“My view that disability is okay sometimes clashes”: experiences of two disabled occupational therapists

Abstract

Aims: While disability is the focus of much attention in occupational therapy, there has been little attention paid to disability within the profession. Disabled therapists not only bring valuable perspectives on disability, but also pose important challenges to taken-for-granted assumptions about impairment and disability within the profession. At the same time, their cultural beliefs and values may clash with core assumptions of the profession. Methods: This study analyses interview data from two disabled occupational therapists, part of a larger study with cultural minority therapists. Semi-structured interviews explored their experiences of professional practice in the context of societal belief in the superiority of non-disabled and “normal” ways of doing and being. Major findings: Some cultural values of participants clashed with the values and beliefs of their profession, particularly concerning independence. Negative attitudes of colleagues and managers were the key barriers to practice. The responsibility for bridging the disabled/non-disabled cultural divide rested with the disabled therapists, exacerbating inequity. Nonetheless, these therapists believed their disability experiences had advantages for practice. Conclusions: Disabled therapists may be required to engage in invisible work to communicate across cultural differences, and to educate others. Respectful openness to difference could enhance the practice competence of both disabled therapists and their non-disabled colleagues. This demands critical reflexive attention to ableism within the profession.     

“It's Being Compassionate,Not Making Assumptions”: Transmasculine and Nonbinary Young Adults' Experiences of “Women's” Health Care Settings

BackgroundTransgender and nonbinary (TNB) individuals assigned female sex at birth experience discrimination, misgendering, problems with insurance, and denial of services when accessing health care. This study aimed to understand the experiences of TNB young adults in accessing “women's” health care—a form of care that is structurally gendered that few studies have investigated.MethodsIn 2015, we conducted in-depth interviews with 20 TNB young (ages 18–29) adults assigned female sex at birth. We thematically analyzed the data.ResultsParticipants described feelings of comfort and trust—and lack thereof—at every step of the health care–seeking process, including scheduling, checking in, waiting, and interactions with clinicians and other staff. Gendered language served as a constant stressor; participants—especially nonbinary participants—noted few opportunities to provide their correct pronouns and names. Participants relayed negative experiences associated with waiting rooms in “women's” health care spaces, where TNB patients are forced to disclose their identity simply through their presence or owing to actions of staff that out them. These concerns deterred some from seeking care, with most expressing discomfort or anxiety that caused them to feel unsafe. Participants described “women's” health care providers making assumptions about their anatomy, reproductive desires, sexual orientation, and sexual practices, as well as inappropriately and harmfully emphasizing their bodies and TNB identities during health care interactions. Clinician competence and humility engendered participants' feelings of safety and undergirded their interest in engaging with “women's” health care.ConclusionsA lack of patient-centered, TNB-competent care in structurally gendered health settings exacerbates health care and health inequities for TNB young adults.     

Defining the Role and Value of Physicians Who Primarily Practice in Nursing Homes: Perspectives of Nursing Home Physicians

ObjectiveTo identify the perceptions of physicians with expertise in nursing home care on the value of physicians who primarily practice in nursing homes, often referred to as “SNFists,” with the goal of enriching our understanding of specialization in nursing home care.DesignQualitative analysis of semistructured interviews.Setting and ParticipantsVirtual interviews conducted January 18-29, 2021. Participants included 35 physicians across the United States, who currently or previously served as medical directors or attending physicians in nursing homes.MethodsInterviews were conducted virtually on Zoom and professionally transcribed. Outcomes were themes resulting from thematic analysis.ResultsParticipants had a mean 19.5 (SD = 11.3) years of experience working in nursing homes; 17 (48.6%) were female; the most common medical specializations were geriatrics (18; 51.4%), family medicine (8; 22.9%), internal medicine (7; 20.0%), physiatry (1; 2.9%), and pulmonology (1; 2.9%). Ten (28.6%) participants were SNFists. We identified 6 themes emphasized by participants: (1) An unclear definition and loose qualifications for SNFists may affect the quality of care; (2) Specific competencies are needed to be a “good SNFist”; (3) SNFists are distinguished by their unique practice approach and often provide services that are unbillable or underreimbursed; (4) SNFists achieve better outcomes, but opinions varied on performance measures; (5) SNFists may contribute to discontinuity of care; (6) SNFists remained in nursing homes during the COVID-19 pandemic.Conclusions and ImplicationsThere is a strong consensus among physicians with expertise in nursing home care that SNFists provide higher quality care for residents than other physicians. However, a uniform definition of a SNFist based on competencies in addition to standardized performance measures are needed. Unbillable and underreimbursed services create disincentives to physicians becoming SNFists. Policy makers may consider modifying Medicare reimbursements to incentivize more physicians to specialize in nursing home care.     

Exploring perceptions of occupational competence among participants in Individual Placement and Support (IPS)

Abstract

Objective: The purpose of this study was to explore perceptions of occupational competence and occupational value among a group of clients engaged in Individual Placement and Support (IPS). Methods: The Occupational Self-Assessment (OSA), based on the Model of Human Occupation, was used with 65 men and women with mental illness, and 45 of these completed the study. Results: Rasch analyses showed that the participants perceived “Managing my finances”, “Managing my basic needs”, and “Doing activities I like” as the most valued occupations. Most competence was perceived in “Taking care of myself”. Among the occupations where the participants perceived least competence, “Getting done what I need to do” and “Accomplishing what I set out to do” were the occupations that most stand out. Significant differences were also found between perceived competence and value in most of the occupations. Conclusions: Beyond those occupations valued as most important among the participants, it is essential also to pay attention to those in which they perceived least competence, as they are important for being able to achieve a desired occupation. Support related to perceptions of occupational competence can contribute to enabling clients in IPS to master a desired working life.     

Reaching for equitable care: High levels of disability-related knowledge and cultural competence only get us so far

BackgroundAchieving equitable medical care for people with disabilities is a complex challenge with emphasis often placed on the need for improved physician knowledge and cultural competence. Physical medicine and rehabilitation (PM&R) is a specialty dedicated to maximizing patient function, where a focus on working with and learning from patients with complex disabilities informs physician training and patient care.ObjectiveThe purpose of this study was to assess barriers to equitable care in PM&R clinics through a structural checklist and semi-structured interviews with clinic staff and physicians.MethodsWe used qualitative analysis with a grounded theory approach to develop a unified explanation of how existing clinic processes and provider attitudes affect equitable access to medical care.ResultsWe found physicians comfortable with and respectful of patient differences who described leveraging unpaid time and creativity to navigate structural, resource, and awareness barriers. Staff and physicians described current barriers as negatively affecting quality of care, clinic efficiency, and, in some cases, patient and staff safety.ConclusionOur results suggest that high levels of physician disability-related knowledge and cultural competence may be insufficient to the challenge of achieving equitable care.     

Trusted Colleagues or Incompetent Hacks? Development of the Attitudes About Abortion-Providing Physicians Scale

BackgroundMany physicians who provide abortion care report feeling marginalized within medicine. Because abortion care can require consultation with many types of physicians, physician opinions of providers may have implications for quality of care. However, no measure of physicians’ attitudes about abortion-providing colleagues currently exists.MethodsWe developed a 24-item pool to measure perceptions of the motivations, competence, and standing within the medical profession of physicians who provide abortion care. We administered the survey to a sample of 1,640 faculty physicians at a Midwestern teaching hospital. We used Stata SE/14.0 for all analyses.ResultsOur response rate was 34% (n = 560), comparable with other studies of physicians. Exploratory factor analysis resulted in a three-factor solution: opinion, motivations, and competence. The scale demonstrated good internal consistency. Attitudes were largely favorable: 84% of participants agreed that abortion providers provide necessary care for women and 81% felt that abortion providers contribute positively to society. Compared with those who felt abortion should be illegal in all circumstances, attitudes were more favorable among those who felt that abortion should be legal. We observed an inverse relationship between religious attendance and attitudes. Participants with children held more favorable attitudes compared with those without children.ConclusionsThe Attitudes About Abortion-Providing Physicians Scale captures physicians' perceptions of their abortion-providing colleagues along three important dimensions: opinion, motivations, and competence. This sample of physicians held generally favorable views of their colleagues who provide abortion care.     

Discursos profesionales sobre la violencia del compañero íntimo: implicación en la atención de las mujeres inmigrantes en España

Objective1) to examine the discourses of professionals involved in the care of female victims of intimate partner violence (IPV), with emphasis on how they describe the immigrant women, the perpetrators and their own responsibility of care; and 2) to compare these discourses with the other professions involved in caring for these women (social services, associations and police and justice).MethodsQualitative study based on semi-structured interviews with 43 professionals from social services, associations and the police and judicial systems. A discourse analysis was carried out to identify interpretive repertoires about IPV, immigrant women and their aggressors, their culture and professional practices.ResultsFour interpretive repertoires emerged from professional discourses: “Cultural prototypes of women affected by IPV”, “Perpetrators are similar regardless of their culture of origin”, “Are victims credible and the perpetrators responsible?” and “Lack of cultural sensitivity of professionals in helping immigrant women in abusive situations”. These repertoires correspond to preconceptions that professionals construct about affected women and their perpetrators, the credibility and responsibility they attribute to them and the interpretation of their professional roles.ConclusionsThe employment of IPV-trained cultural mediators in the services responsible for caring for the female victims, together with cultural training for the professionals, will facilitate the provision of culturally sensitive care to immigrant female victims of intimate partner violence.     

Accommodating patients with obesity and mobility difficulties: Observations from physicians

BackgroundGiven the growing population of U.S. adults with obesity and mobility disability, physicians will need to accommodate these patients.ObjectiveTo explore attitudes and practices of US physicians related to caring for patients with obesity and mobility disability.MethodsThree open-ended, semi-structured, web-based focus group interviews with practicing physicians in selected specialties, which reached data saturation. Interviews were video recorded and transcribed for qualitative, conventional content analysis. Measurements included commonly expressed themes around caring for patients with obesity.ResultsPhysicians recognized obesity as a disability that poses challenges to high quality, safe, and efficient patient care. Observations coalesced around four themes: (1) difficulty routinely tracking weight; (2) reluctance to transfer obese patients to exam tables; (3) barriers to diagnostic testing; and (4) weight stigma. Physicians described difficulties accurately assessing weight, performing complete physical examinations, arranging diagnostic imaging, and providing prenatal care for obese patients. Lack of accessible medical diagnostic equipment impeded care for patients with obesity. Other participants did not contest comments of individual participants’ that suggested weight stigma.ConclusionsOur findings suggest that important gaps may remain in providing equitable access to care for patients with obesity, requiring additional training and accessible medical diagnostic equipment to safely accommodate these patients.     

Priorities of Health Care Outcomes for the Elderly

ObjectivesPhysicians are uncertain about what medical services should be provided to older and/or disabled patients. Better understanding of health outcome prioritization among health care providers and recipients may help the process of decision- and policy-making. For this purpose, surveys were conducted on priorities of health care outcomes for the elderly.DesignSurvey research.SettingFour groups of health care providers and four groups of health care recipients.ParticipantsA total of 2512 health care providers and 4277 recipients.MeasurementsQuestionnaires were sent to more than 8000 health care providers and more than 9000 health care recipients: geriatricians, physicians who commonly see older patients or work in long term care facilities, staff members and participants in adult day care, patients in outpatient geriatric clinics, family members of patients with dementia, and community-dwelling older adults. The questionnaire asked the subjects to rank 12 measures of health care outcomes.ResultsThe mean response rate was 49%. All health care provider groups considered “improvement of quality of life” the most important. In contrast, in health care recipient groups, “effective treatment of illness,” “improvement of physical function,” and “reduction of carer burden” were given high priority, whereas “improvement of quality of life” was perceived as less important. All the groups, including health care providers and recipients, ranked “reduction of mortality” the least important, followed by “avoiding institutional care.” Stratification analysis showed that the results did not differ by sex, nursing care level, or the existence of relatives who required nursing care, whereas age slightly influenced the order of high-ranked measures.ConclusionPriorities of health care services and their differences between providers and recipients should be taken into account in the health care of older patients and the design of health care policies and research.     

E-learning for education in primary healthcare—turning the hype into reality: A Delphi study

Objective: E-learning has the potential to provide effective education for general practice, but there are significant difficulties that must be overcome. Design: We initiated a two-round Delphi study, aiming to identify expectations and barriers to e-learning in primary healthcare education. Methods: We distributed questionnaires to 60 primary care experts who are also experts in the field of e-learning. Their responses were independently analysed by two of the authors (J.G., H.C.V.) and were clustered to form 32 themes. These were fed back to the participants in a second postal questionnaire with the objective of reaching agreement or disagreement, with a cut-off of 80%. Results: The response rate was 67% (n=40) in the first and 60% (n=36) in the second round. The extent of agreement reached ranged from 8% (“e-learning is displacing practical teaching and learning”) to 97% (“e-learning needs convincing didactical concepts”). Agreement was high with the themes “e-learning gets a new focus by mixed learning concepts” and “users will have a higher level of media competence 5 years from now” (94% each). There was a positive attitude to e-learning, but there was concern about the lack of orientation towards users’ needs and the poor development of innovative didactical concepts. In implementing e-learning in primary care, education should be independent of financial influence from the healthcare industry in order to eliminate conflicts of interest.

Conclusion: The experts’ responses show that e-learning in primary healthcare education can contribute substantially to undergraduate, graduate, and continuing medical education, and should therefore be evaluated in systematic studies.     

A community-based evaluation of disability resources and inclusion practices in rural Botswana

BackgroundCommunity-based approaches to enhance the inclusion of persons with disabilities have proven effective; however, not much is known about cultural and contextual factors that influence the capacity of policy implementation and inclusion practices in rural Botswana.ObjectiveThe study evaluated local disability education and health resources in rural Botswana to develop a deeper understanding of cultural and contextual factors impacting inclusion practices.MethodResearchers used socio-demographic and qualitative research methods to conduct a comprehensive community-based needs assessment. Sampling techniques included maximum variation and snowball sampling. Thirty-two individuals participated in the study. Data were collected between June and August of 2019 through participant observation, in-depth interviews, and focus group discussions. An inductive thematic analysis was conducted by examining participants’ attitudes, perceptions, and experiences of community members with disabilities.ResultsFour primary themes emerged identifying factors that affect people living with disabilities in the rural community: (1) culture of vulnerability, (2) determinants of disability, (3) educational resources for persons with disabilities, and (4) effective systems integration. Findings suggested that while policies associated with disability at the government level are in place, disparities among rural communities’ hindered local responses to managing the needs of persons with disabilities.ConclusionsSocial, environmental, and physical barriers prevent the full implementation of policies that advocate for the rights of persons with disabilities in Botswana's rural settings. Increasing awareness of cultural and contextual factors may help community stakeholders facilitate inclusive practices in Botswana.     

Cultural competence in healthcare in the community: A concept analysis

This study aims to conduct a concept analysis on cultural competence in community healthcare. Clarification of the concept of cultural competence is needed to enable clarity in the definition and operation, research and theory development to assist healthcare providers to better understand this evolving concept. Rodgers’ evolutionary concept analysis method was used to clarify the concept's context, surrogate terms, antecedents, attributes and consequences and to determine implications for further research. Articles from 2004 to 2015 were sought from Medline, PubMed, CINAHL and Scopus using the terms “cultural competency” AND “health,” “cultural competence” OR “cultural safety” OR “cultural knowledge” OR “cultural awareness” OR cultural sensitivity OR “cultural skill” AND “Health.” Articles with antecedents, attributes and consequences of cultural competence in community health were included. The 26 articles selected included nursing (n = 8), health (n = 8), psychology (n = 2), social work (n = 1), mental health (n = 3), medicine (n = 3) and occupational therapy (n = 1). Findings identify cultural openness, awareness, desire, knowledge and sensitivity and encounter as antecedents of cultural competence. Defining attributes are respecting and tailoring care aligned with clients’ values, needs, practices and expectations, providing equitable and ethical care, and understanding. Consequences of cultural competence are satisfaction with care, the perception of quality healthcare, better adherence to treatments, effective interaction and improved health outcomes. An interesting finding is that the antecedents and attributes of cultural competence appear to represent a superficial level of understanding, sometimes only manifested through the need for social desirability. What is reported as critical in sustaining competence is the carers’ capacity for a higher level of moral reasoning attainable through formal education in cultural and ethics knowledge. Our conceptual analysis incorporates moral reasoning in the definition of cultural competence. Further research to underpin moral reasoning with antecedents, attributes and consequences could enhance its clarity and promote a sustainable enactment of cultural competence.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

Living with rheumatoid arthritis and experiencing everyday life with TNF-α blockers

Abstract

The aim of this study was to describe how persons with RA from an area in western Sweden experience everyday life with TNF-α blockers. A purposive sampling of 11 women and four men, with an age ranging from 25 to 70 years, was conducted. A phenomenological approach was used in the study. The data were collected by unstructured in-depth interviews. The data analysis resulted in six code groups, of which four have appurtenant sub-groups. The six code groups are: “A noticeable change dominates the picture”; “Change in bodily and mental symptoms enables activity”; “Enabling care for oneself and others”; “Enabling improved or continued productivity”; “More rewarding leisure time”; and “Drawbacks of the medication”. The findings show that most of the informants had experienced dramatic changes in their daily lives since the medication reduced their symptoms, resulting in an increased level of activity.     

Patient representatives: Crucial members of health‐care working groups facing an uncertain role and conflicting expectations. A qualitative study

BackgroundPatient representatives (PRs) have been involved for decades in health‐care development, and their participation is increasingly sought in health‐care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse.ObjectiveTo explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement.DesignQualitative design using semi‐structured interviews analysed by content analysis.Setting and participantsInterviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden.ResultsMost participants considered the PR role important but mentioned several problems. PRs’ contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present.ConclusionThis study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care.Patient or public contributionPRs were information givers in data collection.     

Factors associated with professional satisfaction in primary care: Results from EUprimecare project

Background: Given the importance of primary care to healthcare systems and population health, it seems crucial to identify factors that contribute to the quality of primary care. Professional satisfaction has been linked with quality of primary care. Physician dissatisfaction is considered a risk factor for burnout and leaving medicine.

Objectives: This study explored factors associated with professional satisfaction in seven European countries.

Methods: A survey was conducted among primary care physicians. Estonia, Finland, Germany and Hungary used a web-based survey, Italy and Lithuania a telephone survey, and Spain face to face interviews. Sociodemographic information (age, sex), professional experience and qualifications (years since graduation, years of experience in general practice), organizational variables related to primary care systems and satisfaction were included in the final version of the questionnaire. A logistic regression analysis was performed to assess the factors associated with satisfaction among physicians.

Results: A total of 1331 primary care physicians working in primary care services responded to the survey. More than half of the participants were satisfied with their work in primary care services (68.6%). We found significant associations between satisfaction and years of experience (OR?=?1.01), integrated network of primary care centres (OR?=?2.8), patients having direct access to specialists (OR?=?1.3) and professionals having access to data on patient satisfaction (OR?=?1.3). Public practice, rather than private practice, was associated with lower primary care professional satisfaction (OR?=?0.8).

Conclusion: Elements related to the structure of primary care are associated with professional satisfaction. At the individual level, years of experience seems to be associated with higher professional satisfaction.     

Description of YESHealth: A consumer-directed intervention in a randomized trial of methods to improve quality of care for persons with disability

Background

Persons leading their own evaluations of care quality offers the promise of generating maximally meaningful information to ensure person-centered care.