One third of all patients included in the MAS-I study reported to have had no contact with social workers. Possibly, contact with social workers in the acute phase of stroke was not always recognized, perhaps because of being overwhelmed with information or impaired cognition (32). Stroke patients are prone to reporting bias concerning services received (33). Ten patients of the presented study, who received rehabilitation, reported no contact to social workers. In Germany, application for rehabilitation is usually connected to a social worker intervention, so these ten patients were not aware of the social support they received. On the other hand, they may not have understood this support as social support, and would perhaps have required more support in other domains e.g. preparation for their return to home. Therefore, the social work service - especially in the acute - phase should be adapted to the patient’s situation which means a proper introduction of the consulting social worker, enough time and adapting the information load to the patient’s cognitive abilities.
The data demonstrates that most of the social worker contact takes place during the stay in hospital or rehabilitation. Unfortunately, our questionnaire did not differ between social support in hospital and rehabilitation. In the acute phase, hospital social support usually assists in applying for rehabilitation. In the second phase, social support assists in discharge, aiming to organize nursing services for severely affected patients. For this reason, less affected patients did not receive as much social consultation. Even if there was no need for rehabilitation or nursing service, unmet social needs remain; like getting advice on how to obtain benefits, information on driving after stroke, contact details of medical doctors and self-help groups, help with arranging housekeeping and dealing with the disability in the context of relationships and sexuality (34) (35) (36) (37). Patients need social work services to begin early in acute treatment and continue after discharge (38). Our data indicates that unfortunately there was scarce social support after discharge in the long-term. Services like the outpatient stroke service point in Berlin (34) may provide a model to address this problem.
Our data suggests that previous social worker contact does not reduce social needs in the aftercare (described by the patients themselves as well as evaluated by the neurologist). This might be because initial social worker contact is mainly in hospital and rehabilitation takes place to organize rehabilitation and nursing home care in more severely affected patients. Independent of the severity of their stroke, patients in the long-term have unmet (or yet to be identified) social needs that have not been covered by their previous contact with asocial worker. This emphasizes that in the years after stroke, health care providers should regularly screen for unmet social needs. Over 50% of patients and their relatives visit social services >6 months after the initial event. This takes place when patients returned home or to a nursing home, adaption to this new everyday life has happened and unmet needs are discovered (Cameron & Gignac, 2008) (34). Our data demonstrates that patients with unmet needs evaluated by the Nikolaus-Score in the long-term were more severely affected and had a lower income. Furthermore, they have a lower quality of life and a higher caregiver burden. Caregivers often experience stress and poor mental and physical health (39), which can lead to poor rehabilitation outcome of stroke survivors (40) (41).
In the MAS-I study several patients received a recommendation for social worker intervention by the stroke neurologist, but were not classified by the Nikolaus-score as being in need of social help. Methodically, an internationally validated screening tool for social needs after stroke is still missing. The Nikolaus-score is widely used in Germany but does not seem to be an appropriate up-to-date tool. First, it is not validated for stroke patients but for a general geriatric population (26) (26). Second, the items regarding the housing situation are outdated: warm water, heating, toilets or telephone sockets are basic standards nowadays, but are weighted as important items in the score, falsely improving the result. Third, the Nikolaus-score combines items like “the flat is one-story, spacious and accessible for wheelchair” which aggregates complex accessibility issues. Fourth, these items might not be relevant if the stroke patient is not wheelchair bound, but the score-point counts nevertheless. The recommendations for social intervention made by the clinician included the results of the Nikolaus-score but took also into consideration information given by the patient during the interview, which our social worker had not asked about in the standardized questionnaires. Furthermore, we considered 14 of the 40 items of the stroke survivor needs questionnaire, which were seen as relevant for addressing social issues. Twenty-four patients were not referred to a social worker although showing needs in these components of the stroke survivor needs questionnaire. These needs are not currently covered under the legal entitlements in Germany, unless individual preconditions have been fulfilled and some elements of care may not be covered by personal care insurance.
It would be desirable to develop an evaluation tool for social needs considering personal contextual factors of the ICF (International Classification of Functioning). This includes relevant personal factors to describe the background of an individual's life and living (42). Moreover, such a questionnaire should focus on contemporary topics relevant for stroke patients, such as inpatient and outpatient rehabilitation, medical treatment, medical rehabilitation, therapeutic or preventive services, questions around medical and personal care insurance, social legislation, pensions and disability benefits and information on self-help groups (34). Not only the unmet needs should be evaluated but also the legal preconditions based on which social benefits can be applied for. A literature review shows that longer-term problems of stroke patients concern social and emotional consequences (25) (43). Even mildly affected patients seek psychological support as anxiety after stroke is common (44) (45). The emotional as well as the social situation should be recorded since multiple studies reveal an association between depression and low-social support (46).
Relatives of stroke patients play an essential role in providing care. It is important to include the caregivers` situation in the evaluation. So far there is no standardized procedure in Germany when to provide support to caregivers concerning follow-up care for patients (47), even though many suffer from psychological and physical stress (48). Two thirds of the clients contacting stroke service points in Berlin are caregivers (34); this reveals the need to involve the nearest relative in evaluation and support. In the MAS-I study 24% of the caregivers reported moderate to high levels of stroke-related caregiver burden (11).
Several approaches have been suggested to close the gap between inpatient and outpatient care (49) (50) (51), however, social care has been understudied. An effective primary care-based stroke aftercare service must have a broad focus and must be based on an individual record of unmet needs including social needs (52). Thus far, in the out-patient setting it is difficult to record unmet needs after stroke appropriately. Similar levels of impairment can impact individuals differently, depending on the context, Also the individual resources like personality and caregiver´s support to deal with long-term complications are very different (53) and can lead to comorbidities like depression as well as a low quality of life (54). Patients who receive little information about their situation are more likely to be depressed (55). Low socioeconomic status increases the risk for stroke (55). Socially isolated stroke patients are more likely to have recurrent stroke and have a higher mortality (56). Social needs should be identified to be treated.
Due to a rather small sample size and due to the fact that severely disabled patients and their carers were less likely to attend, we advise to interpret these findings cautiously. On the other hand, a strength of the studied population is its detailed characterization, which allows exploratory analysis.
Conclusions
In the present study we see that only two thirds of stroke patients have contact to social workers. This contact mainly takes place during the in-patient setting. Although they may have had social worker contact previously, patients continue to have unmet needs for long-term aftercare. Forty percent of all patients included in the MAS-I study received the recommendation for social intervention after an in-depth analysis of their situation. Our data suggest that screening tools for unmet social needs as the Nikolaus-score are not appropriate to report the needs holistically. Finally, we saw that unmet social needs were associated with lower quality of life and higher care giver burden.
The findings warrant large prospective, longitudinal studies identifying and validating screening tools for unmet social needs and to develop comprehensive management of unmet social needs to improve medical and social outcomes in stroke.