Summary of main findings
This study produced a reliable scale to measure Malaysian stroke patients’ or caregivers’ satisfaction towards post-stroke care services, which consisted of only 10 items compared to the original HomeSat component of the SASC19. The new scale, SASC10-MyTM had two factors which measured satisfaction with support services after discharge and satisfaction with discharge transition services.
Item SASC8 (i.e. “I have felt neglected since I left hospital”) was dropped after considering its factor loading, internal consistency of the scale and its qualitative meaning. Feeling neglected could be unsuitable for use in the local sociocultural context. Malaysia has a collectivist culture where family support and cohesiveness during illness is something expected (19). Among East Asian culture, the practice of filial respect and care to parents is seen as an obligation of adult children (20). Respondents may have interpreted the feeling of being neglected as neglect from family members rather than from healthcare professionals. Neglect by family members could be interpreted as a social taboo as it is considered something shameful and could bring dishonour to the family (21), making patients or caregivers reluctant to disclose such feelings of neglect. Hence, their responses to this item would no longer be appropriate to represent their satisfaction towards stroke care services.
The two factors of the SASC10-MyTM would be better for determining patient and caregiver satisfaction towards community-level stroke services as it has further defined satisfaction into the transition care services and post-discharge services. The overall Cronbach alpha coefficient was 0.830. Provision of transition care services and post-discharge services are not fully integrated in the local healthcare system. Transition care services depended a lot on hospital discharge practices, whereas post-discharge services were largely independent from the hospital inpatient services. Post-discharge services could include hospital-based outpatient services, health clinic services, private community-based services or non-governmental organisations. Hence it will be important to determine the level of patient or caregiver satisfaction towards these two very different levels of care.
Unfortunately, the overall response from post-stroke patients regarding the post-stroke care services was not favourable. Individual item responses showed that most respondents were not satisfied with provision of information regarding how to obtain rehabilitation equipment and supportive services upon discharge from hospital. This was also seen in their dissatisfaction regarding home preparations for discharge and support equipment (see Figure 3). This reflected the overall process of discharge transition which deemed unsatisfactory. Gaps in discharge transition contributed to patients not receiving the support that they needed after discharge (15).
In contrast, satisfaction towards post-discharge services were better (40.9%). However, this still shows a great room for improvement in availability and accessibility to post-discharge services. In particular, respondents were not satisfied because they did not know who to contact in the event of new problems arising (see Figure 2). Currently most hospitals do not provide contacts to a reference staff to patients in case of problems after discharge. Patients and caregivers are often told to seek help from the emergency department or nearest health clinic in case of problems. However, this was not practical in some instances when there are questions, which did not warrant a clinic or hospital visit. Examples of questions that may arise could include issues with medications or appointments. Ideally, an emergency contact person who could liaise with the primary team should be available to the patients. This could be a dedicated nurse or medical assistant who would know the patient’s background and provide guidance regarding what to do. Lack of an emergency contact could be due to insufficient resources. Providing the contact number of the ward or clinic could be helpful to provide support during office hours.
Provision of emotional support was satisfactory for most respondents. This could be because of the non-reliance of patients and caregivers on healthcare providers for emotional support. Again, a feature of collectivist culture, patients and caregivers tended to rely on their closer social support network of family members, neighbors and friends for emotional support. However, it might be good for healthcare providers to identify those with poor social support as these patients or caregivers may benefit from emotional support.
In studies conducted among patients who were discharged home to the community, patients and caregivers rated satisfaction with outpatient services ranged from 49% to 85% in European countries (4,22,23). This highlights the fact that satisfaction with outpatient services is a challenge across most public healthcare services, regardless of either higher, low- or middle-income countries.
Post-stroke care delivery has been mostly haphazard (24) and suboptimal (25), particularly in countries which provide universal health coverage. As stroke is a continuing spectrum of complications resulting from multiple risk factors or chronic NCDs, the post discharge or longer-term care requires multiple interventions over long periods of time, delivered across different sectors. Hence, the need for subsequent management at community level to be coordinated and continued at appropriate care facilities once they are discharged.
New and important aspects of this study
The post stroke or longer-term care has faced many challenges despite the advances in medical expertise and health technology. Ensuring optimal care to empower stroke survivors to cope with residual disabilities as well ensuring secondary prevention has been the focus of improving healthcare service delivery (3,26,27). As such, the evaluation of satisfaction with healthcare services would provide vital information for all stakeholders on how best to reconfigure existing services to improve access as well as outcomes for stroke survivors and caregivers. To date, there has not been any studies in Malaysia which assessed satisfaction with post discharge stroke care services. Hence, the need to validate the questionnaire for use in the local healthcare system.
We believe our study is a first attempt to develop a tool to assess the Malaysian public outpatient stroke care services at community level in this country, using the SASC19 (Homesat) as reference. As the care for post stroke patients in Malaysia is largely fragmented and non-standardised for most parts of this country, it is necessary to have a tool which can be used as a benchmark with model stroke care services in developed countries for comparison.
The local scenario on post discharge stroke care services falls on the responsibility of the public primary healthcare services. The care delivery for post stroke patients provides an additional burden on the NCD work load at these healthcentres. Currently, post stroke care plans just focuses on provision of NCD care i.e. management of stroke risk factors, with minimal coordination of the rehabilitation aspects for a stroke survivor ((15,28,29). Hence, the SASC10-MyTM may be used by the primary healthcare team to identify areas for improvement in the current post stroke care service delivery at community level.
Strengths and Limitations of this study
Patients enrolled for this trial were purposively recruited at baseline, from a healthcentre-based cluster randomised controlled trial involving ten public primary care healthcentres across Peninsular Malaysia. Respondents were at least six months after stroke, and resided at home.
The respondents for this study consist of post stroke patients and/or their caregivers who provided a wide range of perceptions on the services received.
The recall bias in the responses provided by the patients or their caregivers are long term survivors in community dwelling. The location or institution whereby the respondents based their satisfaction with the outpatient treatment received after discharge from tertiary centre / acute treatment was not specified, i.e. public or private healthcare facility.
Missing data for some of the variables was unavoidable as community dwelling post discharge patients in Malaysia were inhomogeneous in terms of treatment received during and after stroke episode.
Implications for future research
Confirmatory factor analysis can be done to determine whether the 2-factor construct is superior to the 3-factor construct.
Evaluation of post discharge stroke care service provision linked to the source of post discharge or longer-term stroke care accessed by the patients i.e. public or private healthcare facilities should also be undertaken.