Rehabilitation Needs of Stroke Survivors After Discharge From Hospital in India

Objective To assess the rehabilitation needs of stroke survivors in Chennai, India, after discharge from the hospital. Design Mixed-methods research design. Setting Home-based. Participants Stroke survivors (n=50; mean age ± SD, 58.9±10.5y) and primary caregivers of these stroke survivors (n=50; mean age ± SD, 43.1±11.8y) took part in the quantitative survey. A subsample of stroke survivors (n=12), primary caregivers (n=10), and health care professionals (n=8) took part in the qualitative in-depth interviews. Interventions Not applicable. Main Outcome Measure Rehabilitation needs after hospital discharge. Results About 82% of the needs expressed by stroke survivors and 92% of the needs expressed by caregivers indicated that they had a substantial need for information. The proportion of financial needs reported by the stroke survivors and the caregivers was 70% and 75%, respectively. The qualitative data revealed major gaps in access to stroke rehabilitation services. Service providers identified availability and affordability of services as key problems. Stroke survivors and their caregivers identified lack of information about stroke as major barriers to accessibility of stroke rehabilitation services. Caregivers expressed a tremendous need for support to manage family dynamics. Conclusions The study highlights a considerable unmet need for poststroke rehabilitation services. Given the lack of rehabilitation resources in India, developing an accessible, innovative, patient-centered, culturally sensitive rehabilitation intervention is of public health importance. It is crucial for low- and middle-income countries like India to develop technology-driven stroke rehabilitation strategies to meet the growing rehabilitation needs of stroke survivors.

Stroke is the second leading cause of mortality worldwide 1 and is associated with a wide variety of sensorimotor, cognitive perceptual, and behavioral impairments. 2 These poststroke impairments might limit the ability of stroke survivors to independently perform their activities of daily living. 3 Consequently, they might also restrict effective participation in family and social roles. 4 A significant proportion of stroke survivors therefore become disabled, with profound effects on their quality of life. 5 India, like other low-and middle-income countries, is experiencing a stroke epidemic. 6 During the past 2 decades, the prevalence of stroke in India is estimated to range from 84 to 262 per 100,000 population in rural areas to 334 to 424 per 100,000 population in urban areas. Stroke in India therefore poses a major public health challenge, given the disabling nature of the condition and the growing magnitude of disability.
There is a dearth of information about the rehabilitation needs of persons with disabilities, especially after stroke, in India where persons with disabilities in general encounter several barriers to access rehabilitation services. [7][8][9] One would expect the needs of stroke survivors in India to be substantial and diverse, given the range of disabilities caused by stroke and the existing barriers to access services.
This situation warrants an understanding of the needs of the stroke survivors living in a country like India, since this would assist in developing innovative rehabilitation interventions that are accessible, patient-centered, and culturally sensitive. It could also facilitate the efficient use of locally available resources to meet the rehabilitation needs of stroke survivors in this context. Therefore, this study was undertaken to assess the various kinds of rehabilitation needs among the stroke survivors, and the factors contributing to these needs, using a mixed-methods approach. The primary objective of this study was to assess the rehabilitation needs of stroke survivors in Chennai, India, after discharge from the hospital.

Methods
This formative study used (1) a structured questionnaire with a purposively selected sample of 50 stroke survivors and 50 caregivers; and (2) qualitative in-depth interviews with a subsample of 12 stroke survivors, 10 primary caregivers looking after them, and 8 health care professionals involved in providing stroke rehabilitation services.

Study setting
The study was conducted in T.S. Srinivasan Institute of Neurological ScienceseThe Voluntary Health Services Multispecialty Hospital and Research Center, Chennai, Tamil Nadu, India, between August 2013 and December 2013. Formal ethics approval was obtained from Institutional Ethics committees.

Participant inclusion and exclusion criteria
Persons were eligible for inclusion in the study if they met the following criteria: (1) they were adults; (2) they had recently received a diagnosis of stroke (within the previous 6wk) as defined by the World Health Organization 10 ; (3) the stroke was of minor or moderate severity (ie, score of 1e15 according to the National Institutes of Health [NIH] Stroke Scale [11][12][13] ); (4) they had been discharged from the hospital; and (5) they were residing at home with a primary caregiver. Stroke survivors were excluded if any of the following criteria were present: (1) severe communication problems (scoring >1 in dysarthria and best language component of the NIH Stroke Scale [11][12][13] ); (2) severe cognitive difficulties (scoring >1 in orientation, executive function, inattention, and language components of the NIH Stroke Scale components for cognition [11][12][13] ); (3) severe comorbidities (severe psychiatric illness, hearing loss, vision loss); (4) severe stroke (ie, scoring >15 according to the NIH Stroke Scale [11][12][13] ); and (5) inability to provide consent autonomously.

Quantitative methods
The survey was conducted using a structured needs assessment questionnaire, specifically developed for the study. Its purpose was to identify the rehabilitation needs of stroke survivors and the barriers and facilitators encountered by them in accessing stroke rehabilitation services. Separate questionnaire schedules were developed for stroke survivors and their primary caregivers based on the World Health Organization Disability Assessment Schedule 14 as well as tools used in previous studies. 15 Statistical analysis was completed using STATA 13. a The frequency of each kind of response was calculated separately, and an aggregate score was obtained for each domain. The aggregate score for each kind of response in a domain (ie, the aggregate score of "small," "moderate," "large," and "very large" need) was then converted into proportions of "total needs" for each of these domains.

Qualitative methods
Separate topic guides with open-ended questions and prompts were developed for stroke survivors, their primary caregivers, and health professionals. The in-depth interview process ended when a saturation point was reached. The purpose of the in-depth interviews was to gain a comprehensive understanding of the experiences of the stroke survivors and their primary caregivers in relation to accessing stroke rehabilitation services and their rehabilitation needs after stroke. All the interviews were audiorecorded with consent from the respondents.
The qualitative data were transcribed verbatim and translated into English. Transcribed data were then analyzed using the framework approach. 16

Demographics
Using hospital records, we identified 99 stroke survivors. Thirteen (13.1%) of them did not survive after hospital discharge. Twentyone (21.2%) could not be contacted, and 15 (15.1%) resided far from the hospital. In total, 50 stroke survivors and 50 primary caregivers linked to them were selected to participate in the study. Almost all participants were living within a 20-to 30-km radius of the hospital. The demographic and clinical characteristics of the participants are shown in tables 1 and 2.

Quantitative results
All study participants reported needs in every domain incorporated in the questionnaire. None of the participants mentioned not having any rehabilitation needs. Figures 1 and 2 show the proportion of total needs for each domain reported by the stroke survivors and caregivers. The most important need for both stroke survivors and primary caregivers was related to information about "stroke and stroke rehabilitation service." About 82% of the needs expressed by stroke survivors and about 92% of the needs expressed by caregivers in this domain indicated that they had a substantial need for information. Financial needs and support was the second most important domain for participants. The proportion of needs reported by the stroke survivors and the caregivers in this domain was nearly 70% and 75%, respectively.

NIH National Institutes of Health
The other important rehabilitation needs prioritized by both the stroke survivors and their caregivers were those related to the management of symptoms after stroke, rehabilitation services, and support in the community. The proportion of needs expressed by the stroke survivors and caregivers in these domains approximately ranged from 55% to 65%. Caregivers expressed that they need to be looked after by other family members and the community while they provided care and support to the stroke survivors. Sixty-eight percent of the responses from caregivers were related to this domain. About 50% of the needs expressed by the study participants were related to the stroke survivors' psychological needs and needs related to transfers and mobility. Both stroke survivors and their caregivers felt that stroke survivors require assistance to deal with their poststroke psychological issues and mobility problems.
The needs expressed by both the stroke survivors and caregivers for the rest of the domains were less than 50%. There was no statistically significant difference between the needs expressed by stroke survivors and their caregivers in any of these domains.

Qualitative results
Results from the qualitative in-depth interviews agreed with and complemented findings from the quantitative survey.
Gaps in access to stroke rehabilitation services Findings from the in-depth interviews helped investigators in deriving a framework (fig 3) for understanding the gaps in access to stroke rehabilitation services and provides reasons for the stroke survivors to have substantial rehabilitation needs. Greater details about the barriers to accessibility of stroke rehabilitation services are provided in supplemental table S1 (available online only at http://www.archives-pmr.org/).

Availability of rehabilitation services
There was a wide gap between the demand and supply of stroke rehabilitation services in Chennai. Findings from the study reveal that there was an acute insufficiency of rehabilitation services for people with disabilities in general, even in a major metropolitan city such as Chennai. Rehabilitation services to assist people with  disabilities were hardly available to the neediest. Health providers interviewed acknowledged that there were only 2 well-known neurorehabilitation centers in the entire state of Tamil Nadu in India. An experienced physiatrist said, "The concept of rehabilitation itself is like quite new to India, I think.we are not used to. this process of rehabilitation; Here and there this has been done, but on very low scale and insignificantly." None of the participants reached a hospital for their stroke straight away. It took a minimum of 2 days for the respondents to find a hospital that could provide treatment and rehabilitation. Most of them reached the hospitals by word of mouth from friends and neighbors. When health professionals were asked about the efforts from the government or private health sector to address this issue, another physiatrist with expertise in evidence-based brain injury rehabilitation said, "I don't think anything substantial that's being done either in terms of primary prevention or treatment. You don't have a all in one stroke treatment and rehabilitation unit as you have in Scandinavian and European countries. So definitely, we are lagging behind in a big big way." Stroke survivors and caregivers reported that the quality of available services was not adequate. In general, many respondents were not satisfied with the services obtained in the hospitals where they were treated for their stroke. A health provider himself explained, "In the country, rehabilitation is almost equal to physiotherapy and physiotherapy is almost equal to passive movements of upper limbs and lower limbs. We don't have a goal-oriented, time-bound program that would aim at functional improvement."

Affordability of services
There is only 1 government-managed general rehabilitation center for persons with disabilities in the entire state, and it is located in Chennai. Although rehabilitation services are free in this facility,  people had to travel long distances and pay for the travel themselves to access these free services. Most often, people who could not afford to travel long distances even within the city and those who did not have the time or the money sought rehabilitation services from the nearest physiotherapy clinic. However, even this unidisciplinary therapy service was not affordable to many of the interviewed respondents. This was especially the case in poor families, when the breadwinner of the family was affected by stroke, or both. One caregiver said, "Only with his earning, our family is running. We don't have any other support and it is very difficult to be in this situationewhat to do? I am clueless. I have to go for work. I should try and do any work that is available. It's just what God has in store for me." Given the unexpected onset of stroke, respondents said they were not prepared and often unable to organize resources for managing the problems of individuals affected by stroke within their family. Priority was given to immediate medical treatment, and most funds were spent for acute stroke treatment, which was usually expensive. Subsequently, the families ran out of funds to continue postacute rehabilitation services. An occupational therapist explained, "If a patient has a stroke, he has to take up all the .. medical expenditures on his own. When accessing a particular hospital they will be admitted in the ICU, and other medical care, for that itself they pay 1 or 2 lakhs, when it comes to rehabilitation, they may not be able to afford. Then once the money has dried out, compliance reduces and they don't complete what they started." Availability and affordability of stroke rehabilitation services were the major service level barriers that existed in the study context. Most people who could not afford rehabilitation services remained at home, not being appropriately looked after by family. Poststroke complications and severity of disability increase when stroke survivors do not receive appropriate rehabilitation services. 4 Subsequently, this increases their rehabilitation needs. Given the lack of availability and affordability of stroke rehabilitation services, the rehabilitation needs of the stroke survivors were largely unmet, and the demand for available and affordable stroke rehabilitation services becomes substantial.

Information and knowledge barriers
Lack of information and knowledge about stroke and stroke rehabilitation services was identified as a major barrier to accessibility that existed among the stroke survivors and their family. Lack of awareness about stroke, stroke-related disability, and rehabilitation often concealed the overt demand for rehabilitation services. None of the stroke survivors, caregivers, and family members interviewed were able to identify the warning signs of stroke and seek immediate treatment for it. Most of them felt that the symptoms of stroke would resolve after rest or sleep. Most stroke survivors and the caregivers were not able to pinpoint a cause. When a stroke survivor was asked about the cause for his stroke, he said, "The doctors used to tell me frequently to check my blood pressure, but I used to tell him, 'That and all will come and go sir.' But now only, I am realizing that how BP affects; nobody told. I don't know that I will get stroke if I drink." When stroke survivors and their family were asked whether they received any information about stroke from the health care providers at hospitals where they were treated, most said that they had not.
Many stroke survivors and caregivers did not know there was a rehabilitation center located within the hospital where they received treatment for their stroke. Most also felt that the onus is on the stroke survivors and their family to gain information about the problem and on ways to manage it. A young stroke survivor expressed, "No . so far no one has given me information or given me any treatment.The situation isdOnly I must do something for myself to improve." Health providers felt that ignorance about stroke and the inability to accept stroke-related disability among the stroke survivors and their family were major problems in communicating with them. One health provider said, "The difficulty is always in explaining the reality to the individual and family members that uh. the neurological function that is lost cannot be remediated by anymore intervention; that's the felt need for most of the patients. Nobody comes here saying that I have hemiplegia, make me walk with the quadruped; they say I am not able to use upper limb, set it right. That's the biggest challenge that we face." From the perspective of the service receiver, findings from the qualitative interviews suggest that lack of awareness and knowledge about stroke and the process of stroke recovery among stroke survivors and their families was an important barrier to bridging the gaps in access to stroke rehabilitation services. This was an important reason for the stroke survivors and their families to demand more information about stroke and stroke-related services (supplemental table S2, available online only at http://www. archives-pmr.org/). Support for the caregivers Support needs of caregivers came up as a major concern for the caregivers themselves and also for the stroke survivors. Caregivers and family members reported considerable change in their family roles and responsibilities when stroke occurred in a family member. Caregivers required appropriate support to physically and mentally manage these abrupt changes in roles and family dynamics (supplemental table S3, available online only at http:// www.archives-pmr.org/).

Discussion
This study identified a widespread need for rehabilitation services among stroke survivors and their caregivers in India. Information needs and financial support needs were the 2 major domains expressed by the participants. The information and support needs of caregivers were much greater compared to those of the stroke survivors. This explains the compelling need to equip caregivers as much as possible so that they can fully support the stroke survivors.
Findings from the qualitative interviews also revealed major gaps in access to stroke rehabilitation services in the study context. Overcoming barriers to the provision of stroke rehabilitation services, especially availability and affordability, appears to be essential to meet the rehabilitation needs of stroke survivors. However, the information and knowledge needs of stroke survivors and their caregivers and families should also not be underestimated while attempting to develop strategies to meet the rehabilitation needs of stroke survivors. Unless stroke survivors are informed about their need for rehabilitation and the services available for it, appropriate utilization of any kind of stroke services cannot be expected.
The demographic characteristics of the stroke survivors in this study were very similar to those in previous epidemiologic studies on stroke conducted in India. 17 To our knowledge, this is the first needs assessment study of this sort carried out in India. Indeed, the authors were able to identify only 2 other such studies 18,19 carried out in low-and middle-income countries. These studies 18,19 also found that information was the topmost priority for the stroke survivors. Although the context is very different, findings in our study were similar to those in similar studies 15,[20][21][22][23][24] conducted in high-income countries.
This study has 2 major strengths. First, it used a mixedmethods design, which enabled us to obtain a richer understanding of rehabilitation needs. 22 Second, the assessment was not restricted to stroke survivors alone; caregivers and health care providers were also included. These 2 strategies helped us gain a better understanding of the key factors that contribute to the gaps in accessibility to stroke rehabilitation services.

Study limitations
The study also has 2 major limitations. First, participants were all recruited from a single hospital, which limits the generalizability of our findings. Second, the sample size for the quantitative needs assessment was small, given that there was only 1 hospital that provided permission for recruitment. Similar studies in the future could involve more recruitment centers and include rural areas with poorer access to health services.

Conclusions
Our study shows that there is a substantial unmet need for poststroke rehabilitation services in Chennai, India. Lack of awareness about stroke and of ways to manage stroke-related disabilities appears to be the primary reason for this. The financial implication of providing therapeutic care and support for stroke survivors becomes an additional burden to both stroke survivors and their families. Given the lack of resources for rehabilitation in India, developing an innovative, multidisciplinary, patient-centered, culturally sensitive rehabilitation intervention is of high public health importance. This could help bridge the gap in accessibility and potentially meet the rehabilitation needs of the stroke survivors in India. Results from this needs assessment had contributed significantly toward the development of a smartphone-enabled caregiver-supported educational intervention for management of disabilities after stroke in India. The detailed description of the intervention can be found elsewhere. 25 Supplemental Stroke survivors prefer to get the prescribed medicines from private pharmacies in/near the hospital paying for it. Stroke survivors with minor stroke usually manage to travel (which they pay for) to a government hospital to get these medicines for free. Relatives usually get these medicines for the patient from pharmacies.
Ensuring that the prescribed medicines for stroke treatment are available in most of the government and private pharmacies in both urban and rural pharmacies Individuals have to pay for the medicines prescribed by doctors in private hospitals.
Prescriptions for certain medicines/drugs can be provided by medical officers in the government primary health centers, which can then be taken to government tertiary hospital pharmacies.
Some of the drugs prescribed are available only in pharmacies near the hospital within cities, and may not be available in rural pharmacies. Some prescribed medicines are available for free from government pharmacies, but patients require a prescription from a doctor in a government tertiary hospital.
Provision of essential drugs for stroke treatment in primary health centersdmaking it available The administrative processes involved in getting the medicines from a government tertiary hospital are cumbersome.
Streamlining the administrative processes and reducing administrative delays to ensure patient compliance The government pharmacies are located in government tertiary hospitals in major cities. Stroke survivors have to travel in person to collect these free drugs and medicines.
Waiving the charges for drugs and medicines for stroke treatment through insurance coverage Individuals have to make travel arrangements and fund their travel to get these medicines. Access to therapy and rehabilitation services during postacute phase Professional fees for every specialist, such as physiotherapist, occupational therapist, speech therapist, and psychologist, who meets the stroke survivors and their family.
Family members usually pay these charges. If they don't have funds, they will borrow money or sell some of their valuables for treatment. Some might request the patient to be seen in the general ward itself.
Provision of government health insurance schemes that would cover the cost of stroke rehabilitation and therapy services Specialist consultation fees for neurologists, therapy fees (on an hourly basis), and fees for using therapy devices such as ultrasound and electrotherapy are usually expensive. Access to appliances and orthotics Orthotics and rehabilitation appliances such as wheelchairs, crutches, braces, and positioning supports are not readily available.
Most of the stroke survivors do not know about the devices and appliances that can prevent disability and promote participation. Given the cost, stroke survivors have to manage their problems/ disability without these orthotics and appliances.
Increasing the availability of orthotics and appliances for stroke rehabilitation in major hospitals and pharmacies There are very few centers for producing these devices, and appliances are located in major cities. Hence they are usually expensive.
Developing infrastructure for manufacturing orthotics and rehabilitation appliances through government health facilities and pharmacies (inhouse orthotic units) Therapists who are aware of the orthotic manufacturers and appliances for stroke rehabilitation usually prescribe these. Many do not.
Manufacturing different kinds of orthotics and appliances for physical rehabilitation. Not just mobility or ambulatory aids.
Most available orthotics and appliances promote walking and mobility.
Mainstreaming the supply of orthotics and rehabilitation appliances through government health facilities and pharmacies Appliances for assisting a stroke survivor with everyday activities, such as brushing, bathing, or toileting, are not available. There is a fee for specialists to visit the patient and take measurements to make some of these devices, or for the patient to travel to the place where these devices are manufactured.
Waiving the charges for orthotics and appliances through insurance coverage. Increasing the availability of government-led rehabilitation services (free). Waiving the cost of services through insurance coverage.
Community-based rehabilitation services for persons with disability generally are not available to those most in need of these services and who cannot afford to pay for them. Hospitals do not have any followup pathways for patients who have been treated for stroke in their hospital.

1532.e4
Supplemental Individuals and families do not identify or recognize the warning signs of stroke, thereby delaying the process of acute stroke treatment and care, which, in turn, could worsen the brain damage caused by a stroke.
Affected individuals and families realize that a stroke has occurred only after the symptoms have worsened; before then, it was considered as general body fatigue, fever, or tiredness.
Provision of information or a mass awareness campaign to the individuals affected and their families about the warning signs of stroke to identify and initiate early treatment

Lack of awareness about the golden hours for treatment
There is delay in identifying the occurrence of stroke. This identification happens only when the patient is taken to a tertiary hospital. Early identification and management of stroke could limit brain damage and life-threatening situations for the stroke survivor.
Family members identify some kind of illness and weakness and take the patient to a nearest local clinic. Based on the advice from the doctor in the local clinic, the family members decide whether the individual affected should be taken to a tertiary hospital or can be managed back at home with the drugs recommended by the doctor at the clinic. Stroke treatment and rehabilitation service providers (government and private) could inform the public or individuals affected about the importance of appropriate treatment and rehabilitation after stroke, during their acute hospital treatment and recovery, through their health care providers. In most rural areas, people seek the help of traditional healers. In some urban areas people also seek traditional healing, siddha, and Ayurvedic treatment, believing that these can "cure" stroke.
They could also conduct stroke awareness campaigns about their services through various communication media and create awareness about appropriate services for stroke among the public.
(continued on next page) Change in family dynamics Role changes and role reversals in the family are very common when a family member is affected by stroke. Sometimes, the breadwinner has to stop working and support the stroke survivor and other members of the family. Sometimes, the one who was supporting the children and the breadwinner has to start work and earn money. Sometimes, 1 person has to manage many roles, supporting the stroke survivor, family, or children and also earning money for the family.
In a nuclear family, if there is only 1 person to provide support (eg, husband or wife), this person takes over all roles and performs these as far as he/she can (role reversals and role change).
Providers can counsel the family members and caregivers and help them prepare for a change in family dynamics.
In a joint family, other family members share various roles to support both the stroke survivors and the family (role sharing)

Availability of the caregivers
If there is only 1 person to take over the role of the stroke survivor and also to support him/her, it becomes very difficult for that person to provide good care and support to the stroke survivor. The family usually moves into a crisis situation until other family members or friends come forward for support.
It becomes a substantial burden for the caregiver to manage various different roles effectively. Over a period of time, he/she may become depressed and physically frail.
Providers could inform the family members about the possibilities of role changes and discuss ways to effectively manage crises and family disputes.
If more than 1 person is available to support, the women (wife, daughter) in the family usually take care of the stroke survivor. Men often assist in hospital follow-ups and also support the family financially. Absence of clarity in one's new role leads to role clashes. For example, a woman might find it difficult to transfer an obese patient to wash them or assist in shifting them from one place to another. In many families, care and support provided to the stroke survivors is indirectly proportional to their age. Young stroke survivors receive substantially more support because they are young and have the capacity to earn or provide support to the family in the future. More elderly stroke survivors do not receive sufficient support.
Many elderly stroke survivors are supported by a paid helper who might not know them very well, or not as well as other members of the family. Alternatively, some elderly stroke survivors are moved to old-age homes where some support services are readily available.