From the Inner Circle to Rebuilding Social Networks: A Grounded Theory Longitudinal Study Exploring the Experience of Close Personal Relationships from the Perspective of People with Post Stroke Aphasia

ABSTRACT

Background

Interpersonal relationships are frequently subject to challenges and changes following the onset of aphasia and have strong ties with psychosocial and health outcomes. In order to be able to effectively support people with aphasia, a greater understanding of how challenges and changes evolve over time is needed.

Aims

The current research sought to understand the lived experience of interpersonal relationships for people with aphasia through longitudinal enquiry over the first year following the onset of stroke.

Methods and Procedures

Seven participants with aphasia (6 male, 1 female) with aphasia ranging from mild to severe were recruited through inpatient rehabilitation units. Four were married and three lived alone. They were interviewed on four occasions beginning around the time of their discharge home and lasting for around one year following their return home. Researchers adopted a constructivist grounded theory approach and data were transcribed, coded and analysed using a constant comparative method.

Outcomes and Results

This research provides novel insights into the progression of interpersonal relationships over time following the onset of aphasia. Early on, participants retreated into a core group of close others characterised as their ‘inner circle’. During early stages, inner circle relationships were subject to challenges and changes as people learned to live with aphasia. As they felt ready, people with aphasia began to reconnect with friends. This process was often mediated by spouses and in the early phases of recovery was limited and challenging. Reconnection with friends brought with it varying degrees of connectedness, however for those without strong inner circle relationships, marked isolation occurred at all points throughout the year following discharge.

Conclusions

Relationships are frequently impacted by the presence of aphasia and are subject to changes and challenges. This research highlights phases which people with aphasia may move through as they adjust to their new social worlds. These findings have clear implications for the development and timing of interventions and emphasise the need to support those most at risk.

KEYWORDS:

• Aphasia
• relationships
• social relationships
• marriage
• friendships

Introduction

The presence of aphasia has been associated with a range of psychosocial consequences including depression (Astrom et al., 1993; Cruice et al., 2011; Sarno & Gainotti, 1998), loss of employment (Niemi & Johansson, 2013; Parr et al., 1997), role changes (Dalemans et al., 2008; Sarno & Gainotti, 1998), emotional changes (Code & Hermann, 2003; Hilari, 2011) and high levels of distress (Hilari, 2011; Hilari et al., 2010). Furthermore, the psychosocial difficulties experienced following aphasia frequently persist and require long term support (Wray & Clarke, 2017).

Both stroke (Ford et al., 2021; Northcott et al., 2016b) and post stroke aphasia (Ford et al., 2021; Northcott et al., 2016b) are known to impact interpersonal relationships. After stroke, changes are seen in spousal relationships (Achten et al., 2012; Carlsson et al., 2007), family relationships (Daniel et al., 2009; King et al., 2002) and friendships (Northcott et al., 2006b; Teasdale & Engberg, 2005). People with aphasia are known to experience additional challenges in relationships, experiencing greater psychosocial challenges (Hilari, 2011) and smaller social networks (Northcott et al., 2016) than the general stroke population. This is unsurprising given that the impact of language and communication difficulties is experienced most through interactions with others. Researchers have highlighted the importance of language not only for transactional communication but in forming the basis of interactions with others (Kagan, 1995). Language can therefore be seen as the backbone of relationships (Boxer, 2002; Pound et al., 2000) and as such the effects of language difficulties are felt when engaging socially (Parr, 2001). Unsurprisingly therefore, research has demonstrated that vast relationship changes occur following the onset of aphasia (Barry & Douglas, 2000; Cruice et al., 2006; Ford et al., 2018).

The importance of interpersonal relationships following aphasia has been increasingly acknowledged, particularly since the publication of the World Health Organisation’s International Classification of Functioning, Disability and Health (ICF), (WHO, 2001) which brought with it an increasing focus on participation as an important outcome of rehabilitation. Subsequently, models such as the framework for capturing real-life outcomes of aphasia intervention (A-FROM) (Kagan et al., 2007) and the life participation approach to aphasia (Chapey et al., 2000) have focussed attention on valued participation outcomes for people with aphasia. The need for action in this area is now clear with the National Institute for Health and Care Excellence (NICE, 2013) guidelines stating that following stroke the impact on interpersonal relationships should be considered and addressed. The Australian Clinical Guidelines for Stroke Management also state that the impact of aphasia on relationships should be addressed early and that families should have the opportunity to discuss concerns around this area with professionals (Stroke Foundation, 2022).

This increasing focus on interpersonal relationships is strongly underpinned by research which highlights the importance of relationships both generally and for people with aphasia. Positive relationships have consistently been associated with more positive psychosocial outcomes (Cohen et al., 1997; Kop et al., 2005; Rutledge et al., 2008) and those who are socially isolated tend to be less psychologically and physically healthy (Cohen & Janicki-Deverts, 2009; Umberson et al., 2006; Umberson & Montez, 2010). For people with aphasia, positive relationships have been associated with the ability to live successfully (Brown et al., 2012; Manning et al., 2019) and with quality of life (Cruice et al., 2003; Cruice et al., 2006).

Quantitative research has highlighted that people experience changes in their relationships and altered social networks following stroke and aphasia (Cruice et al., 2006; Davidson et al., 2008). However, relationships are complex and evolving entities and as such qualitative research approaches may be more suited to building a deep understanding of experiences (Denzin & Lincoln, 1994; Ritchie & Lewis, 2003). The need for a program of research to better understand the lived experience of relationships for people with aphasia has been increasingly highlighted by researchers (Azios et al., 2022; Ford et al., 2018; Simmons-Mackie, 2000).

In a recent scoping review, we reviewed qualitative literature on the experiences of people with aphasia in their relationships with others and reported that people with aphasia identified a range of challenges. Challenges included difficulty communicating, role changes, the loss of relationships and negative emotions (Ford et al., 2018). Overall people with aphasia valued their relationships highly and factors that appeared to facilitate or hinder the experience of connectedness in relationships were apparent. In this review, we identified a need for more in-depth research, in particular a need for longitudinal research to understand the changing nature of interpersonal relationships over time for people with aphasia. A handful of researchers have adopted longitudinal approaches to explore changes in psychosocial functioning over time, however in some studies people with aphasia were excluded (Wood, 2010) or their inclusion was unclear (Theadom et al., 2018). Where people with aphasia were included, researchers focused on constructs such as living successfully (Grohn et al., 2014) or hope (Bright et al., 2020). While these constructs are related, the lack of specific focus on relationships may have yielded different results.

The aim of this study was to investigate the perspective of people with aphasia on the experience of close personal relationships and the way in which they change over the first-year post stroke.

Materials and Methods

Participants

People were eligible for this study if they were over the age of 18, had been admitted into an inpatient rehabilitation facility with a first ever stroke and subsequent aphasia, and did not have any significant pre-existing mental health or neurological conditions.

Speech pathologists not connected with the study, identified inpatients who met the eligibility criteria and provided them with aphasia friendly information about the study. Inpatients who expressed interest in the study were contacted by the researcher and provided with more detailed information and formally consented. The ability to provide consent was checked through a series of yes/no questions to check for comprehension, with supportive communication strategies used. Institutional Ethical approval (University and Health Department) was gained prior to commencing the study.

Data Collection

Semi-structured interviews were conducted with participants using a topic guide. Discussions focused on participants’ experiences with close personal relationships with spouses, children, family and friends. Interviews were conducted in participants’ homes and all participants were provided with an option of being interviewed on their own or with a family member present. The initial interview was conducted soon after the person’s discharge from an inpatient rehabilitation facility with interviews taking between 45 minutes and 1.5 hours. Participants were then interviewed at a further three timepoints four months apart, to capture the experiences across one full year after stroke and discharge home, with a total of four timepoints per participant across the first-year post stroke. Four participants completed all timepoints however, with one passing away after three timepoints (Jan), one withdrawing after his aphasia resolved (Malcolm) and one withdrawing after two timepoints (Syd). A range of strategies were used to support participants to convey messages. These fell within a ‘total communication’ approach (Jones et al., 1992) including the use of gesture, drawing and writing. Approaches outlined by Luck and Rose (2007) were also used such as modifying questions, providing repetition and clarification of meaning.

Three assessments were also conducted at the first timepoint to provide further clinical information to contextualise the participants’ data. These included the Western Aphasia Battery (WAB) – Revised (Kertesz, 2007) if it had not recently been completed, the Montgomery-Asberg Depression Rating Scale (MADRS) (Montgomery & Asberg, 1979) and ‘my social map’, an informal map of social networks. The strategies described above to support communication with participants with aphasia were also used to support collection of data for the MADRS and ‘my social map’. MADRS results have been included in table 1, however further details of the MADRS and ‘my social map’ will be reported in a subsequent paper.

Table 1. Participant Characteristics.

Characteristic	Range
Gender	1 female, 6 male
Age	Range 43 - 93
WAB Score	Range 22.9 – 91.8 (4 mild, 2 moderate, 1 severe)
Living Situation	4 lived with spouse 2 lived alone 1 lived in supported accommodation
Time post stroke	Commencement of interviews ranged from 1-6 months post stroke
MADRS Scores	Timepoint 1, Range 4-22 Timepoint 2, Range 6-28 Timepoint 3, 8-18 Timepoint 4, 4-30

Data Analysis

A constructivist grounded theory approach was adopted, in line with the methodology initially designed by Glaser and Strauss (1967) and subsequently developed by Birks and Mills (2015) and Charmaz (2000). Furthermore, a range of analysis techniques were utilised due to the need to analyse a breadth of longitudinal data and identify patterns over time (Tuthill et al., 2020).

Familiarisation with the data occurred initially through the researchers listening to and reading transcriptions of interviews. In line with grounded theory analysis, initial coding began with line-by-line coding of information from interviews in participants’ own words. NVivo software (QSR International Pty Ltd, 2020) was used to support data management and coding. Following generation and review of a large number of initial codes, codes were sorted and grouped to form categories. In moving from categorisation to theoretical coding, researchers used several methods of analysis to form core categories and develop theory. First, visual ‘mind maps’ were created which summarised each participant’s experiences at each timepoint. This process allowed participants’ journeys over time to be conceptualised visually and timepoints to be compared within each participant’s journey over the four timepoints. To add further depth of understanding within participant stories, the first author produced narratives which told the story of each participant’s journey, supported by visual mind maps and in-depth knowledge of the data. In this way changes over time could be identified for each participant and emerging changes over time were recorded for individual participants. Individual participant mind maps and narratives were then compared across participants and the researchers highlighted commonalities of progression over time which emerged. At all stages of data analysis, the research team met regularly to review categories and themes and to discuss emerging information (Tuthill et al., 2020).

Quality assessment in the current research followed Charmaz’s criteria with consideration of credibility, originality, resonance and usefulness (Charmaz, 2006). Credibility and resonance are important concepts relating to the depth and accuracy of data and analysis. In the current research, the research team ensured a breadth of relevant data through strong rapport building with participants, collecting rich background data and gaining detailed descriptions. Background data included measures of depression, language function and social networks. Additionally, interviews involved collection of information around participants’ family lives, social lives, employment and home situations to better understand their social context. Reflexivity was considered at all points through consideration of researcher perspectives and biases, through journalling, peer discussion and personal reflections during interviews and analysis. The research team also acknowledged that as aphasia researchers with an interest in interpersonal relationships, we brought assumptions around the importance of connectedness. Throughout data collection and analysis we reflected on our assumptions and considered how these assumptions might be influencing our interpretation of the data.

Through an exploration of the current literature around this topic and broad constructs, the originality and usefulness of our findings were considered. Additionally, methods outlined by Creswell (2013) for enhancing rigour of qualitative research were employed including rich, detailed description of the setting, participants, and research processes.

Results

Participants

Seven participants were recruited for the study, one female and six males. Four were married, two divorced and one widowed and all were from English speaking backgrounds. Three participants were working at the time of their stroke but subsequently retired and the remainder were retired when they had their stroke. The age range of participants was 43 to 93 years and severity of aphasia ranged from mild (WAB score 91.9) to severe (WAB score 22.9). Time post stroke ranged from one to six months at initial interview.

A total of nine participants expressed interest in the study and were contacted by the researcher to receive further information. The two participants who declined cited current life challenges and stressors.

All participants were interviewed in their homes. Two participants (Bill and Jim who both had severe aphasia) elected to have their spouses present during the interviews. For these participants, spouses supported communication as familiar communication partners however their responses were not included in the analysis. Where participants with severe aphasia had difficulties conveying detail and the spouse offered a suggestion, it was only when the person with aphasia unambiguously agreed or disagreed and confirmed this response, that this response was included in the analysis.

Four of the seven participants completed interviews at the four timepoints. One participant passed away after three interviews (Jan), one withdrew after two interviews (Syd) and one participant’s aphasia resolved after two interviews (Malcolm). This led to a total of 23 interviews being completed, transcribed and analysed. Participant details are provided in Table 1. Note pseudonyms are used throughout the text to ensure participant confidentiality.

Thematic Analysis

In the year after their stroke, participants moved through a process which began with seeking refuge in their close inner circles. The term ‘inner circle’ was not used by participants but was conceptualised by the researchers to be those people who participants’ relied on and identified as their closest relationships. During this early period, they dealt with a breadth of changes and challenges that required the person with aphasia and their inner circle to make adjustments. Although the process varied from person to person, for many it was not until these early adjustments occurred that participants felt able to step outside of their inner circle and reconnect with others. The process of reconnection with friends and other contacts occurred over time and was frequently supported by close others in the inner circle, particularly spouses. Inner circles varied widely however and importantly, those who did not have a strong inner circle were at risk of marked isolation throughout the first-year post stroke. This process is depicted in six themes and subthemes illustrated in Figure 1 and described below.

Figure 1. Proposed process of adjusting within relationships for people with aphasia in the first-year post stroke.

Theme: Seeking Refuge within the Inner Circle

Early on following a stroke and the onset of aphasia, participants sought refuge in what can be seen as an inner circle of people with whom they felt comfortable. In these early stages, people with aphasia reported that it was difficult to see friends, “um a lot of a few friends I haven’t caught up with because I just can’t face it” (Jan). Participants often said that they didn’t feel motivated to engage in their usual activities such as church, bowls or other social activities. Some were unable to face friends or didn’t want “to see people (having) aphasia” (Mat). Socialising for participants felt different with Jan stating “going out feels nothing like it did before.” Another participant, Bill reported feeling that it was easier to stay home on the farm rather than going out and seeing people; “It’s better now you know even here sheep and you know a dog.”

During this phase, although friends and family members may have offered support, some reported being reluctant to accept this help, as reflected by Jan: “Friends would like to be um sometimes a bit more supportive but um I don’t want to. I don’t know what it is but just involve them more. I don’t know.”

While the action of retreating to their inner circle relationships was common, the composition of and characteristics of inner circle relationships varied widely among participants. Indeed, it emerged that no two inner circles were the same, which has implications if we are to seek to truly understand the social worlds of people with aphasia. It is likely that experiences of people with aphasia will be impacted by these factors.

Subtheme: Composition of the inner circle. The inner circle differed for each participant. For participants who had a spouse, the spouse was part of the inner circle, as reported by one participant “um and definitely my husband” (Jan). For others, the inner circle consisted of children who lived at home or sometimes adult children who stepped up into a more supportive role, with Syd reflecting “my daughter and I have become closer. Just she’s probably interacting with me more.” Importantly, some participants did not have a close inner circle with one man (Malcolm) living alone and only staying in touch with friends and family via email. Barry who did not have a strong support base and who relied on formal supports reported “yeah I’m alone. Lonely I suppose in a sense.”

Subtheme: Pre-stroke levels of independence. Relationships within the inner circle brought with them a range of pre-existing habits and ways of being together. First, participants talked about the level of independence they preferred in their pre-stroke relationships. Within some spousal relationships, participants said that they’d enjoyed doing things with their spouse but had also done many things independently before their stroke; “I was very independent before, I went out on my own and my husband did as well” (Jan). Another participant, Mat, reflected on his independence from day-to-day family life before his stroke, due to working full time.

Subtheme: Pre-existing social connectedness. Inner circle relationships were variable in relation to how social participants were outside of their inner circle prior to the stroke. One participant, Jan reported that she and her husband were their own social world while another participant, Mat reported having only a few friends who he rarely saw. There were also adult children or grandchildren who lived nearby for some or far away for others, which impacted the level of social connectedness participants had with their broader family networks.

Subtheme: Gratitude and cohesiveness. The length of and cohesion within inner circle relationships was also discussed. Some participants reported gratitude for those in their inner circle including their spouses; “wife and you know have it good” (Bill) or adult children, “she has always been excellent to me” (Syd). Some participants in the study reflected on the cohesion within their close relationships with statements such as “we get on fine” (Mat) and “still pretty good after 50 years of marriage” (Jim). Conversely one participant, Mat commented on the negative communication patterns which were longstanding within his marriage, and which continued to affect their relationship, noting “we you know stumble. It’s difficult with us.”

Theme: The Inner Circle Changes

After the onset of aphasia, a range of changes occurred within inner circle relationships as participants struggled to fulfil roles and communicate their needs with close others. While participants received support from close others, they also dealt with role changes, communication difficulties, conflict and a loss of independence.

Subtheme: Support from within the inner circle. Following their stroke, people with aphasia reported receiving high levels of support from those in their inner circle, particularly those they lived with. Spouses were frequent providers of support including emotional support; “she’s an um an open resource to talk to” (Mat) and practical support. Mat also commented on the support his wife provided for him in advocating for him within the medical system, talking for him at the shops and communicating with others in the family on his behalf. Another participant, Jan noted the practical support her husband provided in solving issues when going out and providing physical care for her, noting “I rely on him totally.” Adult children were often described as being supportive with participants reporting that children took care of finances, drove them around and organised medical care.

Importantly however, some participants did not have a close inner circle and in these cases, participants found themselves without support. One participant, Malcolm reported that he did everything around the house and found it tiring and another participant, Barry required formal supports and moved into a residential care facility.

Subtheme: Role changes within the inner circle. Participants reflected on the significant role changes they’d experienced within their household. Participants were unable to do usually regular tasks such as driving children to school, cooking or housework. One participant, Jan reflected on her frustration around not being able to cook which was an activity she’d previously enjoyed, “I hate the food he (husband) cooks because well he doesn’t really like cooking.” Another participant reflected on frustration in the household around unfinished tasks as a result of his fatigue; “I mean you know I know that my wife would expect the dishes to be done” (Mat). Changing roles were sometimes a source of guilt and frustration with Jan reporting “I feel sorry for him because he has to do everything for me” and also highlighting frustration, saying “and the way he does things and the way I would do things are poles apart.”

Mat, who had young children at home discussed the profound changes he and his wife had experienced due to the change from his wife being the primary parent at home to both himself and his wife being at home with the children. His role had changed vastly with a move from working full time to being at home and negotiating the day-to-day challenges of parenting together with his wife. He commented “before stroke.. I would be looking after them you know, spending time with them and then you know just generally relating the problems of the day.”

Subtheme: Loss of independence. Participants frequently reported a loss of independence within their inner circle relationships. Jan reflected on her loss of independence reporting that she needed help for nearly everything from her husband and felt that she would never have her independence back; “well it’s not only that you see you’ve got everything I want to do at the moment is my husband and me. I can’t do anything without him.” Another participant, Mat noted the challenges of being at home with his family; “there’s no respite, you know. It’s just not it’s just challenging.” Another participant received help and support from his adult children and although this was appreciated, he felt uncomfortable relying on them, saying “I don’t want to be like that” (Jim).

Subtheme: Communication breakdowns and Conflict. Conflict and communication breakdowns occurred for participants within their inner circle relationships, particularly in the early stages; “at first I was totally aphasic, not completely aphasic but I had lots of mistas (mistakes)” (Jan). Another noted that it was hard for his wife initially as she didn’t know what he wanted (Jim). Participants reported that communication breakdowns occurred when they were unable to convey a story, or when their significant other didn’t understand what they wanted. Mat spoke about coming across wrong when communicating with his family, saying “and you know you’ve gotta sound the response in your head and it’s like no it’s not it’s not right.” Communication breakdowns were exacerbated when significant others didn’t give enough time for communication or didn’t give their full attention; “but sometimes she doesn’t look at me properly yeah” (Jim). At times, conflict could result from communication breakdowns.

Theme: Adjustment within the Inner Circle

Over time after a stroke, participants and those in their inner circles made changes and adjustments which allowed them to function more effectively. They made attempts to rebuild their independence and solve problems such as learning to communicate more effectively.

Subtheme: Renegotiating independence. People with aphasia frequently reported the need for more independence and there was an increasing recognition that their spouse needed freedom and independence also. Jan reported of her husband “he’d like to have more time to himself. It’s um, instead of having to spend it with me but let’s hope we can help each other out” and another participant, Mat noted “my wife needs to do something (for herself) still.”

Participants who had a spouse often made progressive attempts to do more without their spouse. For some this involved a spouse finding new interests and for others it involved the person with aphasia beginning to do things alone such as going to the shop or the hardware store without assistance. Where adult children were a support, participants noted a decrease in support required with Syd reporting that his daughter still called, but that she dropped in less as she could see he was doing well.

Subtheme: Doing more with close others. Over time, people with aphasia moved from activities which were predominantly home based to doing more together outside of the home. This involved activities such as visiting other family members, going out for a meal, walking or going to the shops; “my wife and I go to the shops and to get lotto tickets” (Jim). Outings were seen as a positive step but at times participants felt overwhelmed with one participant reflecting on a visit to a café; “well it was busy and noisy and that was the first time I’d been out and it was too much” (Jan).

For participants who had a spouse, spouses often solved practical issues when going out of the house as there were new challenges to consider. One participant discussed practical considerations reporting that before going out her husband found places which were wheelchair accessible, had a disabled toilet and were sufficiently quiet. For those who did not have a spouse in their inner circle, early attempts at engaging in activities outside of the home were often done in solitude; “wanted to walk to the cemetery where my wife is buried and was able to do it” (Syd).

Subtheme: Learning to communicate. Over time, people with aphasia and those in their inner circle developed strategies to support communication in a process of learning to communicate together. There appeared to be reduced frustration over time and for some there was a sense that there were fewer communication breakdowns as they worked things out together. One participant, Mat noted “wife and I have a system for dealing with communication breakdowns” and another, Jim commented on his wife’s ability to support his communication after having known each other for so many years.

Participants sometimes reported that they developed specific strategies with those in their inner circle. One participant reported that when his wife hadn’t understood he showed her what he meant; “I’ve gotta come here and look at her a look what I’m doing and find her and say oh yeah that’s right” (Jim). Others increased their use of gesture and pointing to convey messages. For one participant, Mat, miscommunications had occurred around changed intonation and he had developed a strategy in which he labelled his intonation, “I label, yes this is a question, yeah so cause um wife gets stuck.” As time went on, participants seemed more able to advocate with close others around when they wanted communication supports and when they did not.

Theme: Stepping Outside of the Inner Circle

As time moved forward, participants made increasing attempts to step outside of their inner circles and engage with others. This change included reconnecting with friends and broader family, however for some the process of reconnecting with friends was supported by members of their inner circle.

Subtheme: Support for moving outside of the inner circle initially. Over time, participants made attempts to widen their social circles to reconnect with friends or family members. Those in the inner circle often provided the necessary support which allowed participants to take these early steps, thus acting as facilitators to social participation. Close others solved practical issues around outings and frequently accompanied people with aphasia to clubs, family members’ homes or out for meals. Spouses tended to be more involved in this type of support than adult children and for those who lacked an inner circle, early attempts at social re-engagement were made alone without support.

Spouses also frequently facilitated communication between participants and the people with whom they connected, acting as translators with family and friends. For example, spouses often communicated with friends and family and gave updates on progress. One participant, Bill reported that his spouse often put the phone on loudspeaker when friends or family called to allow him to be a part of the conversation. Bill also reported that his wife actively supported conversation between himself and his friend who had difficulty communicating together without assistance. Over time this support was often able to be withdrawn but for some the withdrawal of communication support was challenging.

Subtheme: Early Connections with friends. Over time, participants spoke about attempts to see their friends more and to reconnect. Motivation to reconnect was varied however, with Syd who lived alone reporting “I wouldn’t mind seeing people but it’s not strong to me to ah want to talk about it too much” and another, Jan, reflecting on the impact of noise and fatigue when friends visited; “yep the noise is just too much.”

Early on, connections with friends took the form of phone calls or emails for some; “I keep in touch with friends and family via phone and email” (Malcolm). For others, friends began dropping in or providing supports; “yesterday I had friends call in and call and then had a lie down” (Jan). Some participants reported reconnecting with activities such as going bowling, surfing or to the sailing club which led to increased contact with friends; “I’ve been seeing some friends surfing it’s been good” (Barry). For others however activities remained difficult due to limitations around physical mobility, fatigue or poor health. For participants who had a circle of friends, some noted that while some friends had attempted to re-engage, others had hung back.

Theme: Changed Landscapes with Friends

As participants began to reconnect with their friends, changes and challenges within these relationships emerged. Some friendships were lost and others experienced increasing distance, with participants feeling that friends were busy with their own lives.

Subtheme: A feeling that friends have their own lives. Several participants commented on a feeling that friends were too busy to see them or had their own lives. Participants discussed friends’ lack of availability, being busy with other people or seeing grandchildren. One participant reported; “one friend came to see me in hospital but I haven’t really talked to him since then, he’s following his own life” (Malcolm), and another “well they oh they don’t be they’re involved with other people” (Barry). For some such as Jan, there was a feeling that “my friends have other things to do than just see me.” Other practicalities obstructed seeing friends such as friends living a long way away or still working.

Subtheme: Loss of friends. Some participants spoke about the loss of friendships. One participant stated; “all your friends disappeared” (Barry) and another “I have a few friends but they don’t come and call in” (Malcolm). One participant, Barry reported feeling like an outcast among his friends and reported that “there’s none” in his circle of friends.

People with aphasia attributed the loss of friendships to a range of factors including friends who were unable to deal with their aphasia despite initial attempts at contact, friends living far away or feeling that friends were avoiding them. This progression was highly variable among participants however, with some participants making progressive movements to see more friends over time and another reporting that friends increasingly disappeared over time as a result of him being unwell and in a residential care facility. It appeared that those who had strong support from a spouse who was able to facilitate friendships had greater success in maintaining friendships.

Theme: Connecting with Friends

As they reconnected with friends, people with aphasia had a range of experiences around their feelings of connectedness with friends and their ability to share and communicate with them.

Subtheme: Isolation vs Connectedness. Participants with aphasia spoke of both feelings of connection with and isolation from friends. For some participants there was a feeling of being a part of things with friends again over time and remaining close with good friends, with one stating “oh yeah, better (with best friend)” (Bill). For others there was an ever present and increasing sense of isolation from friends. One participant, Barry stated “I’m not a I’m not a outcast or anything but um it’s all like that” and another “just I can’t because it’s too header (hard)” (Jim). Some reported a feeling of being an outsider saying “I feel that people avoid people who are unwell” (Barry). And another; “yeah I do get sick of being at home by myself” (Malcolm).

Subtheme: Communicating with friends. In general, participants with aphasia felt that friends accepted their communication difficulties, however some felt however that friends didn’t know how to deal with aphasia. People with aphasia spoke about needing friends to give them time and to slow down and simplify what they’re saying, however this was challenging and some friends were reported to ‘waffle on’ meaning that people with aphasia couldn’t get the words out. One, (Mat) participant stated “friends need to give me time, sometimes they just talk about themselves.” Some also reported staying quiet in social situations, having difficulties telling stories (Bill and Jim) or difficulties sharing information about life (Mat).

Subtheme: Talking to friends about life with stroke and aphasia. Participants with aphasia spoke about how it felt telling their friends about their stroke and aphasia and how they were coping. Some reported that they were able to talk to their friends about it, whereas for others it was more difficult.

One participant, Mat reported “so you know I explain to them I’ve got aphasia then you know this is how I am” and another, Jan reported telling old school friends about her stroke. Jan in particular spoke about how difficult it was talking about her stroke particularly early on as she became teary and emotional. Other participants reported telling friends that they have aphasia but that some people didn’t understand. Some felt that friends didn’t want to hear about their experiences with one stating “I want to (tell people about my stroke) and they do fob you off” (Mat).

People with aphasia spoke about experiences when they talked to friends about how they were coping. Jan reported that she’d been able to speak with her friends about being depressed; “sisters and friends are all good about it (me being depressed) but we don’t know what we can do about it.” Conversely, Mat commented on his difficulty opening up with friends, stating “I’m fine and well and yeah it’s like, no I’m not fine and well.”

Subtheme: Friends give feedback. In several ways, participants reported that friends were a source of feedback, comparison and the rebuilding of identity. Participants sometimes reported comparing themselves with friends who had experienced a stroke. For example, one man reflected on a friend who had significant physical disabilities and felt grateful for the way his stroke had impacted him; “I have another friend who had a stroke and is worse than I am” (Malcolm). Malcolm also commented on the feedback he had received from a friend who was a doctor and had said he was doing well following his stroke; “one of my friends is a doctor and he thought I was doing well.” Friends and family frequently also gave feedback on improvements in talking.

Discussion

That interpersonal relationships are impacted by the presence of aphasia is well known (Brown et al., 2013; Ford et al., 2018; Fotiadou et al., 2014; Johansson et al., 2012). The findings of this study provide a deep exploration of experiences and through this, add to our understanding of the lived experience of people with aphasia in their interpersonal relationships. Furthermore, through adopting a longitudinal approach, this research highlights the evolution of interpersonal relationships over time, describing challenges, changes and adjustment over the year following the onset of stroke and aphasia. The results of this research therefore provide important and novel information about the time bound stages which people with aphasia might move through after their stroke. Although timelines and details varied from participant to participant, by comparing data across timepoints within each participant and then looking for commonalities across participants, patterns of change over time were identified. These findings have implications for the way in which we work with clients with aphasia to support their relationships with close others.

A focus on relationship centred intervention in aphasia is not a new construct and researchers have advocated for a family centred approach to managing aphasia in the past (Halle et al., 2014; Van Rijssen et al., 2021). Holland (2007) highlighted aphasia as a family problem and advocated for a counselling approach, while Howe et al. (2012) noted that a goal of intervention should be the maintenance of relationships. Supporting the psychosocial wellbeing of people with aphasia has been an area of increasing research focus including counselling for people with aphasia (Harrison et al., 2017; Sekhon et al., 2015) and stepped psychological care (Ryan et al., 2020). Research has also focused on communication partner training (Simmons-Mackie, 1998), befriending programs (Hilari et al., 2021) and adopting family systems therapy techniques (Meredith, 2020). What has been less clear is how people with aphasia experience relationships post stroke and how this experience evolves over time.

A key finding of this study was that participants moved through three overarching phases of adjustment within their relationships over the year following the onset of aphasia. Early on, participants retreated into their inner circle of relationships which was subject to challenges and changes. As inner circle relationships adjusted, participants made attempts at stepping outside of their inner circles, initially with support. Over time they reconnected with broader networks which brought with them a breadth of experiences.

In the first phase, participants with aphasia retreated into a smaller core support network; characterised as the ‘inner circle’. Although the extent of and length of this retreat into the inner circle varied from person to person, clinicians working with people with aphasia may need to be aware of this process and the implications it has for practice. Early on it may be important that clinicians focus their efforts around supporting these key relationships rather than considering broader networks which for many at that time may be too challenging and overwhelming. It may be important to view psychosocial recovery as a process that occurs over time. Holland (2007) also highlighted the need to consider readiness in supporting people with aphasia more broadly, noting that the early phases of recovery after aphasia are difficult and hectic and that adjustment occurs over the long term after return home.

Additionally, in the current research the composition and qualities of inner circle relationships varied significantly. For some, the inner circle consisted of a spouse, or adult children and for some there were few or no inner circle relationships. Relationships also brought with them a range of pre-existing ways of being, levels of independence, cohesiveness and social connectedness which all had implications for navigating the adjustment following stroke and aphasia. Importantly, this research suggests that before we can begin to support our clients with their close relationships, it will be important to understand the composition and characteristics of this network. As clinicians, taking the time to talk with our clients about their relationships in a focused and intentional manner may be critical to understanding their experiences and supporting the close personal relationships that matter to them.

Participants in the current study spoke about significant struggle within inner circle relationships, before moving through processes of adjustment. A number of researchers have highlighted the need for psychosocial adjustment following aphasia (Grohn et al., 2014; Parr et al., 1997; Worrall & Brown, 2010) and some have identified coping strategies used within interpersonal relationships (LeDorze & Brassard, 1995; Michallet et al., 2003) such as adjusting to communication changes, making meaning of changes, emotional responses and solving problems. Participants in the current study also spoke about a need to adjust within their inner circle relationships which involved learning to communicate successfully, renegotiating independence and beginning to engage in activities with their close others. Attempts at supporting adjustment in the early phases may be most beneficial if targeted around these areas.

As participants in the current study moved through the process of adjusting to life with aphasia in the safety of their inner circle relationships, they increasingly made attempts to step outside and reconnect with friends. Researchers have highlighted the struggles people with aphasia experience in their relationships with friends (Davidson et al., 2008; Ford et al., 2018) and understanding friendships has been highlighted as an important focus of research (Azios et al., 2022). This research adds further understanding to the process of reconnection. Critically, in the early phases, some people may not actively seek to reconnect with friends and may find it challenging. It is therefore important for clinicians to consider the person’s readiness when suggesting and supporting reconnection with friends.

Another key finding from this research was that early attempts at reconnection were often facilitated by inner circle relationships, particularly spouses. For those who lacked close inner circle relationships, attempts at reconnecting with friends were more difficult and occurred less frequently. Without a support person to contact close others, solve practical issues when going out and even support conversations, people with aphasia faced more barriers and appeared to be at higher risk of isolation from friends. Inner circle relationships may not only be critical during early struggle and adjustment phases but may also be important in supporting reconnection with friends. Importantly, those who lack inner circle relationships may face more barriers and may require external supports to reconnect with friends or to make new friends.

The critical role that inner circle relationships play following the onset of aphasia, was further highlighted by participants in the current study who lacked close inner circle relationships. For these individuals, there appeared to be a lack of support and marked isolation and both in early phases and as time went on. Interestingly, the two participants (Malcolm and Syd) who withdrew from the study did not have strong inner circles. This may highlight that reduced social connectedness led them to withdraw from the study, however it may also highlight that these participants placed less emphasis on social relationships and thus saw less value in the research. Clinically, people with aphasia who lack strong inner circle relationships may be at high risk of particularly poor psychosocial outcomes. The importance emerges therefore of speaking with our clients with aphasia not only about their levels of connectedness, but also their desired levels of connectedness as this may differ.

Limitations and Future directions

While the current paper highlights novel findings, data were gathered from a small group of participants. Further research around these emerging constructs is needed in a larger and more diverse group of participants with aphasia. The participant group recruited in the current study consisted of mostly men with only one female participant. Given the group was predominantly male, this may have impacted the experiences and information provided. Furthermore, our group comprised participants who were all English speaking and from one area in Australia. It may be that experiences differ in more culturally or geographically diverse groups and those with English as a second language.

This study was designed to capture changes to the experience of close personal relationships during the first year following stroke and aphasia. Whilst the first anniversary post stroke is an important milestone, people continue a process of adjustment for many years post stroke (Theadom et al, 2018). It is possible that adopting a longer timeline may yield different results.

Our participant group varied widely in age, from 43 to 93. These different ages represent very different life stages, with known differences in the composition of relationship (Bruine de Bruin et al., 2019). It may be that the experiences of close personal relationships reported here represent this heterogenous group. Furthermore, the severity of aphasia varied significantly in the study and may also reflect disparate experiences within relationships. The two participants with the most severe aphasia both elected to have a spouse present and while this supported communication, it may lead to differing responses from these participants and perhaps more difficulty expressing rich details around experiences.

The relationship status of our participants was also widely variable and included participants who were married, divorced and widowed and also participants at varying life stages. Although commonalities clearly emerged among our participants, it may be that by examining these groups individually different perspectives emerge.

While supporting interpersonal relationships has been highlighted as an important area for research, clinical work in this area is currently not well defined. To enable clinicians to engage with clients to support their interpersonal relationships, tools are required which support information gathering and discussions. Methods for assessing and understanding client’s relationships are important as well as possible further training in areas such as counselling skills (Sekhon et al., 2022) or family systems therapy (Meredith, 2020). It is important that tools and approaches are designed through understanding and consideration of the experience of people with aphasia and their interpersonal relationships. This research provides important preliminary understandings of the process of adjustment within relationships over the first year following discharge, however further understanding and development of these constructs is required.

Acknowledgements

This research has been funded by an Australian Postgraduate Award Scholarship

Disclosure Statement

The authors report no conflicts of interest

Additional information

Funding

This work was supported by an Australian Postgraduate Award Scholarship