Stroke is a catastrophic event for survivors and their families because significant numbers of stroke survivors experience biophysical and psychosocial limitations after they return to home (Oswald 2008, p.241). Stroke is a common disabling disease that requires the involvement of family caregivers’ for patients’ successful rehabilitation (Lui & Thompson 2005, p. 2514). After a stroke most people return to their home environment quickly despite suffering from various impairments and disabilities; most often without having received any care and rehabilitation services to reduce or compensate these dysfunctions (Vincent et al 2007, p. 21). Timely access to appropriate rehabilitation services for stroke survivors is needed to optimize recovery and reduce the long-term burden of stroke for patients, families and communities (Dawson et al, 2008, 174).
Family caregivers play a key role in the rehabilitative care for stroke survivors, who require prolonged periods of recovery outside structured health care settings. Providing care to stroke survivors in home settings is an increasingly common experience (McCann & Christiansen, 1996 ,p.914). However, family caregivers are usually faced with lack of health care education and they need assistance in learning how to manage to help the survivors in activities of daily living (ADL) and other aspects of physical care. Instrumental support, including social support, help with transportation, and financial support or compensation are also commonly requested by caregivers (Grant et al.2006, p.67).
In general, care giving responsibilities follow a hierarchical order with spouses being preferred most often, followed by adult children, other relatives, and finally friends and neighbours (Moore et al. 2002, p.291). In Iran the situation is the same, the stroke survivors are usually referred to public or private care centres and to their own homes after discharge from hospital. This may result in many difficulties and long-term problems for stroke survivors and their family caregivers (Dalvandi et al, 2010). In Iran, there seems to be a lack of supportive systems in home care services as well as in knowledge and skills among family caregivers can be assumed to lead suffering from complications and probably even from less effective recovery processes for both patients and their families (Alaei, 2008,p. 7). Therefore, we need to explore the experiences of Iranian stroke survivors’ family caregivers about the providing rehabilitative care in order to identify aspects that should be considered in developing delivery rehabilitation care for both patients and their families..
Aim and research questions
The aim of this study was to explore the experiences of family caregivers about the providing rehabilitative care for stroke survivors at home.
The following questions were raised:
How do Iranian family caregivers experience the provision of rehabilitative care at home after stroke?
How should the rehabilitative care for stroke survivor’s assistance be provided and organized?
The constant comparative method (CCM) was used in this study. The constant comparative method of analyzing qualitative data combines inductive category, coding with a simultaneous composition of all units of meaning obtained (Glaser & Strauss,1967). According to Boeije (2002) the constant comparative method together with theoretical sampling constitute the core of qualitative analysis in the grounded theory approach developed by Glaser and Strauss, 1967; Strauss, 1987; Glaser 1992.(p.391-394) .The constant comparative method, which can be seen as the ”core category” of grounded theory, includes that every part of data, i.e. emerging codes, categories, properties, and dimensions as well as different parts of the data, are constantly compared with all other parts of the data to explore variations, similarities and differences in data. The constant comparative method of grounded theory is strict enough to be helpful to the researcher in exploring the content and meaning in the data, but not saddled with so many strict rules to be too rigid for a grounded theory researcher (Hallberg, 2006, P.141-145).
According to Strauss and Corbin (1998) the art of comparison has to do with creative processes and with the interplay between data and researcher when gathering and analysing data. The cycle of comparison and reflection on “old” and “new” material can be repeated several times, it is only when new cases do not bring any new information to light that categories can described as saturated (Boeije ,2002,p. 391-394).
Twelve family caregivers participated in the study .The characteristics are shown in Table 1:
Insert Table 1.
The inclusion criteria for selecting family caregivers was: those family members who had the main responsibility to take care for stroke survivors in stroke survivors’ homes, such as offspring, spouses or other relatives, willingness to participate in this study, being able to communicate in Farsi and reside in an urban area in Tehran.
The first author (AD) referred to hospitals and rehabilitation clinics formally and asked for permission to undertake the study. After the permission, he read more than 400 stroke survivors’ documents and then selected 35 case documents based on inclusion criteria. Then researcher contacted participants by telephone with the permission of university’s authorities. They were informed about the aims of the study and their rights as participants, and were asked to participate in the study. Finally twelve family caregivers agreed to participate in the study.
Data were collected through open-ended interviews and observational field notes. The open-ended interviews started with a general question: As a family caregiver, how do you experience providing rehabilitation care of a survivor after stroke at home? Then, step by step the interview continued to more specific and directed questions. Probing was performed according to the reflections offered by each respondent but sought to cover themes such as their experiences of the post-stroke life and the role of family caregivers in this situation. Interviews lasted between 45 to 60 minutes. The venues of the interviews were chosen by the participants at the survivor’s homes and it took from February 2007 to June 2007. In two cases, a second interview was conducted after some ambiguities had aroused during the first.
During interview main researcher have been observed and considered all situations regarding the participants and focus on what participants said about doing one thing but in reality they are doing something else.
All interviews were tape-recorded, transcribed verbatim, and analyzed word by word and then approved by some participants, together with the observational field notes.
Following Corbin & Strauss’ (2008, p.160-167) instructions, data collection and data analysis took place simultaneously by using the process of constant comparative analysis method. Every interview was analyzed directly after the interview in order to identify ideas, which guided the next interview. During the phase of open coding, the researchers thoroughly read all interviews several times word by word and selected incidents, facts, key words or phrases in the text as in vivo codes (codes which directly came from interview with participants, not from other sources). In this phase, 482 primary codes were extracted. Open coding requires a brainstorming approach to analysis because, in the beginning, analyst wants to open up the data to all potentialities and possibilities contained within them (Corbin & Strauss, 2008, p.160).
Whereas open coding fractures the data into concepts and categories, axial coding puts those data back together in new ways by making connections between categories and subcategories. Thus axial coding refers to the process of developing main categories and their sub-categories.
Then, the codes were compared to contents in order to find points of similarities and differences as base for those categories and sub-categories that were developed. These codes outlined properties and dimensions of each category and subcategory. This process resulted in eight conceptual categories. After axial coding at the end of the process, in selective coding phase, the core variable was identified. “lack of continuity in rehabilitative care”, which was clearly observed in all data, was identified as a core variable.
Selective coding involves the integration of the categories that have been developed to form the initial theoretical framework (Corbin &Strauss 2008, 163).
The conformability and credibility of the data were established in 3 main ways: First, the participants were contacted after the analysis and were given a full transcript of their coded interviews with a summary of the emergent themes to determine whether the codes and themes were true to their point of view (member check). Four participants chose to validate their transcripts and a few minor comments regarding spelling were made.
As a further validity check, faculty members checked about half of all transcripts (peer check) when researcher presented the aim process and summary of data gathering. Finally, all the authors checked an English version of the coding and the coherence of the categories .The researcher documented the steps followed in the research and the decisions made to save the audit ability for other researchers to perform the steps of the research in future studies.
This study has been approved by Iranian National ethical committee in the Ministry of Health & Medical Education (P/361-31/JUL/2005). All participants have received information about the aim of the study and what is expected from them as study participants. They also were informed that the participation is voluntary and they have the right to terminate their participation any time they want, without giving a reason, and their right to confidentiality. They also were informed that their continued care or rehabilitation was not dependent by their decision to participate or not. The researcher used all his attempts to make the participants comfortable to tell about their experiences and needs freely, and tried to note any non verbal signs of wishes for going out from the study, all participants signed the written informed consent paper after reading it carfully.
When participants needed to have counselling in their homes, researcher coordinated by experts rehabilitation and some time researcher referred them to Neuro-rehabilitation clinic and also with hospitals to follow his/her problems clinically or in-patiently.
The participants ranged in age from 20 to 68 years. Seven main categories were identified within the analysis process: family integrity, modifying home’s environment, managing co-morbidities, accessibility of rehabilitative services, expanding nurses’ roles, utilizing social insurance, and acquiring knowledge and skills.
Family integrity conceptualized the way the participants continued their attempts to maintain family structure and function despite of the complications caused by the stroke. Modifying home’s environment experienced as to facilitate the stroke survivors to live at home conveniently, and managing co- morbidities perceived as essential to prevent recurrent of strokes by controlling other symptom and diseases. Accessibility to rehabilitative services experienced as inappropriate and misdistribution of these services. Expanding nurses’ roles means that nurses roles should be developed as coordinator in rehabilitation teams to decrease biophysical and psychosocial limitations. Utilizing social insurance wished for as the main rehabilitation supportive service, acquiring knowledge and skills perceived as the basic needs for facing with the stroke event and help caregivers to accept the reality of their own situation.
Conceptual relationship statements
Researcher inferred that the lack continuity of rehabilitation care at survivors’ homes is the main variable concepts on the advancement of the providing of survivors’ rehabilitation because family caregivers experience accessing to services and covering rehabilitation services by social insurances could provide continually for leading, helping and supporting survivors to be independent sooner. In this way they perceived that special educational programs and skills are needed to be well-adapted with new situations. It causes the pressure on family members would be made less.
As the part of Iranian cultural values, Islamic religious believes, preserving, unity ,maintain family structure and emotional feeling during event are the essential strategies which families adapt with .In this case family caregivers have been involved to continue providing rehabilitation care and changing home environment to facilitate better situation for survivors in their homes.
Lack of continuity of rehabilitation care services cause overload working by family care givers such as survivors; lifting, transferring, feeding and caring because fatigue, frustrations and loss of energy. Therefore assisting by lay care givers could help them a lot especially during the first few months in this process.
Lack of knowledge and skills regarding survivors’ care made them to be agitated and later on disappointed. They believed that the nurse’s roles are as important as the family care givers on the recovery of these patients regarding education and skills, introducing recourse, emotional support and medicine recommendations, timely teaching of patients and caregivers, and assessment and information exchange regarding patient progress and care needs. Lack of access to these services could delay survivors’ recovery.
Continuity of care specifically relates to the nurses’ continued presence with the patients and involved coordination of the multi professional team’s diverse efforts. Nurses, interacting with patients and relatives frequently throughout the day in many diverse situations, are in a unique position to facilitate the interpretive work that stroke survivors and their families go through and which is a prerequisite for moving ahead in the adjustment and rehabilitation processes following a stroke.
Family caregivers experienced that maintaining integrity, morale and durability were important to maintain family structure and their roles despite of the complications caused by the stroke. Family caregivers were also forced to look for new ways to compromise with this real event, as the part of their Iranian cultural values, Islamic religious believes, unity and emotional feeling that were the essential strategies which families had adapted.
“Whereas in Iran, family structure is so important for its members, therefore religious and emotional behaviors help us to stand, It should be continue by culture and empowered ‘(Family caregiver 2),
Modifying home environment
Participants perceived that after the unpredictable event of stroke, their home environment needed to be changed, depending on survivors’ condition. The changes aimed at helping both the survivors and the family caregivers to play their roles better and live an active life by participating in the family life, whatever is available at home.
“We have to change the home environment to help survivors by using devices such as grab bars in bathroom, a raised toilet seat and a long-handled brush, and also electric toothbrush and an electric razor. (Family caregiver 9).
Managing co- morbidities
Participant perceived that managing other symptoms like body pain, and diseases such as diabetes and cardiovascular disorders, as well as hypercholesterolemia and obesity
were important to prevent recurrent period and prevent progressive diseases.
“I have tried to manage other disease such blood pressure, diabetes and cardiovascular disorders with helping Doctors and nurses as well the control of dietaries and drugs management ,besides of stroke and its complications (family caregiver 6).
Accessibility to rehabilitative services
There are only a few special rehabilitation centres for stroke survivors in Iran and usually the stroke patients are referred to public or private caring centres and to their own homes, because these clinics are very far from their homes. These services were regarded to be expensive and not easy to access from home and community, therefore stroke survivors and their family caregivers suffered of not receiving rehabilitation services.
“My family has lost their energy and in times, we are so tired and agitated If somebody comes to our home for caring and helping us it would be fantastic” (Family caregiver5).
I really need to get some facilities in my place, close to my home, suitable for our incomes; going far from my home is very expensive to access and so difficult for me and my family as well to bring services in our home (Family caregiver 11) .
Expanding nurses’ roles
Most participants experienced that nurses have a multidimensional role in rehabilitative care and they can act as team coordinators and educators for patients and their families. They were also regarded to be able to promote healthy lifestyle, advocate available recourses, nutrition, and medication, rehabilitative care recommendations to survivors and family caregivers, as well as prevention of stroke relapse.
“Nurses have a sense of advocacy and morale besides the care delivering, this is a fact, and I do emphasis that the role of nurses for patients is vital and important”.”(Family caregiver 3)
Utilizing social insurance
Participants regarded their friends or family members as the source of encouragement to seek social support. They experienced that social support from relatives, community and close personal relationship each has a beneficial effect in stroke patients’ life. The social support from them gave a sense of self-confidence and self-sufficiency in stroke survivors.
Family caregivers expressed also that lack of assistant to care and insufficient social insurances for covering and receiving services from therapists caused the families a burden. The provision of social support was regarded to help the survivors to be enforced regarding the sense of belonging to others and also to friendship.
“During these times my family network visited and encouraged us to be happy and satisfied, I am so grateful to them because they come at my home to give a lift again.”(Family caregiver 4).
” The cost of care and treatment that are extra in our life , if we had more support in advance, it would be more helpful and could be more effective.”(Family caregiver 10).
Acquiring knowledge and skills
Family caregivers experienced lack of knowledge and skills to provide care for the survivors and deal with new situation; they perceived the need for information and education at their homes regarding transferring, lifting, feeding, drug taking and how to care
“I faced with lack of information and skills related to the event, the provision of supportive education is necessary for stroke survivors and their family caregivers from hospital to home , I don’t know what to do” (Family caregiver 12)
The first author (AD) faced with some limitations in this study, such as cultural barriers to be accepted into the participants’ houses. The study shows that the need of continuity of care and rehabilitation services is pivotal for promotion of ADL and the health situation of stroke survivors and their family caregivers, after discharge from hospital. Depending on survivor’s situation, communication between family caregivers and rehabilitative care providers could be coordinated to improving rehabilitative care issue in order to achieve self-care and self-management. Even the social support from relatives was a strategy which was used and recommended by the family caregivers of stroke survivors. Thus, the delivery of continuous support and rehabilitative care is needed to reduce burden of care giving.
Lack of continuity of rehabilitation was extracted as core concepts among data and concepts and related categories because family care givers have been following the process of receiving rehabilitation services for reducing physical disturbances; socio psychological limitation and help survivors to be self -independence ,they believed social insurance could involve these services at the survivors’ homes ,provide the transportations to rehabilitation centers and support nursing care and lay care givers for preventing of family burden.
They experience that lack of these kinds of supports resulting in: cause less integrity and enduring among family members despite of their efforts and to incomplete rehabilitation services for stroke survivors.
Family caregivers need many skills and have many difficulties associated with the involvement and tasks of care giving (Bakas et al 2004,p.243). Establishing comprehensive intervention programs in order to address the unique needs of individual family caregivers is emerging as a critical focus for research, as well as an important topic for policymakers, both in Iran and other countries. Han & Haley (1999,p. 1479) also mean that stroke survivors have, besides of stroke and its complications, other diseases, such as diabetes, blood pressure, cardiovascular disorders, and even these needs to be taken into consideration in dietaries and drugs management.
Our study participants expressed the need of education programs. Bakas et al’s study (2004,p.245) show that family caregivers have concerns about managing the symptoms and deficits of the stroke survivor. Lui & Thompson 2005,p. 2515) indicate that teaching family caregivers to cope with these problems and to relieve their stress is essential. There is also some evidence that caregivers’ well-being affects even the health and recovery of stroke patients (ibid.). Our study findings show the same in Iranian context.
Our study shows also that the home environments need to be modified, as the modifications can help the family caregiver to play their roles better and to have active daily lives. Vanhook (2009) found that that the quality and quantity modification in home environments depends on survivors’ condition although there is minimal consideration of the psychological, social, environmental needs during and after rehabilitation: when the survivor returns home, the environment is a foreign one (Vanhook, 2009 ,p.7).
The participants in our study considered that there is need to expand the roles of nurses in rehabilitative care. As Steiner (2007) claims, nurses have a holistic approach through coordinating and integrating with other team members to deliver rehabilitation services for survivors and help caregivers to manage the situation. Besides, nurses are often the first to interact with the stroke patient in both acute care and intensive rehabilitation. Using evidence-based knowledge, the nurse has the responsibility to expand the nursing history to include such factors as previous cognitive state, previous perceptions of health status, present role within the family dynamic, previous self-concept, cultural influences, and relationships both personal and social. In our multicultural society, it is also imperative that we recognize and develop an understanding of the power of ethnicity as it relates to individuals’ health perception, thus affecting the recovery process. Steiner (2007,p.48-54)
The participants in our study experienced that providing information’s and appropriate education in responding to their needs, were the most important and valuable things which improve efficacy of these services.
Family caregivers perceived that covering of rehabilitative services by social insurances agencies can help survivors and their family caregivers to get better rehabilitation facilities and improve functional performances. The social insurances
can also reduce stress in the survivors’ situation by providing lay caregivers for helping family members..
Previous studies have examined the effect of different types of social support on functional recovery after stroke (Friedland & McColl 1992, p.575), similarly to our study showed that social support from family, community and from close personal relationships each has a beneficial effect in stroke patients. As Shah (2006,p. 472) and Weimar et al. (2002,p. 2055) claim, the post stroke family support, financial status, and community resources should be evaluated to optimize successful return to the community.
This study confirms the results of Oswald et al (2008,p.245) who found that stroke is expected to continue to be a major concern for survivors, their families and health and social care providers because stroke continues to affect the survivors’ and their family members life situation a long time. Besides, most stroke survivors live in the community and are assisted by family caregivers, especially by spouses. Stroke-related impairments and post stroke depression interfere with recovery and result in impaired relationships and reduced life satisfaction for the survivors and their spouses.By increasing the patient’s participation in rehabilitation, their ability to solve problems in ADL and to transfer knowledge to new situations we hope that patients and relatives satisfaction in daily life will increase.
The study illustrates that the family caregivers are stricken of the stroke because the providing care for stroke survivor in order to rehabilitate the survivor major engagement is needed from the family caregivers. Enhanced discharge planning and nurses follow-up with collaboration of stroke survivor’s families should be considered as essential in maintaining the well-being of the family caregivers and bridging the gap between the hospital and the community , reducing family burden ,receiving high quality of rehabilitative care and make decisions regarding their own life and care.
Relevance to clinical practice
There is a need to develop family caregivers’ abilities to provide care that is more suitable to survivors’ needs. Both educational practice and financial support should be provided to the stroke survivors and their family caregivers in order to enhance better coping in the difficult life situation. Social and emotional support should also be provided to minimize the family members’ burden and help them managing the consequences of stroke.
Therefore, the Iranian Government should improve the social and financial support and order a social insurance for stroke survivors and their family caregivers both by public and private social insurance agencies. There is also a need for organizing and extending rehabilitation services in health programs for reducing physical dysfunction, thus helping the patients and their family caregivers to apply better role performances and encourage independency in activities of daily living.
Further, a rehabilitation team should plan and focus on functional disturbance and social support. There is also a need to write a stroke rehabilitation protocol that coordinates team work. In this work, nurses’ experiences are highly needed.
This study is funded by deputy of research at University of Social Welfare and Rehabilitation Sciences.
Conflicts of Interest:
The first researchers have no conflicts of interest regarding financial support and official affairs in this study.