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  • 1. Bergström, Aileen L
    et al.
    Guidetti, Susanne
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Tham, Kerstin
    von Koch, Lena
    Eriksson, Gunilla
    Perceived occupational gaps one year after stroke: An explorative study2011Ingår i: Journal of Rehabilitation Medicine, ISSN 1651-2081, Vol. 44, nr 1, s. 36-42Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: To explore and describe factors associated with occupational gaps and to identify factors at 3 months that predict occupational gaps one year post-stroke. A gap, a restriction in participation, is considered to be present when there is a discrepancy between what the individual wants to do and what they actually do in everyday life. DESIGN: Prospective longitudinal study. SUBJECTS: Two hundred persons with stroke. METHODS: Data from the Occupational Gaps Questionnaire, one year post-stroke, was used as the dependent variable in 3- and 12-month regression analyses. Domains of the Stroke Impact Scale, global life satisfaction, demographic and medical factors were used as independent variables. RESULTS: At 3 months, activities of daily living abilities, social participation and not being born in Sweden predicted occupational gaps at 12 months. Stroke severity and not being born in Sweden and 3 factors at 12 months: social participation, self-rated recovery, and global life satisfaction were associated with occupational gaps. CONCLUSION: Activities of daily living ability at 3 months predicted occupational gaps after stroke. Thus, it is possible to identify early on, and provide interventions for, those that risk participation restrictions. Not being born in the country might be an indicator of a risk for participation restrictions.

  • 2.
    Elf, Marie
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad.
    Flink, Maria
    Karolinska Institutet .
    Nilsson, Marie
    Karolinska Institutet .
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad.
    von Koch, Lena
    Karolinska Institutet .
    Ytterberg, Charlotte
    Karolinska Institutet .
    The case of value-based healthcare for people living with complex long-term conditions2017Ingår i: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 17, nr 1, s. 1-6, artikel-id 24Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background

    There is a trend towards value-based health service, striving to cut costs while generating value for the patient. The overall objective comprises higher-quality health services and improved patient safety and cost efficiency. The approach could align with patient-centred care, as it entails a focus on the patient’s experience of her or his entire cycle of care, including the use of well-defined outcome measurements. Challenges arise when the approach is applied to health services for people living with long-term complex conditions that require support from various healthcare services. The aim of this work is to critically discuss the value-based approach and its implications for patients with long-term complex conditions. Two cases from clinical practice and research form the foundation for our reasoning, illustrating several challenges regarding value-based health services for people living with long-term complex conditions.

    Discussion

    Achieving value-based health services that provide the health outcomes that matter to patients and providing greater patient-centredness will place increased demands on the healthcare system. Patients and their informal caregivers must be included in the development and establishment of outcome measures. The outcome measures must be standardized to allow evaluation of specific conditions at an aggregated level, but they must also be sensitive enough to capture each patient’s individual needs and goals. Healthcare systems that strive to establish value-based services must collaborate beyond the organizational boundaries to create clear patient trajectories in order to avoid fragmentation.

    Summary

    The shift towards value-based health services has the potential to align healthcare-service delivery with patient-centred care if serious efforts to take the patient’s perspective into account are made. This is especially challenging in fragmented healthcare systems and for patients with long-term- and multi-setting-care needs.

  • 3. Eriksson, Gunilla
    et al.
    Aasnes, Monica
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Guidetti, Susanne
    von Koch, Lena
    Occupational gaps in everyday life one year after stroke: association with life satisfaction and impact of stroke2012Ingår i: Topics in Stroke Rehabilitation, ISSN 1074-9357, E-ISSN 1945-5119, Vol. 19, nr 3, s. 244-255Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: To examine the presence, frequency, and distribution of occupational gaps and to explore whether there are associations between occupational gaps and life satisfaction, self-rated recovery, and functioning and participation in activities of daily living (ADLs) 1 year after stroke.

    Method: Data were collected at onset and at 12 months after stroke from 161 patients admitted to a stroke unit in central Sweden by using Occupational Gaps Questionnaire, LiSat-11, Stroke Impact Scale, Katz ADL Index, and Barthel Index. Spearman rank correlation and Mann Whitney U test were used in the analyses.

    Results: Occupational gaps were reported by 87% of the participants. The number of occupational gaps was moderately associated with participation and self-rated recovery. There was a significant difference in the number of occupational gaps between the participants who were independent in ADLs and those who were not, both at baseline and at 12 months after stroke. There was, however, no significant association between occupational gaps and life satisfaction.

    Conclusions: Occupational gaps 1 year after stroke are very common, particularly among individuals experiencing difficulties in ADLs. Increased efforts are vital to enable individuals to do the activities that are important to them, irrespective of whether these are instrumental ADLs or leisure or social activities. Occupational gaps could be reduced by developing rehabilitation interventions that enable desired activities in different contexts that are crucial for individual patients.

  • 4.
    Grim, Katarina
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Vårdvetenskap.
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Schön, Ulla-Karin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Socialt arbete. Stockholms universitet.
    Rosenberg, David
    Umeå universitet.
    The legitimacy of user knowledge in decision-making processes in mental health care: An analysis of epistemic injustice2019Ingår i: Journal of Psychosocial Rehabilitation and Mental Health, ISSN 2198-9834Artikel i tidskrift (Refereegranskat)
  • 5. Kristensen, Hanne Kaae
    et al.
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad.
    Koch, Lena von
    Ytterberg, Charlotte
    The importance of patient involvement in stroke rehabilitation2016Ingår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, nr 6, artikel-id e0157149Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: To investigate the perceived needs for health services by persons with stroke within the first year after rehabilitation, and associations between perceived impact of stroke, involvement in decisions regarding care/treatment, and having health services needs met.

    METHOD: Data was collected, through a mail survey, from patients with stroke who were admitted to a university hospital in 2012 and had received rehabilitation after discharge from the stroke unit. The rehabilitation lasted an average of 2 to 4.6 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, memory, speaking, reading, and sight. The perceived impact 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 independent variables. In all models the independent variables were: age, sex, SIS domain corresponding 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 age of 72 years, 33 were male and 30 were female. Eighty percent had suffered a mild stroke. The number of participants who reported problems varied between 51 (80%, mobility) and 24 (38%, sight). Involvement in decisions on care and treatment was found to be associated with having health services needs met in six problem areas: falls, fatigue, emotion, memory, speaking, and reading.

    CONCLUSIONS: The results highlight the importance of involving patients in making decisions on stroke rehabilitation, as it appears to be associated with meeting their health services needs.

  • 6. Lundell, S.
    et al.
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap. Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad.
    Rehn, B.
    Wiklund, M.
    Holmner, Å.
    Wadell, K.
    Building COPD care on shaky ground: A mixed methods study from Swedish primary care professional perspective2017Ingår i: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 17, nr 1, artikel-id 467Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Chronic obstructive pulmonary disease (COPD) is a public health problem. Interprofessional collaboration and health promotion interventions such as exercise training, education, and behaviour change are cost effective, have a good effect on health status, and are recommended in COPD treatment guidelines. There is a gap between the guidelines and the healthcare available to people with COPD. The aim of this study was to increase the understanding of what shapes the provision of primary care services to people with COPD and what healthcare is offered to them from the perspective of healthcare professionals and managers.

    Methods: The study was conducted in primary care in a Swedish county council during January to June 2015. A qualitatively driven mixed methods design was applied. Qualitative and quantitative findings were merged into a joint analysis. Interviews for the qualitative component were performed with healthcare professionals (n = 14) from two primary care centres and analysed with qualitative content analysis. Two questionnaires were used for the quantitative component; one was answered by senior managers or COPD nurses at primary care centres (n = 26) in the county council and the other was answered by healthcare professionals (n = 18) at two primary care centres. The questionnaire data were analysed with descriptive statistics.

    Results: The analysis gave rise to the overarching theme building COPD care on shaky ground. This represents professionals driven to build a supportive COPD care on 'shaky' organisational ground in a fragmented and non-compliant healthcare organisation. The shaky ground is further represented by uninformed patients with a complex disease, which is surrounded with shame. The professionals are autonomous and pragmatic, used to taking responsibility for their work, and with limited involvement of the management. They wish to provide high quality COPD care with interprofessional collaboration, but they lack competence and are hindered by inadequate routines and lack of resources.

    Conclusions: There is a gap between COPD treatment guidelines and the healthcare that is provided in primary care. To facilitate implementation of the guidelines several actions are needed, such as further training for professionals, additional resources, and improved organisational structure for interprofessional collaboration and patient education. 

  • 7.
    Nyberg, André
    et al.
    Umeå universitet, Institutionen för samhällsmedicin och rehabilitering.
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap. Umeå universitet, Institutionen för samhällsmedicin och rehabilitering.
    Wadell, Karin
    Umeå universitet, Institutionen för samhällsmedicin och rehabilitering.
    Can the COPD Web be used to promote self-management in patients with COPD in Swedish primary care: a controlled pragmatic pilot trial with 3 month and 12 month follow-up2019Ingår i: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 37, nr 1, s. 69-82Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE:

    Evaluate the feasibility of the COPD Web and its study design and study procedures and to increase the understanding of the potential effect of the tool in order to provide guidance for a future large scale trial.

    DESIGN:

    Parallel-group controlled pragmatic pilot trial.

    SUBJECTS:

    There was a total of 83 patients with COPD (mean age 70 ± 8 years with a forced expiratory volume in first second percent predicted of 60 ± 17%). The intervention group (n = 43) was introduced to and had access to the COPD Web in addition to usual care, while the control group (n = 40) received usual care alone.

    MAIN OUTCOME MEASURES:

    The feasibility of the COPD Web (i.e., if and how the COPD Web was used) was automatically collected through the website, while outcomes on health, conceptual knowledge, and physical activity (PA) were collected through questionnaires at baseline, 3 months and 12 months.

    RESULTS:

    At 3 months, 77% of the intervention group was considered users, and the majority of time spent on the site was related to PA and exercises and was spent during the first month (>80%). In addition, the intervention group reported increased PA (odds ratio [OR] = 4.4, P < .001), increased conceptual knowledge in five domains (OR = 2.6-4.2, all P < .05), and altered disease management strategies (e.g., increased PA) (OR ≥ 2.7 P < .05) in comparison to the control group. The latter was also different between groups at 12 months (OR = 3.7, P = .044). Knowledge of PA was correlated with level of PA (ρ = .425-.512, P < .05) as well as to the use of PA as a strategy to manage their disease (χ2 = 11.2-32.9, P < .05).

    CONCLUSION:

    Giving patients with COPD access to the COPD Web in addition to their ordinary primary care might be an effective shorter term (3 month) strategy to promote self-management. However, these results needs to be confirmed in a definitive large-scale trial. Key points Even though self-management strategies are an important part of chronic obstructive pulmonary disease (COPD) management, access to support for such strategies are limited for a large part of the COPD-population. Promoting self-management through the COPD Web might increase short-term levels of physical activity, promote conceptual knowledge and alter disease management strategies. The primary care COPD population in this study experienced limited impact of the disease in daily life, limited exertional dyspnea, and high generic quality-of-life, but vastly reduced levels of physical activity. A future large scale study should include strategies to encourage greater exposures to the COPD Web, including an extended analysis of factors associated with using or not using the tool over time and its impact on outcome measures, objective measures of conceptual knowledge, and physical activity, and it should include a large enough sample size to enable sub-group analyses and strategies to enhance recruitment.

  • 8. Nyberg, André
    et al.
    Wadell, Karin
    Lindgren, Helena
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap. Umeå universitet, Institutionen för samhällsmedicin och rehabilitering, Fysioterapin.
    Internet-based support for self-management strategies for people with COPD-protocol for a controlled pragmatic pilot trial of effectiveness and a process evaluation in primary healthcare2017Ingår i: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 7, nr 7, artikel-id e016851Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    INTRODUCTION: The use of adequate self-management strategies for people with chronic obstructive pulmonary disease (COPD) reduces healthcare use, improves health-related quality of life (HRQoL) and recovery after acute exacerbations. However, not many people with COPD receive support that promotes the use of such strategies and therefore new methods to facilitate and promote the use of self-management strategies are highly warranted. This pilot trial aims to evaluate the feasibility of the study design and study procedures considering effectiveness of the novel intervention, the COPD-web. METHODS AND ANALYSIS: The overall design is a pragmatic controlled pilot trial with preassessments and postassessments and a parallel process evaluation. Patients with the diagnosis of COPD will be eligible for the study. The intervention group will be recruited when visiting one of the six participating primary care units in Sweden. The control group will be identified from the unit's computerised registers. The intervention, the COPD-web, is an interactive web page with two sections; one directed at people with COPD and one at healthcare professionals. The sections aim to support patients' self-management skills-and to facilitate the provision of support for self-management strategies, respectively. Effectiveness with regard to patients' symptoms, HRQoL, knowledge of and readiness for COPD-related self-management, health literacy, self-efficacy for physical activity and time spent in physical activity and time being sedentary, and further, healthcare professionals' knowledge of and readiness to support COPD-related self-management strategies will be assessed using questionnaires at 3 and 12 months. The process evaluation will include observations and interviews.

    ETHICS AND DISSEMINATION: Ethical approval has been obtained. Findings will be presented at conferences, submitted for publication in peer-reviewed publications and presented to the involved healthcare professionals, patients and to patient organisations.

    TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT02696187.

  • 9.
    Palmcrantz, Susanne
    et al.
    Karolinska institutet.
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap. Karolinska institutet.
    Eldh, Ann Catrine
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad. Karolinska institutet.
    Holmqvist, Lotta Widén
    Karolinska institutet.
    Ehrenberg, Anna
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad.
    Tomson, Göran
    Karolinska institutet.
    Olsson, Christina B
    Karolinska institutet; Stockholm läns landsting.
    Wallin, Lars
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad. Karolinska institutet.
    Assessing feasibility and acceptability of study procedures: getting ready for implementation of national stroke guidelines in out-patient health care2015Ingår i: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 15, artikel-id 517Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Even though Swedish national guidelines for stroke care (SNGSC) have been accessible for nearly a decade access to stroke rehabilitation in out-patient health care vary considerably. In order to aid future interventions studies for implementation of SNGSC, this study assessed the feasibility and acceptability of study procedures including analysis of the context in out-patient health care settings.

    METHODS: The feasibility and acceptability of recruitment, observations and interviews with managers, staff and patients were assessed, as well as the feasibility of surveying health care records.

    RESULTS: To identify patients from the the hospitals was feasible but not from out-patient care where a need to relieve clinical staff of the recruitment process was identified. Assessing adherence to guidelines and standardized evaluations of patient outcomes through health care records was found to be feasible and suitable assessment tools to evaluate patient outcome were identified. Interviews were found to be a feasible and acceptable tool to survey the context of the health care setting.

    CONCLUSION: In this feasibility study a variety of qualitative and quantitative data collection procedures and measures were tested. The results indicate what can be used as a set of feasible and acceptable data collection procedures and suitable measures for studying implementation of stroke guidelines in an out-patient health care context.

  • 10. Palmcrantz, Susanne
    et al.
    Widen Holmqvist, Lotta
    Sommerfeld K., Disa
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Ytterberg, Charlotte
    von Koch, Lena
    Differences between younger and older individuals in their use of care and rehabilitation but not in self-perceived global recovery 1 year after stroke2012Ingår i: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 321, nr 1-2, s. 29-34Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Although priorities in Swedish stroke care should be based on the ethical principles of equal care and greatest support to those in greatest need, being of working age (younger) or retired (older) might influence expectations on recovery and the provision of care and rehabilitation.

    Method: Information regarding the use of care and rehabilitation during the 1st year after stroke was retrieved from the Stockholm County Council database and the medical data was taken from the medical records. The Barthel Index was used for self-ratings of dependence pre-stroke, and the Stroke Impact Scale was used to assess self-perceived disability and a global rating of recovery at 12 months. One hundred and ninety-two individuals were included.

    Results: Results showed that the younger group received more care and rehabilitation than the older group. In the older group, comorbid conditions and pre-stroke dependence, estimated in accordance with the Barthel Index, were more common. The older group reported larger impact on self-perceived disability regarding strength, mobility, self-care and domestic life, while self-perceived global recovery did not differ between the groups.

    Conclusion: Younger individuals received more care and rehabilitation, which indicates structural inequality in the provision of health care resources. However, as no difference in self-perceived global recovery was found between the groups; the disparity in the provision of health care may also be a consequence of greatest support being given to those in greatest need. By demonstrating the necessity of involving self-rated assessments of stroke impact at different points in time and in different age groups, the results of this study add to previous knowledge of age-related differences in the provision of health care and stroke outcome. Furthermore. this suggests a way to approach evaluation of equality in the provision of health care.

  • 11.
    Tistad, Malin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Needs for, use of and satisfaction with health care services in the course of the first year after stroke: the perspective of people with stroke2012Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Background: Many people who have had a stroke report unmet needs for rehabilitation. There is, however, a lack of knowledge about what issues underlie the many unmet needs. Assessment tools are used in the health care services to identify the presence of disabilities, but it is not known to what extent patient expressed disabilities are identified in the assessment tools. There is also a lack of knowledge regarding changes over time in length of stay (LOS) at stroke units and subsequent rehabilitation after stroke.The general aim of this thesis was to generate new knowledge about needs for rehabilitation, use of and satisfaction with health care services in the course of the first year after stroke from the perspective of people with stroke. Method: Data was derived from an observational prospective longitudinal study of people diagnosed with a stroke who received care at the stroke units of Karolinska University Hospital 2006/2007 (n=349). Data was also taken from the control-group in a randomized controlled trial of people who received care at the same stroke unit during 1993/1996 (n=40). Data collection comprised baseline assessment and follow-ups at 3, 6 and 12 months. Data was collected using an open question, established assessment tools, medical records and the Stockholm County Council’s computerized registers for use of health care services. Analyses applied in the thesis were: in paper I a comparison of the perspective of people who have had a stroke (categories of self-reported problems in daily life) and the health care services’ perspective (results from three established assessment tools); in paper II and III multivariate logistic regression analyses, and in paper IV comparisons regarding LOS, recovery in activities of daily living (ADL) and patient satisfaction.Results: Fatigue was the most common self-reported problem that people experienced in daily life after stroke. Items/domains in three standardized assessment tools corresponded to only 15 of 24 categories of self-reported problems. Furthermore, the assessment tools failed to identify 0-57% of the selfreported problems in the 15 categories that had corresponding items/domains (paper I). Unmet needs for rehabilitation at 12 months were predicted by high impact on strength (on the affected side) at 3 months, and associated with high impact on hand function (on the affected side) and poor self-rated recovery at 12 months (paper II). Among participants with moderate/severe stroke, met needs for rehabilitation was associated with having seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (paper III). Dissatisfaction with care at 12 months was predicted by poor coping capacity and restrictions in participation at three months, and associated with poor coping capacity and strength (on the affected side) at 12 months (paper II). The LOS at the stroke unit was shorter for patients who received care during 2006/2007 compared to 1993/1996 (median 8 versus 13 days), but no difference in LOS was found regarding the total LOS (stroke unit and subsequent inpatient rehabilitation). The participants from 2006/07 were to larger extent independent in ADL at 3 months after stroke, but no difference at 12 months was revealed and both groups were equally satisfied with health care services received (paper IV).Conclusion; There is poor concurrence between the perspective of the people who have had a stroke and the perspective of the health care services regarding problems experienced in daily life after a stroke. If health care services are to be based on problems experienced by the people who have had a stroke, the use of assessment tools should be complemented by a dialogue. Extra attention should be paid to the rehabilitation needs of people with high impact on strength and hand function and poor recovery since these are more likely to experience unmet needs for rehabilitation. For people with moderate/severe stroke, continuity in rehabilitation and particularly physiotherapy during the first year after stroke seems to contribute to meeting their needs for rehabilitation. It seems possible to reduce the number of days a patient spends in the stroke unit after mild to moderate stroke and for them to spend these days in a rehabilitation unit instead, and yet achieve a faster recovery in ADL.

  • 12.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap. Karolinska institutet; Umeå universitet.
    Flink, Maria
    Ytterberg, Charlotte
    Eriksson, Gunilla
    Guidetti, Susanne
    Tham, Kerstin
    von Koch, Lena
    Resource use of healthcare services 1 year after stroke: a secondary analysis of a cluster-randomised controlled trial of a client-centred activities of daily living intervention2018Ingår i: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 8, nr 8, artikel-id e022222Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: The objective of the study was to compare the total use of healthcare services in the course of the first year after a stroke between participants who, after the acute care, had received occupational therapy as a client-centred activities of daily living (ADL) intervention (CADL) and participants who had received usual ADL intervention (UADL).

    DESIGN: A secondary analysis of a multicentre cluster-randomised controlled trial (RCT).

    SETTING: Primary and secondary care in Sweden.

    PARTICIPANTS: Participants were included if they: (1) had received CADL or UADL in the RCT, either as inpatients in geriatric rehabilitation units or in their own homes, and (2) data could be retrieved about their use of healthcare services provided by the county council from computerised registers.

    INTERVENTIONS: CADL or UADL.

    OUTCOME MEASURES: Inpatient and outpatient healthcare in the course of the first year after stroke.

    RESULTS: Participants from 7 of the 16 units included in the RCT met the criteria. Participants in the CADL group (n=26) who received geriatric inpatient rehabilitation had a shorter length of hospital stay (p=0.03) than participants in the UADL group (n=46), and the CADL group with home rehabilitation (n=13) had fewer outpatient contacts (p=0.01) compared with the UADL group (n=25). Multiple regression analyses showed that in four of the models, a higher age was associated with a lower use of healthcare services. The use of healthcare services was also associated (some of the models) with dependence in ADL, stroke severity and type of rehabilitation received, CADL or UADL.

    CONCLUSIONS: The provision of client-centred occupational therapy after stroke did not appear to increase the use of healthcare services during the first year after stroke.rrrrr TRIAL REGISTRATION NUMBER: NCT01417585.

  • 13.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad. Karolinska institutet; Umeå universitet.
    Palmcrantz, Susanne
    Wallin, Lars
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad. Karolinska institutet; Göteborgs universitet.
    Ehrenberg, Anna
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad. Örebro universitet.
    Olsson, Christina B.
    Tomson, Göran
    Lotta, Widén Holmqvist
    Gifford, Wendy
    Eldh, Ann Catrine
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Omvårdnad. Karolinska institutet.
    Developing leadership in managers to facilitate the implementation of national guideline recommendations: a process evaluation of feasibility and usefulness2016Ingår i: International Journal of Health Policy and Management, ISSN 2322-5939, E-ISSN 2322-5939, Vol. 5, nr 8, s. 477-486Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Previous research supports the claim that managers are vital players in the implementation of clinical practice guidelines (CPGs), yet little is known about interventions aiming to develop managers’ leadership in facilitating implementation. In this pilot study, process evaluation was employed to study the feasibility and usefulness of a leadership intervention by exploring the intervention’s potential to support managers in the implementation of national guideline recommendations for stroke care in outpatient rehabilitation.

    Methods: Eleven senior and frontline managers from five outpatient stroke rehabilitation centers participated in a four-month leadership intervention that included workshops, seminars, and teleconferences. The focus was on developing knowledge and skills to enhance the implementation of CPG recommendations, with a particular focus on leadership behaviors. Each dyad of managers was assigned to develop a leadership plan with specific goals and leadership behaviors for implementing three rehabilitation recommendations. Feasibility and usefulness were explored through observations and interviews with the managers and staff members prior to the intervention, and then one month and one year after the intervention.

    Results: Managers considered the intervention beneficial, particularly the participation of both senior and frontline managers and the focus on leadership knowledge and skills for implementing CPG recommendations. All the managers developed a leadership plan, but only two units identified goals specific to implementing the three stroke rehabilitation recommendations. Of these, only one identified leadership behaviors that support implementation.

    Conclusion: Managers found that the intervention was delivered in a feasible way and appreciated the focus on leadership to facilitate implementation. However, the intervention appeared to have limited impact on managers’ behaviors or clinical practice at the units. Future interventions directed towards managers should have a stronger focus on developing leadership skills and behaviors to tailor implementation plans and support implementation of CPG recommendations.

  • 14.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap. Umeå universitet.
    Sara, Lundell
    Wiklund, Maria
    Nyberg, André
    Holmner, Åsa
    Wadell, Karin
    Co-creating an eHealth tool to support self-management in COPD:perspectives on usefulness and relevance2018Ingår i: JMIR Human Factors, E-ISSN 2292-9495, Vol. 5, nr 4, artikel-id e10801Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: New strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives.

    Objective: The objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers.

    Methods: Data were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis.

    Results: The overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge.

    Conclusions: The cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

  • 15.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Tham, Kerstin
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    Ytterberg, Charlotte
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study2012Ingår i: BMC Neurology, ISSN 1471-2377, E-ISSN 1471-2377, Vol. 12, artikel-id 40Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: People who have suffered a stroke commonly report unfulfilled need for rehabilitation. Using a model of patient satisfaction, we examined characteristics in individuals that at 3 months after stroke predicted, or at 12 months were associated with unmet need for rehabilitation or dissatisfaction with health care services at 12 months after stroke.

    METHODS: The participants (n = 175) received care at the stroke units at the Karolinska University Hospital, Sweden. The dependent variables "unfulfilled needs for rehabilitation" and "dissatisfaction with care" were collected using a questionnaire. Stroke severity, domains of the Stroke Impact Scale (SIS), the Sense of Coherence scale (SOC) and socio demographic factors were used as independent variables in four logistic regression analyses.

    RESULTS: Unfulfilled needs for rehabilitation at 12 months were predicted by strength (SIS) (odds ratio (OR) 7.05) at three months, and associated with hand function (SIS) (OR 4.38) and poor self-rated recovery (SIS) (OR 2.46) at 12 months. Dissatisfaction with care was predicted by SOC (OR 4.18) and participation (SIS) (OR 3.78), and associated with SOC (OR 3.63) and strength (SIS) (OR 3.08).

    CONCLUSIONS: Thirty-three percent of the participants reported unmet needs for rehabilitation and fourteen percent were dissatisfied with the care received. In order to attend to rehabilitation needs when they arise, rehabilitation services may need to be more flexible in terms of when rehabilitation is provided. Long term services with scheduled re-assessments and with more emphasis on understanding the experiences of both the patients and their social networks might better be able to provide services that attend to patients' needs and aid peoples' reorientation; this would apply particularly to those with poor coping capacity.

  • 16.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Early supported discharge service after stroke - How is the service implemented in clinical practice?2014Konferensbidrag (Refereegranskat)
  • 17.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Early supported discharge service after stroke in its natural habitat – adherence to guidelines, outcome, resource use and costs2014Konferensbidrag (Refereegranskat)
  • 18.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Early supported discharge service in its natural habitat - how is the service implemented in clinical practice?2013Konferensbidrag (Övrigt vetenskapligt)
  • 19.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    von Koch, Lena
    Karolinska institutet.
    Usual clinical practice for early supported discharge after stroke with continued rehabilitation at home: an observational comparative study2015Ingår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, nr 7, artikel-id e0133536Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Introduction: Based on randomised controlled trials, evidence exists that early supported discharge (ESD) from the hospital with continued rehabilitation at home has beneficial effects after stroke; however, the effects of ESD service in regular clinical practice have not been investigated. The purpose of the current study was to compare ESD service with conventional rehabilitation in terms of patient outcomes, caregiver burden at 3 and 12 months and the use and costs of healthcare during the first year after stroke.

    Material and methods: This study was a subgroup analysis of a longitudinal observational study of patients who received care in the stroke unit at Karolinska University Hospital in Sweden. Patients who met the inclusion criteria for ESD in previous experimental studies were included. The patients were referred to available rehabilitation services at discharge, and comparisons between those who received ESD service (the ESD group, n = 40) and those who received conventional rehabilitation (the NoESD group, n = 110) were performed with regard to independence in activities of daily living (ADL), the frequency of social activities, life satisfaction, and caregiver burden and the use and costs of healthcare during the first year after stroke.

    Results: At 3 and 12 months, no differences were observed with regard to patient outcomes; however, ESD was associated with a lower caregiver burden (p = 0.01) at 12 months. The initial length of stay (LOS) at the hospital was 8 days for the ESD group and 15 days for the NoESD group (p = 0.02). The median number of outpatient rehabilitation contacts was 20.5 for the ESD group (81% constituting ESD service) and 3 for the NoESD group (p<0.001). There was no difference between the groups with regard to overall healthcare costs.

    Conclusions: ESD service in usual clinical practice renders similar health benefits as conventional rehabilitation but a different pattern of resource use and with released capacity in acute stroke care.

  • 20.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Sjöstrand, Christina
    Institutionen för klinisk neurovetenskap, Karolinska Institutet, Neurologkliniken Karolinska Universitetssjukhuset.
    Tham, Kerstin
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    Ytterberg, Charlotte
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke - amount, place, operator or timing?2013Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 16, nr 3, s. e24-35Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND AND OBJECTIVE: To a large extent, people who have suffered a stroke report unmet needs for rehabilitation. The purpose of this study was to explore aspects of rehabilitation provision that potentially contribute to self-reported met needs for rehabilitation 12 months after stroke with consideration also to severity of stroke.

    METHODS: The participants (n = 173) received care at the stroke units at the Karolinska University Hospital, Sweden. Using a questionnaire, the dependent variable, self-reported met needs for rehabilitation, was collected at 12 months after stroke. The independent variables were four aspects of rehabilitation provision based on data retrieved from registers and structured according to four aspects: amount of rehabilitation, service level (day care rehabilitation, primary care rehabilitation and home-based rehabilitation), operator level (physiotherapist, occupational therapist, speech therapist) and time after stroke onset. Multivariate logistic regression analyses regarding the aspects of rehabilitation were performed for the participants who were divided into three groups based on stroke severity at onset.

    RESULTS: Participants with moderate/severe stroke who had seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (OR 8.36, CI 1.40-49.88 P = 0.020) were more likely to report met rehabilitation needs.

    CONCLUSION: For people with moderate/severe stroke, continuity in rehabilitation (preferably physiotherapy) during the first year after stroke seems to be associated with self-reported met needs for rehabilitation.

  • 21.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Ytterberg, Charlotte
    Sjotrand, Christina
    Holmqvist, Lotta Widen
    von Koch, Lena
    Shorter length of stay in the stroke unit: comparison between the 1990s and 2000s2012Ingår i: Topics in Stroke Rehabilitation, ISSN 1074-9357, E-ISSN 1945-5119, Vol. 19, nr 2, s. 172-181Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The process ruling length of stay (LOS) in hospitals is complex, and changes over time in LOS have not been explored. The purpose of the study was to examine differences in LOS, use of and satisfaction with health-related services, and capacity in activities of daily living (ADLs) during the first year post stroke in 2 groups of patients with mild to moderate stroke who received care in the same stroke unit.

    Method: The patients (1993/96, n=40; 2006/07, n=43) in this study received care in the stroke unit at Karolinska University Hospital, Huddinge, Sweden. Data on LOS and on the use of health-related services were collected from the Stockholm County Council computerized registers. Satisfaction with health-related services was assessed using a questionnaire covering different dimensions of care, while ADLs were assessed using Katz Extended Index of ADL.

    Results: The LOS in the stroke unit was shorter in the 2006-2007 group (median 8 days) compared to the 1993-1996 group (13 days) (P < .001). Both groups were equally satisfied with health-related services received. A larger proportion of patients were independent in ADLs 3 months post stroke in the 2006-2007 group, but no difference was seen at 6 or 12 months post stroke.

    Conclusion: It seems possible to reduce the number of days spent in the stroke unit after mild to moderate stroke and instead spend days in a rehabilitation unit, and yet achieve similar patient satisfaction and faster recovery in ADL.

  • 22.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Different perspectives on disability three months after stroke: a mixed methods approach2011Ingår i: 16th Nordic Congress on Cerebrovascular Diseases, Tallinn, Estland, 2011Konferensbidrag (Refereegranskat)
    Abstract [en]

    Abstract Background A substantial number of people who have suffered a stroke perceive unmet needs for rehabilitation and other health care services. Disability is one of the phenomena underlying people’s need for health care services and disability/problems can be viewed both from the perspective of people with stroke (felt problems), and from the perspective of health professionals (assessed problems). Objective The aim was to describe the felt problems three months after stroke and to explore the concurrence between the felt problems and the assessed problems. Method The patients (n=203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, collected by posing an open question, were categorized. Results from three established assessment tools: Katz Extended Index of ADL (KE); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons between the felt problems and the assessed problems performed. Result Fatigue was the category with the largest number of felt problems (n=58, 28%). Fourteen out of the 28 categories of felt problems, had corresponding items/domains in the KE/ BI and the SIS. The KE/BI failed to identify 16-57% of the felt problems whereas the SIS failed to identify 0-33%. Conclusion There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments has to be complemented by open questions and dialogue if the health care services are to be based on the problems experienced by the patients.

  • 23.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Different perspectives on disability three months after stroke: a mixed methods approach2011Ingår i: 20th European Stroke Conference, Hamburg, Tyskland, 2011Konferensbidrag (Refereegranskat)
    Abstract [en]

    Abstract Background People who have suffered a stroke perceive to a large extent unmet needs of rehabilitation. Needs of health care services can be viewed from the perspective of the phenomena underlying the need i.e. the disability/problems and also from the perspective of the people with stroke as well as the health professionals. The aim was to describe disability/problems from the perspective of the people with stroke, represented by felt problems, reported by patients three months after stroke and to examine if there were differences between men and women. A further aim was to explore the concurrence between the perspective of the people with stroke (felt problems) and the perspective of the health professionals (assessed problems). Methods The patients (n=203) received care at the stroke units at Karolinska University Hospital, Sweden. Felt problems, collected using an open question, were categorized. Results from three established assessment tools: Katz Extended Index of ADL (KE); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories with felt problems were identified and comparisons performed. Results Fatigue was the category in which the largest number of patients reported felt problems (n=58, 28%). More women than men had felt problems in the category Acquisition, meals and housework (p=0.01) whereas more men had felt problems in the categories Employment (p=0.02) and Driving (p=0.009). Fourteen out of the 28 categories of felt problems had corresponding items/domains in the KE/ BI and the SIS. The KE/BI failed to capture 16-57 % of the felt problems whereas the SIS failed to capture 0-33 %. Conclusion There was a substantial lack of concurrence between felt and assessed problems indicating that the use of assessment tools has to be complemented with open questions if health services are to address the problems experienced by the patients.

  • 24.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Poor concurrence between disability as described by patients and established assessments tools three months after stroke2011Ingår i: Conference on Advances in Health Care Science Research, Stockholm, 2011Konferensbidrag (Refereegranskat)
    Abstract [en]

    A substantial number of people who have suffered a stroke perceive unmet needs for rehabilitation and other health care services. Disability is one of the phenomena underlying people’s need for health care services and disability/problems can be viewed both from the perspective of people with stroke (felt problems), and from the perspective of health professionals (assessed problems). The aims were to describe the felt problems three months after stroke and to explore the concurrence between the felt problems and the assessed problems. The patients (n=203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, collected by posing an open question, were categorized. Results from three established assessment tools: Katz Extended Index of ADL (KE); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons the felt problems and the assessed problems performed. Fatigue was the category with the largest number of felt problems (n=58, 28%). Fourteen out of the 28 categories of felt problems, had corresponding items/domains in the KE/ BI and the SIS. The KE/BI failed to identify 16-57% of the felt problems whereas the SIS failed to identify 0-33%. There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments has to be complemented by open questions and dialogue if the health care services are to be based on the problems experienced by the patients.

  • 25.
    Tistad, Malin
    et al.
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Medicinsk vetenskap.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Poor concurrence between disability as described by patients and established assessments tools three months after stroke: a mixed methods approach2012Ingår i: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 313, nr 1-2, s. 160-166Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background. Disability/problems, one phenomenon underlying people's need for health care services, can be viewed both from the perspectives of people with stroke (felt problems), and the health professionals (assessed problems). Objective The aim was to describe felt problems three months after stroke and to explore the concurrence between felt problems and assessed problems.

    Method. The patients (n = 203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, drawn from an open question, were categorized. Results from established assessment tools: Katz Extended Index of ADL (KI); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons performed.

    Result. The category Fatigue had the largest number of felt problems (n = 58, 28%). Fourteen out of the 24 categories of felt problems had corresponding items/domains in the assessment tools. KE/BI failed to identify 16–57% and SIS 0–33% of the felt problems.

    Conclusion. There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments should be complemented by a dialog if health services are to be based on problems experienced by the patients.

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