitative research, with no prior relationship with the participants. All interviews took place remotely on video-conferencing software (e.g., Zoom or Microsoft Teams) or by telephone, as per interviewee preference. Audio-recorded consent was acquired, immediately prior to each interview.

Interviews were semistructured following a topic guide (Supplementary file 2), which comprised open questions informed by existing literature and expert knowledge (JL and SW). Prior to data collection, the topic guide was discussed with a patient and public involvement panel including ICs and modified appropriately. Flexible use throughout data collection allowed any new issues raised during the interviews to be added for exploration in subsequent interviews.

To begin, participants broadly reflected on their experiences of supporting someone living with a brain tumour. Participant views on how the patient has been impacted by the tumour and its treatment, and their own impact and support needs across numerous areas (e.g., emotions, family, and transport) were then explored. For each area, we asked about the role and responsibilities involved in supporting the patient as well as what and when participants received or needed (in)formal support. Appropriate use of probe questions explored any challenges faced. Participants were allowed the opportunity to raise any additional issues they felt were important. Finally, a £20 voucher was offered to thank them for their time, and a debrief sheet was provided with details of charities and helplines, should they have questions or concerns, or experience distress following the interview. Interviews were audio-recorded and lasted on average 85 minutes (range 54 to 110 minutes).

2.4. Data Analysis

Participants were pseudonymised with a unique participant ID. Interviews were transcribed verbatim and anonymised by an external service. For accuracy, transcripts were checked against the interview audio-recordings. An inductive, data-driven approach was used in line with thematic analysis [23, 24]. Analysis was paralleled with data collection to ensure that the new issues raised were explored in subsequent interviews. This analysis focused specifically on the nature and quality of support from ICs’ informal networks.

Two trained researchers (AM and BR) independently familiarised themselves with the data and generated initial codes for a sample of transcripts (n = 5 of 19). Preliminary themes were constructed at the semantic level and discussed and modified by the researchers, following consensus on any differences. Remaining transcripts were analysed by AM; emerging findings and uncertainties were discussed with the wider research team. Findings were then deductively mapped to House’s four dimensions of social support [16] relevant to caregiving literature in other cancers [18]. We aimed to examine consistency with predetermined benefits of social support and identify how our findings support, refine, and extend their influence on IC wellbeing in a different context. Inter-relationships between dimensions were noted. We examined data saturation by assessing whether the last three interviews added anything new to the coding frame. In reporting the results, in relation to network nature, we have described types (dimensions) of support received and from whom, or where, it was received. In terms of quality, we have reported, for each dimension of support, ICs’ experiences (both positive and negative) of the support received.

3.1. Participant Characteristics

Twenty-four ICs registered an interest in taking part; of these, 22 were eligible (n = 2 were not eligible because the care recipient’s tumour was not a LGG) and 19 were interviewed (NHS recruitment (n = 7); the Brain Tumour Charity (n = 12)). Mean age was 54.6 years (range 36–78 years) and 14 participants were female (Table 1). All except one participant was married. Fifteen were spouses, two sisters, and two mothers of the LGG patients. Six (all being spouses) had children (aged <18). At the time of interview, 13 were employed (10 in full-time employment).

3.2. Overview of Findings

The themes (following House’s framework) [16] and associated subthemes are shown in Figure 1; supporting quotes are presented throughout and in Table 2. Throughout the results, ICs sought and received different supports from different contacts, expressing the value of strong/familiar (e.g., close friends) and weaker/unfamiliar ties (e.g., other ICs).

3.3. Emotional Support

Emotional support concerned the perception of being cared for, valued, and belonging to a support network. Subthemes were opportunities to talk, understanding from others, and being there.

3.4. Instrumental Support

Most participants described instances of instrumental support, which concerned assistance with finances and daily tasks, such as transport, housework, and childcare. The only subtheme was opportunities for relief.

3.5. Information Support

Most participants reported receiving information support related to managing the consequences of the tumour and its treatment. Subthemes were information from the network contacts and information from the support groups.

3.6. Appraisal Support

Appraisal support concerned information that aided self-evaluation of the participant’s own, and the LGG patient’s, health. Subthemes were comparisons with similar others and health surveillance.

3.7. Inter-Relatedness of Support Dimensions

4.1. Support Dimensions

All participants described the importance of emotional support, valuing the care provided by friends and family. Participants particularly valued being listened to and having the opportunity to talk, which were consistent with several studies exploring caregiving in other cancers [7, 25, 26]. Since ICs might feel unable to fully express their emotions to the patient [19], such support from informal networks may be crucial [14].

Our findings support the cathartic function of opportunities to vent [27], a support mechanism scarcely evidenced in the cancer literature. Still, venting may only be beneficial if met with the appropriate response, as feeling listened to and understood has distress-buffering effects [28]. What our study adds is the value of passive listeners, as participants sought an outlet, not a solution. We might speculate that ICs place more expectation on a solution to be provided by their formal networks. Ultimately, finding, or facilitating, mechanisms for stress relief may be important to mitigate caregiver burden.

The feeling that informal networks understood the symptoms and severity of an LGG was highly regarded, though often absent. Reported misconceptions of disease severity evoked frustration [29], which was exacerbated by the perception that LGG is an “invisible” disease, due to “hidden” impairments (e.g., cognitive deficits and fatigue). [30] Consequent informal support is perceived as inadequate [11], artificially positive [19], or insensitive [29]. A perceived lack of understanding from others may, therefore, be a barrier in receiving emotional support, inciting the feelings of isolation. The “family unit” was particularly valued in our findings, approaching caregiving demands collectively. These high-quality family relationships could be associated with lower caregiver burden [31], as they feel able to share the caregiving demands. Still, colleagues, social group members, and neighbours were also cited as sources of informal support with no preferences given.

Most participants appreciated opportunities for relief from daily tasks (i.e., household chores and childcare), which afforded some the opportunity for self-care (e.g., socialising with friends). This is important, as caregiving demands typically detriment an IC’s social wellbeing [9, 19]. Indirect instrumental support (e.g., financial aid) was also valuable for mitigating caregiver burden, particularly if the condition has influenced changes in employment for the IC or patient [32, 33].

Some participants appreciated information, especially practical advice, offered from informal contacts, particularly those in healthcare positions. Such support is especially important if the IC feels ill-informed by formal healthcare channels [7]. Several participants indicated the value of appraisal support. Some described a feedback system, whereby informal contacts monitored the IC’s and LGG patient’s wellbeing, informing the IC of any changes. This was important for ICs whose focus on caregiving meant they had neglected their own wellbeing. To our knowledge, this is a novel finding, with future research required to consider the influence of “health surveillance” on protecting an IC’s wellbeing.

4.2. Support Groups

Across emotional, information, and appraisal support, we highlight the potential benefits and hindrances from support groups. Such groups for ICs may be a favourable avenue of emotional support, particularly where understanding from friends and family is lacking [14, 25]. They may also be a useful access point to wide-ranging information resources, as advice and experiences can be exchanged at any given time with those in similar circumstances. However, our findings support that ICs might avoid support groups to protect themselves from negative experiences, such as reminders of the tumour’s inevitable outcome [30], potentially exacerbated if a support group member died [13]. Furthermore, there is value and risk in interacting with similar others on an IC’s self-efficacy, depending how they perceive their situation in relation to other ICs [17, 34]. Consequently, guidance outlining the potential implications of interactions in support groups may be beneficial to inform an IC’s approach to this avenue of support. This should acknowledge that each LGG patient is individual in the potential prognosis, which is the extent of tumour- and treatment-related limitations experienced.

4.3. Benefits of Extended Informal Networks

While friends and family can provide emotional and instrumental support, valuable information and appraisal support may come from interactions with other ICs (e.g., via support groups). Our findings suggest, for the first time in brain tumours, that ICs may seek different supports from different contacts, in accordance with the expanded network theory [35]. Strong/familiar ties (e.g., close friends) may share similar perspectives and backgrounds, limiting the ability to obtain diverse information. Interactions with strong/familiar ties may also expose the IC to judgement, while weaker/unfamiliar ties (e.g., other ICs) might allow sensitive topics to be broached without repercussions [36]. The absence of intimacy from weaker/unfamiliar ties, however, means shared information is limited to the IC’s immediate needs [37]. Thus, to receive a full range of support mechanisms and diverse social resources, ICs may benefit from engagement with both strong/familiar and weaker/unfamiliar ties. The extended prognosis of LGGs means different supports are likely to be needed over time. Hence, where appropriate, ICs should be encouraged to engage with available support groups and other ICs, in addition to their strong/familiar ties. However, given the associated concerns with support groups, alternative ways to form and maintain weaker/unfamiliar ties require further consideration.

4.4. Implications

These findings provide important considerations for healthcare professionals, particularly nurses, given they are often a key point of liaison with the patient’s family. Our findings highlight the potential benefits of opportunities to talk; health professionals may consider ways to facilitate opportunities to talk to a passive listener, without judgement or unsolicited advice. Perceiving an understanding of the condition and its severity was highly regarded by ICs. It may be beneficial to provide ICs with guidance on “what to expect” with LGGs and support needs of ICs, which they could disseminate to their informal network, better equipping the network to provide support.

Overall, we highlighted the wide-ranging value of support from informal networks; this may outline potential unmet support needs in ICs whose informal support network is limited (e.g., poor family relationships), or unavailable (e.g., distant proximity). This has implications across all four support dimensions, most pertinently instrumental support, as there are challenges with remote provision of opportunities for relief. Consequently, the size and/or availability of an IC’s informal network should be acknowledged to understand possible disparities in ICs’ wellbeing. Following from this, where health systems allow, cancer nurses could have an important role in assessing whether ICs themselves may need care interventions or other support to manage the challenges of caregiving.

4.5. Strengths and limitations

The main strength of our study is the novel understanding of the informal support mechanisms for ICs of LGG patients, who to date have been under studied. While emotional support was particularly valued, our findings benefit from eliciting the importance of instrumental, information, and appraisal support; mechanisms were rarely explored in the cancer literature. With regards to this analysis, the last three interviews did not add anything new to the coding frame, so we are confident that reasonable data saturation was reached. Our sample benefitted from a representation of male ICs, as they are typically underrepresented in caregiving literature [38].

Informal support networks were a secondary focus of the interviews, which may have implications for whether support mechanisms were explored in sufficient depth. Still, the length of the interviews shows that the participants were comfortable and invested in sharing their experiences; there was no sense, even in the longest interviews, that participants became fatigued or that the interview quality was compromised. Our sample largely comprised spousal ICs, and the few nonspousal ICs were often “secondary” ICs; some care is needed in interpreting the findings as it regards other types of ICs (e.g., primary nonspousal). Due to Covid-19, partial recruitment through The Brain Tumour Charity’s networks means participants may have been self-selected, inadvertently recruiting those in a more “active” caregiving role, with more time and interest in taking part. Furthermore, all interviews had to be conducted remotely, though this may have eased participant discomfort and encouraged greater disclosure [39].