The inclusion criteria for the family caregivers were (a) having a patient with ..... Guba E. Criteria for assessing the trustworthiness of naturalistic inquiries. ECTJ.
Title: Family caregivers’ experiences of stroke recovery among older adults living in Iran: a qualitative study Abstract Purpose: A comprehensive explanation of the elements of stroke recovery from family caregivers' viewpoint is lacking. The aim of the present study is to describe family caregivers' experiences with promoting stroke recovery of older adults in Iranian context. Design: A qualitative content analysis approach was conducted. Methods: Seventeen family caregivers participated in the study from multiple physiotherapy clinics in Sari (Iran) between September 2013 and April 2014. Data generated through indepth interviews and content analysis method was used to determine themes. Findings: The results of data analysis were categorized into the three main themes including: (1) Promoting functional recovery (2) Improving psychological health (3) Strengthening social roles. The general theme found to be promoting positive recovery. Conclusions: Family positively contributes in the stroke patient's recovery. It is necessary that health practitioners help the stroke families to sufficiently play their critical role in recovering their stroke patients. Clinical Relevance:
The findings of the study can help nurses and other healthcare
practitioners to prepare family caregivers to provide quality care to their stroke patients after discharge from hospital with the aim of facilitating patients' rehabilitation and recovery. Keywords: recovery, elderly stroke, content analysis, family caregiver's experience
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Stroke is a serious health problem and a main cause of death and adult disability worldwide(1). According to World Health Organization estimates, 15 million people each year suffer strokes and 5 million are left permanently disabled(2). In Iran according to a study, the annual incidence rate of stroke is 139 per 100,000 of population(3) .Stroke is equivalent to heavy burden of disability for patients, their family caregivers and the community in general and is the third leading cause of death worldwide(4). Having a stroke can affect the survivor physically, emotionally and cognitively, ultimately resulting in behavioral changes(5). Studies revealed that as many as 12-18% of stroke patients are dysphasic, 22% may be unable to walk, 32% are clinically depressed and 24-53% remain dependent on family caregivers for activities of daily living(1). Recovery has become an international movement provoked by the confluence of the health service consumer movement and a body of research findings. The emphasis of the health service consumer movement continues to be recovery as primarily a civil rights issue(6). The definition of "recovery" differs among different discipline. It typically means an act of returning to normal state, regain possession of or to extract an energy, source or chemical for use(7). The vast majority of stroke patients live in the community with their spouse or the family member(8). They need additional support from family or friends to live independently(9). In fact, stroke can be seen as a family matter in which the immediate family of a stroke patient tries to build a recovery and reconstitute family life(10). Obviously, incorporation of family members in caregiving process of stroke rehabilitation improves recovery(11). A family caregiver is a person lives daily with the elderly, providing them assistance with hygiene care, giving them comfort, helping with feeding, encouraging them to perform rehabilitation activities, and interacting with the therapeutic team(12). Given the families are a life-line for many consumers, reaching the goal of recovery requires partnering with families(13). It is evident
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that a comprehensive holistic explanation of the personal processes of stroke recovery is lacking(14). Many health care providers pay little attention to the preparation of stroke patients for the recovery trajectory or the family for the caregiving role(15). While a great deal has been written about stroke recovery, there has been relatively little theoretical work examining the process from the point of view of both patients and family caregivers(16). There are increasing evidence of adverse effects on family caregiver of caring for stroke survivors, but little is known about the characteristics of caregivers and survivors that influence caregiver outcomes(17).Given that there is no single universally agreed upon conceptualization of recovery, exploring recovery empirically has been an ongoing challenge for researchers(18). In Iran, health care system lacks care centers for stroke patients and such a patients are transferred to their homes or private care centers and they do not have adequately access to rehabilitative services (19, 20). This may result in many difficulties and long-term problems for stroke patients and their family members who are usually the main caregivers within Iranian social and cultural context(20). It is evident that very little information is available concerning the detail of recovery promoting factors after stroke from the family caregivers' perspective and the aim of this qualitative study is to explore and describe family caregivers' experiences with promoting stroke recovery of older adults in Iranian context.
Method Study Design The present study is a qualitative study in which content analysis method was found suitable for present qualitative study, as it has been an important way of providing evidence for a phenomenon especially in nursing research
(21). Graneheim and Lundman's (2004)
perspective was employed for analyzing data as they provided a clear insight about concepts
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related to qualitative analysis and presented measures throughout the steps of the research(22). The participants The study participants consisted of 17 stroke patients' family caregivers who voluntarily participated in the study. All the participants were recruited by purposive sampling from various sites including one physiotherapy (PT) clinic of a public hospital affiliated with Mazandaran University of Medical Sciences in Behshar city, Iran, three private physiotherapy clinic and one elderly day care center in Sari city, Iran, during the time period between September 2013 and April 2014. The inclusion criteria for the family caregivers were (a) having a patient with 60 years of age and older with stroke diagnosis, (b) living with the patient or having a major contribution in the patient's caregiving task after being discharged from hospital. At the initial contact the family caregivers were informed of the nature and aim of the study and possible risks and benefits, and after having their verbal consent for participation, the place and time of interview were arranged. Two interviews were performed in the patients' home and other interviews were done in the private room in the PT clinics office. The recruited family caregivers were assured that they can withdraw any time and confidentiality is preserved. Data collection After obtaining Mazandaran University of Medical Sciences approval, the investigators gained access to the potential participants. All the private clinics and elderly day care center managers permission was obtained too, before entering the field. At the beginning of each semi-structured interview some simple questions were asked to obtain participants'' demographic data and to prepare the atmosphere for next questions. An interview guide was developed by the researchers which includes the following questions such as, do you want to tell me what problem have you had since your patient's stroke? What did you do to deal with
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your problems? According to the participants' responses, follow up questions were posed by the first author to explore the caregivers' experience in the family regarding recovery aspects of their experience during in-depth interviews. Most interviews were lasted between 35-110 minutes and were audiotaped for later transcription. Family caregiver recruiting was continued until data saturation was reached i.e., no new themes emerged. Data analysis Graneheim and Lundman's (2004) viewpoint was used for analyzing data which includes stages of (1) Selecting unite analysis or subject of study (such as interview, diaries, a person and etc.), (2) Deciding on meaning unites (including whole text, paragraphs, sentences or words), (3) Condensation (involving shortening the text while still preserving the core meaning), (4) Abstraction (including description and interpretation of data and creation of codes, categories and themes on varying level) (22) (25). The whole interviews were chosen as meaning units. Accordingly, at first the audiotaped recordings were transcribed verbatim. Data analysis commenced after the data were obtained from the initial interviews by the authors. Each Transcribed interview was read a few times to acquire the sense of whole and was analyzed line by line and word by word to establish code unites. MAXQDA 2007 software was used to facilitate analyzing data. Similar codes were assigned to related subcategories and each subcategory was allocated to the related categories to manifest the content of the text. General theme was developed to link the underlying meanings in the categories(22). Trustworthiness To ensure trustworthiness, the criteria of Guba (1981) were used in the study(23). Credibility was established with regard to variation in participants' age, gender, type of occupation and relationship with the patients to provide a broad description of the phenomena. The researcher had prolonged engagement with the study fields and used field notes to enhance
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the quality of data. Peer checking was conducted by three experts with PhD degree in nursing to verify the coding and categorization process. All the nursing expert were university teachers with sufficient experience in doing and teaching qualitative research. For member checking, 6 interviews drafts were returned to the participants to confirm that the researchers were presenting their actual perceptions. The participants were asked to read the drafts carefully to validate or refute the researchers' interpretation of data. Ethical considerations The study was approved by the research ethics committee of the University of Social Welfare and Rehabilitation Sciences in Tehran, Iran, 2014. Permissions were obtained before entering the study fields. All participants were informed about the aims and nature of the research as well as the having the right to leave the study at any stage without being penalized. Consent for participation in the study and audiotape recording were obtained. All the participants were assured their confidentiality would be protected by the researchers. The participants are identified by numbers, which were assigned in a chronological manner.
Results Seventeen family caregivers (9 were female and 8 were male) were interviewed .The participants were between 21 and 71 years of age and their mean age was 44.88±12.05 year. The subjects had different length of caregiving experience from one month to twelve years (table 1). Data analysis resulted in three main themes (1) promoting functional recovery (2) improving psychological health (3) strengthening social roles (table 2). Promoting positive recovery was realized as a general theme. These three themes are explained separately by means of examples from the data. Participants are identified by numbers. Theme 1: promoting functional recovery
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The first theme as emerged from the data analysis is promoting functional recovery and it includes four subthemes of reviving/compensating the lost abilities, handling activities of daily living (ADL), dietary modifications, and monitoring the disease. All of the family caregivers tried to recover their patients through improving the lost patients' functions. Reviving/compensating the lost physical abilities All of the of the participants spoke of their striving to help their patients regain the lost physical abilities by means of doing PT exercises or speech therapy. The PT exercises are done both in the clinics and at homes. Many of the family caregivers performed passive exercise for the patients or encouraged them to do active exercise in a regular basis. Participant (P.) 3: "I've done speech therapy for her and I also help her to come to PT clinic every afternoon and assist her to do exercise every evening at home." [woman, aged 30 years] P.8: "PT is very important, those exercise and body activity. Those that make her to move and also she (the patient) mobilizes her body are helpful too." [man, aged 49 years] P.11: "She performed (the patient) PT exercises at the clinic and my father bought PT equipment for her to do the activities at home." [woman, aged 33 years] P.8: "I always tell my mother to do exercise, if you don't perform exercise you'll be worse" [man, aged 49 years] Handling activities of daily living All of the participants attempted to compensate their patients' physical disability through direct assistance in conducting patients' personal ADL or by using moving aids such as wheelchair, walker or stick. Some of the participants pointed out to some modifications that they have made at the homes to increase their patients' moving ability. P.1: "He couldn't move his legs and hands and I helped him to go to toilet and used diaper for him". [woman, aged 61 years]
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P.12: "She wasn't able to do her personal task, I put food into her mouth and helped her to go the toilet and take bath. [woman, aged 43 years] P.2: "She can walks but by using walker, and I have to be watchful not to fall though." [man, aged 61 years] P.6: "we've made some improvements in the house, we've made a toilet and bathroom next to her room and also sloping ramp for her easy movement"[man, aged 34 years]. Dietary modifications Nearly all of the participants helped their patients directly to eat food and modified their daily diet due to stroke related dysphasia or other health related problems such as hypertension and hyperlipidemia. P.14: "As she had difficulty in swallowing, I softened the food in the mixer and gave her meal with my hand." [woman, aged 44 years]. P.5: "His food should be different from others', I don't add pepper and salt to his food. I also prepare boiled food instead of frying to him and learned him how to eat food". [woman, aged 30 years]. Monitoring the patient Many of the participants added that they monitor health condition of their patients by means of checking blood pressure and sugar regularly or any sign of skin breakdown or problem in defecation and sleep. Some of the family caregiver perfumed routine checkup for the patients' comorbidities such heart and renal diseases. P.7: "I don't take her to health center very often, I check her blood pressure and sugar at home."[man, aged 42 years] P.10: "We take him to the doctor's office for medical check-ups on time, for his heart and kidney or laboratory tests." [man, aged 42 years]
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P.17: "I observed her for possible sign of bedsore and personal hygiene." [man, aged 45 years]. Theme 2: Improving psychological health The second theme that was discovered in the study is improving psychological health and its three subthemes are reinforcing positive identity, preserving psychological stability, meeting entertaining and spiritual needs. Every family caregivers tried to recover their patients psychologically. Reinforcing positive identity The majority of the participants shared their experience of how they strived to strengthen positive identity in their patients through taking the patients' order and giving them the opportunity to choose on their own and/or talk about their past. P.5: "My uncle is a lawyer, and he has my father testament, he (the patient) wrote "Do not use my possession as long as I am alive". [woman, aged 30 years] P.12: "She only accepts her own neurologist advice and doesn't accept any other doctors so we bring her to her doctor." [ woman, aged 43 years] P.3: "I always tell her that you brought us up and now it's our duty to keep you. If she wants me something I will provide it to her." [woman, aged 48 years] P.5: "I ask my father what you did when you were young. And dad told me about his naughtiness that no one knows, even my mother". [woman, aged 30 years] Preserving psychological stability All of the participants mentioned that they had maintained a balanced psychological state for their patients and protected them against any mental stresses. They also tried to establish an affectionate relationship with the patients. P.10: "We (patient's sons) are at his service anytime; we never allow him gets low spirits." [man, aged 49 years]
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P.2: "I provided more calmness for her at home, calmness and peace of mind. These patients shouldn’t have any annoyance…I'm trying to give her this understanding that we're not tired of her and we love her."[man, aged 61 years] P.10: "If a bad thing happened to our family I remind anybody not to tell dad, I didn't want dad to get involved and feel upset." [man, aged 42 years] Meeting entertaining and spiritual needs Some of the family caregivers pointed out to their patients' preferred activities at home to fill their free time and to some actions that they took to entertain them. Some participants met the patients' spiritual needs. P.5: "He likes listening to radio very much, and after stroke he attached to it more than before." [woman, aged 30 years] P.2" "I talked to her until evening or play a film on CD player to entertain her. If she feels tired, I take her outside to patrol in the city." [man, aged 61 years] P.16" "She loves listening to religious speech and I play for her the audiotape that she likes" [woman, aged 21 years] Theme 3: Strengthening social roles The third theme in the present study found to be strengthening social roles which consists of two subthemes of supporting social roles and family roles. In the opinion of the majority participants it was very important that social roles including internal familial and the stroke patients' roles outside of the family are supported. Supporting social roles P.5: "Dad went outside by wheelchair; he went to his gardens and visited his properties." [Woman, aged 30 years] P.10: "We take him to an elderly day care center where he can meet his peers and other old ladies and gentlemen." [Man, aged 42 years]
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P.1: "My husband is sick; I've to go to bank and shopping. He gave me the legal right to get his pension." [Woman, aged 61 years] P.5: "My brothers handle dad's farmland and bring the crops to him." [Woman, aged 30 years] Supporting family roles P.12: "She spends time with her grandchildren and fills her free time." [Woman, aged 43 years] P.8: "We keep her grandchild with her, and her sister or brother come to visit her." [Man, aged 49 years] P.10: "I took him to my home to have dinner with the family and after dinner we sit together and talk about different thing…we're always near him and sometimes get his help as before his disease."[Man, aged 42 years] Promoting positive recovery Promoting positive recovery is the general theme as emerged through data analysis. All participants used their own way to construct a positive recovery for their patients. P.1: "I am very careful and give him good food. You should look after the patients very well. The doctor said mushroom is very useful for his recovery". [Woman, aged 61 years] P.15: "These patients (with stroke) firstly should be under doctor's supervision. After coming home you should take care of the patients very well to return them to health. [Woman, aged 49 years] Discussion In this research, the participants articulated their experience of their older family member recovery from stroke. Elderly stroke recovery has multi elements. The analysis and interpretation of the data showed that family caregivers tried to recover their patients. They care aimed to promote physical, psychological and social aspects of their patients. Vanhook
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(2009) also in her study indicated that stroke recovery is a multifaceted phenomenon including physical, psychological and social domain that cannot be separated from each other(14). The findings reveal that all of the participants tried to return their patients' functional health through reviving/compensating the lost abilities, dietary modifications, and monitoring the patient. In agreement with present study, Goldstein (2000), argued that one of the major goals of intervention during the post stroke recovery period is maximization of functional recovery(24). Therefore, much of the focus of stroke rehabilitation is on the recovery of impaired movement and the associated functions(25). Functional disabilities are the distinctive feature of stroke deficits and they are primary focus of rehabilitation(14). Morris and Williams (2009) emphasized that qualitative investigations with stroke patients and family caregivers enable researchers to explore experiences and perceptions of barriers and facilitators to long-term participation in physical and therapeutic activities(26). The physical and functional benefits of stroke patients’ long-term participation in various types of physical activity are now well established and these benefits can result in improved recovery, function too(26). The result of a meta-analysis study shows that physical rehabilitation, comprising a selection of components from different approaches, is effective for recovery of function and mobility after stroke(27). Additionally, compatible with the present study, Jullamate and colleagues (2006), in their qualitative study found that physical rehabilitation is one of the main categories related to informal rehabilitation which is provided by stroke family caregiver(28). Galvin and others (2009), in their qualitative research argued that Family-mediated exercise therapy was identified as an acceptable adjunct to routine physiotherapy after stroke(29). It is also emphasized that caring family member is one of the major factors that leads to positive outcomes after stroke(30).
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Activities of daily living (ADL) consist of basic element (for example, feeding, and dressing) and instrumental ADL, which are necessary for independence in the community (31). The older age with stroke may require different services from younger age in many aspects of doing ADL(32). In congruent with the present study, a qualitative research showed that stroke patients are faced with high dependency on others, especially family members (20). It is also evident, that family caregivers' knowledge and skills related to the management of daily life is crucial for stroke patients(33). Dietary modification in combination with medications and exercise might reduce recurrent cardiovascular events by four-fifths in patients with stroke(34). Malnutrition is common in the first few months after stroke and contributes to a poor overall outcome(35). The limitation in the ability to safely ingest adequate amounts of food and liquid places the patient with acute stroke at risk for poor nutrition, inadequate hydration and other complications such as aspiration related pneumonia(36). Identification and treatment of, dysphagia and inadequate nutritional and feeding states in patients with stroke to help caregivers reach their full potential for rehabilitation(37)-and patient's family members have major role in this aspect recovery. Poor family care can contribute to poor nutritional status and dehydration in stroke patients with dysphagia(38). Ensuring adequate hydration in acute stroke patient with disphagia is a multi-stage process with shared responsibility and defined roles for health care team and family members(39). Similar to the current study, Sit and colleagues (2004) found that the majority of their research participants' (82.4%) caregiving demand was the monitoring the stroke patient’s health condition(40). The family caregiver is a vital factor in effective disease management and the patient’s quality of life(41). Pucciarelli and others (2014) argues that family caregivers may not be well prepared to provide suitable care to their stroke patients including monitoring symptoms(42). Many stroke family caregivers need more education about stroke
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signs and symptoms, its complications and the ways to manage these complications and prevent stroke recurrence(43, 44). The results of the study indicate that the stroke family caregivers helped their patients to recover psychologically by means of reinforcing positive identity, preserving psychological stability as well as meeting entertaining and spiritual needs. Part of what gives life meaning for individuals is their identity(45). Serious chronic illness undermines the unity between body and self and forces identity changes(46). In fact, The dominant theme in the qualitative stroke literature is the effect of impairments on identity(47). The profound changes which are made by stroke, threatens the patients' familiar sense of self and identity (48, 49) and even may leads to loss of identity(50) which is a commonly reported experience after stroke(47). Ellis-Hill and Horn (2000), argue that stroke patients describe themselves in more negative terms than prior to their stroke and they report a negative sense of self(51). Evidently, stroke leads to personality changes in the patients(52). In agreement with this research, Slade and others (2012) in their systematic review conclude that one of the major components of recovery process is identity and in particular, redefining and rebuilding a positive sense of identity are the keys of recovery process(53). Reconstruction of positive self and identity amid the disruption of chronic illness has been presented as occurring through two broad processes, namely reconnection with valued aspects of the pre-illness self and the development of new, meaningful social identities(48) and family has a major contribution to these processes. In fact, family caregiver should proffer choices with which the stroke patient can identify himself or herself(54). Anderson and Marlett (2004) suggest that re-establishing identity after stroke evolves with time and messages about disabilities may not contribute positively to the process(55). Clearly, being successful in regaining skills and re-establishing habits and routines help stroke patients redefine self-identity(50).
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In agreement with the present research, a Study results indicate that availability of tangible support in stroke elders contributes to psychological well-being(56). Bergersen and colleagues showed in their study, that most of (88%) stroke patients were satisfied with psychological support that were provided by their family members(57).The support of family caregivers for their relatives with stroke have an important impact on whether patients can remain outside of rehabilitation care. Moreover, patients’ depressive symptoms predicts poor responses to rehabilitation(58). Tsouna-Hadjis and colleagues (2000), concludes that high levels of family supports including emotional care, are associated with progressive improvement of functional status, mainly in severely impaired stroke patients, while the psychosocial status is also affected(59). Exercise and recreation may improve memory and executive functions of communitydwelling individuals with stroke(60). According to a study, stroke patients believed that recreation help them to recover sufficiently(61). The number and frequency of active leisure participation decrease after stroke and the patients become passively discontented with outdoor and indoor activities as well as activities such as entertainment(62). Due to certain limitations secondary to stroke, individuals may no longer express interest in the same activities as prior to having the stroke because of the inability to perform these activities. Influencing factors of leisure participation include hemiplegia, depression, fatigability, and aphasia(63). However some leisure activities including watching television may increase after stroke(64). Secondary to aphasia, stroke patients engage in leisure activities with less speech and fewer conversations such as watching television(63). Blömer and others (2014) argued that the frequency of participation in vocational activities six months post stroke decrease compared to before the stroke and it is significantly associated with the participation restrictions experienced and satisfaction with participation(65) -and family may have considerable role in removing obstacles against stroke patient's participation in the vocational
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activities. Compatible with present study, it was showed that One-quarter to almost half of the stroke patients and family caregivers receive information about vacation, recreation and entertainment(66). Being sensitive to stroke patients for spirituality by case managers is essential(67). Family caregivers needs to be perceptive to stroke patients' spiritual needs(68). Spiritual care is a fundamental component of patient's care after stroke(69). Spiritual beliefs and practices are associated with improvement in all three outcome measures including functional status, depression and social activities' of stroke patients after discharge(70). Stroke has the potential to affect almost every aspect of life, including carrying out family and social roles(71). Family members of a stroke patient offer important social support including instrumental help, emotional encouragement, and compliance with therapeutic instructions(59). Social support are associated with faster and more extensive recovery of functional status after stroke(72). Social interactions have been shown to influence stroke outcome(73). According to Tsouna-Hadjis and others (2000), patients with moderate to severe stroke and high levels of family social support attain a significantly better and progressively improving functional status than those with less support(59). Similar to this research findings, Glymour and colleagues' (2008) conclude that stroke patients in the families with social ties and those with higher emotional support have better cognitive condition compared to socially isolated individuals or those with less emotional support(74). High level of family support are associated with progressive improvement of functional status, mainly in severely impaired patients(59). Promoting positive recovery is the main theme that emerged from data analysis of this study. Stroke can be seen as a "family matter" in which the immediate family of the stroke patient tries to construct a positive recovery(10). In agreement with the present research, Bäckström and Sundin (2010), in their qualitative research showed that stroke patients relatives
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experienced a growing sense of responsibility to construct a positive recovery(75). Burman (2001), also found in a qualitative research that family caregivers constructed positive recovery as a primary strategy to attempt to promote their stroke patients' recovery(76). Conclusion The main aim of rehabilitation post stroke is to further recovery. This study draws attention to some facets of stroke recovery as experienced by family caregivers. Stroke effect on the patients and families is complex with multi dimensions. As expected, family has significant role in the stroke patient successful recovery. It is a process involving functional, psychological and social elements. The exploration of the post-discharge experiences of stroke patients' family caregivers is necessary to illuminate different strategies that they use to improve their patients' health. The study findings are based on the data from family caregivers experience only and it is also more suitable to inspect stroke patients' experience on the recovery contributing factors. Moreover, given the qualitative nature of the study, identified factors are based on the participants' experience in Iranian context where family members are the most important facilitator of recover patient's recovery and they have inadequately access to stroke rehabilitation centers that calls for cautious interpretations of leading factors in stroke recovery.
It is useful to do similar studies on stroke recovery
elements in other cultures and context. Moreover, investigation on the contributing components of unsuccessful recovery in stroke patients in order to determine the lacking factors from the side of the patients' families may be useful. Exploring recovery process specifically according to stroke patients' gender, illness severity and in other age groups of patients may be helpful. The results from such research would directly impact clinical and mainly nursing practice. Health care professionals can use the research findings to educate and prepare the stroke patients and their family members during hospitalization and after discharge from hospital to ensure better physical, psychological and social recovery.
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Moreover, health practitioners will be able to provide more family focused care postdischarge especially in rehabilitation settings. Conflict of interest The authors declare no conflict of interest.
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Figure Legend
Table 1: Stroke family caregivers' demographics
Table 2: Results of interviews content analysis including general theme, themes and subthemes
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