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1.
BMC Neurol ; 24(1): 251, 2024 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-39039456

RESUMO

BACKGROUND: Transitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. METHODS: Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. RESULTS: Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. CONCLUSIONS: Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.


Assuntos
Cuidadores , Pesquisa Qualitativa , Acidente Vascular Cerebral , Humanos , Feminino , Cuidadores/psicologia , Masculino , Pessoa de Meia-Idade , Idoso , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/terapia , Adulto , Alta do Paciente , Preferência do Paciente/psicologia , Idoso de 80 Anos ou mais , Apoio Social , Reabilitação do Acidente Vascular Cerebral/métodos , Reabilitação do Acidente Vascular Cerebral/psicologia , Serviços de Assistência Domiciliar
2.
BMC Neurol ; 23(1): 124, 2023 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-36978045

RESUMO

BACKGROUND: Physical activity is essential to improve health and reduce the risk of recurrence of stroke or transient ischemic attack (TIA). Still, people post stroke or TIA are often physically inactive and the availability of physical activity promotion services are often limited. This study builds on an existing Australian telehealth-delivered programme (i-REBOUND- Let's get moving) which provides support for home-based physical activity for people post stroke or TIA. The aim of this study is to test the feasibility, acceptability, and preliminary effects of a mobile Health (mHealth) version of the i-REBOUND programme for the promotion of physical activity in people post stroke or TIA living in Sweden. METHODS: One hundred and twenty participants with stroke or TIA will be recruited via advertisement. A parallel-group feasibility randomised controlled trial design with a 1:1 allocation ratio to 1) i-REBOUND programme receiving physical exercise and support for sustained engagement in physical activity through behavioural change techniques, or 2) behavioural change techniques for physical activity. Both interventions will proceed for six months and be delivered digitally through a mobile app. The feasibility outcomes (i.e., reach, adherence, safety and fidelity) will be monitored throughout the study. Acceptability will be assessed using the Telehealth Usability Questionnaire and further explored through qualitative interviews with a subset of both study participants and the physiotherapists delivering the intervention. Clinical outcomes on preliminary effects of the intervention will include blood pressure, engagement in physical activity, self-perceived exercise self-efficacy, fatigue, depression, anxiety, stress and health-related quality of life and will be measured at baseline and at 3, 6 and 12 months after the baseline assessments. DISCUSSION: We hypothesise that the mHealth delivery of the i-REBOUND programme will be feasible and acceptable in people post stroke/TIA living in rural and urban regions of Sweden. The results of this feasibility trial will inform the development of full-scale and appropriately powered trial to test the effects and costs of mHealth delivered physical activity for people after stroke or TIA. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05111951. Registered November 8, 2021.


Assuntos
Ataque Isquêmico Transitório , Acidente Vascular Cerebral , Humanos , Qualidade de Vida , Estudos de Viabilidade , Austrália , Exercício Físico , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Health Expect ; 25(3): 1157-1167, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35285115

RESUMO

OBJECTIVES: (i) Describe patients' self-selected activity-related rehabilitation goals, and (ii) compare attainment of these rehabilitation goals among people with persistent tension-type neck pain receiving a group-based pain and stress self-management intervention (PASS) or individual physiotherapy (IPT). METHODS: Before intervention and random allocation to PASS or IPT, 156 people (PASS n = 77, IPT n = 79), listed three self-selected activity-related rehabilitation goals by use of the Patient Goal Priority Questionnaire (PGPQ). For each activity goal, participants rated limitations in activity performance, self-efficacy and fear of activity performance, readiness to change to improve performance, and expectations of future activity performance. At follow-ups (10 weeks, 20 weeks, 1 year and 2 years after inclusion), participants also responded to a question on changes made to improve activity performance. Mann-Whitney U test was used to evaluate between-group differences. RESULTS: There were between-group differences in favour of PASS in the attainment of self-selected rehabilitation goals with regard to activity limitations and satisfaction with activity performance at all follow-ups. CONCLUSIONS: PASS was more successful than IPT for the attainment of self-selected rehabilitation goals, improvements in activity limitations and satisfaction with activity performance as measured by PGPQ. The PASS programme emphasized the importance of applying active pain- and stress-coping techniques in personal 'risk situations' for pain flare-ups, which appear to support people with persistent tension-type neck pain to make changes in their lives to improve activity performance. PATIENT OR PUBLIC CONTRIBUTION: Patient engagement in rehabilitation by self-selected goals was investigated, but patients were not involved in the design or conduct of the study.


Assuntos
Objetivos , Autogestão , Humanos , Cervicalgia/terapia , Manejo da Dor , Inquéritos e Questionários
4.
BMC Health Serv Res ; 22(1): 594, 2022 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-35505404

RESUMO

BACKGROUND: There is a lack of knowledge about patients' journeys across the stroke care continuum, especially regarding the transition from inpatient to outpatient care and rehabilitation. Therefore, the aim of the present study was to explore and describe patterns of healthcare use over a one-year period, health outcomes at 3 and 12 months for patients following a referral-based transition to subsequent rehabilitation in the home, and the caregiver burden on their significant others. A further aim was to explore factors associated with the use of rehabilitation and healthcare after the referral-based transition to continued rehabilitation in the home for people recovering from a stroke. METHODS: Data regarding healthcare use during the first 12 months post-stroke was collected from the Region Stockholm computerized register. Data on patient characteristics, disease-related data, and functioning were retrieved drawn from medical records and questionnaires. Descriptive statistics were used to present healthcare use, participants' characteristics, disease-related data, and patient functioning. Multivariable regression models were created to explore associations between the total number of outpatient contacts, total visits with the neurorehabilitation team, and the independent variables. RESULTS: The mean age for the 190 participants was 73 years for men and 78 years for women. Twenty-one participants (11%) had an acute rehospitalization within 30 days after discharge, and 41 participants (21%) were re-hospitalized within 90 days. Twenty-two (12%) of the participants had no visits with the neurorehabilitation team, 73 (39%) participants had 1-3 visits, 57 (30%) had 4-16 visits, and 38 (20%) had ≥17 visits. Female sex and length of hospital stay were associated with a higher number of visits with the neurorehabilitation team. Living alone, higher self-rated recovery, and being able to walk independently were associated with a lower number of visits with the neurorehabilitation team. Female sex, having home help services before the stroke, longer length of hospital stay, and more comorbidities were associated with a higher number of outpatient contacts. CONCLUSIONS: The findings indicate that there is no generic pattern of healthcare use during the first-year post-stroke in patients receiving referral-based transition to continued rehabilitation in the home. The different patterns of healthcare use seemed to mirror the participants' level of functioning. However, there is a need to further investigate how follow-up and rehabilitation correspond to the needs of patients and their significant others in the short- and long-term perspective. TRIAL REGISTRATION: ClinicalTrials.gov , registration number: NCT02925871 . Date of registration: October 6, 2016.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Idoso , Assistência Ambulatorial , Atenção à Saúde , Feminino , Humanos , Masculino , Encaminhamento e Consulta , Acidente Vascular Cerebral/terapia
5.
Health Expect ; 24(3): 905-916, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33729653

RESUMO

BACKGROUND: Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed. OBJECTIVE: The aim of this study was to describe how user participation manifests itself within a co-design process involving patients, significant others and health-care professionals, including potential enablers or barriers. METHODS: This study was conducted in the context of a co-design process of a new person-centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi-structured interviews and questionnaires. RESULTS: Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever-adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute. DISCUSSION/CONCLUSION: Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co-design processes should allow for varying levels of participation among the participants and throughout the process. PATIENT OR PUBLIC CONTRIBUTION: Patients, significant others and health-care professionals participated as co-designers of a care transition model between hospital and home.


Assuntos
Pessoal de Saúde , Hospitais , Humanos , Pesquisa Qualitativa
6.
Mult Scler ; 26(13): 1775-1784, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-31621488

RESUMO

BACKGROUND: Identification of people with multiple sclerosis (PwMS) with increased risk of restricted participation in social and lifestyle activities (e.g. social outings and pursuing a hobby) could guide the development of interventions supporting sustained participation. OBJECTIVE: To explore changes in participation in complex and social everyday activities over 10 years in PwMS in relation to multiple sclerosis (MS) severity and to identify predictors of sustained participation. METHODS: This study was based on a 10-year follow-up of 264 PwMS living in Stockholm County, Sweden. Ten-year changes in participation in social/lifestyle activities were assessed and compared between PwMS with different MS severity with the Frenchay Activities Index using age- and sex-related normative values. Multiple logistic regression analyses were used to predict sustained participation at 10 years using personal factors, disease severity and functioning as independent variables. RESULTS: While a majority of people with mild MS demonstrated sustained participation (67%), a minority of PwMS moderately (26%) and severely affected by MS (5%) demonstrated sustained participation. Significant predictors of sustained participation after 10 years were walking speed ⩾1.2 m/s and ⩾32 correct responses on the Symbol Digit Modalities Test. CONCLUSION: Our findings accentuate the importance for health services to support mobility and cognition to obtain sustained participation.


Assuntos
Esclerose Múltipla , Humanos , Estilo de Vida , Testes Neuropsicológicos , Índice de Gravidade de Doença , Comportamento Social
7.
Clin Rehabil ; 33(2): 262-276, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30409049

RESUMO

OBJECTIVE:: To compare five-year outcomes and changes over time of a client-centred activities of daily living (ADL) intervention versus usual ADL interventions for people with stroke and their significant others. DESIGN:: Five-year follow-up of a cluster-randomized controlled trial where a client-centred ADL intervention ( n = 129) or usual ADL interventions ( n = 151) were delivered to people with stroke. SETTING:: Multicentre study including 16 inpatient or home-based rehabilitation units. PARTICIPANTS:: People with stroke and significant others. INTERVENTION:: The client-centred ADL intervention aimed at enabling agency in daily activities and participation in everyday life and at reducing caregiver burden. MAIN MEASURES:: For people with stroke, perceived participation (Stroke Impact Scale), independence in ADL, life satisfaction, and use of formal/informal care were measured. For significant others, caregiver burden, life satisfaction, and mood (Hospital Anxiety and Depression Scale) were assessed. RESULTS:: Five years post-intervention, data were collected from 145 people with stroke (intervention group: n = 71/control group: n = 74) and 75 significant others (intervention group: n = 36/control group: n = 39). For those with stroke, the Participation domain of the Stroke Impact Scale showed no group differences at year five (68.9 vs 75.4, P = 0.062) or in changes over time. At year five, the control group had better outcomes regarding Other help/supervision. Significant others in the control group were more likely to show signs of depression at year five (odds ratio = 22.3; P < 0.001). CONCLUSION:: The client-centred ADL intervention appears to render similar long-term effects as usual ADL interventions for people with stroke, but for significant others signs of depression might be reduced.


Assuntos
Atividades Cotidianas , Reabilitação do Acidente Vascular Cerebral/métodos , Acidente Vascular Cerebral/psicologia , Adaptação Psicológica , Afeto , Idoso , Análise por Conglomerados , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/fisiopatologia , Fatores de Tempo
8.
BMC Med Inform Decis Mak ; 19(1): 122, 2019 07 03.
Artigo em Inglês | MEDLINE | ID: mdl-31269946

RESUMO

BACKGROUND: According to WHO stroke is a growing societal challenge and the third leading cause of global disease-burden estimated using disability-adjusted life years. Rehabilitation after stroke is an area of mutual interest for health care in many countries. Within the health care sector there is a growing emphasis on ICT services to provide clients with easier access to information, self-evaluation, and self-management. ICT-supported care programs possible to use in clients' home environments are also recommended when there are long distances to the health care specialists. The aim of this study was to evaluate the technical usability of a SMS-based reminder system as well as user opinions when using such a system to assist clients to remember to perform daily rehabilitation activities, to rate their performance and to allow Occupational therapists (OT's) to track and follow-up clients' results over time. METHODS: Fifteen persons with stroke were invited to participate in the study and volunteered to receive daily SMS-based reminders regarding three activities to perform on a daily basis as well as answer daily SMS-based questions about their success rate during eight weeks. Clients, a number of family members, as well as OTs were interviewed to evaluate their opinions of using the reminder system. RESULTS: All clients were positive to the reminder system and felt that it helped them to regain their abilities. Their OTs agreed that the reminder and follow-up system was of benefit in the rehabilitation process. However, some technical and other issues were limiting the use of the system for some clients. The issues were mostly linked to the fact that the SMS system was based on a Swedish phone number, so that all messages needed to be sent internationally. CONCLUSION: In conclusion, it seems that this type of SMS-based reminder systems could be of good use in the rehabilitation process after stroke, even in low income counties where few clients have access to Internet or smart phones, and where access to healthcare services is limited. However, since the results are based on clients', OTs' and family members' expressed beliefs, we suggest that future research objectively investigate the intervention's beneficial effects on the clients' physical and cognitive health.


Assuntos
Sistemas de Alerta , Reabilitação do Acidente Vascular Cerebral , Envio de Mensagens de Texto , Atividades Cotidianas , Telefone Celular , Família , Humanos
9.
Global Health ; 14(1): 82, 2018 08 15.
Artigo em Inglês | MEDLINE | ID: mdl-30111333

RESUMO

BACKGROUND: There is a lack of evidence-based health services to reduce the impact of stroke in low-income countries at a personal, family or community level. The aim was to evaluate the feasibility of: i) a mobile phone supported family-centred intervention (F@ce™), and ii) the study design for evaluating the effects of the intervention on the perceived impact of stroke; perceived participation in everyday life; and self-efficacy in everyday activities amongst persons with stroke and their families in Uganda. METHODS: The study comprised a pre-post design with an intervention group (IG) receiving the F@ce™ and a control group (CG). The inclusion criteria's were: a) confirmed stroke diagnosis, b) access to and ability to use a mobile phone, c) ability to communicate in English and/or Luganda, d) > 18 years, e) residents in Kampala, and f) a Modified Rankin Scale level 2 to 4. The aim of the F@ceTM was to increase functioning in daily activities for persons living with the consequences of stroke, and participation in everyday life for persons with stroke and their families. The F@ce™ was an eight-week family-centred intervention, which entailed goal setting and problem-solving strategies, daily reminders and self-rated follow-ups of performance by short message service (SMS). Data were collected in the participants' home environment at baseline and after eight weeks. Data on acceptability of the F@ce™ and study procedures were collected by log-books and the responses of the SMS follow ups on the server. The primary outcomes were performance and satisfaction of valued daily activities in everyday life using the Canadian Occupational Performance Measure (COPM), self-efficacy in performance of activities in daily life. RESULTS: The IG comprised n = 13 and the CG n = 15. There were differences between the IG and CG in changes between baseline and follow-up in the primary outcomes COPM (performance component) and self-efficacy in favour of F@ce™. Overall with minor modifications the intervention and the study design were feasible for all participants involved. CONCLUSION: The results support the need for further research to rigorously evaluate the effects of F@ce™ since the intervention appears to be feasible for persons with stroke and their family members.


Assuntos
Atividades Cotidianas/psicologia , Telefone Celular , Família/psicologia , Reabilitação do Acidente Vascular Cerebral/métodos , Idoso , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autoeficácia , Resultado do Tratamento , Uganda
10.
Arch Phys Med Rehabil ; 99(8): 1483-1490, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29407519

RESUMO

OBJECTIVE: To identify predictors for employment status after 10 years in a cohort of people with multiple sclerosis (MS), with the aim to increase knowledge concerning factors present at an early stage that are important for working life and work-life balance. DESIGN: A 10-year longitudinal observational cohort study. SETTING: University hospital. PARTICIPANTS: A consecutive sample of people with MS (N=154) of working age were included at baseline, of which a total of 116 people participated in the 10-year follow-up; 27 people declined participation and 11 were deceased. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Baseline data on personal factors and functioning were used as independent variables. Employment status 10 years after baseline, categorized as full-time work, part-time work, and no work, was used as the dependent variable. A generalized ordinal logistic regression was used to analyze the predictive value of the independent variables. RESULTS: Predictors for full- or part-time work after 10 years were young age (P=.002), low perceived physical impact of MS (P=.02), fatigue (P=.03), full-time work (P=.001), and high frequency of social/lifestyle activities (P=.001) at baseline. Low perceived physical impact of MS (P=.02) at baseline also predicted full-time work after 10 years. CONCLUSIONS: This study underlines the complexity of working life for people with MS, and indicates that it may be valuable to give more attention to the balance between working and private life, both in clinical practice and future research, to achieve a sustainable working life over time.


Assuntos
Emprego , Esclerose Múltipla/fisiopatologia , Adulto , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Equilíbrio Trabalho-Vida
11.
J Adv Nurs ; 2018 Apr 20.
Artigo em Inglês | MEDLINE | ID: mdl-29676493

RESUMO

AIM: To explore and compare the impact of the physical environment on patients' activities and care at three newly built stroke units. BACKGROUND: Receiving care in a stroke unit instead of in a general ward reduces the odds of death, dependency and institutionalized care. In stroke units, the design of the physical environment should support evidence-based care. Studies on patients' activities in relation to the design of the physical environment of stroke units are scarce. DESIGN: This work is a comparative descriptive case study. METHOD: Patients (N = 55) who had a confirmed diagnosis of stroke were recruited from three newly built stroke units in Sweden. The units were examined by non-participant observation using two types of data collection: behavioural mapping analysed with descriptive statistics and field note taking analysed with deductive content analysis. Data were collected from April 2013 - December 2015. RESULTS: The units differed in the patients' levels of physical activity, the proportion of the day that patients spent with health professionals and family presence. Patients were more physically active in a unit with a combination of single and multi-bed room designs than in a unit with an entirely single-room design. Stroke units that were easy to navigate and offered variations in the physical environment had an impact on patients' activities and care. CONCLUSIONS: Patients' activity levels and interactions appeared to vary with the design of the physical environments of stroke units. Stroke guidelines focused on health status assessments, avoidance of bed-rest and early rehabilitation require a supportive physical environment.

12.
J Sex Med ; 14(6): 797-803, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28479131

RESUMO

BACKGROUND: Little is known about the long-term consequences of stroke on sexuality, and studies on how individuals with stroke communicate with health care professionals about information and/or interventions on sexuality are even sparser. AIM: To explore experiences of sexuality 6 years after stroke, including communication with health care professionals concerning sexuality. METHODS: This qualitative study was based on data collected by semistructured interviews with 12 informants 43 to 81 years old 6 years after stroke. Interviews were recorded and transcribed verbatim and thematic analysis was performed. RESULTS: The analysis resulted in the following three themes. Not exclusively negative experiences in sexuality after stroke: Most informants experienced some change in their sexual life from before their stroke. Decreased sexual interest and function were ascribed to decreased sensibility, post-stroke pain, or fatigue. Some informants reported positive changes in sexuality, which were attributed to feelings of increased intimacy. Individual differences and variability on how to handle sexuality after stroke: Different strategies were used to manage unwanted negative changes such as actively trying to adapt by planning time with the partner and decreasing pressure or stress. Open communication about sexuality with one's partner also was described as important. Strikingly, most informants with negative experiences of sexual life attributed these to age or a stage in life and not to the stroke or health issues. Furthermore, they compared themselves with others without stroke but with changes in sexuality, thus achieving a sense of normality. Communication and counseling concerning sexuality-many unmet needs: Experiences of communication with health care professionals varied. Very few informants had received any information or discussed sexuality with health care professionals during the 6 years since the stroke, although such needs were identified by most informants. CLINICAL TRANSLATION: When encountering individuals with previous stroke, there is a need for vigilance concerning individual experiences of stroke on sexuality to avoid under- or overestimating the impact and to raise the subject, which currently might be seldom. STRENGTHS AND LIMITATIONS: Individuals with long-term diverse consequences of stroke and with different sociodemographic backgrounds were interviewed. Because most individuals in the present study had retained functioning, this could decrease transferability to populations with more severe sequelae after stroke. CONCLUSIONS AND IMPLICATIONS: The individuals in the present study had different experiences of sexuality after stroke. The results point to the importance of acknowledging sexual rehabilitation as part of holistic person-centered stroke rehabilitation. Nilsson MI, Fugl-Meyer K, von Koch L, Ytterberg C. Experiences of Sexuality Six Years After Stroke: A Qualitative Study. J Sex Med 2017;14:797-803.


Assuntos
Comportamento Sexual/fisiologia , Comportamento Sexual/psicologia , Acidente Vascular Cerebral/fisiopatologia , Acidente Vascular Cerebral/psicologia , Adulto , Idoso , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Parceiros Sexuais/psicologia , Fatores Socioeconômicos
13.
BMC Health Serv Res ; 17(1): 24, 2017 01 11.
Artigo em Inglês | MEDLINE | ID: mdl-28077130

RESUMO

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. 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.


Assuntos
Doença Crônica/terapia , Atenção à Saúde/economia , Assistência Centrada no Paciente , Doença Crônica/economia , Análise Custo-Benefício , Atenção à Saúde/normas , Humanos , Avaliação de Resultados em Cuidados de Saúde
14.
Scand J Caring Sci ; 31(4): 727-738, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27862156

RESUMO

The physical environment is of particular importance for supporting activities and interactions among older people living in residential care facilities (RCFs) who spend most of their time inside the facility. More knowledge is needed regarding the complex relationships between older people and environmental aspects in long-term care. The present study aimed to explore how the physical environment influences resident activities and interactions at two RCFs by using a mixed-method approach. Environmental assessments were conducted via the Swedish version of the Sheffield Care Environment Assessment Matrix (S-SCEAM), and resident activities, interactions and locations were assessed through an adapted version of the Dementia Care Mapping (DCM). The Observed Emotion Rating Scale (OERS) was used to assess residents' affective states. Field notes and walk-along interviews were also used. Findings indicate that the design of the physical environment influenced the residents' activities and interactions. Private apartments and dining areas showed high environmental quality at both RCFs, whereas the overall layout had lower quality. Safety was highly supported. Despite high environmental quality in general, several factors restricted resident activities. To optimise care for older people, the design process must clearly focus on accessible environments that provide options for residents to use the facility independently.


Assuntos
Instituições Residenciais/organização & administração , Idoso , Feminino , Humanos , Masculino
15.
Clin Rehabil ; 30(8): 765-75, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-26396166

RESUMO

OBJECTIVE: Compare caregiver burden, provision of informal care, participation in everyday occupations and life satisfaction of caregivers to people with stroke, who either had received a client-centred, activities of daily living intervention or usual activities of daily living interventions. DESIGN: A multicentre cluster randomized controlled trial in which 16 rehabilitation units were randomly assigned to deliver a client-centred, activities of daily living intervention or usual activities of daily living interventions. Caregiver outcomes were compared cross-sectionally at 12 months and changes in outcomes between three and 12 months after people with stroke were included in the study. SETTING: Inpatient and outpatient rehabilitation. PARTICIPANTS: Caregivers of people with stroke enrolled in the trial. INTERVENTION: A client-centred, activities of daily living intervention aiming to increase agency in daily activities and participation in everyday life for people after stroke. MAIN MEASURES: Caregiver Burden Scale, Occupational Gaps Questionnaire, LiSat-11. RESULTS: There were no differences in outcomes between caregivers in the client-centred, activities of daily living (n = 88) and the usual activities of daily living (n = 95) group at 12 months. The caregiver burden score was 42.7 vs. 41.8, p = 0.75, mean occupational gaps were 3.5 vs. 4.0, p = 0.52 and satisfaction with life was 53% vs. 50%, p = 0.87. There were no differences in changes between three and 12 months. However, within groups there were significant differences in caregiver burden, factor general strain, for caregivers in the client-centred, activities of daily living group, and in provision of informal care for the usual activities of daily living group. CONCLUSION: The client-centred intervention did not bring about any difference between caregiver-groups, but within groups some difference was found for caregiver burden and informal care.


Assuntos
Atividades Cotidianas , Assistência Centrada no Paciente , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral/fisiopatologia , Idoso , Cuidadores , Análise por Conglomerados , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/psicologia , Resultado do Tratamento
16.
Clin Rehabil ; 30(12): 1200-1210, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26647421

RESUMO

OBJECTIVE: The aim of the present study was to compare client-centeredness as it was documented by the occupational therapists in the units randomized to the intervention clusters with documentation by occupational therapists in the control clusters. DESIGN: Comparison of medical records. SETTING: The study is conducted in a context of a randomized controlled trial in Sweden, with 16 post-stroke rehabilitation units cluster randomized to intervention or control group. SUBJECTS: Occupational therapist documentation in medical records of 279 clients with stroke. MAIN MEASURES: The medical records were reviewed for their level of client-centeredness using a protocol developed from the Stewart et al model. The occupational therapists in the intervention groups participated in a workshop training to enhance their client-centeredness. RESULTS: Occupational therapists with training in client-centeredness documented significantly more on goal setting (OR = 4.1; 95% CI, 1.87-8.81), on client participation in goal setting (OR=11.34; 95% CI, 5.97-21.57), on how the goals could be reached (OR=2.8; 95% CI, 1.7-4.62), on client participation in how goals could be reached (OR=4.56; 95% CI, 2.73-7.64), on the follow-up on goals (OR=5.77; 95% CI, 2.78-11-98) and on client participation in follow-up on goals (OR=7.44, 95% CI, 4.33-12.8). This association remained after adjustment for healthcare setting, client socio-demographic variables, and stroke severity. CONCLUSION: Documentation of goal setting and client participation in goal setting can be influenced by training.


Assuntos
Terapia Ocupacional , Planejamento de Assistência ao Paciente , Assistência Centrada no Paciente , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral/psicologia , Adolescente , Adulto , Idoso , Humanos , Prontuários Médicos , Pessoa de Meia-Idade , Participação do Paciente , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/fisiopatologia , Adulto Jovem
17.
Stroke ; 46(9): 2688-90, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26243230

RESUMO

BACKGROUND AND PURPOSE: The purpose was to investigate the occurrence of self-reported falls in people with stroke at 3, 6, and 12 months and 6 years post stroke and predictors for falls during 6 years. METHODS: A prospective study involving 121 people with stroke. Data were obtained through structured interviews and assessments. Generalized estimating equation modeling using proportional odds was used to explore the predictive value of fall history, functioning/disability, and personal factors during 6 years. RESULTS: The proportion of fallers constituted of 35%, 26%, 33%, and 35% of the sample at 3, 6, and 12 months and 6 years of follow-up, respectively. Higher perceived effect of stroke on activities of daily living (odds ratio, 1.37; 95% confidence interval, 1.04-1.80), falls at 3 months (odds ratio, 1.0; 95% confidence interval, 1.01-3.94), and no gait/balance disability at baseline (odds ratio, 7.29; 95% confidence interval, 1.99-26.73) were predictors for future falls. During the 6 years, the odds for a fall decreased for participants with gait/balance disability at baseline but increased for those with no gait/balance disability. CONCLUSIONS: Results highlight the importance of performing fall risk evaluations over time among people with stroke, even when gait and balance functioning initially post stroke is good.


Assuntos
Acidentes por Quedas/estatística & dados numéricos , Marcha/fisiologia , Equilíbrio Postural/fisiologia , Acidente Vascular Cerebral/fisiopatologia , Atividades Cotidianas , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Medição de Risco , Fatores de Risco , Fatores de Tempo
18.
Arch Phys Med Rehabil ; 95(12): 2428-34, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25004466

RESUMO

OBJECTIVE: To evaluate the effects of a balance exercise program on falls in people with mild to moderate multiple sclerosis (MS). DESIGN: Multicenter, single-blinded, single-group, pretest-posttest trial. SETTING: Seven rehabilitation units within 5 county councils. PARTICIPANTS: Community-dwelling adults with MS (N=32) able to walk 100m but unable to maintain 30-second tandem stance with arms alongside the body. INTERVENTION: Seven weeks of twice-weekly, physiotherapist-led 60-minute sessions of group-based balance exercise targeting core stability, dual tasking, and sensory strategies (CoDuSe). MAIN OUTCOME MEASURES: Primary outcomes: number of prospectively reported falls and proportion of participants classified as fallers during 7 preintervention weeks, intervention period, and 7 postintervention weeks. Secondary outcomes: balance performance on the Berg Balance Scale, Four Square Step Test, sit-to-stand test, timed Up and Go test (alone and with cognitive component), and Functional Gait Assessment Scale; perceived limitations in walking on the 12-item MS Walking Scale; and balance confidence on the Activities-specific Balance Confidence Scale rated 7 weeks before intervention, directly after intervention, and 7 weeks later. RESULTS: Number of falls (166 to 43; P≤.001) and proportion of fallers (17/32 to 10/32; P≤.039) decreased significantly between the preintervention and postintervention periods. Balance performance improved significantly. No significant differences were detected for perceived limitations in walking, balance confidence, the timed Up and Go test, or sit-to-stand test. CONCLUSIONS: The CoDuSe program reduced falls and proportion of fallers and improved balance performance in people with mild to moderate MS but did not significantly alter perceived limitations in walking and balance confidence.


Assuntos
Acidentes por Quedas/prevenção & controle , Terapia por Exercício/métodos , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/reabilitação , Equilíbrio Postural/fisiologia , Adulto , Idoso , Teste de Esforço , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Método Simples-Cego
19.
Sci Rep ; 14(1): 7308, 2024 03 27.
Artigo em Inglês | MEDLINE | ID: mdl-38538651

RESUMO

Stroke may affect physical functioning, cognition, and mental and social aspects of one's life. Health literacy and self-efficacy are associated with positive health outcomes and are important factors for managing the diverse consequences of a stroke. However, there is very little literature on the association between health literacy and self-efficacy. This study aimed to investigate the association between health literacy and self-efficacy among stroke survivors 1 year after discharge from hospital. Participants in this cross-sectional study were patients diagnosed with a stroke, mainly a mild stroke, who were referred to rehabilitation in primary care after discharge from hospital in Sweden. Data was collected using questionnaires, performance-based tests, and medical records. Ordinal logistic regression was used to analyze the association between general self-efficacy and health literacy in adjusted models. The analysis revealed that higher levels of general self-efficacy and higher levels of performing activities of daily living were associated with higher levels of health literacy. Stroke survivors with higher general self-efficacy also report higher health literacy 1-year post-discharge from hospital. Future studies should focus on the pathways by which health literacy and general self-efficacy work among stroke survivors and in populations with low health literacy, severe stroke or significant cognitive impairments.


Assuntos
Letramento em Saúde , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Autoeficácia , Atividades Cotidianas/psicologia , Estudos Transversais , Alta do Paciente , Assistência ao Convalescente , Acidente Vascular Cerebral/complicações , Sobreviventes/psicologia
20.
PLoS One ; 19(3): e0299800, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38483869

RESUMO

INTRODUCTION: Care transitions following a stroke call for integrated care approaches to reduce death and disability. The proposed research described in this study protocol aims to evaluate the effectiveness of a person-centred multicomponent care transition support and the process in terms of contextual moderators, implementation aspects and mechanisms of impact. METHODS: A non-randomized controlled trial design will be used. The intervention includes person-centred dialogue intended to permeate all patient-provider communication, various pedagogical modes of information, a person-centred care and rehabilitation plan, and a bridging e-meeting to prepare patients for homecoming. Patients with stroke or TIA who are to be discharged from the participating hospitals to home and referred to a neurorehabilitation team for continued rehabilitation will be included. Follow-ups will be conducted at one week, 3 months and 12 months. Data will be collected on the primary outcome of perceived quality of the care transition, and on the secondary outcomes of health literacy, medication adherence, and perceived person-centeredness. Data for process evaluation will be collected through semi-structured interviews, focus groups, participatory observations, and the Normalisation Measure Development Questionnaire. DISCUSSION: The study will provide insights on implementation, mechanisms of impact, contextual moderators, and effectiveness of a care transition support, targeting a poorly functioning part of the care trajectory for people with stroke and TIA. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05646589.


Assuntos
Ataque Isquêmico Transitório , Acidente Vascular Cerebral , Humanos , Alta do Paciente , Assistência Centrada no Paciente , Qualidade de Vida , Acidente Vascular Cerebral/terapia , Ensaios Clínicos Controlados como Assunto
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