Knowledge sharing to support long‐term condition self‐management—Patient and health‐care professional perspectives

BackgroundIncreased self‐management is a suggested solution to the burden on health‐care services of long‐term conditions (LTCs). This requires effective sharing of knowledge between health‐care professionals and patients, and is an underexplored area.ObjectiveTo understand how patients and health‐care professionals (HCPs) share and utilize knowledge in the social context of health‐care interactions within long‐term condition management.MethodsThematic analysis of 93 hours of observations of health‐care interactions and 33 semi‐structured interviews involving patients, carers and HCPs.Results3 themes were identified: normative social roles, differing professional roles and the value of knowledge. Knowledge sharing was a complex process heavily influenced by social and cultural norms within the health‐care context. Not all knowledge was easily shared within routine health‐care interactions.DiscussionThe social context in which health‐care is practised influences what knowledge is shared and how this is achieved. It favours sharing of clinical knowledge from HCPs to patients and disadvantages patients in their ability to share their unique knowledge based on lived experience of illness. The opportunities for patients to be supported in their knowledge, skills and confidence within routine health‐care interactions are limited.ConclusionBoth patients and HCPs need support to recognize the characteristics of the social context of health care and their understandings of their roles within this in order for them to move beyond accepted behaviours to develop more effective partnership working.Patient or Public ContributionPatients were involved in initial design of the study, particularly ethics of ethnographic observation.     

Beneficial self‐management support and user involvement in Healthy Life Centres—A qualitative interview study in persons afflicted by overweight or obesity

BackgroundRelapse is high in lifestyle interventions involving behavioural change and weight loss maintenance. The purpose of lifestyle self‐management interventions offered at Healthy Life Centres (HLCs) is to empower the participants, leading to self‐management and improved health. Exploring beneficial self‐management support and user involvement in HLCs is critical for quality, improving effectiveness and guiding approaches to lifestyle change support in overweight and obesity.ObjectiveThe aim of this study was to explore how persons afflicted by overweight or obesity attending lifestyle interventions in Norwegian HLCs experience beneficial self‐management support and user involvement.MethodSemi‐structured in‐depth interviews were conducted with 13 service users (5 men and 8 women). Data were analysed using qualitative content analysis.ResultsOne main theme was identified: regaining self‐esteem and dignity through active involvement and long‐term self‐worth support in partnership with others. This main theme comprised four themes: (a) self‐efficacy through active involvement and better perceived health, (b) valued through health‐care professionals (HPs) acknowledgement, equality and individualized support, (c) increased motivation and self‐belief through fellowship and peer support; and (d) maintenance of lifestyle change through accessibility and long‐term support.ConclusionService users’ active involvement, acknowledgement and long‐term self‐worth support from HPs and peers seem to support self‐management and user involvement and may be some of the successful ingredients to lifestyle change. However, prolonged follow‐up support is needed. A collectivistic and long‐term perspective can integrate the importance of significant others and shared responsibility.     

Health‐care professionals’ assessment of a person‐centred intervention to empower self‐management and health across chronic illness: Qualitative findings from a process evaluation study

BackgroundPerson‐centred care (PCC) empowers patients to manage their chronic illness and promote their health in accordance with their own beliefs, values and preferences. Drawing on health‐care professional''s (HCP’s) experiences implementing an empowerment‐focused, person‐centred intervention called the Bodyknowledging Program (BKP), we undertook a process evaluation that aimed to assess the impact on patient health and well‐being.MethodsWe used individual in‐depth interviews and semi‐structured focus groups comprising n = 8 interprofessional HCP who facilitated intervention sessions with n = 58 patients situated in Norwegian specialist care sites. Content analysis was used to analyse the data and summarize major themes.ResultsHealth‐care professional interviews revealed four main ways in which the intervention operated in support of health‐related patient outcomes: (i) addressing the whole person; (ii) hope and affirmation; (iii) expanding recovery; and (iv) social support and revitalized relationships. The intervention provided new tools for patients to understand the social, emotional and physical impact of their illness. Health‐care professional reported new insights to facilitate patient engagement and to promote patients’ health.ConclusionsThe Bodyknowledging Program facilitated patient engagement through the promotion of patient‐centred care while developing the patients’ ability to exploit their own resources for effectively managing their health within illness. The process evaluation supported the underlying theoretical basis of the intervention and was suggestive of its potential transferability elsewhere.     

Interactional practices in person‐centred care: Conversation analysis of nurse‐patient disagreement during self‐management support

BackgroundPerson‐centred care implies a change in interaction between care professionals and patients where patients are not passive recipients but co‐producers of care. The interactional practices of person‐centred care remain largely unexplored.ObjectiveThis study focuses on the analysis of disagreements, which are described as an important part in the co‐production of knowledge in interaction.DesignA qualitative exploratory study using conversation analysis.Setting and participantsData were collected from a nurse‐led person‐centred intervention in a hospital outpatient setting. Interactions between adult patients with irritable bowel syndrome (n = 17) and a registered nurse were audio‐recorded. COREQ guidelines were applied.ResultsDisagreements were found after demonstration of the nurse''s or patients’ respective professional or personal knowledge. Disagreements were also evident when deciding on strategies for self‐management. Although negotiations between opposing views of the nurse and patient were seen as important, the patient generally claimed final authority both in knowing how IBS is perceived and in the right to choose self‐management strategies. The nurse generally oriented towards patient authority, but instances of demonstration of nurse authority despite patient resistance were also found.Discussion and conclusionsThis study provides information on how co‐production of knowledge and decisions occur in the context of a person‐centred care intervention. Negotiations between nurse and patient views require a flexible approach to communication, adapting interaction to each context while bearing in mind the patients having the final authority. To facilitate co‐production, the patient''s role and responsibilities in interaction should be explicitly stated.     

Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self‐management of their chronic kidney disease

IntroductionThe responsibility for managing a long‐term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP''s role during this process.MethodsSampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13–17 years with CKD, 13 parents and 20 HCPs.FindingsA grounded theory, shifting responsibilities, was developed that provides new insights into how young people''s, parents'' and HCPs'' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people''s self‐management or young person–parent shared management.ConclusionFamilies would benefit from HCP support over a longer timeframe that integrates assuming self‐management responsibility with gaining independence in other areas of their lives and focuses on young people ‘doing’ self‐management.Patient or Public ContributionPatient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study''s design and delivery.     

Perspectives of substitute decision‐makers and staff about person‐centred physical activity in long‐term care

IntroductionThis paper aims to explore the care processes that best exemplify person‐centred care during physical activity (PA) for long‐term care (LTC) residents with dementia from the perspectives of substitute decision‐makers (SDMs) and LTC home staff. Little is known about how person‐centred care is reflected during PA for residents with dementia, or the barriers and benefits to enacting person‐centred care during PA.MethodsSemistructured interviews were used to collect SDMs and LTC home staffs'' perspectives on the importance of person‐centred care during PA from two LTC homes in Canada. The McCormack and McCance person‐centredness framework was used to guide thematic content analysis of responses.ResultsSDM (n = 26) and staff (n = 21) identified actions categorized under the sympathetic presence or engagement care processes from the person‐centredness framework as most reflecting person‐centred care. Benefits of person‐centred care during PA were categorized into three themes: functional and physical, behavioural and communication and psychosocial improvements. Barriers to person‐centred care during PA identified were lack of time, opportunities for meaningful activity in LTC setting and staff experiences with resident aggression.SignificanceUnderstanding the care processes that are most recognized as person‐centred care and valued by SDMs and LTC home staff has implications for education and training. Insights into SDMs'' care expectations regarding person‐centred care can inform staff about which actions should be prioritized to meet care expectations and can foster relationships to the benefit of residents with dementia.Patient and Public ContributionStudy participants were not involved in the development of research questions, research design or outcome measures of this study.     

Perceptions,needs and preferences of chronic disease self‐management support among men experiencing homelessness in Montreal

ObjectiveThis study explored the perceptions, needs and preferences for chronic disease self‐ management (SM) and SM support among men experiencing homelessness.DesignA qualitative interpretive approach was used. Eighteen semi‐structured interviews were conducted with 18 homeless men with a chronic disease at an emergency overnight shelter of Welcome Hall Mission (WHM) in Montreal, Quebec. Interviews were audio‐recorded, transcribed verbatim and thematically analysed.ResultsThe majority of participants perceived SM as important, described confidence to perform medical SM behaviours, and creatively adapted their SM behaviours to homelessness. Emotional SM was described as most challenging, as it was intertwined with the experience of homelessness. Three vulnerable groups were identified: (a) those with no social networks, (b) severe physical symptoms and/or (c) co‐morbid mental illness. The preferred mode of delivery for SM support was through consistent contacts with health‐care providers (HCPs) and peer‐support initiatives.Discussion and ConclusionsDespite competing demands to fulfill basic needs, participants valued chronic disease SM and SM support. However, SM support must address complex challenges relating to homelessness including emotional SM, multiple vulnerabilities and barriers to forming relationships with HCPs.     

Health insurance coverage and self‐employment

BackgroundSelf‐employed workers are 10% of the US labor force, with growth projected over the next decade. Whether existing policy mechanisms are sufficient to ensure health insurance coverage for self‐employed workers, who do not have access to employer‐sponsored coverage, is unclear.ObjectiveTo determine whether self‐employment is associated with lack of health insurance coverage.Data SourcesSecondary analysis of Medical Expenditure Panel Survey (MEPS) data collected 2014‐2017.Study DesignParticipants were working age (18‐64 years), employed, civilian noninstitutionalized US adults with two years of Medical Expenditure Panel Survey (MEPS) participation in 2014‐2017. We compared those who were employees vs those who were self‐employed. Key outcomes were self‐report of health insurance coverage, and of delaying needed medical care.Data Extraction MethodsLongitudinal design among individuals who were employees during study year 1, comparing health insurance coverage among those who did vs did not transition to self‐employment in year 2.Principal Findings16 335 individuals, representing 121 473 345 working‐age adults, met inclusion criteria; of these, 147, representing 1 097 582 individuals, transitioned to self‐employment. In unadjusted analyses, 25.7% of those who became self‐employed were uninsured in year 2, vs 8.1% of those who remained employees (P < .0001). In adjusted models, self‐employment was associated with greater risk of being uninsured (26.1% vs 8.0%, risk difference 18.0%, 95% confidence interval [CI] 9.2% to 26.9%, P = .0001). A time‐by‐employment type product term suggests that 10.0 percentage points (95%CI 0.3 to 19.7 percentage points, P = .04) of the risk difference may be attributable to the change to self‐employment. Self‐employment was also associated with delaying needed medical care (12.0% vs 3.1%, risk difference: 8.9%, 95% CI 3.1% to 14.6%, P = .003).ConclusionsOne in four self‐employed workers lack health insurance coverage. Given the rise in self‐employment, it is imperative to identify ways to improve health care insurance access for self‐employed working‐age US adults.     

COVID‐19: The Time for Collaboration Between Long‐Term Services and Supports,Health Care Systems,and Public Health Is Now

Policy Points

• To address systemic problems amplified by COVID‐19, we need to restructure US long‐term services and supports (LTSS) as they relate to both the health care systems and public health systems. We present both near‐term and long‐term policy solutions.
• Seven near‐term policy recommendations include requiring the uniform public reporting of COVID‐19 cases in all LTSS settings; identifying and supporting unpaid caregivers; bolstering protections for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing barriers to telehealth in LTSS; and providing incentives to care for vulnerable populations.
• Long‐term reform should focus on comprehensive workforce development, comprehensive LTSS financing reform, and the creation of an age‐friendly public health system.

ContextThe heavy toll of COVID‐19 brings the failings of the long‐term services and supports (LTSS) system in the United States into sharp focus. Although these are not new problems, the pandemic has exacerbated and amplified their impact to a point that they are impossible to ignore. The primary blame for the high rates of COVID‐19 infections and deaths has been assigned to formal LTSS care settings, specifically nursing homes. Yet other systemic problems have been unearthed during this pandemic: the failure to coordinate the US public health system at the federal level and the effects of long‐term disinvestment and neglect of state‐ and local‐level public health programs. Together these failures have contributed to an inability to coordinate with the LTSS system and to act early to protect residents and staff in the LTSS care settings that are hotspots for infection, spread, and serious negative health outcomes.MethodsWe analyze several impacts of the COVID‐19 pandemic on the US LTSS system and policy arrangements. The economic toll on state budgets has been multifaceted, and the pandemic has had a direct impact on Medicaid, the primary funder of LTSS, which in turn has further exacerbated the states’ fiscal problems. Both the inequalities across race, ethnicity, and socioeconomic status as well as the increased burden on unpaid caregivers are clear. So too is the need to better integrate LTSS with the health, social care, and public health systems.FindingsWe propose seven near‐term actions that US policymakers could take: implementing a uniform public reporting of COVID‐19 cases in LTSS settings; identifying and supporting unpaid caregivers; bolstering support for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing the barriers to telehealth in LTSS; and providing incentives to care for our most vulnerable populations. Our analysis also demonstrates that our nation requires comprehensive reform to build the LTSS system we need through comprehensive workforce development, universal coverage through comprehensive financing reform, and the creation of an age‐friendly public health system.ConclusionsCOVID‐19 has exposed the many deficits of the US LTSS system and made clear the interdependence of LTSS with public health. Policymakers have an opportunity to address these failings through a substantive reform of the LTSS system and increased collaboration with public health agencies and leaders. The opportunity for reform is now.     

Aged care residents’ prioritization of care: A mixed‐methods study

BackgroundEliciting residents’ priorities for their care is fundamental to delivering person‐centred care in residential aged care facilities (RACFs). Prioritization involves ordering different aspects of care in relation to one another by level of importance. By understanding residents’ priorities, care can be tailored to residents’ needs while considering practical limitations of RACFs.ObjectivesTo investigate aged care residents’ prioritization of care.DesignA mixed‐methods study comprising Q methodology and qualitative methods.Setting and participantsThirty‐eight residents living in one of five Australian RACFs.MethodParticipants completed a card–sorting activity using Q methodology in which they ordered 34 aspects of care on a pre‐defined grid by level of importance. Data were analysed using inverted factor analysis to identify factors representing shared viewpoints. Participants also completed a think‐aloud task, demographic questionnaire, post‐sorting interview and semi‐structured interview. Inductive content analysis of qualitative data was conducted to interpret shared viewpoints and to identify influences on prioritization decision making.ResultsFour viewpoints on care prioritization were identified through Q methodology: Maintaining a sense of spirituality and self in residential care; information sharing and family involvement; self‐reliance; and timely access to staff member support. Across the participant sample, residents prioritized being treated with respect, the management of medical conditions, and their independence. Inductive content analysis revealed four influences on prioritization decisions: level of dependency; dynamic needs; indifference; and availability of staff.ConclusionsRecommendations for providing care that align with residents’ priorities include establishing open communication channels with residents, supporting residents’ independence and enforcing safer staffing ratios.     

Talking the same language on patient empowerment: Development and content validation of a taxonomy of self‐management interventions for chronic conditions

ContextThe literature on self‐management interventions (SMIs) is growing exponentially, but it is characterized by heterogeneous reporting that limits comparability across studies and interventions. Building an SMI taxonomy is the first step towards creating a common language for stakeholders to drive research in this area and promote patient self‐management and empowerment.ObjectiveTo develop and validate the content of a comprehensive taxonomy of SMIs for long‐term conditions that will help identify key characteristics and facilitate design, reporting and comparisons of SMIs.MethodsWe employed a mixed‐methods approach incorporating a literature review, an iterative consultation process and mapping of key domains, concepts and elements to develop an initial SMI taxonomy that was subsequently reviewed in a two‐round online Delphi survey with a purposive sample of international experts.ResultsThe final SMI taxonomy has 132 components classified into four domains: intervention characteristics, expected patient/caregiver self‐management behaviours, outcomes for measuring SMIs and target population characteristics. The two‐round Delphi exercise involving 27 international experts demonstrated overall high agreement with the proposed items, with a mean score (on a scale of 1‐9) per component of 8.0 (range 6.1‐8.8) in round 1 and 8.1 (range 7.0‐8.9) in round 2.ConclusionsThe SMI taxonomy contributes to building a common framework for the patient self‐management field and can help implement and improve patient empowerment and facilitate comparative effectiveness research of SMIs.Patient or public contribution.Patients’ representatives contributed as experts in the Delphi process and as partners of the consortium.     

Inequities in access to VA’S aid and attendance enhanced pension benefit to help Veterans pay for long‐term care

ObjectiveTo examine characteristics that are associated with receipt of Aid and Attendance (A&A), an enhanced pension benefit for Veterans who qualify on the basis of needing daily assistance, among Veterans who receive pensions.Data sourcesSecondary data analysis of 2016‐2017 national VA administrative data linked with Medicare claims.Study designObservational study examining sociodemographic, medical, and healthcare utilization characteristics associated with receipt of A&A among Veterans receiving pension.Principal findingsIn 2017, 9.7% of Veterans with pension newly received the A&A benefit. The probability of receiving A&A among black and Hispanic pensioners was 4.6 percentage points lower than for white pensioners (95%CI = −0.051, −0.042). Married Veterans receiving pension had a 4.4‐percentage point higher probability of receiving A&A (95%CI = 0.039, 0.048). Most indicators of need for assistance (eg, home health utilization, dementia, stroke) were associated with significantly higher probabilities of receiving A&A, with notable exceptions: pensioners with a diagnosis of Post‐Traumatic Stress Disorder (marginal effect = −0.029 95%CI = −0.037, −0.021) or enrolled in Medicaid (marginal effect = −0.053, 95%CI = −0.057, −0.050) had lower probabilities of receiving A&A. Unadjusted and adjusted rates of receiving A&A among Veterans receiving pension varied by VA medical center.ConclusionsThis study identified potential inequities in receipt of the A&A enhanced pension among a sample of Veterans receiving pension. Increased Veteran outreach, provider education, and VA office coordination can potentially reduce inequities in access to this benefit.     

Living with Chronic Illness Scale: International validation through the classic test theory and Rasch analysis among Spanish‐speaking populations with long‐term conditions

BackgroundThe Living with Chronic Illness (LW‐CI) Scale is a comprehensive patient‐reported outcome measure that evaluates the complex process of living with long‐term conditions.ObjectiveThis study aimed to analyse the psychometric properties of the LW‐CI scale according to the classic test theory and the Rasch model among individuals living with different long‐term conditions.DesignThis was an observational, international and cross‐sectional study.MethodsA total of 2753 people from six Spanish‐speaking countries living with type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure, Parkinson''s disease, hypertension and osteoarthritis were included. The acceptability, internal consistency and validity of the LW‐CI scale were analysed using the classical test theory, and fit to the model, unidimensionality, person separation index, item local independency and differential item functioning were analysed using the Rasch model.ResultsCronbach''s α for the LW‐CI scale was .91, and correlation values for all domains of the LW‐CI scale ranged from .62 to .68, except for Domain 1, which showed correlation coefficients less than .30. The LW‐CI domains showed a good fit to the Rasch model, with unidimensionality, item local independency and moderate reliability providing scores in a true interval scale. Except for two items, the LW‐CI scale was free from bias by long‐term condition type.DiscussionAfter some adjustments, the LW‐CI scale is a reliable and valid measure showing a good fit to the Rasch model and is ready for use in research and clinical practice. Future implementation studies are suggested.Patient and Public ContributionPatient and public involvement was conducted before this validation study ‐ in the pilot study phase.     

Sociocultural influences on asthma self‐management in a multicultural society: A qualitative study amongst Malaysian adults

BackgroundSupported self‐management improves asthma outcomes, but implementation requires adaptation to the local context. Barriers reported in Western cultures may not resonate in other cultural contexts. We explored the views, experiences and beliefs that influenced self‐management among adults with asthma in multicultural Malaysia.MethodsAdults with asthma were purposively recruited from an urban primary healthcare clinic for in‐depth interviews. Audio‐recordings were transcribed verbatim and analysed thematically.ResultsWe interviewed 24 adults. Four themes emerged: (1) Participants believed in the ‘hot and cold’ concept of illness either as an inherent hot/cold body constitution or the ambient temperature. Hence, participants tried to ‘neutralize’ body constitution or to ‘warm up’ the cold temperature that was believed to trigger acute attacks. (2) Participants managed asthma based on past experiences and personal health beliefs as they lacked formal information about asthma and its treatment. (3) Poor communication and variable advice from healthcare practitioners on how to manage their asthma contributed to poor self‐management skills. (4) Embarrassment about using inhalers in public and advice from family and friends resulted in a focus on nonpharmacological approaches to asthma self‐management practice.ConclusionsAsthma self‐management practices were learnt experientially and were strongly influenced by sociocultural beliefs and advice from family and friends. Effective self‐management needs to be tailored to cultural norms, personalized to the individuals'' preferences and clinical needs, adapted to their level of health literacy and underpinned by patient–practitioner partnerships.Patient and Public ContributionsPatients contributed to data. Members of the public were involved in the discussion of the results.     

Experiences of self‐care during the COVID‐19 pandemic among individuals with rheumatoid arthritis: A qualitative study

ObjectivesThis study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA).MethodsGuided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used.ResultsTwenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic.ConclusionThe insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care.Patient or Public ContributionThis project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.     

Participation preferences of health service users in health care decision‐making regarding rehabilitative care in Germany—A cross‐sectional study

BackgroundInvolving patients and citizens in health care decision‐making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment.ObjectiveThis study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels.MethodsA questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models.ResultsThe response rate was 5.7% (n = 217). At all decision‐making levels, joint decision‐making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision‐making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p = .019).DiscussionParticipants wanted to be equally involved in decision‐making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill—factors associated with increased participation preferences in the literature.ConclusionContrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed.     

Reluctant educators and self‐advocates: Older trans adults’ experiences of health‐care services and practitioners in seeking gender‐affirming services

BackgroundTrans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers’ experiences of contemporary health‐care services when seeking to transition medically in later life.ObjectivesQualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life.DesignTrans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach.Setting and participantsThis paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life.ResultsFindings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life.Discussion and conclusionsMessages from this study speak to the importance of improving professionals’ knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity.     

Insights into how Malaysian adults with limited health literacy self‐manage and live with asthma: A Photovoice qualitative study

BackgroundAdjusting to life with a chronic condition is challenging, especially for people with limited health literacy, which is associated with low compliance with self‐management activities and poor clinical outcomes.ObjectiveWe explored how people with limited health literacy understand asthma and undertake self‐management practices.DesignWe adapted the arts‐based qualitative methodology Photovoice.Setting and ParticipantsWe sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in‐depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2‐week photo‐taking activity and subsequent photo‐interview. Interviews, conducted in participants'' preferred language, were audio‐recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen''s framework (Domains: access, understand, appraise, apply) to describe participants'' experience of living with asthma, what they understood about asthma and how they decided on self‐management practices.ResultsTwenty‐six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self‐management. Doctor–patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self‐management decisions were influenced by sociocultural norms/practices, stigmatizing experiences, and available social support.ConclusionLocally tailored multilevel interventions (interpersonal, health system, community and policy) will be needed to support people with limited health literacy to live optimally with their asthma in an ethnically diverse population.Patient/Public ContributionPatients were involved in the study design, recruitment, analysis and dissemination.