Barriers to accessing the culturally sensitive healthcare that could decrease the disabling effects of arthritis in a rural Mayan community: a qualitative inquiry.

The impact of living with arthritis in a rural Mexican Mayan community along with the barriers encountered by people living with this chronic condition were investigated in this study. The community needs around this health issue were investigated by conducting an ethnographic study using data obtained during two time periods (August 2012-April 2013 and December 2013-December 2014). During the first period, fieldwork observations and interviews with 65 individuals, which included people with arthritis, health professionals, traditional health providers, and community leaders were undertaken. During the second period, 46 community meetings were conducted to identify the needs associated with arthritis in the municipality. Data were analyzed following a modified version of the Framework approach. The results show that arthritis reduces the health-related quality of life of the people in Chankom through a process of disablement, conditioning a need to access culturally sensitive healthcare. Availability, attainability, and acceptability barriers prevent access to this type of healthcare and result from power imbalance between indigenous and non-indigenous people. There is a need to develop culturally sensitive rehabilitation services for people living with arthritis in Chankom. Mayan people should be involved in the design and implementation of these services. Moreover, it is important to improve our understanding of the processes behind the healthcare access inequities identified in this study by attending to the historical generation of current social, economical, cultural, and political structures.

The impact of arthritis on the physical function of a rural Maya-Yucateco community and factors associated with its prevalence: a cross sectional, community-based study.

This study aims to evaluate the impact of arthritis on the physical function of people living in a Maya-Yucateco rural community and to assess the association of known modifiable risk factors with the prevalence of overall arthritis and its main types (osteoarthritis and rheumatoid arthritis). Using a cross-sectional, community-based census design, data collected from the adult population (≥18 years) of the Municipality of Chankom, Yucatán, México, were analyzed (n = 1523). Participants' physical function was assessed using a culturized version of the health assessment questionnaire disability index. Social, physical, and behavioral factors linked to overall arthritis, osteoarthritis, and rheumatoid arthritis, were assessed through the "Community-Oriented-Program-for-the-Control-of-Rheumatic-Diseases [COPCORD]" questionnaire. A physiatrist and a rheumatologist confirmed all osteoarthritis and rheumatoid arthritis cases using the American College of Rheumatology criteria. Arthritis was confirmed in 169 cases (22 %, 95 % confidence interval (CI) 19-25) of those assessed for musculoskeletal symptoms (n = 779): osteoarthritis = 144, rheumatoid arthritis = 17, and non-specific arthritis = 8. Arthritis was associated with a higher prevalence of disability after controlling for age, gender, and number of comorbidities (odds ratio = 4.0, 95 % CI 3.0-6.0). Higher level of wealth was associated with lower arthritis prevalence (odds ratio = 0.9, 95% CI 0.8-0.9). Higher body mass index was associated with higher hip and/or knee osteoarthritis prevalence (odds ratio = 1.1, 95 % CI 1.03-1.1). Arthritis is highly associated with disability in the Mayan people living in Chankom. The prevalence of arthritis in Chankom is associated with social factors, such as people's level of wealth, while the prevalence of low-extremity osteoarthritis is associated with people's body mass index.

Performance of the measures of processes of care for adults and service providers in rehabilitation settings.

INTRODUCTION: In recent years, client-centered care has been embraced as a new philosophy of care by many organizations around the world. Clinicians and researchers have identified the need for valid and reliable outcome measures that are easy to use to evaluate success of implementation of new concepts. OBJECTIVE: The current study was developed to complete adaptation and field testing of the companion patient-reported measures of processes of care for adults (MPOC-A) and the service provider self-reflection measure of processes of care for service providers working with adult clients (MPOC-SP(A)). DESIGN: A validation study. SETTINGS: In-patient rehabilitation facilities. MAIN OUTCOME MEASURES: MPOC-A and measure of processes of care for service providers working with adult clients (MPOC-SP(A)). RESULTS: Three hundred and eighty-four health care providers, 61 patients, and 16 family members completed the questionnaires. Good to excellent internal consistency (0.71-0.88 for health care professionals, 0.82-0.90 for patients, and 0.87-0.94 for family members), as well as moderate to good correlations between domains (0.40-0.78 for health care professionals and 0.52-0.84 for clients) supported internal reliability of the tools. Exploratory factor analysis of the MPOC-SP(A) responses supported the multidimensionality of the questionnaire. CONCLUSION: MPOC-A and MPOC-SP(A) are valid and reliable tools to assess patient and service-provider accounts, respectively, of the extent to which they experience, or are able to provide, client-centered service. Research should now be undertaken to explore in more detail the relationships between client experience and provider reports of their own behavior.

Development and Evaluation of Self-Management and Task-Oriented Approach to Rehabilitation Training (START) in the Home: Case Report.

BACKGROUND: The incidence of stroke and subsequent level of disability will increase, as age is the greatest risk factor for stroke and the world's population is aging. Hospital admissions are too brief for patients to regain necessary function. Research to examine therapy delivered within the home environment has the potential to expedite relearning of function and reduce health care expenditures. PURPOSE: This case report describes the use of the knowledge-to-action cycle (KTA) to develop and evaluate an evidence-based approach for rehabilitation in the home that incorporates self-management and task-oriented functional training (TOFT) for people with stroke. CASE DESCRIPTION: The KTA cycle was used to guide adaptation of evidence from self-management and TOFT into an approach titled START (Self-Management and Task-Oriented Approach to Rehabilitation Training). Three stakeholder symposiums identified barriers and supports to implementation. Clinical practice leaders were engaged as partners in the development of the intervention. An online learning management system housed the resources to support therapist training. Therapist focus groups were conducted and stroke outcomes were used to assess patient response. OUTCOMES: Eight therapists completed 4 workshops and applied the home intervention in 12 people with stroke. A mentoring process for therapists included feedback from peers and experts after viewing treatment videos. Therapist response was determined from the focus groups; patient response was measured by standardized assessments. The therapists noted that the intervention was easier to implement with patients who were motivated and had minimal cognitive impairment. DISCUSSION: The KTA cycle provided a structure for the development of this evidence-based rehabilitation intervention, which was feasible to implement in the home. Further evaluation needs to be undertaken to assess the effectiveness of START.

Exploring Client-Centered Care Experiences in In-Patient Rehabilitation Settings.

Patient or client-centered care has been widely accepted as an essential component of health care delivery in many countries. Few studies explore actual implementation of client-centered principles and clients' and health care providers' (HCPs) experiences with these approaches. Our objective was to explore current models of delivery of rehabilitation services from the perspectives of patients, families, and HCPs. We conducted semistructured interviews with patients, families, and HCPs of one of four rehabilitation facilities in South-Central Ontario, Canada. Being on common grounds/Working toward client set goals was the main category identified by both clients and HCPs. Although successful partnerships were created, the majority of clients assumed a passive position. Clients needed more information about the rehabilitation progression and alternative treatment options. The results of the study suggest that we need to encourage and educate clients to become motivated, well-informed, proactive participants in their care.

Developing Community-Based Rehabilitation Programs for Musculoskeletal Diseases in Low-Income Areas of Mexico: The Community-Based Rehabilitation for Low-Income Communities Living With Rheumatic Diseases (CONCORD) Protocol.

BACKGROUND: The negative impact of musculoskeletal diseases on the physical function and quality of life of people living in developing countries is considerable. This disabling effect is even more marked in low-socioeconomic communities within developing countries. In Mexico, there is a need to create community-based rehabilitation programs for people living with musculoskeletal diseases in low-socioeconomic areas. These programs should be directed to prevent and decrease disability, accommodating the specific local culture of communities. OBJECTIVE: The objective of this paper is to describe a research protocol designed to develop, implement, and evaluate culturally sensitive community-based rehabilitation programs aiming to decrease disability of people living with musculoskeletal diseases in two low-income Mexican communities. METHODS: A community-based participatory research approach is proposed, including multi and transdisciplinary efforts among the community, medical anthropology, and the health sciences. The project is structured in 4 main stages: (1) situation analysis, (2) program development, (3) program implementation, and (4) program evaluation. Each stage includes the use of quantitative and qualitative methods (mixed method program). RESULTS: So far, we obtained resources from a Mexican federal agency and completed stage one of the project at Chankom, Yucatán. We are currently receiving funding from an international agency to complete stage two at this same location. We expect that the project at Chankom will be concluded by December of 2017. On the other hand, we just started the execution of stage one at Nuevo León with funding from a Mexican federal agency. We expect to conclude the project at this site by September of 2018. CONCLUSIONS: Using a community-based participatory research approach and a mixed method program could result in the creation of culturally sensitive community-based rehabilitation programs that promote community development and decrease the disabling effects of musculoskeletal diseases within two low-income Mexican communities.

Aging with HIV: a model of disability.

The purpose of this qualitative study was to develop a theoretical model describing the disability experienced by older adults living with HIV. Forty nine HIV positive men and women over the age of 50 years participated in in-depth qualitative interviews. Transcribed interviews were analyzed using grounded theory techniques. Uncertainty or worrying about the future was at the core of the model. Components of disability including symptoms and impairments, difficulties with day to day activities and challenges to social participation were experienced in the context of extrinsic or environmental factors (social support, stigma) and intrinsic contextual factors (positive living strategies, age). Time was an overarching component of the model. The model suggests areas for interventions to prevent or reduce disability related to the consequences of aging with HIV and improve overall quality of life.

A new comprehension and communication tool: a valuable resource for internationally educated occupational therapists.

BACKGROUND/AIM: The need was identified for a way to assess internationally educated occupational therapists' skills in understanding and communicating professional terminology used in occupational therapy practice. The project aim was to develop and validate such a resource. METHODS: A scenario-based assessment was developed using a three-phase process for tool development. The development process involved completion of a literature scan of professional terminology used in occupational therapy practice; selection of terms and concepts commonly used in occupational therapy practice; and, creation of practice-based scenarios illustrating key concepts complete with rating rubrics. An advisory group provided oversight, and a sample of internationally educated occupational therapists completed pilot and validity testing. RESULTS: The initial findings showed the assessment to be easy to complete and sensitive to testing understanding of the defined terms. CONCLUSIONS: The final outcome is an assessment tool that has broad application for occupational therapists wishing to enter professional practice in a new country.

Self-management interventions for chronic disease: a systematic scoping review.

OBJECTIVE: To investigate the contributions of physiotherapy and occupational therapy to self-management interventions and the theoretical models used to support these interventions in chronic disease. DATA SOURCES: We conducted two literature searches to identify studies that evaluated self-management interventions involving physiotherapists and occupational therapists in MEDLINE, the Cochrane Library, CINAHL, EMBASE, AMED (Allied and Complementary Medicine), SPORTdiscus, and REHABDATA databases. STUDY SELECTION: Four investigator pairs screened article title and abstract, then full text with inclusion criteria. Selected articles (n = 57) included adults who received a chronic disease self-management intervention, developed or delivered by a physiotherapist and/or an occupational therapist compared with a control group. DATA EXTRACTION: Four pairs of investigators performed independent reviews of each article and data extraction included: (a) participant characteristics, (b) the self-management intervention, (c) the comparison intervention, (d) outcome measures, construct measured and results. DATA SYNTHESIS: A total of 47 articles reported the involvement of physiotherapy in self-management compared with 10 occupational therapy articles. The type of chronic condition produced different yields: arthritis n = 21 articles; chronic obstructive pulmonary disease and chronic pain n = 9 articles each. The theoretical frameworks most frequently cited were social cognitive theory and self-efficacy theory. Physical activity was the predominant focus of the self-management interventions. Physiotherapy programmes included disease-specific education, fatigue, posture, and pain management, while occupational therapists concentrated on joint protection, fatigue, and stress management. CONCLUSIONS: Physiotherapists and occupational therapists make moderate contributions to self-management interventions. Most of these interventions are disease-specific and are most frequently based on the principles of behaviour change theories.

Aging with HIV and disability: the role of uncertainty.

Due to advances in treatment, people with HIV are living longer and developing disabilities related to the virus, adverse side effects of medications, and aging. Illness-related uncertainty has been shown to contribute to disablement; however, there is little understanding of the uncertainties related to aging with HIV. The purpose of this research was to describe the contribution of uncertainty to the disability experienced by older adults living with HIV. Forty-nine men and women living with HIV and 50 years or older participated in in-depth qualitative interviews exploring various aspects of social participation and disability. Transcriptions of the interviews were analyzed using a grounded theory approach. Age-related uncertainties were described in the following themes: source of health challenge; health providers' age-related knowledge and skills; financial uncertainty; transition to retirement; appropriate long-term housing, and uncertainty over who would care for them. While not directly attributable to aging, the episodic nature of HIV left many with uncertainties related to when their next episode of illness would occur and often resulted in an inability to plan in advance. Results highlight the need to focus on the notion of successful and positive aging with the view to identifying effective interventions that reduce disability and enhance the overall health of older adults with HIV. This work builds on previous studies highlighting the role of uncertainty in the disability experience by identifying age-related components specific to older adults aging with HIV.

A grounded theory of social participation among older women living with HIV.

BACKGROUND: As adults age with human immunodeficiency virus (HIV), the role for rehabilitation continues to emerge. Understanding how social participation is affected among women aging with HIV can inform occupational therapy assessment and treatment. PURPOSE: Our purpose was to develop a theoretical model that describes the experiences of social participation from the perspective of older women living with HIV. METHOD: A grounded theory methodological approach was utilized. We conducted interviews with 20 women living with HIV, age 50 or older, to explore various aspects of social participation, including self-care, relationships with others, and access to health and social services. Emergent themes informed the theoretical model. FINDINGS: The theoretical model comprises four concepts related to social participation: social engagement, social isolation, contrasting perceptions about factors variably influencing participation, and contextual influences that may enhance or hinder social participation. IMPLICATIONS: Women aging with HIV experience social participation as a dynamic process involving social engagement and isolation. Contextual influences may promote and impede social participation.

Renegotiating environments to achieve participation: A metasynthesis of qualitative chronic disease research.

BACKGROUND: Qualitative studies describe environmental influences on participation in adults with chronic disease, but translating these findings into practice can be difficult. PURPOSE: This study sought to synthesize qualitative research findings regarding the influence of environmental factors on participation among adults with chronic disease. METHODS: Searching revealed 31 I articles that describe the link between environment and participation for adults with osteoarthritis, rheumatoid arthritis, diabetes mellitus, heart disease, cancer, chronic obstructive pulmonary disease, and/or depression. Study findings were analyzed using metasynthesis methods to identify themes. FINDINGS: For adults with chronic disease, renegotiating their environments and occupations to achieve, maintain, or rework their participation involves understanding support processes, being ordinary and able, navigating systems, and navigating physical environments. IMPLICATIONS: Key areas that occupational therapy interventions can target are facilitating constructive collaboration between client and support person, fostering connections with others, recognizing cultural pressure to be ordinary and able, and advocating for supportive policy and practice.

Is Health Related Quality Of Life of people living with chronic conditions related to patient satisfaction with care?

UNLABELLED: More than 50% of people over the age of 30 live with at least one chronic condition that influences their Health Related Quality of Life (HRQOL). No uniform framework for conceptualization of HRQOL is currently recognized, although several important domains have been identified. Recently, satisfaction with care has been suggested as an important component to be included in the measures of HRQOL. PURPOSE: The objective of this review is to explore what is known from the literature about the relationship between satisfaction with care and HRQOL in patients living with chronic conditions. METHODS: A scoping review methodology guided this work. RESULTS: The results support the observation of a positive correlation between satisfaction with care and HRQOL; however, the directionality of the relationships could not be established. Although change in the way we organize and provide treatment might not be expected to lead to a significant change in functional performance of the individuals, we can potentially affect people's perception of disability, and improve their control and coping with the illness. CONCLUSIONS: The review highlights the importance of using appropriate and psychometrically sound measures when assessing HRQOL. Studies are needed that explore longitudinally the relationships between the care experiences and HRQOL.

Individuals with stroke reporting unmet need for occupational therapy following discharge from hospital.

ABSTRACT The purpose of this study was to identify the characteristics and needs of individuals with stroke who report an unmet need for occupational therapy following discharge from hospital. Needs were assessed using a semi-structured interview and a survey in a sample of 209 adults hospitalized with a stroke. Participants were divided into three groups-those needing occupational therapy; those receiving occupational therapy, and those neither needing nor receiving occupational therapy. Thirteen percent (n = 28) reported an unmet need for occupational therapy and were more dependent in activities of daily living (ADL) before and after their stroke and had lower acute functional independence measure (FIM) scores than the comparison groups (p < .05). Participants with unmet needs for occupational therapy were more likely to report unmet needs related to upper extremity function, basic and instrumental ADL, leisure, assistive devices, and the resumption of social roles.

The quality of websites addressing fibromyalgia: an assessment of quality and readability using standardised tools.

Background Patients living with fibromyalgia strongly prefer to access health information on the web. However, the majority of subjects in previous studies strongly expressed their concerns about the quality of online information resources. Objectives The purpose of this study was to evaluate existing online fibromyalgia information resources for content, quality and readability by using standardised quality and readability tools. Methods The first 25 websites were identified using Google and the search keyword 'fibromyalgia'. Pairs of raters independently evaluated website quality using two structured tools (DISCERN and a quality checklist). Readability was assessed using the Flesch Reading Ease score maps. Results Ranking of the websites' quality varied by the tool used, although there was general agreement about the top three websites (Fibromyalgia Information, Fibromyalgia Information Foundation and National Institute of Arthritis and Musculoskeletal and Skin Diseases). Content analysis indicated that 72% of websites provided information on treatment options, 68% on symptoms, 60% on diagnosis and 40% on coping and resources. DISCERN ratings classified 32% websites as 'very good', 32% as 'good and 36% as 'marginal'. The mean overall DISCERN score was 36.88 (good). Only 16% of websites met the recommended literacy level grade of 6-8 (range 7-15). Conclusion Higher quality websites tended to be less readable. Online fibromyalgia information resources do not provide comprehensive information about fibromyalgia, and have low quality and poor readability. While information is very important for those living with fibromyalgia, current resources are unlikely to provide necessary or accurate information, and may not be usable for most people.

Advocacy in occupational therapy: exploring clinicians' reasons and experiences of advocacy.

BACKGROUND: Occupational therapy literature encourages therapists to advocate, yet any member of the team could advocate with/for people with disabilities. There is a need to determine why occupational therapists provide these services and how they learn to advocate. PURPOSE: The objective of this article is to understand the meaning of advocacy for occupational therapists by exploring their reasons for advocating. METHODS: Interpretive phenomenology and the social model of disability were used to interview 13 occupational therapists about their advocacy experiences. Data analysis was completed using a Gadamerian-based approach. FINDINGS: Occupational therapists advocate for a number of reasons; some relate to themselves, some relate to clients, and others relate to both. Learning about advocacy may be understood as taking place on a continuum of time. IMPLICATIONS: The occupational therapist's unique reason for advocating is to facilitate the client's occupational performance. A new definition of advocacy is presented based on study findings.

The physical environment as a fall risk factor in older adults: Systematic review and meta-analysis of cross-sectional and cohort studies.

BACKGROUND/AIM: Evidence that the physical environment is a fall risk factor in older adults is inconsistent. The study evaluated and summarised evidence of the physical environment as a fall risk factor. METHODS: Eight databases (1985-2006) were searched. Investigators evaluated quality of two categories (cross-sectional and cohort) of studies, extracted and analysed data. RESULTS: Cross-sectional: falls occur in a variety of environments; gait aids were present in approximately 30% of falls. COHORT: Home hazards increased fall risk (odds ratio (OR) = 1.15; 95% confidence interval (CI): 0.97-1.36) although not significantly. When only the high quality studies were included, the OR = 1.38 (95% CI: 1.03-1.87), which was statistically significant. Use of mobility aids significantly increased fall risk in community (OR = 2.07; 95% CI: 1.59-2.71) and institutional (OR = 1.77; 95% CI: 1.66-1.89) settings. CONCLUSIONS: Home hazards appear to be a significant risk factor in older community-dwelling adults, although they may present the greatest risk for persons who fall repeatedly. Future research should examine relationships between mobility impairments, use of mobility aids and falls.

Barriers and facilitators to participation in work among Canadian women living with HIV/AIDS.

BACKGROUND: The impact of human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) on the participation of women in paid/unpaid work is a little understood phenomenon. PURPOSE: A research study exploring the lived experiences of Canadian women's engagement in paid/unpaid work and the barriers and facilitators mediating this phenomenon. METHOD: Study design employed a phenomenological approach using data subanalysis of transcripts, double coded for agreement and to ensure saturation of themes. RESULTS: Analysis of the data revealed an overarching theme of engagement mediated by interacting forces with eight subthemes: active management, agency constrained by structure, the nature of supports, HIV/AIDS sequelae, work as a galvanizing force, the presence of children, the element of fear, and negotiation of self. IMPLICATIONS: Insights gained indicate a need for further education, resources, supports, and policy changes at the systems level. Occupational therapy is positioned to broaden the role of rehabilitation in the context of HIV/AIDS, episodic disability, and work participation.

Needs assessment of individuals with stroke after discharge from hospital stratified by acute Functional Independence Measure score.

PURPOSE: To determine the needs, barriers and facilitators of function in individuals with stroke after discharge from hospital. To examine the results stratified by the patient's acute score (<41, 41-80, >80) on the functional independence measure (FIM). METHOD: This was a cohort study of 209 patients who had been admitted to hospital because of stroke. Patients were interviewed following hospital discharge using a semi-structured interview and asked to complete and return a quantitative closed-ended survey. RESULTS: For most domains, frequencies of needs varied across the FIM groups. Combining all FIM groups, the interview showed needs related to: physical impairments (35%), time for recovery (33%), education (28%), medical advice (25%), therapies and services (21%), social needs (19%) and emotional needs (18%). From the interview, the most frequent barriers were physical impairments (55%) and emotional concerns (40%). Common facilitators were family support (54%), therapies and medical care (40%) and personal attitudes (22%). Additional needs from the survey concerned: IADL, mobility, ADL, recreation, finances, communication and employment. Additional barriers from the survey were: attitudes, social participation, environments and limited services. CONCLUSIONS: There is a large and varied number of needs and barriers following discharge from hospital that have planning and advocacy implications for rehabilitation teams.

Experiences of nurses working in a stroke rehabilitation unit.

AIM: This paper is a report of a study to explore the perceptions, beliefs and feelings of a group of nurses who provided care to individuals admitted to a stroke rehabilitation unit. BACKGROUND: Following a stroke, survivors should ideally be referred to multidisciplinary inpatient rehabilitation programmes, which attain better outcomes compared to the care provided on general medical wards. However, to achieve these outcomes, team members must work closely together. Communication problems have been reported in these teams, and other members may consider that nurses do not practise functional activities with patients. METHODS: An interpretive phenomenological approach was adopted. Eight nurses in one Canadian stroke rehabilitation unit were interviewed during 2004-2005 about their experiences of providing care to stroke survivors. FINDINGS: The nurses enjoyed giving this type of care, feeling that their role was pivotal to the rehabilitation process. At times, they found it difficult to let patients struggle to complete their activities of daily living. The nurses felt that lack of resources, including time, contributed to stroke survivors being short-changed in their rehabilitation nursing care. Despite holding strong views that others devalued their role within the stroke team, the nurses retained positive attitudes. CONCLUSION: Stroke teams need to recognize the constraints nurses experience in fulfilling their stroke rehabilitation role in order to foster the collegial support that could contribute to a more interactive and respectful work environment. They also need to consider ways to increase the job satisfaction of nurses working in stroke rehabilitation settings.