EMPIRICAL STUDIES
doi: 10.1111/scs.12116
Satisfaction with care and rehabilitation among people with stroke, from hospital to community care Helena Tholin MSc, RPT (Physiotherapy Supervisor)1,2 and Anette Forsberg PhD, RPT (Lecturer)1,3 € € € Family Medicine Research Centre, Orebro County Council, Orebro, Sweden, 2Karla Primary Health Centre, Orebro County Council, € € € University, Orebro, Sweden Orebro, Sweden and 3School for Health and Medical Sciences, Orebro
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Scand J Caring Sci; 2014; 28; 822–829 Satisfaction with care and rehabilitation among people with stroke, from hospital to community care
Background: Despite recent improvements in Swedish stroke care some patients still experience a lack of support and follow-up after discharge from hospital. In order to provide good care according to the National Board of Health and Welfare, systematic evaluations of stroke care must be performed. Quality indicators in the national guidelines could be useful when measuring quality of care in all parts of the stroke care chain. Aim: To investigate how people with stroke experienced their care, rehabilitation, support, and participation from hospital to community care. Method: Qualitative interviews were performed with 11 people in 2009–2010 covering their experiences of care, rehabilitation, support, and participation. The interviews were analysed with qualitative content analysis. Result: The interviewees were satisfied with their hospital care, but reported both positive and negative experiences
Introduction Stroke is a major cause of life-long disability throughout the world. It affects everyday life and quality of life for both the stroke victims and their next of kin. In Sweden, 34 000 people experience a stroke each year, and 20% of them die in the first 3 months (1). Of those who survive, many end up with physical as well as cognitive impairments (2–4). These impairments are associated with restrictions in activities and participation (5, 6), and have a negative effect on quality of life for the stroke survivors and their caregivers (7–9). Earlier research has shown that the most important factors influencing quality of life after stroke are age, depression, and physical outcome (10, 11). Several studies using Correspondence to: € Helena Tholin, Karla Primary Health Care Centre, Orebro County € € Council, Alvtomtagatan 30, 703 42 Orebro, Sweden. E-mail: [email protected]
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of the continuing care. Most of them appreciated intense, specific, and professional rehabilitation, and had experienced these qualities in the rehabilitation they received in most parts of the stroke care chain. Those who received support from the community services expressed satisfaction with the staff, but also felt that autonomy was lost. Several did not feel involved in the health care planning, but instead relied on the judgement of the staff. Conclusion: To ensure high quality throughout the whole stroke care chain, people with stroke must be invited to participate in the care and the planning of care. To offer evidence-based stroke rehabilitation, it is important that the rehabilitation is specific, intense, and performed by professionals, regardless of where the rehabilitation is performed. A changed view of the patient’s autonomy in residential community services should be developed, and this process must start from the staff and residents. Keywords: stroke, quality of care, rehabilitation, patient participation, qualitative approaches, research in practice. Submitted 6 September 2013, Accepted 28 December 2013
questionnaires or registers have shown that better outcome after stroke is associated with higher patient satisfaction with care and rehabilitation (12–15). The International Classification of Functioning, Disability and Health (ICF) (16) can be used as a framework to describe the impact of illness on an individual in terms of health and disability. The ICF provides a possibility to describe not just functioning but also contextual and personal factors. Patients with stroke are often cared for in specialized stroke units, and it is now well known that care in a stroke unit decreases the risk of mortality, dependence, and institutionalization (17). In addition, a Swedish study showed that patients treated in stroke units were more often satisfied with the care than those treated in general wards (13). A Dutch questionnaire study showed that older age, disability, and longer hospital stay were associated with lower quality of life for the patient, but also that high satisfaction with care positively affected the quality of life of both the patient and their next-of-kin © 2014 Nordic College of Caring Science
Satisfaction with care in stroke (18). In a qualitative study Reker et al. (19) showed that patient satisfaction was higher when postacute stroke care complied with stroke guide lines, with the most important dimensions being patient and family education, baseline assessments, discharge planning, family involvement, and monitoring of patient progress. On the other hand, dissatisfaction with care was expressed when an overall unmet care and unfulfilled rehabilitation needs were perceived (15, 20, 21). In a British study (21), a questionnaire was sent to 98 stroke patients 6 weeks after discharge, asking them to assess their satisfaction with different parts of the community-based care. The results showed dissatisfaction with the amount of outpatient therapy, support, and information about services. In all three studies (15, 20, 21), the patients rated their satisfaction or dissatisfaction with care on Likert scales. Despite improvements in Swedish stroke care, the Swedish Stroke Register report that a considerable number of patients still experience a lack of support and follow-up after discharge from hospital (22). Results from follow-up questionnaires at 3 months after stroke in the Swedish stroke register show that 85–95% of patients were satisfied with the hospital care, the rehabilitation, and the follow-up services. Only 63% thought that their support needs were satisfied by the hospital or community services, and more than 50% of those older than 75 years stated that they were dependent on their next-of-kin for help and support. In Sweden, the National Board of Health and Welfare is responsible for the national guide lines for stroke care, including recommendations in the areas of prevention, diagnostics, medical treatment, and rehabilitation (23). The ICF imposes that a wider perspective on disease must be used, not only focusing on impairment. The guidelines therefore include quality indicators that can be used by the health care services to measure parameters of quality of care in all parts of the stroke care chain. Examples of quality indicators where data can be found in patient records include; mortality after stroke, care in a stroke unit, complications during acute stroke care, and disability after stroke. Other quality indicators are more qualitative in character; the patient’s experience of care, rehabilitation, support, and participation through the stroke care chain. In order to explore deficiencies in the stroke care chain, people with stroke must be asked about their experiencies, and allowed to describe these experiencies in their own words. The aim of this study was therefore to investigate how people with stroke, of different ages and health status, experienced the care, rehabilitation, support, and participation in the hospital, primary health care, and the community.
Methods A qualitative interview study was performed in 2009– € 2010 in the county of Orebro, Sweden. © 2014 Nordic College of Caring Science
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Participants Samples of patients who were cared for after a stroke during the first 6 months of 2008 were obtained from the county’s three hospitals. From these samples, patients were chosen from four primary health care centres, situated in both rural and urban areas of the county. A strategic selection was made to get a variation in age, sex, form of housing, and degree of disability. Inclusion criteria was first-time stroke with onset 6–12 months ago. Sixteen potential participants were identified and sent a letter with information about the study. After a week they were telephoned and invited to participate; six of them did not want to participate, and the remaining ten agreed to be interviewed. One of these 10 was later excluded, since it was discovered during the interview that the person could not answer the questions due to cognitive impairment. After these interviews had been conducted, it was decided that there was a lack of experiences from people with more severe stroke-related disability. The samples from the four health care centres did not contain any such individuals, and so professionals from two of the centres were asked about patients with severe stroke-related disability with onset 1 or 2 years previously. Two more participants were identified, and both agreed to be interviewed. Participation was based on informed consent. In total, this study included 11 participants, five women and six men. The study was approved by the Research Ethics Committee of Uppsala (ref: 2009/329).
Interviews Interviews were carried out as conversations based on an interview guide with questions related to the quality indicators in the national guidelines (23), complemented with follow-up questions. The questions in the interview guide were: How does your life look today after having had a stroke? How did you experience the hospital care? How did you experience the care after hospitalization? How did you experience your possibilities to take part in the planning of the continuing care? Did you get any rehabilitation after your onset of stroke? How did you experience the rehabilitation in terms of frequency, intensity, and content? What kind of support have you or your next of kin received since leaving the hospital? Can you describe what kind of support you would have wanted? All interviews were performed by the first author (HT) and took place in the informants’ homes. Each interview lasted 45–90 minutes, and was taped and transcribed verbatim. Analysis. A qualitative analysis was performed, including both manifest and latent content analysis (24); the former as the quality indicators formed the basis for the
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questions, and the latter as the underlying meaning was interpreted in the themes that occurred. The analysis was performed in the following steps: 1 The transcribed interviews were read in their entirety to obtain an overall picture. 2 Preliminary domains were formed based on the quality indicators. All interview data could be sorted into these domains. 3 The interviews were grouped into meaning units; that is, parts of the text with statements with the same general content. 4 Manifest content analysis was used to condense the meaning units into shorter descriptions of the content in every unit. 5 The meaning units were abstracted and labelled with codes. 6 The meaning units were sorted into the domains. 7 Codes with similar content were united into categories. 8 Latent content analysis was used to create themes from the underlying content, illustrated by direct quotes from the text which were intended to show what most people had indicated in the interviews. 9 The trustworthiness of the results was addressed through reflections and discussions between the two authors throughout the analysis procedure. The coding was continually compared with the meaning units and the text in its entirety, to assure conformity.
Results At the time of the interviews, the participants’ mean age was 73 years (SD: 13, range: 49–90). Three of them lived in nursing homes and eight in ordinary housing. Two were working, while the others were retired due to age. Six were married or cohabiting, and the remaining five lived alone. All were born in Sweden. In the interviews, they described the following symptoms remaining after their stroke: weakness in one arm and/or leg, impaired balance, and tiredness. One person used a wheelchair to ambulate, and seven used an assistive device when walking. Time since onset of stroke ranged from 7 months to 26 months. The analysis resulted in four domains that were in accordance with the quality indicators. Each domain contained between three and seven themes, often relating to positive or negative experiences of something (Table 1).
Experience of care Overall all the informants expressed satisfaction with the hospital care. They were satisfied with the nursing care, felt well looked after by the staff, liked the food, and felt safe with the medical care. Some of the informants reported deficiencies in the hospital care even if they were satisfied overall. The nights were described as
Table 1 Domains and themes. The domain ‘Experience of healthcare’ has been divided into three subdomains Experience of healthcare Hospital care Being well cared for Deficiencies in care Municipality Satisfaction with residential facilities Dissatisfaction with municipal care Primary care The district medical centre signifies security Lack of follow-up Participation Confidence in personnel Feeling of not having had any opportunity to participate Gaps in the healthcare chain Loss of autonomy through municipal care Rehabilitation Intensive, individually tailored, professional rehabilitation is appreciated regardless of care provider Too little rehabilitation, requirements too low Support Pleased with the situation, received the support required Lacking support Invaluable support from other people Opportunity to meet others in a similar situation Own responsibility for health Assistive devices provide support Experience of support offered to close relatives
stressful, the staff did not show respect; they would turn the light on and speak loudly. Some would have liked more contact with the physician at the rehabilitation unit, and some lacked psychosocial support during hospitalization. They are unbelievably…skilful and…extremely attentive to everything, I found. No, I think it’s…I can’t complain about anything there…definitely not. (Informant No. 8). ‘Cause it’s maybe something I thought was missing at the start – it’s maybe that…I would have liked having someone to talk to…I mean you feel this mixture of fear and panic, and…well…I know I was getting a prescription for sleeping pills for a while… just so I could relax and stuff like that. It…and I’m not super-receptive either…so that eventually it would have been helpful to have been able to talk through everything… (Informant No. 4). Those who lived in a nursing home placed great importance on the staff and the company of the other people who lived there. Sometimes they felt the staff were stressed and lacking the time to perform tasks such as helping the informants with exercising. When home care support workers were in a hurry, feelings of abandonment could occur. The informants also mentioned that the staff’s level of knowledge about stroke seemed to © 2014 Nordic College of Caring Science
Satisfaction with care in stroke vary; many had good knowledge and empathy, while others knew less about the different kinds of symptoms, which could result in the staff exhibiting fear and insecurity. Dissatisfaction with municipal care was mainly linked to the organization of the municipal care itself. The informants’experience was that the organization came first and that rules had to be followed; for example, the possibilities for rehabilitation were dependent on rules. The care I’ve received has been…just perfect…yes, that’s what I think. It’s like…they scurry around me, the girls here, so I…I sometimes feel I’m, I’m being pampered like a baby here…yeah, that’s for sure. (Informant No. 11). …so then we…two of us and the occupational therapist, we went there on a study visit – we observed, heard a lecture, and were shown around. They had a whole programme…of different types of activities…social activities and other things. So then…the occupational therapist went and sat down and wrote an application…but then she said ‘No, it doesn’t work for you…this day…the daytime rehab is only for people living in their own homes – not for people living in a nursing home’…so we felt we’d been horribly misled… (Informant No. 1). Half of the informants said that they felt secure with their primary health care centre. It was where they turned when they had questions, and they felt secure in knowing that they would be called for follow-up regularly. The other half of the informants were less satisfied. Even if they had been to the primary health care centre they had not understood that this was a follow-up after hospitalization. Some felt that the staff at the health care centre did not care about them, and thought that there was nothing to do anyway. Some of the informants mentioned that they had to contact the health care centre themselves for regular follow-up, and that they would prefer to be called instead. …and if I needed others down there, I’d certainly be able to get an appointment…there’d be no problem. And I did get an appointment right away when I got this thing in my ear…I called them…and they had me come in the same day…so that was certainly good service. (Informant No. 8). Follow-up at the district medical centre? No, I didn’t get any follow-up. No, they didn’t care about me in the slightest…they had a high turnover in physicians there… (Informant No. 5).
Participation Experiences of not being part in the planning of continued care were found, related both to hospital and community care. Some answered that they had not participated in the care or the planning of the continuing © 2014 Nordic College of Caring Science
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care, but did not see any need for this. They were satisfied with the planning and trusted that the staff knew best. On the other hand, there were reports of experiences where the staff decided everything; what time to eat and what time to go to bed, for example. Informants also described that their opinions were not considered at the time of hospital discharge. Some of the interviews lacked information about routines on the hospital ward, and some felt a lack of written information about the illness, as it was difficult to take in all the verbal information. There were deficiencies in the stroke care chain such as missed referrals for rehabilitation. …that they really make sure you receive whatever services you’re supposed to be getting – physiotherapy or whatever…that it doesn’t get overlooked. Because it could just be someone who…doesn’t follow up on their own… (Informant No. 9). Living in a nursing home was partly experienced as losing one’s autonomy. Examples included not being able to choose what and when to eat, and instead being dependent on the staff; and not being able to decide when to see a doctor, but rather being dependent on the nurse arranging the contact. Participation in society could also be affected. One informant felt greatly reduced due to a lack of Internet access at the nursing home they were living in, and experienced that the municipality showed no interest in solving the problem. And then when it was time for me to go home, they wanted me to stay at XXX for a short period. But luckily there was no room…so I got to go home straight away. (Informant No. 6). Yes, it’s almost made me paranoid, I think it’s…an occupational therapist who said I should check out the municipal services website, download some form from there and apply for housing. I felt like I’d been punched in the face…I mean, for her to tell me to get something from the Internet when I can’t even get onto the Internet. (Informant No. 10).
Rehabilitation Most of the informants were satisfied when the rehabilitation was intense, specific, varied, gradually increasing in intensity and was conducted by professional staff. When the rehabilitation staff were encouraging and made the patients aware of their progress, this was also experienced as positive. These factors were mentioned as important regardless of where the rehabilitation took place. The informants reported that they got this quality of rehabilitation in the hospital, in primary health care, and in community outpatient rehabilitation. All informants who were referred to community inpatient rehabilitation after discharge from hospital claimed that the intensity of the rehabilitation was too low. They said that the rehabilitation was unspecific and mostly included walks.
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H. Tholin, A. Forsberg …yeah, I guess occasionally we’d go out and stuff… otherwise we mainly just sat and watched TV. (Informant No. 1).
Support It was clear that the need for support and the form such support took could be experienced in many different ways. Some of the informants did not know what kind of support they would have needed. Others were satisfied with the situation; they either felt they had received the support they needed, or thought they did not need any support. Many said that they were satisfied with knowing who to turn to if they had questions, for example to the hospital, to the primary health care centre, to community care, or to the physiotherapist. One informant lacked support in the process of going back to work after the stroke. Another described a feeling of loneliness in the situation, such as not recognizing oneself in the image of a person with stroke; this person lacked information about being a younger person affected by stroke. Most of the informants mentioned that the support from people around them was invaluable. This included both practical support with daily life, and psychological support, the feeling of someone caring. Younger informants often mentioned their husband or wife as the most important support, while for older persons the children often were the one’s to help the person, arranging practical issues and sometimes also speaking for the older person. It was not only next of kin who were mentioned as giving support, neighbours, colleagues, employers and officers at the Social Insurance Agency were also mentioned as important. Some of the informants said that contact with other persons with stroke was important as a confirmation of not being alone in this situation. Others stated that they were responsible for their own health and hence should manage the situation on their own. Assistive devices can also be seen as support and most of the informants needed some kind of assistive device after their stroke. They all thought that they had got the devices they needed and were satisfied with them. In terms of support to the next of kin, the older informants who had children as next of kin often thought that they had enough support. However when the next of kin was a husband or wife, the informants felt that there had a been lack of support. They thought their anxiety could have been reduced if more information and support had been provided. And…luckily at home my husband was there – otherwise it would never have worked…the first few weeks so… (Informant No. 4). She certainly had been…she was mainly anxious – it certainly wasn’t me…No, it was she who was… but…I don’t think she had much support, because there weren’t many people for her to talk to, really. (Informant No. 7).
Discussion The results of this study show that the participants were satisfied with the hospital stroke care, but there were both positive and negative experiences of the subsequent primary health care and community care. The participants who received support from the community services expressed satisfaction with the staff, but also a feeling of lost autonomy when their everyday lives were influenced by the rules of the organization. Participants appreciated rehabilitation that was intensive, specific, and professional. These qualities were present in the rehabilitation they received at the hospital, from primary health care, and from community outpatient rehabilitation, but the intensity was too low at the community inpatient rehabilitation centres. The interviews made it clear that the need of support was individual; for example, the required support was affected by the individual degree of disability, personality, and life situation. The participants found both formal and informal support to be valuable. Participants experienced having got sufficient support, but those living with a partner thought the support to their partner was lacking. Most informants felt that they had not participated in the care or in the planning of the subsequent care. For some participants this was not a problem, as they trusted the staff to know best, but others had the experience that their opinions were not considered. Participants living in nursing homes expressed having experienced loss of autonomy and lack of participation. This experience has been described elsewhere, not related specifically to stroke. In a Swedish study Persson et al. (25) described three explanations to decreased influence for individuals living in nursing homes; organizational imperatives (e.g. work routines or safety), resource constraints (e.g. lack of time, inadequate staffing), and trivialization of complaints (i.e. declaring a complaint to be trivial, rather than a manifestation of autonomy). Sometimes a ‘local routine culture’ might be maintained, making individuals’ possibility to exert influence considerably small (26). In the present study, a finding was that small issues regarded as important for the individual were sometimes not taken seriously by the nursing home staff or the community organization. The level of satisfaction with hospital stroke care is in good agreement well with the 3-month report from the Swedish stroke register, in which an average of 95% of the people with stroke expressed being satisfied or very satisfied with the hospital care (22). In the same report an average of 63% stated that their need for help and support after discharge was met by the health care and community services, though this mean value varied from 48% to 92% in different parts of Sweden. It thus seems that hospital stroke care is consistent in quality, while the quality of the continuing care is more uneven. This
© 2014 Nordic College of Caring Science
Satisfaction with care in stroke fact puts a greater responsibility on the person with stroke and their next of kin. Other studies have shown deficiencies in post stroke care (21, 27, 28), with the main issues being lack of information, poor knowledge about stroke, insufficient support, and difficulties communicating with the health care system. The informants in the present study highlighted the importance of the staff at the hospital and in community care, which confirms results from other studies (29, 30). Most informants were very satisfied with the rehabilitation they received. High intensity, andprofessional and encouraging rehabilitation staff were mentioned as important factors. Those who had spent a period in community inpatient rehabilitation after discharge from hospital thought the intensity of the rehabilitation was too low on these wards,even though they were supposed to be focused on rehabilitation. People who need to be cared for in a nursing home after discharge are probably more disabled than those who are able to return to ordinary living, but their rehabilitation should still be intense. Although the informants had obtained rehabilitation in different units, they were consistent in their view that the intensity of community inpatient rehabilitation was too low. There is strong evidence that rehabilitation should be individual, task-specific, and intense and it is recommended that stroke patients in the community should have access to specialist therapy-based rehabilitation services (31). An Irish study (32), in which 12 stroke patients were interviewed, showed that the patients would have liked more rehabilitation in the hospital and would have liked their family members to be involved in the exercising. A qualitative Australian study (28) showed that people with stroke did not always understand why they performed certain exercises, and that they lacked information about rehabilitation possibilities after discharge. Different health systems and different rehabilitation routines affect the rehabilitation obtained and the experiences of this, but there is strong evidence for how individual rehabilitation efforts should be performed. Better functional outcomes result in more satisfied patients (12, 14, 15), and all individuals must be given the chance of an optimal rehabilitation. Participation appeared to be a slightly difficult concept to understand, and could be interpreted in different ways. Some informants were dissatisfied because they thought their opinions were not considered, while others did not understand why they should be participating when the staff were the ‘experts’. Lack of information and lack of participation in care or the planning of continuing care seems to be a common experience (21, 28–30). Although there are differences in opinions about participation, a Swedish study (13) showed that patients who had participated in discharge planning were more satisfied with acute stroke care than those who had not.
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Results from an American pilot study suggest that patients with stroke who had verbal and written education with their caregivers, using motivational interviewing techniques, were more satisfied and had better knowledge about stroke compared to a control group (33). To ensure that all details are considered in the planning of care and rehabilitation and nothing is missed, checklists could be used by the professionals before discharge. In our study, measuring the qualitative quality indicators in the national stroke guidelines, an interview study was considered appropriate to get rich information. The possibility for the informants to speak freely about their experiences and the addition of follow-up questions resulted in a deeper understanding of what was experienced as positive and negative in stroke care. The participants represented a wide range of age, sex, living situation, and degree of disability, and they lived in both urban and rural areas. One limitation is that people with aphasia and people with more severe disability living in ordinary housing were not represented in this sample, but on the other hand, the sample included people living in nursing homes. Another limitation is that the informants were of Swedish origin, and people of foreign origin were not represented. Further studies including informants in these categories could give richer information about participation and need for support after stroke. In terms of generalizability, some of the themes that emerged were in good agreement with the report from Riks-Stroke (22), while other themes were not represented because the questionnaire from Riks-Stroke did not address these issues. In conclusion, our findings suggest that to ensure high quality throughout the whole stroke care chain, stroke patients must be invited to participate in their own care and in the planning of their continuing care. This responsibility must be shared by caregivers in all parts of the stroke care chain. One condition for achieving this is wellinformed patients and next of kin, and so written information about routines, health conditions, and the planning of care should always be provided. To meet the expectations of the stroke patients, and to offer evidencebased stroke rehabilitation, it is important that the rehabilitation is specific, intense, and performed by professionals regardless of where it is performed. A changed view of the nursing home patient’s autonomy should be developed, and this process must start from the staff and residents.
Author contributions Both authors were involved in the planning of the study, analysis, drafting of the manuscript. Helena Tholin performed the data collection.
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Ethical approval
Funding
The study was approved by the Research Ethics Committee of Uppsala (ref: 2009/329).
No specific funding was obtained.
References 1 Hallstr€ om B, Jonsson AC, Nerbrand C, Norrving B, Lindgren A. Stroke incidence and survival in the beginning of the 21st century in southern Sweden: comparisons with the late 20th century and projections into the future. Stroke 2008; 39: 10–5. 2 Wilkinson PR, Wolfe CDA, Warburton FG, Rudd AG, Howard RS, Ross-Russell RW, Beech RR. A long-term follow-up of stroke patients. Stroke 1997; 28: 507–12. 3 Barker-Collo S, Feigin VL, Parag V, Lawes CM, Senior H. Auckland stroke outcomes study part 2: cognition and functional outcomes 5 years post stroke. Neurology 2010; 75: 1608–16. 4 Hinkle JL. Outcome three years after motor stroke. Rehabil Nurs 2010; 35: 23–30. 5 Hartman-Maeir A, Soroker N, Ring H, Avni N, Katz N. Activities, participation and satisfaction one-year post stroke. Disabil Rehabil 2007; 29: 559– 66. 6 Gadidi V, Katz-Leurer M, Carmeli E, Bornstein NM. Long-term outcome poststroke: predictors of activity limitation and participation restriction. Arch Phys Med Rehabil 2011; 92: 1802–8. 7 Bauman M, Couffignal S, Le Bihan E, Chau N. Life satisfaction two-years after stroke onset: the effects of gender, sex, occupational status, memory function and quality of life among stroke patients and their family caregivers in Luxembourg. BMC Neurol 2012; 12: 105. 8 Achten D, Visser-Meily JM, Post MW, Schepers VP. Life satisfaction of couples 3 years after stroke. Disabil Rehabil 2012; 34: 1468–72. 9 Gosman-Hedstr€ om G, Dahlin-Ivanoff S. Mastering an unpredictable everyday life after stroke – older women′s experiences of caring and living with their partners. Scand J Caring Sci 2012; 26: 587–97.
10 Sturm JW, Donnan GA, Dewey HM, Macdonell RAL, Gilligan AK, Srikanth V, Thrift AG. Quality of life after stroke, the North East Melbourne Stroke Incidence Study (NEMESIS). Stroke 2004; 35: 2340–5. 11 J€ onsson A, Lindgren I, Hallstr€ om B, Norrving B, Lindgren A. Determinants of quality of life in stroke survivors and their informal caregivers. Stroke 2005; 36: 803–8. 12 Ottenbacher KJ, Gonzales VA, Smith PM, Illig SB, Fiedler RC, Granger CV. Satisfaction with medical rehabilitation in patients with cerebrovascular impairment. Am J Phys Med Rehabil 2001; 80: 876–84. 13 Asplund K, Jonsson F, Eriksson M, Stegmayr B, Appelros P, Norrving B, Terent A, Hulster Asberg K. Patient dissatisfaction with acute stroke care. Stroke 2009; 40: 3851–6. 14 Ekvall Hansson E, Beckman A, Wihlborg A, Persson S, Troein M. Satisfaction with rehabilitation in relation to self-perceived quality of life and function among patients with stroke – a 12 month follow-up. Scand J Caring Sci 2013; 27: 373–9. 15 Tistad M, Tham K, von Koch L, Ytterberg C. Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study. BMC Neurol 2012; 12: 40. 16 World Health Organization. The International Classification of Functioning, Disability and Health, www.who.int (last accessed 29 November 2013). 17 Stroke Unit Trialists’ Collaboration. Organised inpatient (stroke unit) care for stroke. Cochrane Database Syst Rev 2007; 4: CD000197. 18 Cramm JM, Strating MMH, Nieboer AP. Satisfaction with care as a quality-of-life predictor for stroke patients and their caregivers. Qual Life Res 2012; 21: 1719–25. 19 Reker DM, Duncan PW, Horner RD, Hoenig H, Samsa GP, Hamilton BB, Dudley TK. Postacute stroke guideline compliance is associated with
20
21
22
23
24
25
26
27
28
29
greater patient satisfaction. Arch Phys Med Rehabil 2002; 83: 75056. Scholte op Reimer WJM, deHaan RJ, Limburg M, van den Bos GAM. Patients satisfaction with care after stroke: relation with characteristics of patients and care. Qual Health Care 1996; 5: 144–50. Tyson S, Turner G. Discharge and follow-up for people with stroke: what happens and why. Clin Rehabil 2000; 14: 381–92. Riks-Stroke. Annual report 2011, http://www.riks-stroke.org/content/ analyser/Riks-Strokes_report_2011English.pdf (last accessed at 23 June 2013). The National Board of Health and Welfare. National Guidelines for Stroke Care 2009. 2009, The National Board of Health and Welfare, Stockholm. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105–12. Persson T, W€asterfors D. “Such Trivial Matters:” How staff account for restrictions of residents’ influence in nursing homes. J Aging Stud 2009; 23: 1–11. Harnett T. Seeking exemptions from nursing home routines: residents’ everyday influence attempts and institutional order. J Aging Stud 2010; 24: 292–301. Simon C, Kumar S, Kendrick T. Formal support of stroke survivors and their informal carers in the community: a cohort study. Health Soc Care Community 2008; 16: 582–92. White JH, Magin P, Pollack MRP. Stroke patients’ experience with the Australian health system: a qualitative study. Can J Occup Ther 2009; 76: 81–9. Mangset M, Dahl TE, F€ orde R, Bruun Wyller T. We′re just sick people, nothing else: factors contributing to elderly stroke patients’satisfaction with rehabilitation. Clin Rehabil 2008; 22: 825–35.
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Satisfaction with care in stroke 30 Andersson A, Hansebo G. Elderly people’s experience of nursing care after a stroke: from a gender perspective. J Adv Nurs 2009; 65: 2038–45. 31 Scottish Intercollegiate Guidelines Network – SIGN. Management of Patients with Stroke. Rehabilitation, Prevention and Management of
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Complication, and Discharge Planning. A national clinical guideline. 2010, June, http://www.sign.ac.uk/pdf/ sign118.pdf (last accessed 23 August 2013). 32 Galvin R, Cusack T, Stokes E. Physiotherapy after stroke in Ireland: a qualitative insight into the patients’
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and physiotherapists’ experience. Int J Rehabil Res 2009; 32: 238–44. 33 Byers AM, Lamanna L, Rosenberg A. The effect of motivational interviewing after ischemic stroke on patient knowledge and patient satisfaction with care: a pilot study. J Neurosci Nurs 2010; 42: 312–22.
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doi: 10.1111/scs.12116
Satisfaction with care and rehabilitation among people with stroke, from hospital to community care Helena Tholin MSc, RPT (Physiotherapy Supervisor)1,2 and Anette Forsberg PhD, RPT (Lecturer)1,3 € € € Family Medicine Research Centre, Orebro County Council, Orebro, Sweden, 2Karla Primary Health Centre, Orebro County Council, € € € University, Orebro, Sweden Orebro, Sweden and 3School for Health and Medical Sciences, Orebro
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Scand J Caring Sci; 2014; 28; 822–829 Satisfaction with care and rehabilitation among people with stroke, from hospital to community care
Background: Despite recent improvements in Swedish stroke care some patients still experience a lack of support and follow-up after discharge from hospital. In order to provide good care according to the National Board of Health and Welfare, systematic evaluations of stroke care must be performed. Quality indicators in the national guidelines could be useful when measuring quality of care in all parts of the stroke care chain. Aim: To investigate how people with stroke experienced their care, rehabilitation, support, and participation from hospital to community care. Method: Qualitative interviews were performed with 11 people in 2009–2010 covering their experiences of care, rehabilitation, support, and participation. The interviews were analysed with qualitative content analysis. Result: The interviewees were satisfied with their hospital care, but reported both positive and negative experiences
Introduction Stroke is a major cause of life-long disability throughout the world. It affects everyday life and quality of life for both the stroke victims and their next of kin. In Sweden, 34 000 people experience a stroke each year, and 20% of them die in the first 3 months (1). Of those who survive, many end up with physical as well as cognitive impairments (2–4). These impairments are associated with restrictions in activities and participation (5, 6), and have a negative effect on quality of life for the stroke survivors and their caregivers (7–9). Earlier research has shown that the most important factors influencing quality of life after stroke are age, depression, and physical outcome (10, 11). Several studies using Correspondence to: € Helena Tholin, Karla Primary Health Care Centre, Orebro County € € Council, Alvtomtagatan 30, 703 42 Orebro, Sweden. E-mail: [email protected]
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of the continuing care. Most of them appreciated intense, specific, and professional rehabilitation, and had experienced these qualities in the rehabilitation they received in most parts of the stroke care chain. Those who received support from the community services expressed satisfaction with the staff, but also felt that autonomy was lost. Several did not feel involved in the health care planning, but instead relied on the judgement of the staff. Conclusion: To ensure high quality throughout the whole stroke care chain, people with stroke must be invited to participate in the care and the planning of care. To offer evidence-based stroke rehabilitation, it is important that the rehabilitation is specific, intense, and performed by professionals, regardless of where the rehabilitation is performed. A changed view of the patient’s autonomy in residential community services should be developed, and this process must start from the staff and residents. Keywords: stroke, quality of care, rehabilitation, patient participation, qualitative approaches, research in practice. Submitted 6 September 2013, Accepted 28 December 2013
questionnaires or registers have shown that better outcome after stroke is associated with higher patient satisfaction with care and rehabilitation (12–15). The International Classification of Functioning, Disability and Health (ICF) (16) can be used as a framework to describe the impact of illness on an individual in terms of health and disability. The ICF provides a possibility to describe not just functioning but also contextual and personal factors. Patients with stroke are often cared for in specialized stroke units, and it is now well known that care in a stroke unit decreases the risk of mortality, dependence, and institutionalization (17). In addition, a Swedish study showed that patients treated in stroke units were more often satisfied with the care than those treated in general wards (13). A Dutch questionnaire study showed that older age, disability, and longer hospital stay were associated with lower quality of life for the patient, but also that high satisfaction with care positively affected the quality of life of both the patient and their next-of-kin © 2014 Nordic College of Caring Science
Satisfaction with care in stroke (18). In a qualitative study Reker et al. (19) showed that patient satisfaction was higher when postacute stroke care complied with stroke guide lines, with the most important dimensions being patient and family education, baseline assessments, discharge planning, family involvement, and monitoring of patient progress. On the other hand, dissatisfaction with care was expressed when an overall unmet care and unfulfilled rehabilitation needs were perceived (15, 20, 21). In a British study (21), a questionnaire was sent to 98 stroke patients 6 weeks after discharge, asking them to assess their satisfaction with different parts of the community-based care. The results showed dissatisfaction with the amount of outpatient therapy, support, and information about services. In all three studies (15, 20, 21), the patients rated their satisfaction or dissatisfaction with care on Likert scales. Despite improvements in Swedish stroke care, the Swedish Stroke Register report that a considerable number of patients still experience a lack of support and follow-up after discharge from hospital (22). Results from follow-up questionnaires at 3 months after stroke in the Swedish stroke register show that 85–95% of patients were satisfied with the hospital care, the rehabilitation, and the follow-up services. Only 63% thought that their support needs were satisfied by the hospital or community services, and more than 50% of those older than 75 years stated that they were dependent on their next-of-kin for help and support. In Sweden, the National Board of Health and Welfare is responsible for the national guide lines for stroke care, including recommendations in the areas of prevention, diagnostics, medical treatment, and rehabilitation (23). The ICF imposes that a wider perspective on disease must be used, not only focusing on impairment. The guidelines therefore include quality indicators that can be used by the health care services to measure parameters of quality of care in all parts of the stroke care chain. Examples of quality indicators where data can be found in patient records include; mortality after stroke, care in a stroke unit, complications during acute stroke care, and disability after stroke. Other quality indicators are more qualitative in character; the patient’s experience of care, rehabilitation, support, and participation through the stroke care chain. In order to explore deficiencies in the stroke care chain, people with stroke must be asked about their experiencies, and allowed to describe these experiencies in their own words. The aim of this study was therefore to investigate how people with stroke, of different ages and health status, experienced the care, rehabilitation, support, and participation in the hospital, primary health care, and the community.
Methods A qualitative interview study was performed in 2009– € 2010 in the county of Orebro, Sweden. © 2014 Nordic College of Caring Science
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Participants Samples of patients who were cared for after a stroke during the first 6 months of 2008 were obtained from the county’s three hospitals. From these samples, patients were chosen from four primary health care centres, situated in both rural and urban areas of the county. A strategic selection was made to get a variation in age, sex, form of housing, and degree of disability. Inclusion criteria was first-time stroke with onset 6–12 months ago. Sixteen potential participants were identified and sent a letter with information about the study. After a week they were telephoned and invited to participate; six of them did not want to participate, and the remaining ten agreed to be interviewed. One of these 10 was later excluded, since it was discovered during the interview that the person could not answer the questions due to cognitive impairment. After these interviews had been conducted, it was decided that there was a lack of experiences from people with more severe stroke-related disability. The samples from the four health care centres did not contain any such individuals, and so professionals from two of the centres were asked about patients with severe stroke-related disability with onset 1 or 2 years previously. Two more participants were identified, and both agreed to be interviewed. Participation was based on informed consent. In total, this study included 11 participants, five women and six men. The study was approved by the Research Ethics Committee of Uppsala (ref: 2009/329).
Interviews Interviews were carried out as conversations based on an interview guide with questions related to the quality indicators in the national guidelines (23), complemented with follow-up questions. The questions in the interview guide were: How does your life look today after having had a stroke? How did you experience the hospital care? How did you experience the care after hospitalization? How did you experience your possibilities to take part in the planning of the continuing care? Did you get any rehabilitation after your onset of stroke? How did you experience the rehabilitation in terms of frequency, intensity, and content? What kind of support have you or your next of kin received since leaving the hospital? Can you describe what kind of support you would have wanted? All interviews were performed by the first author (HT) and took place in the informants’ homes. Each interview lasted 45–90 minutes, and was taped and transcribed verbatim. Analysis. A qualitative analysis was performed, including both manifest and latent content analysis (24); the former as the quality indicators formed the basis for the
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questions, and the latter as the underlying meaning was interpreted in the themes that occurred. The analysis was performed in the following steps: 1 The transcribed interviews were read in their entirety to obtain an overall picture. 2 Preliminary domains were formed based on the quality indicators. All interview data could be sorted into these domains. 3 The interviews were grouped into meaning units; that is, parts of the text with statements with the same general content. 4 Manifest content analysis was used to condense the meaning units into shorter descriptions of the content in every unit. 5 The meaning units were abstracted and labelled with codes. 6 The meaning units were sorted into the domains. 7 Codes with similar content were united into categories. 8 Latent content analysis was used to create themes from the underlying content, illustrated by direct quotes from the text which were intended to show what most people had indicated in the interviews. 9 The trustworthiness of the results was addressed through reflections and discussions between the two authors throughout the analysis procedure. The coding was continually compared with the meaning units and the text in its entirety, to assure conformity.
Results At the time of the interviews, the participants’ mean age was 73 years (SD: 13, range: 49–90). Three of them lived in nursing homes and eight in ordinary housing. Two were working, while the others were retired due to age. Six were married or cohabiting, and the remaining five lived alone. All were born in Sweden. In the interviews, they described the following symptoms remaining after their stroke: weakness in one arm and/or leg, impaired balance, and tiredness. One person used a wheelchair to ambulate, and seven used an assistive device when walking. Time since onset of stroke ranged from 7 months to 26 months. The analysis resulted in four domains that were in accordance with the quality indicators. Each domain contained between three and seven themes, often relating to positive or negative experiences of something (Table 1).
Experience of care Overall all the informants expressed satisfaction with the hospital care. They were satisfied with the nursing care, felt well looked after by the staff, liked the food, and felt safe with the medical care. Some of the informants reported deficiencies in the hospital care even if they were satisfied overall. The nights were described as
Table 1 Domains and themes. The domain ‘Experience of healthcare’ has been divided into three subdomains Experience of healthcare Hospital care Being well cared for Deficiencies in care Municipality Satisfaction with residential facilities Dissatisfaction with municipal care Primary care The district medical centre signifies security Lack of follow-up Participation Confidence in personnel Feeling of not having had any opportunity to participate Gaps in the healthcare chain Loss of autonomy through municipal care Rehabilitation Intensive, individually tailored, professional rehabilitation is appreciated regardless of care provider Too little rehabilitation, requirements too low Support Pleased with the situation, received the support required Lacking support Invaluable support from other people Opportunity to meet others in a similar situation Own responsibility for health Assistive devices provide support Experience of support offered to close relatives
stressful, the staff did not show respect; they would turn the light on and speak loudly. Some would have liked more contact with the physician at the rehabilitation unit, and some lacked psychosocial support during hospitalization. They are unbelievably…skilful and…extremely attentive to everything, I found. No, I think it’s…I can’t complain about anything there…definitely not. (Informant No. 8). ‘Cause it’s maybe something I thought was missing at the start – it’s maybe that…I would have liked having someone to talk to…I mean you feel this mixture of fear and panic, and…well…I know I was getting a prescription for sleeping pills for a while… just so I could relax and stuff like that. It…and I’m not super-receptive either…so that eventually it would have been helpful to have been able to talk through everything… (Informant No. 4). Those who lived in a nursing home placed great importance on the staff and the company of the other people who lived there. Sometimes they felt the staff were stressed and lacking the time to perform tasks such as helping the informants with exercising. When home care support workers were in a hurry, feelings of abandonment could occur. The informants also mentioned that the staff’s level of knowledge about stroke seemed to © 2014 Nordic College of Caring Science
Satisfaction with care in stroke vary; many had good knowledge and empathy, while others knew less about the different kinds of symptoms, which could result in the staff exhibiting fear and insecurity. Dissatisfaction with municipal care was mainly linked to the organization of the municipal care itself. The informants’experience was that the organization came first and that rules had to be followed; for example, the possibilities for rehabilitation were dependent on rules. The care I’ve received has been…just perfect…yes, that’s what I think. It’s like…they scurry around me, the girls here, so I…I sometimes feel I’m, I’m being pampered like a baby here…yeah, that’s for sure. (Informant No. 11). …so then we…two of us and the occupational therapist, we went there on a study visit – we observed, heard a lecture, and were shown around. They had a whole programme…of different types of activities…social activities and other things. So then…the occupational therapist went and sat down and wrote an application…but then she said ‘No, it doesn’t work for you…this day…the daytime rehab is only for people living in their own homes – not for people living in a nursing home’…so we felt we’d been horribly misled… (Informant No. 1). Half of the informants said that they felt secure with their primary health care centre. It was where they turned when they had questions, and they felt secure in knowing that they would be called for follow-up regularly. The other half of the informants were less satisfied. Even if they had been to the primary health care centre they had not understood that this was a follow-up after hospitalization. Some felt that the staff at the health care centre did not care about them, and thought that there was nothing to do anyway. Some of the informants mentioned that they had to contact the health care centre themselves for regular follow-up, and that they would prefer to be called instead. …and if I needed others down there, I’d certainly be able to get an appointment…there’d be no problem. And I did get an appointment right away when I got this thing in my ear…I called them…and they had me come in the same day…so that was certainly good service. (Informant No. 8). Follow-up at the district medical centre? No, I didn’t get any follow-up. No, they didn’t care about me in the slightest…they had a high turnover in physicians there… (Informant No. 5).
Participation Experiences of not being part in the planning of continued care were found, related both to hospital and community care. Some answered that they had not participated in the care or the planning of the continuing © 2014 Nordic College of Caring Science
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care, but did not see any need for this. They were satisfied with the planning and trusted that the staff knew best. On the other hand, there were reports of experiences where the staff decided everything; what time to eat and what time to go to bed, for example. Informants also described that their opinions were not considered at the time of hospital discharge. Some of the interviews lacked information about routines on the hospital ward, and some felt a lack of written information about the illness, as it was difficult to take in all the verbal information. There were deficiencies in the stroke care chain such as missed referrals for rehabilitation. …that they really make sure you receive whatever services you’re supposed to be getting – physiotherapy or whatever…that it doesn’t get overlooked. Because it could just be someone who…doesn’t follow up on their own… (Informant No. 9). Living in a nursing home was partly experienced as losing one’s autonomy. Examples included not being able to choose what and when to eat, and instead being dependent on the staff; and not being able to decide when to see a doctor, but rather being dependent on the nurse arranging the contact. Participation in society could also be affected. One informant felt greatly reduced due to a lack of Internet access at the nursing home they were living in, and experienced that the municipality showed no interest in solving the problem. And then when it was time for me to go home, they wanted me to stay at XXX for a short period. But luckily there was no room…so I got to go home straight away. (Informant No. 6). Yes, it’s almost made me paranoid, I think it’s…an occupational therapist who said I should check out the municipal services website, download some form from there and apply for housing. I felt like I’d been punched in the face…I mean, for her to tell me to get something from the Internet when I can’t even get onto the Internet. (Informant No. 10).
Rehabilitation Most of the informants were satisfied when the rehabilitation was intense, specific, varied, gradually increasing in intensity and was conducted by professional staff. When the rehabilitation staff were encouraging and made the patients aware of their progress, this was also experienced as positive. These factors were mentioned as important regardless of where the rehabilitation took place. The informants reported that they got this quality of rehabilitation in the hospital, in primary health care, and in community outpatient rehabilitation. All informants who were referred to community inpatient rehabilitation after discharge from hospital claimed that the intensity of the rehabilitation was too low. They said that the rehabilitation was unspecific and mostly included walks.
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H. Tholin, A. Forsberg …yeah, I guess occasionally we’d go out and stuff… otherwise we mainly just sat and watched TV. (Informant No. 1).
Support It was clear that the need for support and the form such support took could be experienced in many different ways. Some of the informants did not know what kind of support they would have needed. Others were satisfied with the situation; they either felt they had received the support they needed, or thought they did not need any support. Many said that they were satisfied with knowing who to turn to if they had questions, for example to the hospital, to the primary health care centre, to community care, or to the physiotherapist. One informant lacked support in the process of going back to work after the stroke. Another described a feeling of loneliness in the situation, such as not recognizing oneself in the image of a person with stroke; this person lacked information about being a younger person affected by stroke. Most of the informants mentioned that the support from people around them was invaluable. This included both practical support with daily life, and psychological support, the feeling of someone caring. Younger informants often mentioned their husband or wife as the most important support, while for older persons the children often were the one’s to help the person, arranging practical issues and sometimes also speaking for the older person. It was not only next of kin who were mentioned as giving support, neighbours, colleagues, employers and officers at the Social Insurance Agency were also mentioned as important. Some of the informants said that contact with other persons with stroke was important as a confirmation of not being alone in this situation. Others stated that they were responsible for their own health and hence should manage the situation on their own. Assistive devices can also be seen as support and most of the informants needed some kind of assistive device after their stroke. They all thought that they had got the devices they needed and were satisfied with them. In terms of support to the next of kin, the older informants who had children as next of kin often thought that they had enough support. However when the next of kin was a husband or wife, the informants felt that there had a been lack of support. They thought their anxiety could have been reduced if more information and support had been provided. And…luckily at home my husband was there – otherwise it would never have worked…the first few weeks so… (Informant No. 4). She certainly had been…she was mainly anxious – it certainly wasn’t me…No, it was she who was… but…I don’t think she had much support, because there weren’t many people for her to talk to, really. (Informant No. 7).
Discussion The results of this study show that the participants were satisfied with the hospital stroke care, but there were both positive and negative experiences of the subsequent primary health care and community care. The participants who received support from the community services expressed satisfaction with the staff, but also a feeling of lost autonomy when their everyday lives were influenced by the rules of the organization. Participants appreciated rehabilitation that was intensive, specific, and professional. These qualities were present in the rehabilitation they received at the hospital, from primary health care, and from community outpatient rehabilitation, but the intensity was too low at the community inpatient rehabilitation centres. The interviews made it clear that the need of support was individual; for example, the required support was affected by the individual degree of disability, personality, and life situation. The participants found both formal and informal support to be valuable. Participants experienced having got sufficient support, but those living with a partner thought the support to their partner was lacking. Most informants felt that they had not participated in the care or in the planning of the subsequent care. For some participants this was not a problem, as they trusted the staff to know best, but others had the experience that their opinions were not considered. Participants living in nursing homes expressed having experienced loss of autonomy and lack of participation. This experience has been described elsewhere, not related specifically to stroke. In a Swedish study Persson et al. (25) described three explanations to decreased influence for individuals living in nursing homes; organizational imperatives (e.g. work routines or safety), resource constraints (e.g. lack of time, inadequate staffing), and trivialization of complaints (i.e. declaring a complaint to be trivial, rather than a manifestation of autonomy). Sometimes a ‘local routine culture’ might be maintained, making individuals’ possibility to exert influence considerably small (26). In the present study, a finding was that small issues regarded as important for the individual were sometimes not taken seriously by the nursing home staff or the community organization. The level of satisfaction with hospital stroke care is in good agreement well with the 3-month report from the Swedish stroke register, in which an average of 95% of the people with stroke expressed being satisfied or very satisfied with the hospital care (22). In the same report an average of 63% stated that their need for help and support after discharge was met by the health care and community services, though this mean value varied from 48% to 92% in different parts of Sweden. It thus seems that hospital stroke care is consistent in quality, while the quality of the continuing care is more uneven. This
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Satisfaction with care in stroke fact puts a greater responsibility on the person with stroke and their next of kin. Other studies have shown deficiencies in post stroke care (21, 27, 28), with the main issues being lack of information, poor knowledge about stroke, insufficient support, and difficulties communicating with the health care system. The informants in the present study highlighted the importance of the staff at the hospital and in community care, which confirms results from other studies (29, 30). Most informants were very satisfied with the rehabilitation they received. High intensity, andprofessional and encouraging rehabilitation staff were mentioned as important factors. Those who had spent a period in community inpatient rehabilitation after discharge from hospital thought the intensity of the rehabilitation was too low on these wards,even though they were supposed to be focused on rehabilitation. People who need to be cared for in a nursing home after discharge are probably more disabled than those who are able to return to ordinary living, but their rehabilitation should still be intense. Although the informants had obtained rehabilitation in different units, they were consistent in their view that the intensity of community inpatient rehabilitation was too low. There is strong evidence that rehabilitation should be individual, task-specific, and intense and it is recommended that stroke patients in the community should have access to specialist therapy-based rehabilitation services (31). An Irish study (32), in which 12 stroke patients were interviewed, showed that the patients would have liked more rehabilitation in the hospital and would have liked their family members to be involved in the exercising. A qualitative Australian study (28) showed that people with stroke did not always understand why they performed certain exercises, and that they lacked information about rehabilitation possibilities after discharge. Different health systems and different rehabilitation routines affect the rehabilitation obtained and the experiences of this, but there is strong evidence for how individual rehabilitation efforts should be performed. Better functional outcomes result in more satisfied patients (12, 14, 15), and all individuals must be given the chance of an optimal rehabilitation. Participation appeared to be a slightly difficult concept to understand, and could be interpreted in different ways. Some informants were dissatisfied because they thought their opinions were not considered, while others did not understand why they should be participating when the staff were the ‘experts’. Lack of information and lack of participation in care or the planning of continuing care seems to be a common experience (21, 28–30). Although there are differences in opinions about participation, a Swedish study (13) showed that patients who had participated in discharge planning were more satisfied with acute stroke care than those who had not.
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Results from an American pilot study suggest that patients with stroke who had verbal and written education with their caregivers, using motivational interviewing techniques, were more satisfied and had better knowledge about stroke compared to a control group (33). To ensure that all details are considered in the planning of care and rehabilitation and nothing is missed, checklists could be used by the professionals before discharge. In our study, measuring the qualitative quality indicators in the national stroke guidelines, an interview study was considered appropriate to get rich information. The possibility for the informants to speak freely about their experiences and the addition of follow-up questions resulted in a deeper understanding of what was experienced as positive and negative in stroke care. The participants represented a wide range of age, sex, living situation, and degree of disability, and they lived in both urban and rural areas. One limitation is that people with aphasia and people with more severe disability living in ordinary housing were not represented in this sample, but on the other hand, the sample included people living in nursing homes. Another limitation is that the informants were of Swedish origin, and people of foreign origin were not represented. Further studies including informants in these categories could give richer information about participation and need for support after stroke. In terms of generalizability, some of the themes that emerged were in good agreement with the report from Riks-Stroke (22), while other themes were not represented because the questionnaire from Riks-Stroke did not address these issues. In conclusion, our findings suggest that to ensure high quality throughout the whole stroke care chain, stroke patients must be invited to participate in their own care and in the planning of their continuing care. This responsibility must be shared by caregivers in all parts of the stroke care chain. One condition for achieving this is wellinformed patients and next of kin, and so written information about routines, health conditions, and the planning of care should always be provided. To meet the expectations of the stroke patients, and to offer evidencebased stroke rehabilitation, it is important that the rehabilitation is specific, intense, and performed by professionals regardless of where it is performed. A changed view of the nursing home patient’s autonomy should be developed, and this process must start from the staff and residents.
Author contributions Both authors were involved in the planning of the study, analysis, drafting of the manuscript. Helena Tholin performed the data collection.
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Ethical approval
Funding
The study was approved by the Research Ethics Committee of Uppsala (ref: 2009/329).
No specific funding was obtained.
References 1 Hallstr€ om B, Jonsson AC, Nerbrand C, Norrving B, Lindgren A. Stroke incidence and survival in the beginning of the 21st century in southern Sweden: comparisons with the late 20th century and projections into the future. Stroke 2008; 39: 10–5. 2 Wilkinson PR, Wolfe CDA, Warburton FG, Rudd AG, Howard RS, Ross-Russell RW, Beech RR. A long-term follow-up of stroke patients. Stroke 1997; 28: 507–12. 3 Barker-Collo S, Feigin VL, Parag V, Lawes CM, Senior H. Auckland stroke outcomes study part 2: cognition and functional outcomes 5 years post stroke. Neurology 2010; 75: 1608–16. 4 Hinkle JL. Outcome three years after motor stroke. Rehabil Nurs 2010; 35: 23–30. 5 Hartman-Maeir A, Soroker N, Ring H, Avni N, Katz N. Activities, participation and satisfaction one-year post stroke. Disabil Rehabil 2007; 29: 559– 66. 6 Gadidi V, Katz-Leurer M, Carmeli E, Bornstein NM. Long-term outcome poststroke: predictors of activity limitation and participation restriction. Arch Phys Med Rehabil 2011; 92: 1802–8. 7 Bauman M, Couffignal S, Le Bihan E, Chau N. Life satisfaction two-years after stroke onset: the effects of gender, sex, occupational status, memory function and quality of life among stroke patients and their family caregivers in Luxembourg. BMC Neurol 2012; 12: 105. 8 Achten D, Visser-Meily JM, Post MW, Schepers VP. Life satisfaction of couples 3 years after stroke. Disabil Rehabil 2012; 34: 1468–72. 9 Gosman-Hedstr€ om G, Dahlin-Ivanoff S. Mastering an unpredictable everyday life after stroke – older women′s experiences of caring and living with their partners. Scand J Caring Sci 2012; 26: 587–97.
10 Sturm JW, Donnan GA, Dewey HM, Macdonell RAL, Gilligan AK, Srikanth V, Thrift AG. Quality of life after stroke, the North East Melbourne Stroke Incidence Study (NEMESIS). Stroke 2004; 35: 2340–5. 11 J€ onsson A, Lindgren I, Hallstr€ om B, Norrving B, Lindgren A. Determinants of quality of life in stroke survivors and their informal caregivers. Stroke 2005; 36: 803–8. 12 Ottenbacher KJ, Gonzales VA, Smith PM, Illig SB, Fiedler RC, Granger CV. Satisfaction with medical rehabilitation in patients with cerebrovascular impairment. Am J Phys Med Rehabil 2001; 80: 876–84. 13 Asplund K, Jonsson F, Eriksson M, Stegmayr B, Appelros P, Norrving B, Terent A, Hulster Asberg K. Patient dissatisfaction with acute stroke care. Stroke 2009; 40: 3851–6. 14 Ekvall Hansson E, Beckman A, Wihlborg A, Persson S, Troein M. Satisfaction with rehabilitation in relation to self-perceived quality of life and function among patients with stroke – a 12 month follow-up. Scand J Caring Sci 2013; 27: 373–9. 15 Tistad M, Tham K, von Koch L, Ytterberg C. Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study. BMC Neurol 2012; 12: 40. 16 World Health Organization. The International Classification of Functioning, Disability and Health, www.who.int (last accessed 29 November 2013). 17 Stroke Unit Trialists’ Collaboration. Organised inpatient (stroke unit) care for stroke. Cochrane Database Syst Rev 2007; 4: CD000197. 18 Cramm JM, Strating MMH, Nieboer AP. Satisfaction with care as a quality-of-life predictor for stroke patients and their caregivers. Qual Life Res 2012; 21: 1719–25. 19 Reker DM, Duncan PW, Horner RD, Hoenig H, Samsa GP, Hamilton BB, Dudley TK. Postacute stroke guideline compliance is associated with
20
21
22
23
24
25
26
27
28
29
greater patient satisfaction. Arch Phys Med Rehabil 2002; 83: 75056. Scholte op Reimer WJM, deHaan RJ, Limburg M, van den Bos GAM. Patients satisfaction with care after stroke: relation with characteristics of patients and care. Qual Health Care 1996; 5: 144–50. Tyson S, Turner G. Discharge and follow-up for people with stroke: what happens and why. Clin Rehabil 2000; 14: 381–92. Riks-Stroke. Annual report 2011, http://www.riks-stroke.org/content/ analyser/Riks-Strokes_report_2011English.pdf (last accessed at 23 June 2013). The National Board of Health and Welfare. National Guidelines for Stroke Care 2009. 2009, The National Board of Health and Welfare, Stockholm. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105–12. Persson T, W€asterfors D. “Such Trivial Matters:” How staff account for restrictions of residents’ influence in nursing homes. J Aging Stud 2009; 23: 1–11. Harnett T. Seeking exemptions from nursing home routines: residents’ everyday influence attempts and institutional order. J Aging Stud 2010; 24: 292–301. Simon C, Kumar S, Kendrick T. Formal support of stroke survivors and their informal carers in the community: a cohort study. Health Soc Care Community 2008; 16: 582–92. White JH, Magin P, Pollack MRP. Stroke patients’ experience with the Australian health system: a qualitative study. Can J Occup Ther 2009; 76: 81–9. Mangset M, Dahl TE, F€ orde R, Bruun Wyller T. We′re just sick people, nothing else: factors contributing to elderly stroke patients’satisfaction with rehabilitation. Clin Rehabil 2008; 22: 825–35.
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Satisfaction with care in stroke 30 Andersson A, Hansebo G. Elderly people’s experience of nursing care after a stroke: from a gender perspective. J Adv Nurs 2009; 65: 2038–45. 31 Scottish Intercollegiate Guidelines Network – SIGN. Management of Patients with Stroke. Rehabilitation, Prevention and Management of
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Complication, and Discharge Planning. A national clinical guideline. 2010, June, http://www.sign.ac.uk/pdf/ sign118.pdf (last accessed 23 August 2013). 32 Galvin R, Cusack T, Stokes E. Physiotherapy after stroke in Ireland: a qualitative insight into the patients’
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and physiotherapists’ experience. Int J Rehabil Res 2009; 32: 238–44. 33 Byers AM, Lamanna L, Rosenberg A. The effect of motivational interviewing after ischemic stroke on patient knowledge and patient satisfaction with care: a pilot study. J Neurosci Nurs 2010; 42: 312–22.
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