Social work support and unmet social needs in life after stroke: a cross-sectional exploratory study

The present exploratory analysis is part of the MAS-I-study, a cross-sectional exploratory study of post rehabilitation patient needs and caregiver burden after stroke [11]. The dataset represents a first step in a more complex project, aiming to gather information on unmet medical and social needs in the long-term aftercare for stroke in the outpatient setting. Briefly, stroke patients from two previous acute clinical studies were invited 2–3 years after the initial event to attend the outpatient department for a comprehensive interview and examination carried out by a trained neurologist and social worker using validated standard measures of self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden [11]. No financial incentive was provided, but transport was organized and paid for, if necessary. Written consent was given before participation; details are provided in the section “Declarations”. The study received ethics committee and data protection approval by the institutional review board of Charité University Medicine, Berlin (reference EA1/183/14) and was registered on clinicaltrials.gov (NCT02320994).

In the current study we explored the patients’ contact with social workers, assessed by self-reported previous support and its association with the social situation assessed with the German Nikolaus-score [26] (unmet social needs are indicated by sum score values of 17 or below, ranges from 0 to 25 (no unmet social needs), see Additional file 2 for an unofficial translation by the authors). Furthermore, we explored the quality of life assessed with the EuroQoL (EQ-5D-3 L, index ranges from 0 (poor quality of life) to 1) [28], the caregiver burden with the German Burden Scale for Family Caregivers (Häusliche Pflegeskala, HPS-k, ranges from 0 to 30 (high caregiver burden)) [29], the overall function and degree of disability (modified Rankin Scale (mRS), ranges from 0 (no symptoms) to 6 (death)) [30] and one item (item 8 - participation in activities of daily living) from the Stroke Impact Scale [31]. To explore the scope and content of the tools we also assessed the patients using components of the Stroke Survivor Needs questionnaire [27]. This questionnaire does not work as a score, but contains additional information not provided by the Nikolaus-score, with fourteen questions inquiring about unmet social needs like need for help in the household and personal care, in managing finances and applying for social benefits (listing of the fourteen items and dividing into seven domains see Table 1). Furthermore, the validated scales were integrated in the interview and conversation between social worker and patient. We recorded standardized individual recommendations issued by a stroke neurologist and social worker after an in-depth analysis of the current care according to national and international clinical guidelines [10]. We used these recommendations as a surrogate measure of current gaps in the ongoing care of these patients. If unmet social needs were identified, the patient received a recommendation for further social work intervention which was performed in the stroke service point of the Berlin Stroke Alliance [32]. This intervention however, did not form part of the study. Recommended social work interventions address non-medical needs in primary health care [33]. This includes access to out-patient nursing care (including general home care, palliative care, family care and short term home care), home adaptation and aids (including changes around the house, emergency house calls and other aids at home), help with mobility and transport (including driving services for recreation or provision of companions for people with decreased mobility). Furthermore social work intervention implies the provision of information about out-patient and in-patient rehabilitation and help with applications for benefits (specific to the German health care system) [34].

Relevant licences were obtained for scores which were not available licence-free.

Statistics were calculated using SPSS 24.0 software (IBM, Armonk, NY). Standard descriptive statistics were chosen depending on the scaling and distribution of the variables. Associations between the assessments were calculated using Pearson’s χ² and Mann-Whitney U depending on the scaling of the variables as specified in detail in the result Tables. A two-sided significance level of α = 0.05 was considered. No adjustment for multiple testing was applied in this exploratory study.

Overall 57 patients were included in MAS-I [11]. As Table 1 shows, all patients were assessed for social needs using the Nikolaus-score with 10 patients needing socio-economic support according to the score results. Of these patients, nine received the recommendation to be supported by a social work intervention due to low Nikolaus-score. Another twelve patients, although with Nikolaus-score values higher than the cut-off value of 17 points, were referred to a social worker intervention. This is because the recommendations for social work intervention made by the clinician were not only based on the Nikolaus-score, but also on the interview by the social worker that included questions on the stroke survivor’s needs. The additional information provided by the patient while answering the questionnaire and the informal check of the social worker whether preconditions for social benefits were given, were the trigger to recommend social work intervention. The above mentioned 12 patients in Table 1 expressed unmet needs in the domain “information about application for social benefits, managing finances and reemployment required”. Twenty-four patients were not referred to a social worker, although they showed needs in the questions from the Stroke Survivor Needs questionnaire. These needs are not currently covered under the legal entitlements in Germany, unless individual preconditions have been met and some elements of care may not be covered by nursing care or personal care insurance.

While age and sex (see Table 2) was similarly distributed in patients with values above and below 17 points in the Nikolaus-score (median 19), the degree of disability and dependence in daily activities according to the modified Rankin Scale was higher in patients with less than 17 points in the Nikolaus-score (median 3 vs. 2, p = 0.018). Patients with low Nikolaus-score (< 17 points) furthermore reported a more accentuated negative impact of stroke on their life (Stroke Impact Scale, median 21 vs. 34, p = 0.002), and a lower quality of life (EQ-5D-3 L index value, 0.70 vs. 0.89, p = 0.02) (all see Table 2). In addition, the nearest relatives of the patients with low Nikolaus-scores (< 17 points) reported a higher caregiver burden (HPS-k, median 21 vs. 6, p = 0.053, Table 2) compared to caregivers of patients with higher Nikolaus-scores. Nikolaus-score was positively associated with net income (Spearman r = 0.39, p = 0.008), with a mean net income of €1300 Euro in patients below 17 points versus €2225 Euro in patients with higher score values in the Nikolaus-score (Table 2), signifying more unmet social needs in patients with a higher economic strain.

Accordingly, patients receiving a recommendation for intervention by a social worker were more severely affected by their stroke (median mRS 3 vs. 1, p = 0.13, median Stroke-Impact-Scale 24 vs. 34, p = 0.014, Table 3). Thus, more severely affected patients (mRS > 2) had a lower Nikolaus-score (median 19 vs. 21, p = 0.013) and more often received recommendations for social work interventions (57% vs. 28%, p = 0.035, Table 4) compared to less affected patients.

During the interviews, all patients were questioned about previous contact with social workers. Table 5 shows, that seventeen patients (30%) had never received professional social support. If social support was provided, the consultation happened mostly during the stay in acute hospital or neuro-rehabilitation institution (37 of 39 patients, see Additional file 1). Only 11% (n = 4/36) reported long-term support after discharge, and 61% (n = 22/36) have not been informed in-detail about their situation and perspectives (for missings, detailed content and quality of social support see Table 6). Patients who received neuro-rehabilitation treatment (n = 45/55) were more likely to be contacted by a social worker than patients without neuro-rehabilitation treatment (35/45 [78%] vs. 1/10 [10%], p < 0.001, additional results without table).

Patients who received social support were more severely affected by stroke than patients not receiving social support (median mRS 2 vs. 1, p = 0.058, Table 5). In 16 out of 37 (43%) patients who had contact with social workers, further social work intervention was recommended during the stay in the acute hospital or rehabilitation center due to unmet social needs. Table 5 shows that average age, sex distribution, years of education and net income were similar in patients receiving social support or not. We did not see pronounced differences in the prevalence of unmet needs between patients with or without previous contact with social workers.