Family members of people with aphasia (PWA) have been referred to as the ‘hidden victims’ of aphasia, due to the negative impact it can have on their lives, and the lack of support or interventions available to them [3]. When compared to caregivers of stroke survivors with no aphasia, caregivers of those with aphasia had more significant depressive symptoms and worse stroke-related caregiver outcomes, including lower energy levels and financial wellbeing [10].

Le Dorze and Signori [11] interviewed the spouses of PWA to understand their needs. The participants expressed a need for support; a need for more time for themselves to engage in their own activities and have a break from their caretaking role; a desire for the PWA to participate in activities that did not require family member involvement; and wanting to see their spouse’s communication abilities improve, in the hope that this would improve their relationship. Factors could act as both facilitators and barriers to meeting the needs of family members. Either they were unable to find services that provided support, or the available services were difficult to access. Brown, Worrall, Davidson and Howe [12] interviewed 24 family members of PWA about their perspective of living successfully with aphasia. They reported that aphasia can affect the whole family and therefore family members’ needs and priorities ought to be considered.

In their qualitative study Grawburg, Howe, Worrall and Scarinci [13] described the experiences of family members of PWA using the World Health Organisation’s International Classification of Functioning, Disability and Health (known as the ICF framework). Twenty participants, including grandchildren, children, spouses, siblings and parents of PWA reported changes in both the ‘Body structures and functions’ and ‘Activities and participation’ components of the framework as a result of their loved one’s aphasia. Domestic life was particularly affected, with many participants reporting they were now primarily responsible for household tasks due to the reduced abilities of the PWA. They also experienced changes in their relationship with their family member due to aphasia. Family members reported differences in how they communicated as well as differences in what they communicated about. Time for family members to spend on their own activities was diminished because of the time spent focusing on the PWA. Although many of the changes reported by members of the family were negative, most participants reported positive changes as well, including being proud of their family member for facing the difficulties that aphasia brings, valuing their relationship with their family member more and an increase in tolerance and acceptance of others. Despite this, the study highlighted the challenges that family members face due to their loved one’s aphasia and indicated that interventions should be in place to target their needs. Collectively, these studies emphasise the importance of understanding the impact of aphasia not just on the PWA but on the family as well.

Community groups are a common way that PWA can get support alongside or following the completion of traditional speech-language therapy. Community groups can provide new friendships, and membership in a weekly aphasia group has been associated with lower perceived social isolation, stronger social connections [14], greater participation and a space where communication difficulties are commonly understood and shared [15,16]. A study of long-time group members and those who had left groups revealed a sense of belonging, contribution and companionship for those who had maintained membership and feelings of rejection and exclusion by those who had left [17].

Community groups for PWA have also been found to have an impact on the family members of participants too. Rotherham, Howe & Tillard [18] conducted interviews with ten PWA who had participated in community groups and six of their family members. Ten benefits of community groups were identified by the family member participants. These included improved communication between the family member and the individual with aphasia, support and social connection for the family member, as well as giving family members time to themselves while their loved one attended the community group.

Gavel Clubs (GCs) are a community group that can be explicitly designed for PWA. They are an adapted form of Toastmasters International for people who choose not to join a regular group [19]. They use public-speaking to build skills in communication, confidence, and leadership [19]. GC meetings typically include impromptu speeches (1–2 minutes long), and prepared speeches (approximately 6–8 minutes long). Group members evaluate both speech types for what they liked and, what could be improved. Generally, speeches are evaluated on their structure, effectiveness, vocal variety and use of body language. While most members participate in impromptu speeches (known as ‘Table Topics’) every meeting, the prepared speeches are voluntary, with members completing 2–4 of these each year [20]. Family members often support the GC member in the planning and practising of their speech and by producing communication aids such as PowerPoint slides or props. GCs also provide members with an opportunity to take on leadership roles, such as club president (elected annually by members), or positions related to the structure of the weekly meetings, such as Toastmaster, who introduces the speakers, and evaluators. Family members of PWA are welcome to attend GC meetings either as a support person or to take on other roles such as treasurer or timekeeper.

The current study aimed to examine family members’ perspectives of weekly GC participation. Although the primary purpose of a GC is to provide support for PWA, we sought to understand any impact on the family of GC members. Previous research has shown that GC membership is associated with improvements in communication confidence and quality of communication life [21] as well as improvements in conveying linguistic content and grammaticality [22]. This qualitative study will add to existing literature in the area of aphasia-specific community groups.

Semi-structured interviews [24] were carried out individually, either face-to-face or electronically over video (in a location of their choosing). The average duration of the interviews was 33 minutes (range; 23 to 73 minutes). The interview that took place with the wife and daughter of a GC member was considerably longer than average. The interviews with close friends were generally shorter than interviews with family members and were all less than 25 minutes long. The interview questions (provided in Table 2) were developed specifically for this study and were focused on understanding how the PWA’s participation in the GC had impacted participants. Interviews were audio-recorded, then transcribed verbatim by the first author. Notes that came up during the transcription process were documented for possible use in the analysis.

The interviews were analysed using thematic analysis [25]. The process of transcribing each interview aided familiarisation with the data. An inductive coding approach was used and codes were created based on the content of the data. On the completion of initial coding, 63 codes had been generated. These were visualised on a concept map to examine the relationships between the codes and to establish initial themes. Through this process, several codes were collated based on their similarity and two were removed because there was insufficient data to support them. The initial themes were reviewed through discussion between the researchers, and any discrepancies clarified. Three themes and two subthemes were finalised as describing the family perspective of GC participation. The fifth phase of thematic analysis is defining and naming the themes. In order to do this, we defined the themes and subthemes and then searched for relevant participant quotes to use as theme names. NVivo 12 software was used for transcribing and analysing the data to ensure consistency [26] and thematic analysis processes were followed very closely to enhance rigour [25].

Participants described how the GC had given the PWA an activity to fill their time, which had become emptier as a result of aphasia. Participants also thought that having an activity helped PWA develop a sense of purpose in life. As participant 13 said:

Participants also felt that certain aspects of the GC benefitted PWA. For example, everyone is required to contribute, even if just introducing themselves. Some participants felt the need to assist the PWA by helping them to prepare for meetings.

The participants who regularly attended the GC, and had roles within the GC, said it gave them something to fill their time: “It just gives you another activity to be involved in so it’s quite good really, cause I’ve got the time and I’ve got the ability to do it so why not do it?” (Participant 8).

This theme was also evident in responses from participants who did not regularly attend. However, the benefit was that it gave them respite or time to themselves while the PWA attended meetings. These participants said they spent a lot of time with the PWA, so having a few hours apart each week, gave them something to talk about when they were together again: “He’s always got like a debrief, like his stories for the next few days are like “Oh, at Gavel Club we did this, we did this” for like three whole days” (Participant 3).

Participants described feeling less concerned about the PWA as a result of them having the GC and other activities as part of their routine:

Some of the participants described the PWA as very busy, and the GC was only one part of their routine. For those participants, having a summer break from the GC did not greatly impact their lives. However, other participants found that the PWA was impacted to a greater degree by the breaks:

Family members thought that the GC provided a sense of community for the PWA. The impact of this community was also felt by the participants, although the extent to which it was felt depended on how involved they were with the GC. Within this theme two subthemes exists: (1) “This is not just us” and (2) “Support of knowing other people go through it”. In general, participants felt the GC was an environment where PWA could socialise and spend time with others:

The impact of the GC on the family member resulted in a reduced sense of responsibility regarding the PWA’s social wellbeing and participants were happy they had found a sense of community. “Mostly pleased to see that she is engaged in something that makes her feel valued” (Participant 11). The participants who regularly attended the GC themselves felt they were personally a part of the GC community as well:

Participants described changes and improvements they had seen since the PWA joined the GC. Many of the improvements they discussed were quite general, in that participants felt they were seeing a progression in the abilities of the PWA. Although it is unclear whether these improvements were a direct result of GC participation, participants felt it played a role. As participant 4 said: “if there hadn’t been a GC, I think he might’ve not made so much progress”.

Many of the participants reported that the PWA’s speech had improved in the time since they joined the GC:

Some of the participants expressed a sense of pride and were inspired by the achievements of the PWA. There were also practical implications for families in terms of improvements in communication: “Um, well just because he’s getting more fluent and more enthusiastic so, it, it makes, makes certain things easier, you don’t feel isolated so, so I think that’s the best thing” (Participant 4).

Confidence was another area of improvement that family members attributed to the GC. This change was often conceptualised in terms of their participation in GC meetings:

The improvement in the PWA’s confidence had a further impact on the participants: “By him feeling more confident about it, I guess that that rubs off on me too” (Participant 6). Similarly, family members noticed improvements in independence in social settings and the ability to carry out activities in daily life such as arranging transport. The independence of the PWA often had a direct impact on the participant: “makes me a little bit, you know, a lot more relaxed and um, you know, I’m comfortable we can get on with just living our lives normally rather than him being as dependent” (Participant 10).

Family members also reported seeing an improvement in the PWA’s mood, which they derived a sense of pleasure from: “he’s very happy, he, he brought, brings that happiness to home” (Participant 2). For some participants this happiness was especially important as they felt it improved the PWA’s symptoms: “when he’s buoyant and you know, in a good place, then it, everything flows and not just his speech flows, but his understanding flows as well” (Participant 10).

Two of the participants who regularly attend the GC also noted improvements in their own confidence and public speaking abilities:

While a not a theme, a number of the participants spoke in the interviews about the impact that aphasia had on their own lives and that of the PWA. This occurred in a variety of ways. The participants who had been living with aphasia for a short period of time spoke more about the initial process of rehabilitation and the progress they were hoping to see: “I just think it’s gonna keep improving, like, I don’t, I don’t know if it will plateau but, it doesn’t, it’s definitely not plateauing yet” (Participant 3). However, the participants who had lived with aphasia for a longer period of time talked more about a sense of moving on and coping with the everyday challenges they continued to face. Within this, there was also a sense of gratefulness for what they still had: “You don’t grieve for what might’ve been, but … the fact that we still have [name of husband] with us, is … the best part about it. Like we can cope with the speech, cause I’ve still got him” (Participant 10).

While the current study has contributed to an understanding of the impact of GCs on family members of PWA, there are some limitations. Our study has only included participants from a single GC, it is possible that other GCs do not impact PWA and their families in the same way. However, given that many community groups for PWA have been found to impact social connection and a sense of purpose [14,15], it is likely that other GCs would exhibit similar effects to those described here. Our study was also only able to reach the family of PWA who were still attending the GC regularly. The family members of PWA who have left the GC may have different opinions, as was the case in a recent study [17]. However, very few PWA have left the GC since its inception, making this a difficult group for us to sample. Nevertheless, future research would benefit from involving more GCs and both past and present members to establish whether the impact of this GC is unique among aphasia groups.

Another potential limitation is that some GC members did not pass the study information onto their family members, or the family members chose not to participate. It is possible that those who did participate perceived positive benefits which they wanted to express. Non-participants may have had different or less positive views. Recruiting a wide range of family members (including close friends), some of whom were not directly involved in the GC, is likely to have reduced the impact of self-selection bias but this cannot be ruled out.