Authors:
Asghar Dalvandi,
Sirkka-Liisa Ekman,
Hamid Reza Khankeh,
Sadat Seyed Bagher Maddah,
Kim Lutzen,
Kristiina Heikkilä,

Asghar Dalvandi, RN, MsN, PhD student (1), Faculty Member(2)
Sirkka-Liisa Ekman, RN (1), PhD, Professor
Hamid Reza Khankeh, RN, PhD, Assistant Professor (2)
Sadat Seyed Bagher Maddah, RN (2), PhD, Assistant Professor
Kim Lutzen, RN(1), PhD, Professor
Kristiina Heikkilä, PhD, Senior Lecturer (1, 3)

(1) Karolinska Institutet, Department of Neurobiology, Caring Science and Society, Division of Nursing, Stockholm, Sweden,
(2) Nursing Department, University of Social Welfare and Rehabilitation, Tehran, Iran;
(3) School of Health and Caring Science, Linnaeus university, Växjö, Sweden

Correspondence:
Asghar Dalvandi
Phone +46 8 524 839 27 Fax: +46 8 524 868 65 Mob: +46 7 36453576
Email : asghar.dalvandi@uswr.ac.ir

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BACKGROUND
Stroke can be a tragic event for survivors and their families because many stroke survivors experience physical and psychosocial limitations when they return to their home environment (1). The incidence of stroke increases with advancing age; in Europe and North America the incidence per year is between 100 to 300 per 100,000 inhabitants and in Iran, based on different local studies is between 33 to 372 per 100,000 (2, 3 & 4). Most stroke survivors have families that are providing some level of rehabilitation care and support (5), and providing care in the home setting is the common experience among stroke survivors' family members (6). Stroke survivors returning home commonly rely on family members for assistance with daily activities and for navigating the complex health care services such as rehabilitation and community care (7, 8).

Integral to Iranian cultural tradition family caregivers are seen as an essential part of health care services (9). Providing care for such patients is a heavy burden for the family caregivers, and may be the most challenging (10) in long-term care for stroke survivors (11).

The family is the core social foundation and the most important factor in bonding people since family ties take precedence over all other social relationships in Iran (12). The family in Iranian society is an important place for belonging to each other, achieving influence, getting support and security. Nuclear family members in Iran usually communicate with extended family members and have responsibilities and obligations toward each other (13). However, in the last decades the Iranian family has moved closer to the Western model of the nuclear family in both its functions and its family relations (14).

A review of the international literature found that research on the process of family caregiving has focused on negative outcomes (15) such as depression, isolation and burden, a decline in physical and mental health, and reduced quality of life (16). Similarly, in a qualitative research study conducted in Iran, Mohammadi (17) it was found that Iranian family caregivers who took care of their old parents experienced various negative effects such as stress, the burden of care and physical and mental problems.

Successful rehabilitation of patients requires involvement from family caregivers (18). Thus, the viewpoints of family caregivers have an important impact on stroke survivors' recovery and their ability to remain outside institutions and to return to their homes during the rehabilitation period (19). The family has an important function in post-stroke care but needs support from healthcare team members (20). Understanding the family members' experiences of stroke care is needed to find out what works for patients and their family caregivers in order to provide successful rehabilitative care (5, 21). In addition, research indicates that there is a need to investigate the link between the family caregivers' experiences and the formal provision of rehabilitative care for stroke survivors in Iran (22), specifically, how family caregivers perceive the process of rehabilitation. Thus the aim of this study was to fill this knowledge gap, by exploring the Iranian family caregivers' experience of the provision of rehabilitation care at home.

METHOD

A grounded theory approach was used applying the main tenets of constant comparative method (CCM) as described by Strauss & Corbin (23, 24).

Participants
Twelve family members providing care in their homes to four women and six men suffering from mild to moderate stroke, participated in the study. The inclusion criteria for selecting family caregivers were that they were either children, spouses or other relatives who had the main responsibility of providing care to a family member who had survived a stroke 3 to 6 months earlier, and were able to communicate in Farsi.

Participants were recruited among family members of stroke survivors whom the first author had interviewed in an earlier study (3).

The characteristics of the participants are shown in Table 1:

Table 1: Characteristics of participants

Data-collections techniques
Data was collected by semi-structured audiotape in-depth interviews by the first author. The interviews started with a general question: "As a family caregiver, how do you experience providing rehabilitation care to a survivor of stroke at home?"

Then, step by step the interview continued to more specific and directed questions such as
"What are the most important barriers for receiving rehabilitation care?,
"How do you deal with the rehabilitation care at home?"

Probing was performed according to the reflections offered by each respondent and sought to clarify their experiences more thoroughly. Interviews lasted between 45 to 60 minutes each. The interviews were conducted in the stroke survivors' homes. In two cases, a second interview was conducted in order to clarify a question that arose during analysis.

Data Analysis
All interviews and field notes were transcribed verbatim, and analyzed word by word. The transcribed data was analyzed directly after the interview in order to identify ideas, which guided the next interview. The analysis process started with open coding. During the phase of open coding, the researcher group thoroughly read all interviews several times, word by word and line by line, to scrutinize the data in order to discover incidents, facts, key words or phrases expressed by participants in the texts. These became in vivo codes, the labels of the actual verbatim words found in the data (23, 24). Then the codes were compared with each other and raw data in order to find points of similarities and differences as the base for the categories and sub-categories that were developed. These codes outlined properties and dimensions of each category and subcategory. This process resulted in seven main categories. There after, axial coding put the data back together by making connections between categories and subcategories. Thus axial coding refers to the process of developing main categories and their sub-categories (see Table 2).

Table 2: Example of analysis process

In selective coding, the core concept was identified through a process by which all categories were unified around the core category, and categories that need further explication were filled-in with descriptive detail. When new cases did not seem to bring any new information to light, categories were considered to be saturated (26).

Here, the core variable was identified as: "lack of continuity of rehabilitative care", which was clearly observed in all data.

Trustworthiness
The confirmability and credibility of the data was established in four main ways: Firstly, the participants were contacted after the analysis and were given the primary results. Four participants chose to validate their transcripts and a few minor comments regarding the results were made (member check). Secondly, as a further validity check, colleagues and PhD students checked about half of the summaries of transcripts (peer check). Thirdly, all codes, categories and concepts were presented to an experienced researcher who checked the reasonability of these, when the researcher presented them. Fourthly, the Iranian authors prolonged engagement with data during analysis of data. Finally, the Swedish authors checked an English version of the coding and the coherence of the categories.

Ethical considerations
This study has been approved by the Iranian National ethical committee in the Ministry of Health and Medical Education (P/361-31/JUL/2005). All participants received information about the aim of the study and what was expected from them as study participants. They were also informed that their participation is voluntary, and they have the right to terminate their participation any time they want, without giving a reason, along with their right to confidentiality. All participants signed the written informed consent to participation after reading the provided information carefully.

Findings
The core concept was identified as "lack of continuity of rehabilitation care". Seven main categories were identified, three of them related to contributing problems including inadequate knowledge and skills, inappropriate accessibility to rehabilitative services, and inadequate social insurances. Four categories described the ways that family caregivers used to deal with the major concerns; modifying home environment, managing coexisting medical conditions, utilizing nurses' help and, relying on family unity.

Lack of continuity of rehabilitation care that participants expressed seemed to be connected to certain problems such as knowledge and skills deficit, inappropriate access to rehabilitative services and inadequate covering of social insurances. Family caregivers expressed that they had difficulty dealing with these problems that affected their capability to provide adequate rehabilitation care.

Click here for Figure 1: Conceptual map for provision of rehabilitative care for stroke survivors based on family caregivers' experiences

Problems connected to lack of continuity of rehabilitation care

Inadequate knowledge and skills
Family caregivers experienced that due to inadequate knowledge and skill, they were unfamiliar with the type of care they must provide, or the amount of care needed. They experienced that they did not know when they needed community resources, how to access them and how to best utilize the available resources. They said that they were faced with inadequate knowledge and skills to provide care for the survivors and to help them to deal with the situation. They experienced lack of energy in dealing with the family member who had survived stroke and did not have the energy to find out the different possibilities for help and support.

"I am faced with an unexpected event suddenly and because of inadequate information and skills related to the stroke, these days I don't know what should I do, I need to know about how to deal with" (Family caregiver 12).

Inappropriate access to rehabilitative services
Participants experienced that stroke survivors were discharged from hospitals without a defined rehabilitation plan in their own homes. The families suffered from long distance to rehabilitation centers and inappropriate transportation. The rehabilitative services were regarded as expensive and not easy to access from home and community. Therefore, stroke survivors and their family caregivers suffered from not receiving suitable rehabilitation services.

"I lost energy and time to provide rehabilitative care for my patient; we are so tired and agitated. If somebody would come to our home to give care and to help us, it would be fantastic" (Family caregiver 5).

"Going far from my home is very expensive and so difficult for me and my family as well as to bring services in our home. I really need to get some equipment and facilities in my place, close to my home, suitable for our incomes." (Family caregiver 11).

Inadequate social insurances
Participants experienced that social insurances did not adequately cover the cost for rehabilitation services, and that they could therefore not use all available public and private rehabilitation facilities in their homes or in the community. Family caregivers expressed also that the lack of assistance to care and insufficient social insurances for covering and receiving services from therapists caused the families a burden.

"The cost of care is an extra expense in our life, and my social insurance doesn't cover most services in the home. If we had more support in advance by social insurances, it would be more helpful and could be more effective" (Family caregiver 10).

Ways that family caregivers used in an attempt to deal with the lack of continuity of care

Utilizing nurses' help
Most participants experienced that nurses were helpful and gave the survivors and the family caregivers' advice that was useful. They also helped the family caregivers by giving them instructions on how to take care of the survivor. Therefore, the family caregivers recommended that all families should have access to nurses' help in the rehabilitative care after stroke.
They regarded nurses to be able to promote healthy lifestyle, advocate available recourses, give nutritional advice, and provide medication and rehabilitative care recommendations, and advice on prevention of stroke relapse. The family caregivers explained that the nurses helped them to improve their situation at home regarding education of medical recommendations and train them in how to manage co-morbidities. Moreover, participants expressed that nurses could bridge the gap between the family and health care providers in order to get continuity of rehabilitation care in their homes.

"Nurses give a sense of support besides care delivering; this is a fact, and I do emphasize that the role of a nurses is vital and important, and we need to use their knowledge and skills which are so useful for survivors and us. During these months I experienced that I have more knowledge to coordinate everything" (Family caregiver 3).

Modifying the home environment
Participants perceived that after the event of stroke, their home environment needed to be changed due to the survivors' physical limitations.

Some of them had changed their home environment to better suit the survivor's needs by making changes that facilitated transfer to toilet, use of walker as well as installing handles in bathroom and toilet, according to health care providers' recommendation and education. They believed that changing the home environment helped both the survivors and the family caregivers to preserve their roles better, provide safety for patients to live an active life and in participating in family life. Family caregivers also experienced that an incompatible home environment caused them to be faced with time-consuming work at home which hindered their work roles and demanded continued care at home.

"We had to change the home environment by using devices such as handle bars in the bathroom, a raised toilet seat , using of special plastic to protect sliding in front of toilet and bathroom and prepare a long-handled brush, a electric toothbrush and an electric razor which therapist recommended" (Family caregiver 9).

Managing coexisting medical conditions
Participants perceived that they tried to manage other symptoms and diseases, like pain, diabetes, cardiovascular disorders, arthritis, headache, lung and urinary infection by receiving recommendation from doctors, nurses and therapists. However, they hoped that formal caregivers, like nurses, could train them to deal with and to be aware of different critical symptoms caused by co-morbidities. They also wanted to be able to report to them occasionally. They expressed that mismanaging of coexisting medical conditions caused delay in receiving rehabilitation care.

"I have tried to manage other diseases such as blood pressure, diabetes and cardiovascular disorders which doctors and nurses recommended, as well as to manage diet and medication alongside stroke and its complications" (Family caregiver 6).

Relying on family unity
Family caregivers experienced that the family tried to preserve family structure, functioning and emotional feelings by receiving help given by members of the extended family and friends according to the Iranian cultural values and Islamic religious beliefs. Religious values influenced the family's role as the most important social foundation. Family caregivers experienced that these predominant moral codes based on Islamic traditions helped them to get support from the members of the extended family, as a unit helping each other. Family engagement was needed to compensate for the lack of continuity of care in their homes.

However, some family caregivers expressed that their family had moved from small cities and villages to Tehran and had lost the resources of extended family and therefore they could not use their support, and both the family's functions and relations were lacking after stroke.

"In Iran, preserving family structure is so important for its members. They try to do whatever they can do, despite some shortage. Therefore, religious beliefs and emotional behaviors help us to cope. This supports us to continue to care for the survivor by self-sacrifice based on cultural essence and to be empowered against events" (Family caregiver 2).

DISCUSSION

The core concept was identified as "lack of continuity of rehabilitation care". Three main categories were identified as the contributing problems; inadequate knowledge and skills, inappropriate accessibility to rehabilitative services, and inadequate social insurances. Four main categories were found regarding the methods that family caregivers use in an attempt to deal with these problems. These were modifying home environment, managing coexisting medical conditions, utilizing nurse's help and relying on family unity.

Family caregivers did what they could to solve the problems by modifying the home environment and trying to manage co-existing medical conditions; here they got some help and advice from nurses, and emotional and practical support from the family unit, but not enough.

Family caregivers were involved in rehabilitation services to reduce physical disturbances, socio-psychological limitations and to promote activities of daily living after discharge from the hospital. Even so continuity of rehabilitation care was regarded to support family caregivers to help survivors to move toward independency. The family caregivers believed that provision of continuous rehabilitation care would help the survivors to come back to life sooner, improve family functions, develop family capacities and decrease family burden. In this line, American National Institute for Health (2009) has emphasized the consideration of continuity of care as an important condition (27).

This study showed that family caregivers were challenged with a deficit of knowledge and skills in dealing with survivors' needs. The participants also perceived that providing information and appropriate education in responding to their needs was valuable to improve the efficacy of these services. Similarly, Bakas et al (28) indicates that American family caregivers need many skills. Cameron et al (29) emphasize that family caregivers rarely receive adequate preparation or support for the caregiver role and, as a result, often experience stress and negative health consequences and rehabilitation outcomes, which threaten the sustainability of home care. This means that family caregivers experienced that they were faced with inadequate and unsuitable training for helping patients. This indicates that there is a need for special educational programs in order to get them well-adapted with their new situation after the stroke and by that decrease the pressure on family members.

Family caregivers suffered from expensive costs of rehabilitative services as they were living far from public rehabilitation centers, not easily accessed from home and community. They also had inappropriate transportation to these services. Similar results are found in Canada, where the variability in the availability of human resources across care environments was found to influence the continuity of care (30). It means that inappropriate access to rehabilitation services and related transportation expenses of stroke survivors risk leading to lack of continuity of care.

The result showed that the lack of insufficient social insurance for covering and receiving services from rehabilitation therapists, causes stroke survivors and their family caregivers to be faced with financial and practical problems in taking the services. Family caregivers described that the provision of social support was regarded as helpful for the survivors in terms of the sense of independency in their family, belonging to others and also to maintaining friendships. The participants in our study believed that social insurance should involve rehabilitative services in the survivors' homes, as well as providing transportation to rehabilitation centers and support home nursing care. In his study, Alaei (31) found that in Iranian home care services, there is an inadequate supportive system, which can lead to suffering from complications and to ineffective recovery processes for both patients and their families. Therefore, depending on the survivor's situation, communication between family caregivers and rehabilitative care providers should be coordinated to improve the rehabilitative care with the goal to achieve self-care and self-management. Here, a discharge plan could be helpful.

As family caregivers were faced with unexpected incidents of stroke, their home environment was not prepared for the new situation after stroke and needed to be changed due to the survivors' condition. However, family caregivers had tried to change their home environment by whatever means they had to better suit the survivor's needs but changing the home environment needs to be compatible with recommendations by experts, Hazler and Barwick (32), meaning that it is important that the environment supports continuing safety and recovery for the survivor.

Our study also showed that the family caregivers were concerned about the potential coexisting medical conditions. Similarity, Bakas et al (28) showed that family caregivers have concerns about managing the symptoms and deficits of the stroke survivor. Care of patients with stroke is often complicated by the occurrence of difficult medical events. These events not only affect the overall wellbeing of the patient but some complications, such as infections, pyrexia, and hypoxia, can have more directly injurious consequences on the brain (33). It seems that these coexisting medical conditions have a substantial effect on the final outcome of patients with stroke and mismanagement of them can delay survivors' recovery.

Social support from relatives was used as the main source of support by the family caregivers of stroke survivors. Even, Donelan et al (34) points out that American family caregivers operate as extensions of the health care system, by performing medical and therapeutic tasks and ensuring care recipients' adherence to therapeutic regimes. However the family unity in Iran is changing as the fundamental supportive system and social insurance system due to urbanization (14) which means that new support systems are needed.

Based on this study result, family care givers regarded nurses in rehabilitative care as important and valuable as coordinators of the team and educators for patients. Participants emphasized that the role of nurses is vital and important, and that development of the nurses' role would help them to improve their situation at home by training them. Adib Hajbaghery and Salsali (35) showed that nurses have demonstrated a strong commitment to change and improve the health care services in Iran. These results indicate that nurses could have a role in easing the continuity of care and in improving the healthcare system. Training family caregivers of stroke patients is essential for nurses to facilitate individual care, reduce costs and caregiver burden and also improve the psychosocial outcomes in stroke survivors and their family caregivers at one year (36).

Iranian families have tried to maintain their structure and related functions to deal with the event as well as caregivers who are an essential part of health care services. Although, providing care for such patients is a big burden for them (9, 19) and urbanization has weakened the bonds for somel families (14). This means that there is a need to develop a continuity of rehabilitative care that is based on the needs of those suffering stroke and their families.

CONCLUSION
This study illustrates how lack of continuity of rehabilitation care affects the family caregivers' situation. This lack was partly compensated by the strong family unity as a part of Iranian cultural values and Islamic religious beliefs to preserve family structure and its functions during the event.

Family caregivers need continuity of rehabilitative care besides that of their family, to enable access to care and they need support from adequate social insurances and increased access to rehabilitation care. Undergoing rehabilitation at home gives people the advantage of practicing skills and developing compensatory strategies in the context of their own living environment, by training and helping family caregivers and stroke survivors in terms of modifying the home environment and managing coexisting medical conditions. Here, nurses can have an important role by helping the family caregivers with education and training. However, to get the whole picture of experiences of the process of rehabilitative care, there is a need to explore the experiences of professional caregivers in rehabilitative care after stroke.
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