Posted at 12.17.2018
Stroke is a catastrophic event for survivors and their families because significant numbers of heart stroke survivors experience biophysical and psychosocial limits after they return to home (Oswald 2008, p. 241). Heart stroke is a common disabling disease that will require the participation of family caregivers' for patients' successful treatment (Lui & Thompson 2005, p. 2514). After a heart stroke most people return to their house environment quickly despite experiencing various impairments and disabilities; frequently without having received any health care and treatment services to lessen or compensate these dysfunctions (Vincent et al 2007, p. 21). Timely access to appropriate rehabilitation services for heart stroke survivors is required to optimize restoration and reduce the long-term burden of stroke for patients, households and areas (Dawson et al, 2008, 174).
Family caregivers play an integral role in the rehabilitative care for heart stroke survivors, who require long term periods of restoration outside structured healthcare settings. Providing health care to stroke survivors in home configurations is an increasingly common experience (McCann & Christiansen, 1996, p. 914). However, family caregivers are usually faced with lack of health care education plus they need assistance in learning how to manage to help the survivors in activities of daily living (ADL) and other aspects of physical health care. Instrumental support, including cultural support, benefit travelling, and financial support or reimbursement are also commonly wanted by caregivers (Grant et al. 2006, p. 67).
In general, good care giving responsibilities follow a hierarchical order with spouses being preferred frequently, followed by mature children, other relatives, and finally friends and neighbours (Moore et al. 2002, p. 291). In Iran the problem is the same, the stroke survivors are usually described general population or private health care centres and their own homes after discharge from hospital. This may result in many challenges and long-term problems for heart stroke survivors and their family caregivers (Dalvandi et al, 2010). In Iran, there seems to be too little supportive systems in home good 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 techniques for both patients and their own families (Alaei, 2008, p. 7). Therefore, we have to explore the experiences of Iranian heart stroke survivors' family caregivers about the providing rehabilitative attention in order to identify aspects that should be considered in developing delivery rehabilitation look after both patients and their own families. .
The aim of this research was to explore the experience of family caregivers about the providing rehabilitative look after heart stroke survivors at home.
The following questions were increased:
How do Iranian family caregivers experience the provision of rehabilitative health care at home after heart stroke?
How should the rehabilitative look after stroke survivor's assistance be provided and prepared?
The constant comparative method (CCM) was found in this review. The continuous comparative method of inspecting qualitative data combines inductive category, coding with a simultaneous structure of all models of interpretation obtained (Glaser & Strauss, 1967). Corresponding to Boeije (2002) the continuous comparative method together with theoretical sampling constitute the core of qualitative evaluation in the grounded theory methodology produced by Glaser and Strauss, 1967; Strauss, 1987; Glaser 1992. (p. 391-394). The continuous comparative method, which is often seen as the ''primary category'' of grounded theory, includes that every part of data, i. e. rising codes, categories, properties, and proportions as well as different parts of the info, are constantly compared with all other elements of the data to explore variants, similarities and distinctions in data. The regular comparative method of grounded theory is stringent enough to be helpful to the researcher in discovering the content and interpretation in the info, but not saddled with so many tight rules to be too rigid for a grounded theory researcher (Hallberg, 2006, P. 141-145).
According to Strauss and Corbin (1998) the fine art of comparison is due to creative techniques 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 many times, it is merely when new circumstances do not bring any new information to light that categories can referred to as saturated (Boeije, 2002, p. 391-394).
Twelve family caregivers participated in the analysis. The characteristics are shown in Desk 1:
Insert Stand 1.
The inclusion conditions for selecting family caregivers was: those family members who had the main responsibility to take care for heart stroke survivors in stroke survivors' homes, such as offspring, spouses or other family, willingness to participate in this study, having the ability to converse in Farsi and have a home in an urban area in Tehran.
The first creator (AD) described hospitals and treatment clinics formally and asked for permission to undertake the study. After the permission, he read more than 400 stroke survivors' documents and then determined 35 circumstance documents based on inclusion criteria. Then researcher approached participants by telephone with the permission of university's authorities. They were up to date about the seeks of the analysis and their privileges as individuals, and were asked to participate in the study. Finally twelve family caregivers agreed to participate in the study.
Data were gathered through open-ended interviews and observational field records. The open-ended interviews started with an over-all question: As a family group caregiver, how do you experience providing rehabilitation care and attention of a survivor after stroke at home? Then, step-by-step the interview persisted to more specific and directed questions. Probing was performed in line with the reflections provided by each respondent but looked for to cover themes or templates such as their experiences of the post-stroke life and the role of family caregivers in this example. Interviews lasted between 45 to 60 minutes. The locations of the interviews were chosen by the members at the survivor's homes and it had taken from February 2007 to June 2007. In two conditions, another interview was conducted after some ambiguities had aroused through the first.
During interview main researcher have been detected and considered all situations about the participants and focus on what members said about doing one thing but in actuality they may be doing something else.
All interviews were tape-recorded, transcribed verbatim, and analyzed word by phrase and then approved by some participants, together with the observational field records.
Following Corbin & Strauss' (2008, p. 160-167) instructions, data collection and data analysis took place concurrently utilizing the process of continuous comparative evaluation method. Every interview was examined directly after the interview to be able to identify ideas, which led the next interview. Through the phase of available coding, the experts completely read all interviews several times word by expression and selected happenings, facts, key words or phrases in the written text just as vivo codes (codes which directly came from interview with individuals, not from other sources). On this phase, 482 key codes were extracted. Open coding requires a brainstorming approach to analysis because, initially, analyst wants to open up the data to all potentialities and choices included within them (Corbin & Strauss, 2008, p. 160).
Whereas wide open coding fractures the data into principles and categories, axial coding sets those data back again jointly in new ways by making associations between categories and subcategories. Thus axial coding identifies the procedure of developing main categories and their sub-categories.
Then, the rules were compared to contents and discover factors of similarities and differences as foundation for those categories and sub-categories which were developed. These rules defined properties and measurements of every category and subcategory. This process led to eight conceptual categories. After axial coding at the end of the process, in selective coding phase, the primary variable was revealed. "lack of continuity in rehabilitative health care", which was clearly observed in all data, was identified as a key variable.
Selective coding entails the integration of the categories that have been developed to form the initial theoretical construction (Corbin &Strauss 2008, 163).
The conformability and reliability of the info were set up in 3 main ways: First, the individuals were contacted after the analysis and were given a full transcript of their coded interviews with a listing of the emergent themes to determine if the codes and designs were true to their point of view (member check). Four individuals chose to validate their transcripts and a few minor responses regarding spelling were made.
As an additional validity check, faculty users checked about half of most transcripts (peer check) when researcher presented desire to process and overview of data gathering. Finally, all the writers checked an British version of the coding and the coherence of the categories. The researcher documented the steps adopted in the research and the decisions made to save the audit ability for other experts to execute the steps of the research in future studies.
This study has been approved by Iranian Country wide moral committee in the Ministry of Health & Medical Education (P/361-31/JUL/2005). All participants have obtained information about the aim of the analysis and what is expected from them as analysis participants. They also were educated that the participation is voluntary plus they have the to terminate their contribution any time they need, without giving a reason, and their right to confidentiality. In addition they were prepared that their continuing care or treatment was not dependent by their decision to take part or not. The researcher used all his efforts to make the participants comfortable to share about their experience and needs widely, and tried to notice any non verbal symptoms of desires for venturing out from the study, all participants agreed upon the written educated consent newspaper after reading it carfully.
When participants needed to have counselling in their homes, researcher coordinated by experts rehabilitation plus some time researcher referenced them to Neuro-rehabilitation center and also with hospitals to check out his/her problems clinically or in-patiently.
The participants ranged in age group from 20 to 68 years. Seven main categories were identified within the evaluation process: family integrity, changing home's environment, managing co-morbidities, ease of access of rehabilitative services, widening nurses' roles, utilizing interpersonal insurance, and learning and skills.
Family integrity conceptualized the way the participants extended their attempts to maintain family composition and function despite of the complications induced by the stroke. Modifying home's environment experienced concerning facilitate the heart stroke survivors to reside at home ideally, and handling co- morbidities perceived as essential to prevent recurrent of strokes by handling other symptom and diseases. Option of rehabilitative services experienced as unacceptable and misdistribution of the services. Expanding nurses' functions means that nurses jobs should be developed as coordinator in rehabilitation groups to diminish biophysical and psychosocial limitations. Utilizing cultural insurance wished for as the key rehabilitation supportive service, learning and skills regarded as the basic needs for facing with the stroke event and help caregivers to simply accept the reality of their own situation.
Researcher inferred that the lack continuity of treatment attention at survivors' homes is the key variable concepts on the growth of the providing of survivors' rehabilitation because family caregivers experience accessing to services and covering rehabilitation services by public insurances could provide regularly for leading, supporting and assisting survivors to be self-employed sooner. In this way they perceived that special educational programs and skills are would have to be well-adapted with new situations. It triggers the pressure on members of the family would be made less.
As the part of Iranian ethnical values, Islamic religious believes, preserving, unity, maintain family structure and emotional sense during event will be the essential strategies which families adapt with. In this case family caregivers have been involved to continue providing rehabilitation treatment and changing home environment to help better situation for survivors in their homes.
Lack of continuity of rehabilitation health care services cause overload working by family care givers such as survivors; lifting, transferring, nourishing and nurturing because exhaustion, frustrations and lack of energy. Therefore assisting by lay care givers may help them a lot especially during the first couple of months in this technique.
Lack of knowledge and skills regarding survivors' health care made these to be agitated and down the road disappointed. They assumed that the nurse's jobs are as important as the family health care givers on the restoration of these patients regarding education and skills, introducing recourse, psychological support and medicine tips, timely coaching of patients and caregivers, and analysis and information exchange regarding patient progress and treatment needs. Insufficient access to these services could postpone survivors' recovery.
Continuity of good care specifically relates to the nurses' extended presence with the patients and engaged coordination of the multi professional team's diverse efforts. Nurses, getting together with patients and family frequently during the day in many diverse situations, are in a unique position to assist in the interpretive work that stroke survivors and their own families proceed through and which really is a prerequisite for moving forward in the adjustment and rehabilitation procedures following a heart stroke.
Family caregivers experienced that maintaining integrity, morale and durability were important to keep family structure and their jobs despite of the issues caused by the stroke. Family caregivers were also required to look for new ways to compromise with this real event, as the part of their Iranian social values, Islamic religious believes, unity and psychological feeling that were the essential strategies which individuals had modified.
"Whereas in Iran, family composition is so important for its members, therefore religious and emotional actions help us to stand, It ought to be continue by culture and empowered '(Family caregiver 2),
Participants perceived that following the unstable event of heart stroke, their house environment would have to be modified, depending on survivors' condition. The changes aimed at helping both survivors and the family caregivers to try out their roles better and live an active life by participating in the family life, whatever is available at home.
"We have to change the house environment to help survivors by using devices such as grab bars in bathroom, an elevated toilet seating and a long-handled clean, and also electric toothbrush and a power razor. (Family caregiver 9).
Participant perceived that taking care of other symptoms like body pain, and diseases such as diabetes and cardiovascular disorders, as well as hypercholesterolemia and obesity
were important to avoid recurrent period preventing progressive diseases.
"I have tried to control other disease such blood circulation pressure, diabetes and cardiovascular disorders with assisting Doctors and nurses as well the control of dietaries and drugs management, besides of heart stroke and its problems (family caregiver 6).
There are only a few special rehabilitation centres for stroke survivors in Iran and usually the heart stroke patients are described general population or private caring centres and to their own homes, because these treatment centers are very far from their homes. These services were viewed to be expensive and not accessible from your home and community, therefore stroke survivors and their family caregivers endured of not getting treatment services.
"My family has lost their energy and in times, we have been so fatigued and agitated If an individual involves 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, ideal for our incomes; going definately not my home is very costly to access and so problematic for me and my children as well to bring services in our home (Family caregiver 11).
Most individuals experienced that nurses have a multidimensional role in rehabilitative care and attention plus they can act as team coordinators and educators for patients and their families. They were also regarded as to have the ability to promote healthy lifestyle, advocate available recourses, nourishment, and medication, rehabilitative health care tips to survivors and family caregivers, as well as elimination of stroke relapse.
"Nurses have a feeling of advocacy and morale besides the care delivering, this is an undeniable fact, and I do emphasis that the role of nurses for patients is essential and important". "(Family caregiver 3)
Participants deemed their friends or family as the source of encouragement to seek sociable support. They experienced that social support from family members, community and close personal relationship each has an advantageous effect in heart stroke patients' life. The social support from them offered a sense of self-confidence and self-sufficiency in heart stroke survivors.
Family caregivers expressed also that insufficient assistant to worry and insufficient interpersonal insurances for covering and getting services from therapists brought on the families an encumbrance. The provision of public support was considered to help the survivors to be enforced about the sense of owned by others and also to friendship.
"During these times my children network frequented and motivated us to be happy and satisfied, I am so grateful to them because they come within my home to provide a lift again. "(Family caregiver 4).
" The cost of attention and treatment that are extra in our life, if we'd more support in advance, it would be more helpful and may become more effective. "(Family caregiver 10).
Family caregivers experienced insufficient knowledge and skills to provide care for the survivors and offer with new situation; they perceived the necessity for information and education at their homes regarding transferring, lifting, feeding, drug taking as well as how to care
"I confronted with insufficient information and skills related to the function, the provision of supportive education is essential for stroke survivors and their family caregivers from clinic to home, I don't know what to do" (Family caregiver 12)
The first author (Advertisement) confronted with some restrictions in this research, such as ethnical obstacles to be accepted into the participants' houses. The study shows that the need of continuity of good care and treatment services is pivotal for advertising of ADL and medical situation of heart stroke survivors and their family caregivers, after discharge from hospital. Based on survivor's situation, communication between family caregivers and rehabilitative care and attention providers could be coordinated to enhancing rehabilitative care issue in order to attain self-care and self-management. Even the social support from family was a strategy which was used and recommended by the family caregivers of stroke survivors. Thus, the delivery of ongoing support and rehabilitative health care is needed to reduce burden of care and attention giving.
Lack of continuity of rehabilitation was extracted as core ideas among data and principles and related categories because family good care givers have been following a process of getting rehabilitation services for minimizing physical disturbances; socio psychological limitation and help survivors to be self -freedom, they believed sociable insurance could involve these services at the survivors' homes, supply the transportations to treatment centers and support nursing care and lay down treatment givers for stopping of family burden.
They experience that insufficient these types of supports leading to: cause less integrity and enduring among family members despite of their initiatives and to incomplete treatment services for stroke survivors.
Family caregivers need many skills and also have many difficulties from the involvement and jobs of care giving (Bakas et al 2004, p. 243). Building comprehensive treatment programs in order to address the unique needs of specific family caregivers is emerging as a critical target for research, as well as an important subject matter for policymakers, both in Iran and other countries. Han & Haley (1999, p. 1479) also mean that stroke survivors have, besides of heart stroke and its difficulties, other diseases, such as diabetes, blood circulation 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 handling the symptoms and deficits of the stroke survivor. Lui & Thompson 2005, p. 2515) signify that teaching family caregivers to handle these problems also to reduce their stress is essential. Addititionally there is some information that caregivers' well-being influences even the health and restoration of heart stroke patients (ibid. ). Our study findings show the same in Iranian framework.
Our research shows also that the house environments have to be changed, as the modifications can help the family caregiver that can be played their functions better and have dynamic daily lives. Vanhook (2009) discovered that that the product quality and quantity changes in home environments is determined by survivors' condition although there is little thought of the subconscious, interpersonal, environmental needs during and after treatment: when the survivor comes back home, the environment is a foreign one (Vanhook, 2009, p. 7).
The participants inside our study considered that there is need to broaden the tasks of nurses in rehabilitative care and attention. As Steiner (2007) says, nurses have a holistic methodology through coordinating and integrating with other associates to deliver treatment services for survivors and help caregivers to control the situation. Besides, nurses tend to be the first ever to connect to the stroke patient in both acute care and intensive rehabilitation. Using evidence-based knowledge, the nurse gets the responsibility to expand the nursing record to add such factors as earlier cognitive state, past perceptions of health status, present role within the family dynamic, previous self-concept, social influences, and interactions both personal and social. Inside our multicultural society, additionally it is imperative that we understand and develop a knowledge of the energy of ethnicity as it pertains to individuals' health perception, thus influencing the healing process. Steiner (2007, p. 48-54)
The participants inside our analysis experienced that providing information's and appropriate education in responding to their needs, were the most important and valuable things which improve effectiveness of these services.
Family caregivers perceived that covering of rehabilitative services by cultural insurances firms can help survivors and their family caregivers to get better rehabilitation facilities and improve efficient performances. The communal insurances
can also reduce stress in the survivors' situation by providing lay down caregivers for supporting members of the family. .
Previous studies have examined the effect of different types of public support on useful recovery after heart stroke (Friedland & McColl 1992, p. 575), much like our study proved that cultural support from family, community and from close personal human relationships each has a beneficial effect in stroke patients. As Shah (2006, p. 472) and Weimar et al. (2002, p. 2055) case, the post stroke family support, financial position, and community resources should be examined to maximize successful return to the city.
This review confirms the results of Oswald et al (2008, p. 245) who discovered that stroke is expected to continue being a major matter for survivors, their own families and health and social good care providers because heart stroke continues to affect the survivors' and their family life situation quite a while. Besides, most stroke survivors live in the community and are assisted by family caregivers, especially by spouses. Stroke-related impairments and post heart stroke depression hinder recovery and cause impaired relationships and reduced life satisfaction for the survivors and their spouses. By increasing the patient's involvement in treatment, their ability to solve problems in ADL also to transfer knowledge to new situations hopefully that patients and family satisfaction in lifestyle increase.
The research illustrates that the family caregivers are stricken of the heart stroke because the providing care for stroke survivor in order to rehabilitate the survivor major proposal is necessary from the family caregivers. Enhanced release planning and nurses follow-up with cooperation of stroke survivor's people is highly recommended as essential in maintaining the well-being of the family caregivers and bridging the difference between the medical center and the community, minimizing family burden, receiving high quality of rehabilitative care and make decisions regarding their own life and treatment.
There is a need to build up family caregivers' talents to provide care and attention 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. Community and emotional support also needs to be provided to minimize the family participants' burden and help them taking care of the results of heart stroke.
Therefore, the Iranian Federal government should enhance the cultural and financial support and order a cultural insurance for stroke survivors and their family caregivers both by general population and private interpersonal insurance agencies. There is also a need for managing and extending treatment services in health programs for reducing physical dysfunction, thus assisting the patients and their family caregivers to apply better role shows and encourage independency in activities of everyday living.
Further, a treatment team should plan and concentrate on functional disruption and interpersonal support. Gleam need to write a stroke treatment standard protocol that coordinates team work. In this particular work, nurses' experience are highly needed.
This review is funded by deputy of research at University or college of Friendly Welfare and Rehabilitation Sciences.
The first researchers have no conflicts of interest regarding financial support and recognized affairs in this research.