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The Importance of Patient Interest in Stroke Rehabilitation

• Hanne Kaae Kristensen,
• Malin Tistad,
• Lena von Koch,
• Charlotte Ytterberg

ten

• Published: June 10, 2016
• https://doi.org/10.1371/journal.pone.0157149

Figures

Abstract

Objective

To investigate the perceived needs for wellness services by persons with stroke inside the first year afterwards rehabilitation, and associations betwixt perceived affect of stroke, involvement in decisions regarding care/treatment, and having health services needs met.

Method

Information was collected, through a mail survey, from patients with stroke who were admitted to a university hospital in 2012 and had received rehabilitation afterward discharge from the stroke unit. The rehabilitation lasted an boilerplate of ii to 4.six months. The Stroke Survivor Needs Survey Questionnaire was used to assess the participants' perceptions of involvement in decisions on care or treatment and needs for health services in 11 problem areas: mobility, falls, incontinence, pain, fatigue, emotion, concentration, retentiveness, speaking, reading, and sight. The perceived bear on of stroke in eight areas was assessed using the Stroke Impact Scale (SIS) 3.0. Eleven logistic regression models were created to explore associations between having health services needs met in each problem area respectively (dependent variable) and the contained variables. In all models the contained variables were: age, sexual practice, Sis domain respective to the dependent variable, or stroke severity in cases when no corresponding SIS domain was identified, and involvement in decisions on care and treatment.

Results

The 63 participants who returned the questionnaires had a mean historic period of 72 years, 33 were male person and 30 were female person. Eighty pct had suffered a balmy stroke. The number of participants who reported problems varied between 51 (eighty%, mobility) and 24 (38%, sight). Involvement in decisions on intendance and handling was establish to be associated with having health services needs met in half-dozen problem areas: falls, fatigue, emotion, memory, speaking, and reading.

Conclusions

The results highlight the importance of involving patients in making decisions on stroke rehabilitation, equally information technology appears to be associated with meeting their health services needs.

Citation: Kristensen HK, Tistad G, Koch Lv, Ytterberg C (2016) The Importance of Patient Involvement in Stroke Rehabilitation. PLoS ONE 11(6): e0157149. https://doi.org/10.1371/journal.pone.0157149

Editor: Terence J. Quinn, University of Glasgow, UNITED KINGDOM

Received: February 20, 2016; Accustomed: May 25, 2016; Published: June x, 2016

Copyright: © 2016 Kristensen et al. This is an open access commodity distributed under the terms of the Artistic Commons Attribution License, which permits unrestricted use, distribution, and reproduction in whatever medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper.

Funding: The authors admit Danish Regions and the Danish Health Cartel for funding the study. The funders had no role in study pattern, datacollection and assay, decision to publish, or preparation of the manuscript.

Competing interests: The authors accept alleged that no competing interests exist.

Introduction

Stroke is the nearly common crusade of morbidity and long-term disability in Europe [1]. Information technology often imposes a considerable modify on people'due south lives and is an economic burden to social club [1]. Stroke survivors oftentimes experience concrete, cognitive, social, and emotional consequences subsequently stroke [i–3]. The healthcare offered after stroke aims to ease and back up restoration of functioning and/or adaptation to disability, and to enable people with stroke to achieve optimal social integration [3–5]. Therefore, rehabilitation is an important part of these services. However, stroke survivors notice themselves left with substantial activity and participation limitations and/or in demand of daily help. They report long-term unmet needs for rehabilitation of up to viii years afterward a stroke [6–10].

To develop loftier-quality healthcare for stroke survivors it is essential to have a common agreement of the needs, experiences, and priorities of those living with the results of stroke [2, 11,12]. Reviews of self-reported problems experienced by stroke survivors and their carers place strong accent on the social aspects of re-establishing erstwhile identities and resuming previous occupational, family unit, social and recreational roles [4]. Many stroke survivors and carers experience social isolation and worsening relationships with their spouses and family [13]. In addition, emotional issues, typically long-standing depressions and anxiety are mutual [13]. Even so, rehabilitation services seem to be aimed by and large at regaining function and, less, at enabling social participation and regaining quondam roles and responsibilities [11,14–17]. A survey on the prevalence of unmet needs of community-domicile stroke survivors beyond the United kingdom of great britain and northern ireland 1–5 years later on the stroke was conducted. The survey showed that nearly half of the survivors reported one or more unmet needs related to problems with mobility, pain, fatigue, retentivity, and concentration [9]. Other studies have found that stroke survivors also report unmet needs related to activities of daily living (ADL). These needs are: social participation, mobility aids, dwelling accommodation, housing, accessing financial support and benefits, information, rehabilitation and transport between ane and xi years subsequently stroke [2, 7].

Clinical do based on the best available bear witness is recommended to provide high-quality service at all levels of the Danish rehabilitation organisation [four]. Prove recommends that rehabilitation should be designed every bit a goal-directed, multidimensional, interdisciplinary, and cooperative practice [3, four, 18]. International rehabilitation literature recognises a growing appreciation of including patients' experiences and perspectives in rehabilitation practice. A person-centred do stresses patients' engagement, the interpersonal relationship between patient and wellness professionals, and ethical values [19–21]. Studies have shown that increased engagement and patient participation atomic number 82 to greater satisfaction for both patient and provider. It also leads to increased adherence to health professionals' recommendations and improved functioning [19, 22]. This is consequent with a patient, person, or client- centred perspective, which is divers as a joint practice, aimed at enabling cooperation between patients and health professionals. A person-centred perspective entails showing respect, involving and empowering the patients in shared controlling, acting with and for them to meet their needs, and recognising patients' experiences and knowledge [xix]. Thus, infirmary and metropolis policies in Kingdom of denmark are now stressing implementing structures and health policies to increase the extent to which the rehabilitation services are based on shared decision-making and partnerships between patients and health professionals [4, 23].

Stroke rehabilitation that is based on the stroke survivors' needs, experiences, and priorities requires extensive knowledge and skills to capture and integrate the stroke survivors' perspectives. Few studies have explored the relationship betwixt patients' engagement in controlling on rehabilitation, their perceived functioning, and needs of healthcare [2].

The purpose of this study was to explore the perceived needs for health services by people with stroke inside the first year after rehabilitation. Moreover, test of associations between perceived impact of stroke, involvement in decisions on intendance/treatment, and having health services needs met were undertaken.

Materials and Methods

The study used a survey to investigate patients' rehabilitation experiences within Danish stroke rehabilitation practise. Data generation was based on the interdisciplinary rehabilitation offered in the dissimilar pathways, which comprise the full general Danish healthcare service for adult stroke patients in hospitals every bit well equally in customs-based settings. Setting A was an in-patient stroke unit located in an acute ward at a academy infirmary; Setting A2 was an outpatient neurological rehabilitation department located in the same infirmary (Setting A); Setting B was an in-patient rehabilitation hospital, exclusively for patients with neurological disorders; and Setting C was a local community-based rehabilitation setting. Stroke rehabilitation was organised and so the individual patient could follow one of v dissimilar pathways: pathway ane included settings A and A2; pathway ii settings A, A2 and C; pathway three settings A and B; pathway 4 settings A, B and C; and pathway 5 settings A and C. Regardless of the combination of settings, the length of rehabilitation inside the pathways consisting of three settings lasted approximately four to 4.six months. The rehabilitation within the pathways that consisted of two settings lasted approximately two months. This characteristic was seen regardless of the combinations of settings, see Fig ane.

Participants

Inclusion criteria were adults anile 18 or over with a stroke diagnosis who had participated in a rehabilitation programme subsequently being discharged from the acute stroke unit at a academy hospital in Denmark betwixt May 2012 and December 2012.

All participants underwent interdisciplinary rehabilitation in each of the units included in the rehabilitation pathways. Most participants were discharged from the acute stroke unit within a week and received further rehabilitation in an in-patient rehabilitation hospital exclusively for patients with neurological disorders; and the local community-based rehabilitation setting.

The therapists who offered the rehabilitation were all familiar with Danish national show-based guidelines, which they, according to the Danish Board of Health [4], were expected to utilize in their daily practice.

Process

The occupational therapists and physiotherapists in the stroke unit consecutively considered patients for inclusion in the study and informed the first author of potential participants. The first writer then extracted information from the medical records of the units in the rehabilitation pathways. This was done to place patients who had participated in rehabilitation later on being discharged from the stroke unit. The survey instruments were pilot tested to strengthen the validity of the included questionnaires in a Danish context. Stressing variation concerning age, sex, length of rehabilitation and rehabilitation pathway, 13 of the included 131 participants were chosen. The 13 participants were contacted by phone and consented to private interviews in their own homes later finish of rehabilitation by the first author using two questionnaires with closed questions. During the interviews, the participants were asked to consider the aim of the survey and to evaluate the applicability of the questionnaires. All 13 participants considered the questionnaires relevant, satisfactory and understandable in relation to the stroke rehabilitation they had undertaken. The two self-administered questionnaires were and then delivered by mail service to the remaining 118 participants. The postal service included an information and consent letter, and a stamped, addressed envelope for returning the information. Voluntary participation was stressed. Confidentiality in the study was guaranteed and the participants were told they could withdraw at any stage. No reminders were sent. In accordance with Danish legislation on research ethics the research question, design and methods of the study did non require blessing by the Research Ideals Committee. The Danish Data Protection Agency, j. no. 2007-41-0836 and the Danish Health and Medicines Authority approved the study. The report followed the directions of the Danish Board of Health.

Data collection

Information was collected on perceived impact of stroke, perceived involvement in decisions on intendance/treatment, and perceived health service needs between May 2012 and August 2012. The survey was undertaken betwixt one to 12 months later the participants' rehabilitation had ended.

Data on sex, age, hemisphere lesion, and stroke severity assessed with the Scandinavian Stroke Scale (SSS) [24, 25] on admission to the stroke unit was extracted from the medical records at the stroke unit retrospectively by the first writer. The score range of the SSS is 0–58; scores of 0–25 represent severe, 26–42 moderate and 43–58 mild stroke.

The self-perceived impact of stroke was assessed using the SIS S3.0 [26]. The musical instrument assesses perceived affect of stroke in eight areas: strength, hand function, ADL, mobility, advice, emotion, retentivity and thinking, and participation. The SIS comprises 59 items scored from 1 to 5. An algorithm is used to create total scores of 0–100 for each area where 0 represents maximum impact and 100 no impact. Sister besides includes a separate question about perceived recovery assessed by a scale from 0–100 where 0 stands for no recovery and 100 is fully recovered.

To assess the participants' perceptions of involvement in decisions on care and treatment, and healthcare needs later on stroke, the Stroke Survivor Needs Survey Questionnaire (SSNSQ) was used [9]. The SSNSQ consists of 44 airtight questions with response categories to appraise level of modify or needs for healthcare in the following domains: information virtually stroke; health subsequently stroke; everyday living; work and leisure; family, friends and back up groups; finances and demographic data. In addition, there is one question about involvement in decisions about care and treatment. In the present report, the question about involvement in decisions regarding care and handling, as well as 11 questions nigh needs for healthcare were used. The questions about needs dealt with met/unmet needs regarding 11 problems areas: mobility, falls, incontinence, pain, fatigue, emotion, concentration, retention, speaking, reading, and sight. For participants noting a problem in a specific trouble area, three response choices were offered: need met, demand met to some extent, need unmet. For participants wanting to be involved in decisions about care and treatment, iii response choices were offered: involved, involved to some extent, not involved. The participants were asked to consider all rehabilitation related to their stroke when completing the SSNSQ.

Statistical Assay

In all analyses the 3 response choices in the SSNSQ were collected into need met versus demand met to some extent or need unmet, and involved versus involved to some extent or not involved. To analyse differences between participants with met and unmet needs concerning the 11 problem areas, the Mann-Whitney U-test was used for numerical information and the Chi-squared test for chiselled data. The level of significance was fix at p≤0.05.

Eleven logistic regression models were created to explore associations between having health services needs met with regard to each problem area respectively (dependent variable) and the independent variables. In all models the independent variables were: age, sexual practice, Sister domain corresponding to the dependent variable, or stroke severity in cases where no corresponding SIS domain was identified, and involvement in decisions on intendance and handling. Both stepwise forrard and stepwise backward selections were used where variables with p≤0.05 were entered and those with p≥0.10 were removed. The Statistical Analyses Systems (SAS)® System 9.three, SAS Institute Inc., Cary, NC, USA was used for the statistical analysis.

Results

In total, 156 consecutive patients were considered for inclusion in the study of which 25 patients were excluded: five were deceased, two declined participation and 18 were not referred for farther rehabilitation from the acute stroke unit. Questionnaires were sent to the remaining 131 stroke survivors; 70 men and 61 women, aged 25–99, with a mean age of 72. 60-three participants answered and returned the questionnaires. The mean historic period of those who answered the questionnaires was 72 years with a range from 25 to 96 years. 30-three of these were men and 30 were women. Of the study participants, 80% had suffered a mild stroke, median SSS score 52. Thirty-one had right sided hemisphere lesions, 25 had a left sided, and vii had lesions in both hemispheres. The mean age of those non returning the questionnaires was also 72 years (range 43–99 years). They were equally divided concerning sex and hemisphere lesions and in the group of stroke survivors who did not return the questionnaires, 55% had suffered a balmy stroke.

Table ane shows the characteristics of participants with met and unmet needs concerning the 11 problem areas categorized with respect to the independent variables, and p values from the univariate analyses. In all problem areas except pain, most of those experiencing a problem reported unmet needs. Participants who felt they had been involved in the decisions regarding their care and treatment were more probable to report having wellness services needs met apropos seven problem areas: incontinence, pain, fatigue, emotion, concentration, memory, and speaking.

Results from the logistic regression analyses are shown in Table two. The stepwise forward and the stepwise backward selection resulted in the aforementioned final models. Involvement in decisions regarding care and treatment was establish to exist associated with having wellness services needs met concerning vi problem areas: falls, fatigue, emotion, memory, speaking, and reading.

Discussion

Stroke is a common, serious, and disabling wellness problem, and rehabilitation is a major part of patient intendance [iii]. Fifty-fifty after having received rehabilitation there are indications that some stroke survivors continue perceiving unmet needs for healthcare [7]. To our noesis, this is the outset study that has explored and identified an clan between stroke survivors' involvement in decisions on intendance and treatment and having health services needs met apropos six trouble areas: falls, fatigue, emotion, memory, speaking, and reading.

In all problem areas except pain, a majority of those experiencing problems reported unmet needs. This is in line with the results of a previous survey on the prevalence of unmet needs in customs-abode stroke survivors 1–5 years after stroke [nine]. Our results show that unmet needs occur during the showtime year after stroke. One plausible explanation may exist that there is a lack of concurrence between the needs perceived by people with stroke and those identified by health professionals [27–xxx]. Some unmet needs in the present study might non accept been identified by health professionals and targeted for intervention. It is also possible that participants had become aware of needs after the rehabilitation had ended.

The findings from the logistic regression models indicating high odds for having health services needs met in trouble areas related to falls, fatigue, emotion, memory, speaking, and reading when the person had been involved in decisions about intendance and handling, might indicate that patients' involvement could be an important contributing factor for a favourable outcome subsequently stroke. In the present report, it is not known whether strategies for involving patients in, for case, shared decision-making or mutual goal setting, were applied [three]. Shared decision-making has been described as a core ingredient in patient-centred care and a reconciliation between respect for a patient's autonomy and the power of healthcare professionals [31]. Goal setting is besides used to support patients' autonomy and to improve patient motivation, adherence and ameliorate satisfaction with rehabilitation [32]. In line with this, stroke survivors' involvement in different aspects of decision-making such every bit goal setting and translation of goals into therapy plans has previously been reported as empowering and highly appreciated whereas authoritarian attitudes and controlling processes had a negative influence [33–35]. However, people with stroke are not taking part in decisions most their intendance to the extent expected [22, 36–38] and the extent to which patients are involved in decision-making is in the hands of professionals equally they lead the goal setting processes [39–42]. Nevertheless, an increased involvement past the person with stroke in decision-making and goal setting was achieved after training therapists in engaging patients in shared decision-making [43]. Such grooming might be needed to achieve a more than shared goal setting process. Despite the lack of cognition nigh specific methods used in the present study, it seems possible to involve patients in decisions about their care and rehabilitation in ordinary clinical practice which might influence to what extent health service needs are perceived to be met.

No associations were found betwixt involvement in decisions on care and treatment and having wellness services needs met in problem areas related to mobility, incontinence, hurting, concentration, and sight. A systematic review of qualitative studies [33] stressed that physical activity in particular is valued by stroke survivors. Walking and mobility in particular were seen as important forms of physical rehabilitation [33]. Walking and mobility take also been shown to be predictors of returning to pre-stroke levels of participation [44, 45]. Though the majority of the participants in the current study had suffered a balmy stroke, they might non take resumed full concrete recovery. Consequently, they might take experienced lack of independence and control over their daily lives regardless of whether they had been involved in the decisions on their care and treatment. The results on incontinence and sight issues might indicate that these functions had not been assessed and identified as problem areas, or might have been present already pre-stroke, and therefore not emphasised in the stroke rehabilitation. Conversely, having health services needs met regarding reading problems, an activeness that might be related to sight, was associated with involvement in decisions on care and treatment. A believable explanation for these results could exist that reading bug might be more easily detected and communicated by the person with stroke. The lack of association betwixt involvement in decisions regarding care and treatment and having health services needs met apropos pain may exist explained by the fact that pain afterwards stroke can be hard to care for satisfactorily and has a meaning negative effect on health-related quality of life [46].

A strength of the nowadays report is the self-reported data, which gives a voice to those who are concerned. All the same, the results should exist interpreted with caution bearing in mind that the render rate was 48% and that a larger proportion of those not returning the questionnaires had a moderate-severe stroke. As several studies have reported that people with severe impairments or disability after stroke to a larger extent report unmet needs for e.g. mobility and cocky-care [8,47], adaptations, physiotherapy, social life [8,nine,47,48], therapy [ten,11,47,48] and aid with instrumental ADL [10], a higher render rate from people with moderate/severe stroke in the present written report might take affected the findings. Contrary to these studies, severity of stroke or the affect of stroke was in the present study only associated with having health services needs met in ii of the trouble areas, falls and concentration. In the present written report, people with aphasia might also be under-represented, as they may have establish it hard to participate in a survey based on questionnaires. Other limitations are the cross-sectional design equally no firm conclusions about the direction of the clan tin can exist fatigued, the limited sample size and the spread in fourth dimension points to data collection. Future studies would benefit from a larger and more than representative sample.

In determination, we found an association between stroke survivors' cocky-reported involvement in decisions on care and treatment and having wellness services needs met for problems related to falls, fatigue, emotion, memory, speaking, and reading. Every bit many countries have adapted policies and regulations about patient-centred care, in which involvement in conclusion most care and rehabilitation is a core ingredient, the result is highly relevant simply more than studies are needed to further explore the clan between involvement in decision making and experiences of having health services needs met.

Acknowledgments

We would like to thank The Great britain Stroke Association for providing the Stroke Survivor Needs Survey Questionnaire. Moreover, we thank Danish Regions and the Danish Health Cartel for funding the study.

Author Contributions

Conceived and designed the experiments: HKK MT LvK CY. Performed the experiments: HKK MT LvK CY. Analyzed the information: HKK MT LvK CY. Contributed reagents/materials/analysis tools: HKK MT LvK CY. Wrote the newspaper: HKK MT LvK CY.

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Source: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0157149

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