Stroke survivors often experience permanent or temporal physical and psychological stroke impairments. As a result, stroke survivors are often discharged to recover in their home environments and are cared for mostly by family members. Additionally, caregiving roles are often assumed without any formal training or preparation whatsoever. This can transform the family’s functional patterns due to adjustments that are made to accommodate the caregiving needs.
To explore the experiences and influence of stroke on families and on family functioning.
Explorative descriptive qualitative research design through the use of in-depth interviews were employed as the means of data collection. The sample size was eight (8) family members and was guided by the saturation point. Data was thematically analysed.
Four themes emerged from the analysis: 1) reduced interactions with family members due to communication barriers, 2) the influence of stroke on family relationships, 3) emotional engagement in caring for a family member with a stroke and 4) financial implications of stroke on family functioning. This study found that stroke can influence the family functioning negatively as family members may be forced to change their functional patterns. However, some family members reported positive experiences, they developed a supportive structure to accommodate the new life of the stroke survivor.
Using the McMaster’s model of family functioning, this study found that stroke is a threat to the six dimensions of family functioning: 1) problem-solving, 2) communication, 3) roles, 4) affective responsiveness, 5) affective involvement, and 6) behaviour control.
Stroke is a public health concern with a devastating impact on the individual’s health and well-being, especially in developing countries such as South Africa (Kumar, Kaur & Reddemma
Upon discharge, stroke survivors are often cared for by their families who ensure that the home environment is conducive enough to support the recovery process (Whitiana et al.
Family functioning – a central concept in this study – refers to the family’s day-to-day patterns that are practiced within the family context to enable favourable conditions for family members to thrive (Mousavi et al.
In seeking to determine appropriate measures to accommodate the new life of the stroke survivor, areas of family functioning, including financial well-being, may be strained (Ramos-Lima et al.
Another dimension of family functioning impacted by the incident of stroke is family relationships. Children and spouses often experience altered relationships with their parents and life partners. Parents who experienced a stroke may be limited to assume their parental responsibilities post-stroke (Harris & Prvu Bettger
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It is therefore apparent that stroke alters family relationships as the family progresses to establish a new lifestyle. In addition, stroke survivors often experience communication deficits that result in speech problems, such as aphasia, dysarthria or apraxia. Regarding stroke-related communication challenges, Wray and Clarke (
Up to one-third of survivors will experience communication difficulties post-stroke including aphasia, dysarthria or apraxia of speech 12–15 resulting in difficulties with language comprehension, speech production and difficulties with reading and writing.
Families of stroke survivors may thus find it difficult to maintain good communication, although not necessarily because of the disease itself, but because of the psychological impact and coping strategies, which affects how family members react towards each other (Guo & Liu
In light of the given discussion, family functioning is an important area that must be safeguarded post-stroke as the family plays a pivotal role in the stroke survivor’s recovery (Creasy et al.
To our knowledge, information that documents the family’s experience of stroke and the influence of stroke on family functioning is limited. Elloker and Rhoda (
The McMaster’s model of family functioning and the family systems theory is used to conceptualise the functioning of families with a stroke survivor within the six dimensions, namely (1) problem-solving, (2) communication, (3) roles, (4) affective responsiveness, (5) affective involvement and (6) behaviour control (Miller et al.
McMaster’s model of family functioning gives an overview of family functioning based on the aforementioned dimensions. In addition, the model gives a systematic overview of the family functioning. The proposed dimensions of the family functioning guided the development of the interviewing guide and the presentation of findings. An interviewing guide is attached in this article, see
An explorative and descriptive research design was used to explore the influence of stroke on family functioning. Such a design is mainly used to gather new information and to create meaning out of participants’ lived experiences (Blanche et al.
This study was conducted in a peri-urban community in Cape Town, South Africa. Despite the fall of apartheid in 1994, the conditions in many South African communities remain unaltered because of slow economic development. Rapid intervention is therefore needed to improve these dire conditions (Charman
Eligible participants included family members of stroke survivors who assisted them with ADLs. The inclusion criteria for participation required that participants had to (1) be a family member of a stroke survivor, (2) be residing in the peri-urban community under study and (3) have been providing care for at least 6 months, such as assisting them to assume ADL. Research found that the first 6 months of caring for a stroke survivor is considered the most crucial and challenging period, as the focus is on establishing the best possible care (Torregosa, Sada & Perez
Eight participants (P) (five female and three male), with a mean age of 48 years, took part in the study. The highest level of education was a diploma and lowest was Grade 7 (entry level to high school in South Africa). The participants were closely related to the stroke survivor and included children, siblings, spouses and parents. Two of the eight participants were employed on flexible contracts and six were unable to work because they had to care for the stroke survivors. Lastly, participants in this study were predominantly African people. They represent peri-urban population in the Western Cape.
An information session was conducted to explain the purpose of the study and to initiate contact with suitable participants. Data were collected through face-to-face individual interviews. Participants indicated that they would like to be interviewed in the comfort of their own homes and arrangements were made accordingly. All the interviews were audio-recorded, and field notes were taken after obtaining permission from the participants. Interviews were conducted in isiXhosa, participant’s home language and transcribed verbatim by an independent transcriber.
An inductive bottom-up approach of data analysis as proposed by Creswell and Plano Clark (
This study was ethically approved by Senate Higher Degrees Committee (reference number: HS17/10/20) of the University of the Western Cape. Furthermore, access to participants was granted by Helderberg Stroke Support Group (HSSG). Information sessions were conducted by the researchers to orientate the participants to the study, explain what would be expected of them and to assure them that privacy and confidentiality would be upheld. Participation in the study was voluntary, without any personal gain or remuneration. Participants were also free to withdraw from participation at any stage without fear of being penalised. In addition, participants were afforded an opportunity to clarify how they would like to be addressed during contact time with researchers in respect of their cultural terms. There was no potential harm detected in the planning and execution phase of this study. External counselling referral was secured prior to the execution of this study. Participants’ involvement was completely confidential and pseudonyms were used to protect their identities and no personal information was disclosed. All interview data were stored on a password-protected computer with the password known only to the researcher. Data will be disposed of in a suitable manner after 5 years as prescribed by the institution.
Qualitative research needs to ensure rigour and trustworthiness in the reporting of the study’s findings (Hadi & Closs
Four themes emerged from the analysis. Themes are as follow: (1) reduced interactions with family members because of communication barriers, (2) the influence of stroke on family relationships, (3) emotional engagement in caring for a family member with a stroke and (4) financial implications of stroke on family functioning. Each theme is discussed and supported with a verbatim quotation of the participant’s experiences. A discussion of the findings in the light of literature is presented.
A total of 80% of the participants reported that they struggle to communicate with the family member who experienced a stroke because of speech problems. As a result, some participants reported that because of communication barriers, stroke survivors would often withdraw from interacting with other family members:
‘My mother used to be a talkative person. However, after the stroke she tends to withdraw herself from interacting with people.’ (P1, female, 42 years old)
‘There is not much that we do now because she likes her space and does not engage much with me. This worries me sometimes because there are times when I miss talking to her or sharing something together.’ (P4, male, 48 years old)
When they cannot attain the goal of communication, some stroke survivors would become easily frustrated, especially when they are not understood. A common concern shared by the family members was the imbalance of emotions expressed by stroke survivors, such as being agitated and easily irritated.
‘Our big challenge with him is communication. He has a very short temper. I try to take my grandchildren away during weekends to visit my sister so they may not interact with him.’ (P2, female, 52 years old)
‘My son does not talk much; however, I can see that he is bothered about his mother’s condition.’ (P4, male, 48 years old)
This study found that family relationships transform post-stroke incident. Participants particularly described how stroke influenced the quality time and also affected relationships in different levels, these include relationships with children, spouses and with extended family members. Family quality time refers to the time family members spend together during mealtimes, watching a television programme, playing games as a family or engaging in any interactive activities. Participants mentioned that post-stroke, families no longer spent time together or enjoyed quality time as they did prior to the stroke.
‘We used to do many things together, such as watching television programmes that we all identified with; we also had games and we would cook Sunday “kos” after church.’ (P8, male, 51 years old)
‘[…
A total of 50% participants in this study were married to stroke survivors and had children with them. Participants alluded to the tension they observed between their children’s and partners’ relationship post-stroke:
‘His interaction with our children was reduced after the stroke. He became hard on them and they did not understand him. He got along with them more than I did before he had a stroke.’ (P5, female, 59 years old)
Furthermore, participants observed that parents become harsh to their children when they are not understood, straining the child–parent relationship. In addition, participants shared that in some instances stroke survivors felt inadequate as parents as they could no longer fulfil their parental responsibilities and roles as they did prior to the stroke incident. One participant reported the following:
‘She spent more time with children than me because I had two jobs. She was very active, and they played indoor games, such as cards, and now that she has stroke, she is no longer interacting with them the same way. She used to also monitor their school performances. As a result, our lastborn failed because Grade 12 because I cannot do everything in this house.’ (P8, male, 51 years old)
Spousal participants indicated that their relationships with their spouses changed post-stroke, reporting a decrease in intimacy and quality time spent together as married couples. As a result of the stroke impairments, some spouses expressed that their sexual lives completely changed post-stroke as their partners could not satisfy their sexual needs:
‘There is no intimacy or quality time that we spend as a married people… all I do is to take care of her.’ (P8, male, 51 years old)
‘Oh well, you know a man has needs. And those needs can only be fulfilled by their wives. So in my wife’s situation, I cannot expect her to meet my sexual needs.’ (P8, male, 51 years old)
In addition, some female spouses mentioned that their male spouses developed lack of self-confidence as a result of not being able to fulfil some roles. The latter had a negative influence of the marital relationships:
‘I also think he sees himself as useless because he used to work but now he is unable to do so. And that affects his emotions because he is always sad.’ (P5, female, 59 years old)
Some participants mentioned that family members not residing with the stroke survivor do not visit as frequently as they used to. Therefore, the influence of stroke on family relationships differs. Findings indicated that some family members distanced themselves from the stroke survivor, while others were more supportive and concerned about the stroke survivor and how the immediate family members were coping. However, the reasons for participants’ observations were unclear:
‘His relationship with his family has changed a lot. Some are not visiting us; some would seldom call to check his condition. His parents passed away and I rely on my mother and my daughter.’ (P6, female, 44 years old)
Moreover, another factor that affected relationships was the misconception of the cause of stroke. A spouse of a stroke survivor revealed that she was called names and blamed for the occurrence of the stroke by extended family members. This confirms that some family members do not perceive the stroke as a medical condition. Such perceptions display lack of knowledge about the occurrence of stroke:
‘[…
However, some participants observed that their family’s relationships and attitudes towards the stroke survivor remained the same as it was before the stroke. Some participants mentioned that their families developed a supporting net and supported the family member who experienced a stroke:
‘As a family, we supported him and made him feel he is still part of us despite his condition.’ (P2, female, 52 years old)
‘Now my husband has received so much support and my siblings are treating him the same way that they treated him prior to the stroke….’ (P6, female, 44 years old)
Some participants expressed that the stroke incident brought them closer to their partners as they spent more time together than prior to stroke. In this regard, they shared the following experiences:
‘I became close to my wife and very much attentive to the things that must be done as I did before stroke.’ (P4, male, 48 years old)
‘[…
Preparing and adjusting the family environment are among other physical measures that may be taken by families to suit the condition of the stroke survivor. This study found that emotional engagement is another aspect that is influenced by stroke. Participants reiterated how emotionally exhausting it is for them care for their family member who experienced a stroke:
‘It gets really difficult at times and I tend to feel very emotionally drained….’ (P5, female, 59 years old)
‘It gets very painful sometimes. I thought that as a parent I would be resting now and that he would be the one taking care of me, not the other way around.’ (P2, female, 52 years old)
Moreover, all the participants expressed that caring for the person with a stroke resulted in psychological trauma because of the constant fear of the unknown. Their fears were mostly related to the sudden or unexpected loss of their family member to stroke. In this regard, a participant shared the following sentiment:
‘I have my days where I worry about what will happen if she were to pass on. I try to be strong for her but sometimes I cannot hold it to myself.’ (P4, male, 48 years old)
The majority of participants echoed their inability to maintain financial stability post-stroke. Some participants expressed that they had to resign or quit their jobs as there was no one else to care for the stroke survivor:
‘I used to work but now I have to stop and to take care of him. We also have a small business where I sell sweets, chips and small things but it is difficult to run that because when he is not feeling well I must close and take him to the clinic or get an ambulance to take him to the hospital.’ (P3, female, 52 years old)
Small families, especially those consisting of both parents and children, experienced financial setbacks and difficulties because of enforced caregiving responsibilities:
‘I am the only person working here. I have to pay for everything, and we need to have money that is available because sometimes she gets sick and I must be able to pay for transport costs because ambulances take time when we phone them. I have to spend more money on fresh vegetables because she likes them. My son accepted that he cannot have everything he wants because his mother is not well.’ (P7, male, 37 years old)
Participants also shared that during emergencies they had to hire transport as government ambulances would sometimes be delayed in arriving. This compounded their financial burdens. Accordingly, they also struggled to afford a balanced diet for the family member with a stroke, which is essential for a successful recovery:
‘My family does not afford the correct food for her because I am the only one who has a job and I have to pay for other expenses. My son just finished school and I do not have money to pay him to continue his studies. That is how bad our finances are….’ (P4, male, 48 years old)
However, some families established income-generating strategies that included running small businesses, which they found challenging to operate because of their circumstances:
‘[…
Factors that resulted in financial difficulties included time devoted to caregiving demands and exhaustion and burnout thereafter.
The discussion of this article is presented in context of the McMaster’s modules of family functioning. McMaster’s modules propose six dimensions: problem-solving, communication, roles, affective responsiveness, affective involvement and behaviour control as described by Miller et al. (
Based on McMaster’s model of family functioning,
Child–parent relationship is another aspect associated with
In addition, corresponding with a study by Bucki, Spitz and Baumann (
This study also found that because of the sudden occurrence of stroke, some family members developed misconceptions about the cause of the stroke resulting in conflict. This highlighted another aspect of family functioning associated with
It was further established that the burden of stroke does not only affect children and spouses but the whole family system is impacted. The research promulgates that relationships within the family system may be affected in one of two ways. On the one hand, the caregiving responsibilities may place a lot of strain on family relationships as family members put their lives on hold to assume new caregiving responsibilities. In accordance with McMaster’s model, this is linked with
These authors assert that the latter creates a positive environment that facilitates the recovery process (Mohammadi et al.
Findings discussed in this study described the experiences of families of stroke survivors from a low socio-economic background. Such experiences may differ in other contexts or with other individuals from backgrounds with a different socio-economic status. In addition, having a diverse study sample might have represented a varied demographic South African profile. In addition, the sample size of this study may also be a limitation. Therefore, the influence of stroke on family functioning can be contextually interpreted.
The focus of this article was on family functioning after a family member has experienced a stroke. The perspectives of family members revealed that stroke becomes a burden to the family and has a significant impact on their daily functioning. To deal with their new reality, families had to implement changes and adopt new functional approaches to accommodate their family member who experienced a stroke. It was established that stroke negatively impacts six dimensions of family functioning. These are: (1) problem-solving, (2) communication, (3) roles, (4) affective responsiveness, (5) affective involvement and (6) behaviour control. Despite negative reports, some participants indicated spending more time together as a family post-stroke and explored ways of integrating the stroke survivor in their family processes. Misunderstandings regarding stroke also surfaced, creating disorder within some families as immediate and extended family members tried to find closure. Another aspect that affects the functioning of stroke survivors and their families includes limited financial and essential resources not only for the stroke survivors but also for other family members that are affected. This highlights the importance of research to not only examine the impact of stroke on family members who experienced a stroke and those who assume caregiving roles but to also consider the perceptions and experiences of immediate and extended family members as well. This will shed much needed light on the neglected research area of the nature and influence of stroke on family members.
Through this study, it became clear that there is a dearth of studies that have specifically assessed the areas of family functioning impacted by stroke. Recommendations derived from the findings of this study include financial relief of stroke survivors and their families. It was also evident that families of stroke survivors have limited knowledge about stroke. This is an area that requires attention as it can assist families of stroke survivors to understand stroke better. Lastly, research that considers the influence of stroke on the broader family is needed to plan appropriate interventions to assist families of stroke survivors to establish and maintain a conducive family environment during the process of caring for the stroke survivors.
We would like to extend our humble gratitude to the research participants for taking part in this research. We appreciate your shared experiences and honestly. Their efforts do not go unnoticed.
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Family functioning and stroke originates from A.J.R., the research interest. This research study was led by S.G. Data collection, analysis and discussion of the findings were conducted by S.G.
C.J.E. and A.J.R. provided critical reading and made suggestions, comments and correction throughout this project. Lastly, C.J.E. and A.J.R. was responsible for editing, aligning the content and ensuring that this paper makes a valuable academic contribution to the existing knowledge.
This study was funded by the National Research Fund (NRF) South Africa.
Data sharing is not applicable to this article as no new data were created or analysed in this study.
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the author.
Can you please tell me about the activities that the survivor used to do pre-stroke?
What was the initial role of the survivor within the family?
What are other limitations that your partner is experiencing as a result of stroke?
Do you think your partner would ever be able to fulfil some of the roles he or she used to assume?
How has that impacted on your family functioning?
Are there any adjustments that the family has made as to adjust to stroke within the family?
Are there health-related challenges that have been brought about by stroke in the survivor’s life?
How would you describe the health status of the stroke survivor after the stroke?
How is the survivor affected by stroke?
If there are physical and mental implications of stroke for the survivor’s life, what do you do then as a caregiver to ensure a stable sense of well-being for the survivor?
As part of ensuring the survivor’s good health state, what would you say works and does not work?
Would you say that the identity of the survivor has been impacted by the incident of stroke?
Would you say that the survivor’s self-concept is affected by stroke?
Let us talk about the impact of stroke on family relationships, tell me about the relationships the survivor has and had before stroke with family members
Do you think that stroke has impacted on relationships within the family?
As a family have you managed to preserve the nature of relationships within your family?
What are your family members doing to ensure that the stroke survivor is integrated within the family processes?
Tell me about the attitudes of your family members towards the survivor as a person living with stroke
Do you notice any change in the relationships that the survivor has with other family members?
Besides the people living with the stroke survivor, how involved are other family members in the life of the survivor?
Is there something that you would like to share that I did not ask on the impact of stroke on familial relationships?
Can you please reflect on the nature of the relationship you had with the stroke survivor prior to the stroke event?
Has that relationship changed in some way because of the event of stroke?
Do you think that your marital relationship is still healthy?
Can you briefly comment on the resilience that your marital relationship has displayed during after stroke?
Are there aspects of your relationship that has been affected by the incident of stroke?
Stroke is a traumatic medical incident. Are there some things in particular that you and your family members do to deal with it?
Who would you say is mostly implicated by stroke in your family?
How do you think the lives of those implicated by stroke have changed?
Are there things that the individuals or you are doing to ensure that they cope with stroke?
Were there social activities that the survivor was involved in before stroke?
Is the survivor still active or involved in any of these social activities?
If not, do you think that impacts or influences how the stroke survivor views themselves in any form?
Would you now say after 6 months the survivor has recovered and is showing interest on being involved socially?
What is the attitude of community members towards the survivor?
Finally, do you think being active or involved in social activities would or has a positive impact on the recovering process of the survivor?
Family functioning refers to how the family operates and support each other. How would you say your family functioning is influenced by stroke?
What adjustments did the family have to make to cope with the experiences of having to live with a person that had a stroke?
Are the family finances the only aspect that is influenced by stroke?
Were there activities that you used to do as a family? If so, are those still done now that there is an individual that has a stroke?
Let us talk about decision making processes. How does the family manage such processes now that there has been stroke?
I know that everyone experiences stroke differently. How would you describe the experience of other family members?
What areas of functionality in your family are most influenced or impacted by stroke?
What has your family done to deal with some of the unexpected changes that may have been brought about by the event of stroke?
Demographic information of the participants
Participant number | Gender | Caregiver’s age | Survivor’s age | Education level of carer | Employment status | Relationship to survivor | Size of family |
---|---|---|---|---|---|---|---|
1 | Female | 42 | 84 | Diploma | Employed | Child | 4 |
2 | Female | 52 | 33 | Grade 7 | Unemployed | Mother | 12 |
3 | Female | 52 | 49 | Grade 12 | Unemployed | Sister | 4 |
4 | Male | 48 | 42 | Grade 12 | Employed | Spouse | 3 |
5 | Female | 59 | 60 | Grade 12 | Unemployed | Spouse | 5 |
6 | Female | 44 | 52 | Grade 12 | Unemployed | Spouse | 3 |
7 | Male | 37 | 43 | Grade 10 | Unemployed | Spouse | 3 |
8 | Male | 51 | 46 | Grade 8 | Unemployed | Spouse | 7 |