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In the United Kingdom, people with non-white ethnicities are more likely to report being in worse health conditions and have poorer experiences of healthcare services than white counterparts. The voices of those of Black ethnicities are often merged in literature among other non-white ethnicities. This literature review aims to analyse studies that investigate Black participant experiences of primary care in the UK. We conducted a systematic literature review searching Medline, Web of Science, EMBASE, SCOPUS, Social Policy and Practice, CINAHL plus, Psych INFO and Global Health with specific search terms for appropriate studies. No publish date limit was applied. 40 papers (39 articles and 1 thesis) were deemed eligible for inclusion in the review. A number of major themes emerged. Patient expectations of healthcare and the health seeking behaviour impacted their interactions with health systems in the UK. Both language and finances emerged as barriers through which some Black participants interacted with primary care services. (Mis)trust of clinicians and the health system was a common theme that often negatively impacted views of UK primary care services. The social context of the primary care service and instances of a cultural disconnect also impacted views of primary care services. Some papers detail patients recognising differential treatment based on ethnicity. The review included the voices of primary care professionals where descriptions of Black patients were overwhelmingly negative. Views and experiences of Black groups may be radically different to other ethnic minorities and thus, should be teased out of broader umbrella terms like Black and Asian Minority Ethnic (BAME) and Black Minority Ethnic (BME). To address ethnicity-based health inequalities, culturally sensitive interventions that engage with the impacted community including co-designed interventions should be considered while acknowledging the implications of being racialised as Black in the UK. [ABSTRACT FROM AUTHOR]

This paper explores the perception of "relatives" during the rehabilitation of young adults with severe acquired brain injury (SABI). This longitudinal qualitative study followed eight young adults with a SABI from hospital discharge to a year and a half after discharge. The design encompassed professional records, interviews, and surveys, including a name generator list completed by the young adults and focus group interviews with both their families and professionals. We apply a sociological theoretical framework concerning friendship, and we employ social network analysis (SNA) methodology to capture, visualise, and analyse the young adults' significant social relations. Social relations engaged as relatives during rehabilitation are to a large extent determined by the perceptions of professionals and the parents of the young adult. These perceptions contain a limited number of social relations, with priority given to biological and juridical ties. This might reflect the reduced social support available for the young adult, who initially had a much larger social network. The authors suggest a professional rethinking of who "relatives" are as well as considering these social ties as dynamic. Rehabilitation professionals must be aware of and pay attention to differing perceptions that exist as to who qualifies as significant social relations in order to reconsider the practical implementation of relative involvement. The perception of who relatives are during the rehabilitation process should be reconsidered and extended to include who the young adult perceive as significant social relations. Relatives are not a fixed entity and should be considered dynamically throughout the rehabilitation process. Social relations of the young adult must to a larger extent be considered during rehabilitation to prevent social isolation in the long run. [ABSTRACT FROM AUTHOR]

Research recruitment, eligibility, and who chooses to participate shape the resulting data and knowledge, which together inform interventions, treatment, and programming. Patterns of research participation are particularly salient at this moment given emerging biomedical prevention paradigms. This paper explores the perspectives of Black and Latino young men who have sex with men (BL-YMSM) regarding research recruitment and eligibility criteria, how their experiences influence willingness to enroll in a given study, and implications for the veracity and representativeness of resulting data. We examine inclusion and recruitment as a complex assemblage, which should not be reduced to its parts. From April to July 2018, we conducted in-depth interviews with 30 BL-YMSM, ages 18–29, in New York City. Interviews were recorded, transcribed, and analyzed using the constant comparative method. Black and Latino YMSM's responses unveiled tensions between researchers', recruiters', and participants' expectations, particularly regarding eligibility criteria (e.g. age, sex frequency), assumptions about 'risky behaviors,' and the 'target' community. Men preferred peer-to-peer recruitment, noting that most approaches miss key population segments. Findings highlight the need to critically examine the selected 'target' community, who sees themselves as participants, and implications for data comprehensiveness and veracity. Study eligibility criteria and recruitment approaches are methodological issues that shape knowledge production and the policies and programs deployed into communities. These findings can inform how future research studies frame recruitment and eligibility in order to better meet the needs of participants and ensure future research engagement. [ABSTRACT FROM AUTHOR]

Individualized funding of disability support services has implications for people's choices about when to share their home. This paper examines how people with disabilities made choices about who to live with and the factors influencing these choices. This paper discusses data from interviews with 30 people with mostly intellectual disabilities using individualized support services, 21 interviews with family members, four interviews with service managers, and a focus group with five support workers. The data come from a large evaluation of individualized housing support programs in New South Wales, Australia. Only some people had the opportunity to choose whether to share and with whom. Their choices were constrained by the range of housing options and their limited experience of them, even when they had support to make choices about shared housing or living alone. In some cases, the choices reflected a conceptualization of people with disabilities as different to other citizens in their rights and expectations about their social arrangements. The results have implications for information sharing, housing stock, and the need to challenge the positioning of people with disabilities relative to other people regarding choices about where and with whom to live. Many people preferred not to live alone, so as to improve their economic and social circumstances, and their choice and control. The choices about shared housing that many people and their supporters made were constrained by their limited experience of housing options or their familiarity with the range of choices made by other people with disabilities. Being able to draw on the material, social, and information resources of family made a big difference to their housing choices. It raises questions for policy implementation about whether individualized support may lock some people into shared housing arrangements by failing to include housing costs in the individual package. [ABSTRACT FROM AUTHOR]

Purpose: The "Joint Resources – Sedentary Behavior Study" (JR-SB) revealed significant behavioral and cardio-metabolic effects of reducing daily sedentary behavior replaced by light-intensity physical activity in patients with rheumatoid arthritis. This study explores the participant perception and experiences of the intervention and impact on the participants' health, family and physical activity behavior. Materials and Methods: A mixed-methods study design, including quantitative and qualitative data, was applied. Quantitative data were collected post-intervention using a questionnaire (n = 69) evaluating experiences of participation in the intervention. By maximum variation sampling, 18 participants were recruited to three focus group interviews with discussions of intervention elements. Data from the two sub-studies were collected and analyzed separately, although integrated at the interpretation and reporting level. Results: Based on four overarching themes, results indicated participant satisfaction with the individually tailored, behavioral approach and the focus on light-intensity physical activity rather than higher intensities. Study participation had an additional positive impact on the behaviors of family and social relations. Conversely, the family motivated the participants to achieve their physical activity goals. Conclusions: The study results support the use of individually tailored and behavioral approaches to reduce sedentary behavior, increase light-intensity physical activity and improve physical abilities in patients with rheumatoid arthritis. This paper presents positive participant perception and motivation for an individually tailored, behavioural intervention that aimed to reduce sedentary behaviour replaced by light-intensity physical activity in patients with rheumatoid arthritis. The results indicate that especially the focus on light-intensity physical activity, a consistent focus on the individual's everyday life and continuous support from health professionals motivated the participants to reduce their daily sedentary behaviour – also in the long term. Involvement of participants' family members seems to have influence on their own physical activity behavior as well as on the participants' motivation for changing physical activity behavior. Together with earlier evidence, the results underpin the use of behavioural strategies to support patients with rheumatoid arthritis in achieving their physical activity goals and in improving the abilities needed to manage their everyday lives. [ABSTRACT FROM AUTHOR]

This qualitative study is part of a project aiming to evaluate a community-based approach to the delivery of intermittent preventive treatment of malaria in pregnancy with sulfadoxine-pyrimethamine (IPTp-SP) through community health workers (CHWs) in four sub-Saharan African countries: the Democratic Republic of Congo (DRC), Madagascar, Mozambique and Nigeria. The study aimed to understand the factors that influence the anticipated acceptability of this intervention. A total of 216 in-depth interviews and 62 focus group discussions were carried out in the four country sites with pregnant women, women of reproductive age, community leaders, pregnant women's relatives, CHWs, formal and informal health providers. Grounded theory guided the study design and data collection, and content and thematic analysis was performed through a comparative lens. This paper focuses on one crosscutting theme: trust-building. Two mechanisms that underpin communities' trust in delivery of IPTp via CHWs were identified: 'perceived competence' and 'community and healthcare system integration'. Communities' perception of CHWs' competence shapes their trust in them, which suggests that CHWs' credentials should be made public and that specialised training in maternal health is required for them. Integration depends on the promotion of socially embedded practices and the involvement of formal healthcare systems in CHWs' work. [ABSTRACT FROM AUTHOR]

This article explores the ways in which patients and their families (hereafter referred as ‘users’) share and evaluate disease-specific evidence via online communities. The aim is to understand what this user engagement in healthcare and knowledge production reveals about society’s shifting perceptions of trust in the institutions of ‘evidence-based medicine’ (EBM) such as regulators, bioethicists and scientists and the implications for EBM. To do this, I use the case of experimental stem cell therapies (eSCTs). ESCTs are commonly labelled in academic literature as ‘unproven’, a label that frames their lack of conclusive clinical evidence as unsafe, inefficacious and thus unethical when clinically used. Despite this framing, users engage with other users to share and evaluate all available evidence for themselves, including on-going clinical trial and experiential evidence to build trust for and undertake eSCTs. Increasingly, this user engagement with evidence takes place in online communities that range from user-created and user-run Facebook pages to user-to-user discussion forums on healthcare provider sites or blogs with little if any provider-input in conversations. In this paper, I draw on a sample of these user conversations to show the complex and unpredictable ways in which what counts as evidence and how trust is built for it are shifting. In so doing, I reflect on the shifting relations between the institutions of EBM and society for greater control over evidence that lies at the heart of the evidentiary basis of public health policies. [ABSTRACT FROM AUTHOR]

Evidence suggests that physical activity (PA) programmes promoted via healthcare settings worldwide may not currently meet the needs of many patients and healthcare professionals (HCPs). This paper describes the outcomes of a qualitative enquiry into the perspectives of patients and professionals from multiple healthcare services regarding the role of PA. 19 patients and 22 HCPs were purposively recruited from physiotherapy, podiatry, chronic pain, diabetes and continence services at a community-based healthcare clinic in the United Kingdom. Participants' views were explored using semi-structured interviews and analysed using thematic analysis. Results identified five themes: differences between the social and medical rationales underpinning PA promotion; the impact of the patient-professional relationship on patient activation, self-management and PA; a risk culture surrounding PA; challenges to meet variation in patients' needs and preferences; and lack of formal role for PA as a core part of routine healthcare. The study highlights tensions between needs and aspirations, and the reality of delivering advice and support for PA. Challenges resonated with patients and HCPs across different care groups and were not condition-specific. This highlights a need for sharing good practice across healthcare services and system-level interventions to address organisational barriers to the promotion of PA. [ABSTRACT FROM AUTHOR]

Tenant experience surveys are a key tool for social housing landlords to gauge their success in providing high quality housing. This paper examines feedback from a tenant experience survey facilitated in a low-income housing seniors' housing community to: (1) examine their perceptions of their housing across key domains related to tenant satisfaction; and (2) identify opportunities they felt would improve their housing experience. A total of 1,114 households completed the survey. Results showed that tenants generally had high satisfaction with property management, safety and security, communication with staff, access to services, community support, and tenancy management. However, open-ended comments from tenants highlighted specific situations that negatively impacted their housing, including maintenance issues, safety concerns, and limited access to health and social programs. Findings point to several suggestions for social housing providers to enhance their services to foster inclusive, supportive, and safe housing environments for low-income older adults. [ABSTRACT FROM AUTHOR]

In this paper, we present findings from a qualitative study that gathered Nicaraguans’ perceptions of short-term foreign medical missions, towards deepening the understanding of what Nicaraguans value or find limited in the work of such foreign missions operating in their country. Fifty-two interviews were conducted with patients, relatives of patients, Nicaraguan physicians and nurses who partnered with or observed missions at work, ‘beneficiary’ community leaders, and individuals who were unable or unwilling to access mission-provided healthcare. Factors underlying participants’ positive and more critical accounts of foreign primary and surgical missions are described and analysed. Empirical investigation on how, whether or not, or on what bases short-term medical missions (STMs) have been perceived as beneficial, harmful, or otherwise by those on the receiving end of these efforts is limited. This study aims to contribute to the evidence base for reflecting on the ethical performance of trans-national STMs. [ABSTRACT FROM PUBLISHER]

Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent. [ABSTRACT FROM AUTHOR]

Internally displaced women are underserved by health schemes and policies, even as they may face greater risk of violence and unplanned pregnancies, among other burdens. There are an estimated 450,000 internally displaced persons in India, but they are not formally recognised as a group. Displacement has been a common feature in India's northeast region. This paper examines reproductive and maternal health (RMH) care-seeking among Bru displaced women in India. The study employed qualitative methodology: four focus group discussions (FGDs) were held with 49 displaced Bru women aged 18–45 between June and July 2018; three follow-up interviews with FGD participants and five in-depth interviews with community health workers (Accredited Social Health Activists – ASHAs) in camps for Bru displaced people in the Indian state of Tripura. All interviewees gave written or verbal informed consent; discussions were conducted in the local dialect, recorded, and transcribed. Data were indexed deductively from a dataset coded using grounded approaches. Most women were unaware of many of the RMH services provided by health facilities; very few accessed such care. ASHAs had helped increase institutional deliveries over the years. Women were aware of temporary contraceptive methods as well as medical abortion, but lacked awareness of the full range of contraceptive options. Challenges in accessing RMH services included distance of facilities from camps, and multiple costs (for transport, medicines, and informal payments to facility staff). The study highlighted a need for comprehensive intervention to improve RMH knowledge, attitudes, and practices among displaced women and to reduce access barriers. [ABSTRACT FROM AUTHOR]

Suicide is a leading cause of death among schizophrenia spectrum disorder populations. This open pilot study examined a modified cognitive-behavioral suicide prevention treatment for clients in community mental health. Providers (n = 5) were trained to deliver the treatment and clients (n = 5) received it in 10 individual therapy sessions. Clients experienced improvements in suicide ideation, depression, hopelessness, general symptoms of psychosis, entrapment, defeat, approaches to coping, psychological stress, impulsivity, and the number of treatment barriers from baseline to post-treatment. Qualitative findings reinforced quantitative results of client improvements and provided important suggestions to strengthen the intervention and its delivery in community mental health. [ABSTRACT FROM AUTHOR]

Anxiety is common after stroke and more prevalent in survivors with aphasia. Relaxation is an effective first-line therapy. The current study aimed to obtain the perspectives of stroke survivors with aphasia to inform the development of an accessible, technology-based, relaxation intervention. Qualitative co-design methods were used with twelve people with aphasia after stroke. The "Kalmer" Relaxation treatment package materials were iteratively based on participants' experiences and preferences; barriers and facilitators to treatment compliance were explored. Participants were also asked to consider how the intervention might be evaluated in a research trial. A thematic analysis highlighted the importance and need for the development of an appropriate and inclusive relaxation product, to be implemented by health professionals early post-stroke. Several behavioural strategies to improve treatment adherence were recommended. Participants had varying perspectives on clinically meaningful treatment outcomes. Overall, a co-designed accessible relaxation product was viewed as a necessary component of usual stroke care. Acceptability and feasibility and preliminary efficacy of the "Kalmer" intervention should be trialled in future studies. Co-designing psychological interventions for people with aphasia after stroke is needed to meet the needs of this at-risk population. Technology-based relaxation interventions to manage anxiety after stroke are viewed positively by people with aphasia and deemed acceptable and feasible. Clinical trials of these co-designed relaxation interventions are required before recommending integration into routine practice. [ABSTRACT FROM AUTHOR]

To examine patient and audiologist experiences and perspectives of using a patient-centred telecare tool, the Ida Institute's Why Improve My Hearing? (WIMH) Tool, before and during the initial hearing assessment appointment. A qualitative study comprising individual semi-structured interviews using a maximum variation sampling strategy. The data were analysed using an established thematic analysis technique. Fifteen participants, including ten patients (i.e. adults with hearing loss) and five audiologists, were recruited from Adult Audiology Services within the United Kingdom's publicly-funded National Health Service (NHS). Three themes described the impact of using the WIMH Tool. Theme 1 (i.e. enhanced preparation before the appointment): the Tool helps patients to better understand and accept their hearing difficulties in advance of their first appointment. Theme 2 (i.e. enriched discussion during the appointment): the tool can enhance patient-centred communication, as well as the efficiency of the appointment. Theme 3 (i.e. varied impact on outcomes following the appointment): the Tool can improve patient motivation, readiness, and involvement in decision-making, though it may have limited impact on additional outcomes, such as adherence. The WIMH Tool can be successfully implemented in audiological practice, resulting in benefits before and during the initial hearing assessment appointment. [ABSTRACT FROM AUTHOR]

This study explored the experiences of people with acquired brain injury and their families during the COVID-19 pandemic, focusing on how they maintained their communities and sense of belonging, the strategies they found helpful, and advice they have for improving service provision and community connectedness. Semi structured interviews with pictorial mapping were conducted with ten adults with ABI and six of their family members. Participants responded to recruitment information circulated by a state-wide ABI peer support network in South Australia. Four primary themes were identified from the findings: (1) disruptions to routine; (2) social isolation; (3) using technology; and (4) strategies for staying safe and keeping well. Results are discussed using a social and urban geography lens and a conceptual framework of belonging to explore the experiences of people with ABI and their communities. The study reinforces the role of robust peer/support networks to stay connected, stay well and support others. Government, health services and community groups must provide clear and accessible information and supports, and regularly reach out to ensure the safety and wellbeing of people with ABI and their families during the pandemic. People with acquired brain injury and their families experienced increased challenges to maintaining contact with their communities during the COVID-19 pandemic. The main challenges were disruptions to routine, social isolation, and use of technology for health, therapy and social contact. Strategies to support people with ABI to maintain connections, stay engaged, and access technology and information to stay safe and well during lock-down are presented. [ABSTRACT FROM AUTHOR]

Patients have responded in variable ways to pain science education about the psychosocial correlates of pain. To improve the effectiveness of pain education approaches, this study qualitatively explored participants' perceptions of and responses to pain science education. We conducted a qualitative content analysis of interviews with fifteen, adult patients (73.3% female) who had recently attended a first visit to a chronic pain clinic and watched a pain science educational video. Participants thought it was important to improve their and healthcare providers' understanding of their pain. They viewed the video favorably, learned information from it, and thought it could feasibly facilitate communication with their healthcare providers, but, for many participants, the video either did not answer their questions and/or raised more questions. Participants' responses to the video included negative and positive emotions and were influenced by their need for confirmation that their pain was real and personal relevance of the pain science content. Study results support the feasibility and value of delivering pain science education via video and increase our understanding of patients' perceptions of and responses to pain science education. The video's triggering of emotional responses warrants additional research. [ABSTRACT FROM AUTHOR]

People with lower limb impairments are often prescribed orthoses to preserve or enhance their mobility. Exploration of mobility experiences common among orthosis users may provide insights into how orthoses, and other mobility aids, are utilized and regarded. The objective of this study was to broadly explore how lower limb orthosis users describe their mobility. Four focus groups were held online with participants who lived in the U.S. or Canada. Participants had at least six months of experience using an ankle-foot- and/or a knee-ankle-foot-orthosis for one or both legs. All discussions were transcribed and coded. Thematic analysis was used to identify cross-cutting themes. Participants included 29 orthosis users with a variety of health conditions. Inter-related themes, including personal factors, situational contexts, and assistance were identified as elements that influenced participants' mobility. Participants described a process of modifying their mobility through the use and non-use of one or more mobility aids. The current study findings may assist clinicians in developing strategies to optimize orthosis users' mobility in different situations. Experiences described by participants in this study may also help researchers identify aspects of mobility most pertinent to orthosis users and inform the development of new outcome measures. People who use lower-limb orthoses share common mobility experiences, despite differences in health diagnoses. Orthosis users often have opportunities to modify their mobility by choosing to use or not use their brace(s) and/or handheld mobility aids. When providing mobility aid interventions, clinicians should consider how each patient's individual characteristics, including physical characteristics (e.g., the health condition and how it presents, pain, fatigue) and psychosocial characteristics (e.g., fear and confidence, self-motivation, emotional responses), can affect mobility. Clinicians may be able to help patients optimize their mobility by asking about environmental obstacles they regularly encounter and recommending strategies for utilization of mobility aids, including simultaneous use of multiple aids, use of one aid, or choosing not to use any aids, depending on the activity and situation. Clinicians should inquire about all mobility aids available to a patient at home and in the community, including fixed objects, and consider how new mobility aid interventions might affect the patient's mobility when used alone and in combination with other forms of assistance. [ABSTRACT FROM AUTHOR]

To address the paucity of research on patient perspectives regarding return to driving after Total Hip and Total Knee arthroplasty (THA; TKA), and how this impacts on return-to-work. Employed participants, who had undergone THA or TKA, took part in semi-structured telephone interviews. They were asked about support received regarding driving, who provided this information, and the impact of this on their return to driving and consequently work. Thirty-eight people were interviewed. Although sources of information and advice were available, patients struggled to know who to approach. Interviewees reported variations and contradictions in the advice given on when they could safely return to driving after surgery. Of note, there was little difference in the advice given to those who had undergone THA compared to TKA. Many participants devised their own plan for returning to driving There is inconsistency in driving advice provided after THA and TKA. Consequently, patients make their own decisions about how and when to drive, and develop strategies to accelerate the process. Greater clarity is required from healthcare professionals on time frames for driving post-surgery and for advising patients on their responsibilities around informing the DVLA and insurance companies of their surgery. Healthcare professionals should be aware of medico-legal requirements when advising patients about their legal responsibilities regarding driving after joint arthroplasty. Given the pivotal role of driving in the resumption of work after joint arthroplasty, there needs to be greater importance placed on the provision of explicit advice and support on driving for those undergoing orthopaedic surgery. As driving is a complex skill, the advice given to patients should be individualised. Factors to be considered should be the type of vehicle driven e.g., automatic/manual transmission; height of the vehicle from the ground; the side of the surgery; any medication prescribed which might impact on driving, and consideration of any comorbidities. [ABSTRACT FROM AUTHOR]

The experiences of African, Caribbean and Black (ACB) Canadians are seldom explored in the Canadian context. Family physicians act as a gateway to the rest of the healthcare system and are necessary to provide proper patient care. However, Canada's history with colonialism may impact the socio-cultural context in which patients receive care. 41 participants from Waterloo Region, Ontario, were engaged in eight focus groups to discuss their experiences in the healthcare system. Data were analysed following thematic analysis. Style of care, racism and discrimination and a lack of cultural competence hindered access. oor Inadequate cultural competence was attributed to western and biomedical approaches, poor understanding of patients' context, physicians failing to address specific health concerns, and racism and discrimination. Participants highlighted that the two facilitators to care were having an ACB family physician and fostering positive relationships with physicians. Participants predominantly expressed dissatisfaction in physicians' approaches to care, which were compounded by experiences of racism and discrimination. Findings demonstrate how ACB patients are marginalized and excluded from the healthcare syste Iimplications for better access to care included utilizing community healthcare centres, increasing physicians' capacity around culturally inclusive care, and increasing access to ACB physicians. [ABSTRACT FROM AUTHOR]

To describe the rehabilitation service experiences of older adults with dual sensory loss (DSL). Twenty older adults aged ≥65 years with DSL participated in semistructured interviews. Inductive qualitative content analysis was conducted. The participants' experiences were classified into three main categories: 1. Maintaining and regaining function included experiences regarding interventions compensating for loss of function and medical corrections; 2. Mastering the situation described the individuals' competence of DSL, skills acquisition and taking control; and 3. Delivery of rehabilitation services included experiences of encounters with professionals, their attitudes and the organizational impact on accessibility and collaboration. It was important for participants to regain function and compensate for loss in function and to meet others in group rehabilitation. The professionals' attitudes were an important factor that affected the participants' approach to rehabilitation services. Rehabilitation services mainly focused on either VL or HL, not DSL. Based on the participants' experiences, the rehabilitation services seemed to contribute to the older adults' well-being, participation in activities and life roles, which is consistent with the WHO's definition of healthy ageing. The findings can contribute to the development of rehabilitation services for older adults with DSL to meet the diversity of these individuals' needs. [ABSTRACT FROM AUTHOR]

Self-regulation refers to self-management and self-control, with or without disability. Outcomes of rehabilitation with respect to self-regulation are unclear. This study aims to identify elements of self-regulation that former patients consider important in the context of medical rehabilitation. Qualitative exploration based on focus group discussions (FGDs). Transcripts were analysed using thematic analysis as well as open coding. Forty individuals participated in seven diagnosis-related FGDs. Six subthemes were raised in the FGDs which could be merged into three main themes. Two main themes are conditional for regaining self-regulation: 1) having insight into one's condition and abilities (i.e., insight into impairments. consequences of impairments. abilities); 2) to know how to cope with the consequences of the condition (be able to communicate limitations; have to trust in body and functioning). The subject of the last theme 3) is how to apply self-regulation in one's own life (to make use of abilities and optimize functioning). Three main themes of self-regulation in the context of medical rehabilitation were identified by former patients, partly relating to the ability to self-regulate and partly to the execution of self-regulation. This knowledge can be used to define specific rehabilitation goals and further develop rehabilitation outcome measurement. Awareness of the fundamental subthemes of self-regulation in rehabilitation will positively contribute to theory building and improve clinical practice (e.g., goal setting). Paying explicit attention to the six subthemes as standard elements of rehabilitation will help to provide a comprehensive view concerning self-regulation. The conceptual model of self-regulation, based on patient perspectives, can contribute to the measurement of rehabilitation outcomes. [ABSTRACT FROM AUTHOR]

Less than half of stroke survivors will be able to use their arm at 6 months post-stroke. Guidelines recommend the use of intensive upper limb exercise programs to optimize recovery; however, there has been limited research exploring experiences of participation in intensive programs. To identify factors influencing adherence to an intensive upper limb exercise program in people with stroke. Qualitative design. Semi-structured interviews were conducted with 20 stroke survivors who had participated in an intensive upper limb program. Perspectives of participation, including perceived barriers and enablers to program adherence were explored. Interviews were audio-recorded, transcribed, and imported into NVivo for analysis. Two authors mapped themes to the Capability, Opportunity, Motivation-Behavior (COM-B) behavior change model to identify barriers and enablers to adherence. Enablers influencing adherence included: 1) routine practice times (Motivation – automatic); 2) accountability to staff (Motivation – reflective); and 3) social support (Opportunity – social). Barriers to adherence included: 1) exercises being too difficult (Capability - physical); 2) reliance on others to help (Capability - physical); and 3) difficulty 'fitting it in' (Motivation – reflective). Findings will inform recommendations for the delivery of intensive upper limb exercise programs to improve adherence and assist services to provide rehabilitation in a manner that enables self-directed practice by stroke survivors. [ABSTRACT FROM AUTHOR]

An integrated approach to reduce intimate partner violence and improve mental health in humanitarian settings requires coordination across health and protection services. We developed and tested the Nguvu intervention, which combined evidence-based interventions for psychological distress and intimate partner violence among Congolese refugee women in Nyarugusu refugee camp (Tanzania). We conducted 29 semi-structured interviews with Nguvu participants and stakeholders to explore the relevance, acceptability, feasibility, and impact of this intervention. Participants reported that the intervention aligned with needs and filled a gap in programming, yet further adaptations may improve the fit of the intervention. The Nguvu intervention was acceptable to participants, including group discussion of sensitive topics. Confidentiality was highly regarded among staff and participants, which improved safety and acceptability. It was feasible to train non-specialist refugee workers to deliver the intervention with adequate supervision. Facilitators noted contextual challenges that made it difficult to implement the intervention: limited infrastructure, competing priorities, and population mobility. The intervention was perceived to improve awareness of the association between violence and mental health, reduce self-blame, and build skills to improve wellbeing. Recommended adaptations reveal promising, yet challenging future directions for addressing social determinants of mental health and implementing multi-sectoral programmes in complex humanitarian settings. [ABSTRACT FROM AUTHOR]

Patients in hospital following stroke express a desire to continue therapy tasks outside of treatment activities. However, they commonly describe experiences of boredom and inactivity. An enriched environment aims to provide opportunities for physical, cognitive and social activity and informed the development of a Communication Enhanced Environment (CEE) model to promote patient engagement in language activities. Explore patient perceptions of a CEE model, and barriers and facilitators to engagement in the model. A qualitative description study from a larger project that implemented a CEE model into acute and rehabilitation private hospital wards in Western Australia. Semi-structured interviews were conducted with seven patients, including four with aphasia, within 22 days post-stroke who had access to the CEE model. Patients described variable experiences accessing different elements of the CEE model which were influenced by individual patient factors, staff factors, hospital features as well as staff time pressures. Those who were able to access elements of the CEE model described positive opportunities for engagement in language activities. While findings are encouraging, further exploration of the feasibility of a CEE model in this complex setting is indicated to inform the development of this intervention. Patient access to a CEE model is challenging in a hospital setting. Patients who were able to access elements of the CEE model described positive opportunities for engagement in language activities. Patients' access to the CEE model was influenced by patient factors, staff factors, hospital features as well as staff time pressures. [ABSTRACT FROM AUTHOR]

Faith, belief, and religion can powerfully shape how people live with and heal from illness. Engaging in religious practices, from gathering for services to reading the holy texts and engaging in private prayer, can serve as a critical way of coping or building resilience amidst everyday social, moral, and medical challenges. In this article, we investigate why, what, and how people living with chronic illness in an urban South African township prioritise healing practices of the Church over the Clinic. We conducted 88 in-depth qualitative interviews to understand how people think about health, chronic illness, and healing. Most people described complex socio-spiritual beliefs and practices that many prioritised or practiced apart from biomedical care. This included religious practices, such as prayer and drinking church water, as well as one's spirituality, which was an essential way in which people found healing. Recognising how socio-spiritual practice fosters healing and wellness is critical for thinking about health and healing for Soweto residents. [ABSTRACT FROM AUTHOR]

To help enhance participation, the study aims to identify and document a comprehensive list of environmental barriers for people with SCI in the broad travel setting. Semi-structured interviews were conducted among four stakeholder groups: people with SCI (n= 39), caregivers and family members of people with SCI (n= 24), therapists who work with people with SCI (n= 9), and travel professionals specializing in accessible travel (n= 11). Five major categories of travel barrier emerged from the interviews: Partial Accessibility, Systemic Ignorance, Travel Hassles, Poor Service Performance, and Lack of Support. Detailed barriers in each category are described. The analysis of multi-stakeholder perspectives indicates while respondents with SCI offered the most specific information about the barriers, family members/caregivers were most concerned about the impact of systemic ignorance on their loved ones. Therapists focused on offering their clients tools to overcome barriers, and travel agents emphasized their limitations of serving customers with disabilities. Results of the study should help not only health and travel professionals better assist individuals to reintegrate into society after SCI, but also travel and hospitality businesses to better meet the accessibility needs of people with SCI. Travel is important to full participation in society for people after SCI. The study has identified five categories of barriers to travel participation after SCI: partial accessibility, systemic ignorance, travel hassles, poor service performance and lack of support. While traveling is important for participation in society for people with SCI, rehabilitation professionals should work together with policy makers, travel and hospitality businesses and agencies to lower the found barriers. [ABSTRACT FROM AUTHOR]

Treatment of temporomandibular disorder (TMD) currently consists of a combination of noninvasive therapies and may be supported by e-Health. It is, however, unclear if physical therapists and patients are positive towards the use of e-Health. To assess the needs, facilitators and barriers of the use of an e-Health application from the perspective of both orofacial physical therapists and patients with TMD. A descriptive qualitative study was performed. Eleven physical therapists and nine patients with TMD were interviewed using a topic guide. Thematic analysis was applied, and findings were ordered according to four themes: acceptance of e-Health, expected utility, usability and convenience. Physical therapists identified the need for e-Health as a supporting application to send questionnaires, animated exercises and evaluation tools. Key facilitators for both physical therapists and patients for implementing e-Health included the increase in self-efficacy, support of data collection and personalization of the application. Key barriers are the increase of screen time, the loss of personal contact, not up-to-date information and poor design of the application. Physical therapists and patients with TMD are positive towards the use of e-Health, in a blended form with the usual rehabilitation care process for TMD complaints. The rehabilitation process of temporomandibular complaints may be supported by the use of e-Health applications. Physical therapists and patients with temporomandibular disorders are positive towards the use of e-Health as an addition to the usual care. Especially during the treatment process, there is a need for clear animated videos and reminders for the patients. [ABSTRACT FROM AUTHOR]

The aim of the current study was to examine the social representation (SR) of hearing aids in people with hearing loss (PHL) in India, the Republic of Korea (ROK), the United Kingdom (UK), and the United States of America (US). The study used a cross-sectional survey design. The data collected by using a free association task were analysed qualitatively (i.e. content analysis) and quantitatively (i.e. chi-square analysis, similarities analysis, prototypical analysis). 424 participants with hearing loss The most commonly reported categories across all countries were "beneficial," "cost and time," and "appearance and design." Approximately 50% of the associations reported were negative. There were variations in terms of the categories that were predominant in the SR of each country. "Others actions and attitude" category was predominantly reported by PHL in India. "Disturbance" and "dissatisfaction" of hearing aids and the "repairs and maintenance of hearing aids" categories were mainly reported from the ROK and the US, respectively. The current results highlight the main aspects that PHL report spontaneously when they think about hearing aids. The findings will help to further inform public health campaigns and will contribute to develop culturally appropriate media materials regarding hearing aids. [ABSTRACT FROM AUTHOR]

Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death. Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017–18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3–4 months apart, with a telephone follow-up 2–3 months later. Thematic analysis was conducted including analysis within and across participants. Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare. Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a "good death." [ABSTRACT FROM AUTHOR]

Purpose: To understand preferences, barriers, and facilitators to participating in community-based exercise opportunities among adults living with chronic pain. Materials and Methods: An interpretive description methodology based on semi-structured interviews was conducted. Adults (age>18 years) living with chronic pain (pain >3months in duration) were recruited from a multidisciplinary chronic pain clinic in Toronto, Canada. Thematic analysis was used to conceptualize interview data. Results: Fifteen adults living with chronic pain (11/15 women) were interviewed. Four themes regarding preferences, barriers, and facilitators to participation in community-based exercise are described: (1) accessibility (e.g., cost, location, scheduling, and access to program information from healthcare providers); (2) intrinsic factors (e.g., pain, mental health, and motivation); (3) social factors (e.g., isolation, participation with people with similar capabilities, and safe environment); and (4) program factors (e.g., tailored to adults living with chronic pain, gentle exercise, group-based, and delivered by an instructor knowledgeable about chronic pain). Conclusions: Participation in community-based exercise opportunities among adults living with chronic pain may be influenced by accessibility, intrinsic factors, social factors, and program factors. Results provide a foundation of understanding to develop person-centered community-based exercise opportunities that are tailored to meet the preferences of this population. [ABSTRACT FROM AUTHOR]

The present study was conducted to determine the extent of observation of patients' privacy by physicians and nurses and its relationship with patient satisfaction. This descriptive correlational study was conducted on 600 patients selected by convenience sampling. Based on the patients' points of view, the level of observation of patients' privacy and its dimensions, especially the psychosocial dimension, were reported to be higher in nurses than in physicians. Pearson's correlation coefficient showed a direct and significant relationship between the observation of privacy by the nurses and physicians and different dimensions of patient satisfaction. [ABSTRACT FROM AUTHOR]

Despite recent research on the importance of 'milestones' in the development of substance use disorders (SUD) as well as a growing appreciation of individuals as embedded in environmental and social contexts, qualitative analyses of the pathways to SUD have received little attention. This study is a qualitative exploration into pathways to SUD focusing on the intrapersonal, social, and familial reasons that motivate initial and sustained contact with substances and inform the attainment of SUD milestones. First-person accounts of the saliency of substance use may thus support milestone research and inform treatment design. [ABSTRACT FROM AUTHOR]

Self-harm is a global public health concern in terms of increasing morbidity in addition to causing considerable financial implications for the health sector. Patients presenting with a history of self-harm are at increased risk of self-harm repetition and suicide. Research exploring the patient's experience of engaging in multiple self-harm episodes is lacking. This study aimed to explore the experiences and meaning of self-harm repetition, among patients who presented to three urban hospital emergency departments in Ireland. A subset of participants with a history of five or more self-harm attempts from an ongoing study, 'Improving Prediction and Risk Assessment of Self-Harm and Suicide' was selected for this article. Interview transcripts from four participants were selected for analysis using Interpretative Phenomenological Analysis. The qualitative software package NVivo 11 was used to store and organise data into themes. Data were analysed based on four participants (two males and two females) ranging in age from 25 to 56 years. Three of the four participants reported a history of early traumatic emotional, physical and sexual abuse. Four superordinate themes were generated from the data, 'Significance of self-harm to the person', 'Trajectory of self-harm progression', 'Impact of abuse in adult life' and 'The road to recovery'. Self-harm was used as a coping mechanism for participants who experienced distressing life events such as emotional and sexual abuse. The qualitative themes identified in this study have implications for the development of adequate medical and mental health support systems for patients with histories of repeated self-harm. [ABSTRACT FROM AUTHOR]

Research suggests the need for further studies of patients' experiences of cardiac tele-rehabilitation to understand how they adapt to life with heart disease in a program with long-distance contact, remote supervision and monitoring of health behavior. Therefore, the aim of this study was to explore patients' experiences of tele-rehabilitation and the perceived gains of taking part in the program. Seven patients were interviewed using a phenomenological-hermeneutic approach. Interview transcripts were analyzed as narratives using the interpretation theory of the French philosopher Paul Ricoeur. This involves three levels of textual analysis: a naïve reading as the first interpretation followed by a structural analysis, where the text is explored in detail, before identifying the most significant interpretation through critical interpretation. Patients valued cardiac tele-rehabilitation because it was not restricted to the hospital setting. They felt that the program's flexibility was an advantage because the program could be adjusted to their daily lives. The patients showed greater acknowledgement of and commitment towards the rehabilitation interventions if they were consistent with the patients' self-image, and if the activities were already part of their daily lives. If they were not, they were experienced as an extra challenge. Understanding patients' self-image and prior lifestyle may better inform clinicians about why it can be difficult for patients to follow rehabilitation recommendations. Therefore, clinicians may need to focus more on these two factors to help patients adapt to life with heart disease. Patients' self-image and prior lifestyle may be important factors for how patients adapt to their new life situation with heart disease within a cardiac tele-rehabilitation program. Patients' commitment to selected rehabilitation interventions may be either too high or too low if it fails to take into consideration their self-image and prior lifestyle. Understanding patients' self-image and prior lifestyle may better inform clinicians and their understanding of why it can be difficult for patients to follow the rehabilitation recommendations. [ABSTRACT FROM AUTHOR]

Purpose: To determine whether treatment was acceptable to participants and perceived as beneficial by exploring the experiences of people with cognitive communication difficulties following acquired brain injury who participated in a novel, group, communication, project-based treatment. The purpose of the treatment was to improve participants' communication skills and quality of life, by focussing group activity towards the production of a project and by incorporating individualised communication goals into group sessions. Methods: Twenty-one people with acquired brain injury recruited from community settings participated in project-based treatment, which comprised one individual and nine group sessions (of 2–3 people) over six weeks. Structured interviews were conducted post-treatment as part of a broader assessment battery. Interviews were transcribed verbatim and analysed using content analysis to identify codes, categories, and themes. Results: Themes identified from the analysis centred around the treatment experience (general experience; group experience; project experience; working on goals) and benefit of treatment (communicative benefit; other benefits; emotional effects; meeting others; something to do). These themes were consistent with the treatment being perceived as acceptable and having initial efficacy for the participant group. Conclusion: The qualitative data presented here provide positive feasibility findings (acceptability and initial efficacy) of project-based treatment for people with acquired brain injury. The results highlight the value of incorporating participants' views in assessing feasibility in developing novel interventions. Inviting people (with cognitive communication difficulties following acquired brain injury) to feedback on their treatment experience provides valuable information that can confirm treatment choice and content or inform adjustments to future treatment. Group treatment with a meaningful and motivating focus, and individualised communication goals, seem to promote positive change in communication, emotional state, cognition, self-awareness, and social interaction. This study highlights the value of individuals' perspectives in evaluating feasibility of a novel intervention. [ABSTRACT FROM AUTHOR]

Purpose: Exploring the views of those impacted by stroke is key to the design of an effective and appropriate cognitive rehabilitation intervention for post-stroke cognitive impairment. This qualitative study examined the perspectives and preferences of stroke survivors, carers, and healthcare professionals to inform the design of a cognitive rehabilitation intervention. Design and methods: The research employed a qualitative study design and thematic analysis of data. In-depth semi-structured interviews were conducted with stroke survivors (n = 14), carers (n = 11), and healthcare professionals involved in providing stroke care (n = 19). Interviews were audio-recorded and transcribed. Coding was conducted and themes were developed both inductively and deductively. Results: Themes address five broad areas relevant for the design and implementation of the intervention: (i) activities to include; (ii) when it takes place; (iii) location; (vi) format; (v) who the intervention should include. Conclusions: Qualitative work with stroke survivors, carers and healthcare professionals provided vital information for the intervention design. Issues identified by participants as being key to intervention development included: (i) implications of post-stroke cognitive impairment survivors' confidence; (ii) their individual capacity in terms of fatigue and metacognition; and (iii) practical issues such as intervention location. The inclusion of psychoeducation regarding consequences of stroke was recommended. Stroke survivors, carers, and rehabilitation professionals who provide stroke care can provide valuable insights and ideas to inform the development of a cognitive rehabilitation intervention. A cognitive rehabilitation intervention should be tailored to patient-specified goals, incorporating both group and individualized activities. Information, education, and communication are required to help stroke survivors and carers understand the cognitive, emotional, and behavioral consequences of stroke. Intervention content should be considerate of stroke survivors' capacity in terms of cognitive impairment and fatigue levels. [ABSTRACT FROM AUTHOR]

This study used focus group interviews with older Chinese long-term care residents (N = 40), to explore their perspectives and experiences of social participation in long-term care institutions. Based on previously established taxonomy of different activity levels, we found that their social participation centered on level 3 (involvement with others), level 4 (task-oriented activities), and level 5 activities (helping others). Participants indicated that their social participation had changed after relocation. Thematic analysis revealed three main themes: increased spare time, increased presence of peers, and new participation opportunities with lost old hobbies. Focusing on the positive changes after relocation and promoting meaningful activities of different levels may benefit long-term care residents. [ABSTRACT FROM AUTHOR]

Purpose: There is a paucity of research into self-management strategies employed by stroke survivors outside of formal rehabilitation. This study aimed to explore stroke survivors' experiences of, and strategies for self-managing their severely impaired upper limb. Materials and methods: English-speaking stroke survivors whose upper limb had been non-functional at 3 months post-stroke took part in interviews (n = 16), a focus group (n = 6) and a survey (n = 20). Quantitative data were analysed descriptively. Qualitative data were analysed through thematic framework analysis using NVivo© software. Results: Participants' median (range) age group was 50–59 years (30–39, 70+). Median (range) time post-stroke was 39 months (4 months, 46 years). The overarching theme across the data was "choosing and expanding." Participants enacted professionally driven management strategies for their affected arm, and then chose to continue with what worked for them. Strategies were expanded through self-discovery and interaction with peers. There were sadness and frustration at the loss of arm function, but also satisfaction and self-confidence when progress was being made. Participants described an attitude of not giving up and remaining hopeful. Conclusions: These findings extend our understanding about how individuals manage their severely impaired upper limb and can be used to inform a novel stroke self-management intervention. Stroke survivors' experiences of managing the severely affected upper limb may inform rehabilitation practice to foster self-management. Rehabilitation professionals may actively support stroke survivors in choosing from, and expanding on professionals' advice and guidance. Maintaining a positive and hopeful outlook is important to many stroke survivors. Professionals should be mindful of the potential impact of their interactions and negative predictions. Stroke survivors' experiences of managing the severely affected upper limb may inform the development of a novel tailored self-management intervention. [ABSTRACT FROM AUTHOR]

Peruvian women experience high mortality from reproductive cancers, partially due to suboptimal cancer care utilization and experiences. In this qualitative study, we examined factors contributing to positive cancer care experiences. Our sample included 11 cancer patients and 27 cancer providers who attended the First International Cancer Symposium survivorship conference in Lima, Peru in 2015. We conducted thematic analysis. Emergent themes revealed that, for patients, individualized empathic care by providers was an important facilitator to positive cancer care experiences. For providers, the ability to provide such care depended on provider norms and facility infrastructure to support such patient-centered practices. [ABSTRACT FROM AUTHOR]

Involving patients and family members in care is a growing area of research and practice as more family members express the desire to participate as constituents of the patient care team. In this study, we aim to understand patients' perceptions of family participation in asthma self-management, particularly concerning health information seeking behavior. Semistructured interviews with 35 patients with asthma were conducted at the Immunoallergology wards of both a central public hospital and a private hospital in Porto, Portugal. Data were collected through the McGill Illness Narrative Interview. Interviews were thematically analyzed as case-based and process tracing-oriented. Asthma in the family history appeared to be a major determinant of two profiles of patientswith asthma: Group 1 (n = 23/35) patients with asthma who are 'nonseekers' of health information and for whom asthma ispart of their family histories and who easily adapt to illness in their daily lives, although they had difficulties controlling theirasthma, given the disease severity; and Group 2 (n =12/35) patients with asthma who are 'seekers' and do not have familyhistories of asthma and whose experiences of illness brought limitations to their daily lives, raising questions of bafflement (Why me?) and control (What can be done?). Asthma patients with family histories tend to be more accepting of their diagnosis but require basic information for daily management. Asthma patients without family histories tend to deny the condition and require more emotional support to cope with it. The family should be considered as integral to the processes of knowledge-sharing and decision-making, and how families experience the disease should be taken into account by health professionals when offering a treatment plan. [ABSTRACT FROM AUTHOR]

Objective: Colorectal cancer (CRC) screening efforts have effectively reduced CRC morbidity and mortality, yet screening remains relatively low among Latinos. The study's purpose was to document the awareness/knowledge of Fecal Immunochemical Test (FIT) among Latinos, gain better understanding of patient and health care provider perceptions about FIT, and explore the feasibility of adoption/uptake. Design/Methods: The study was guided by qualitative, ethnography design and methods. Eight focus groups (FG) with patients who self-identified as Hispanic/Latino between 50–75 years of age and key informant interviews with providers (N = 10) were conducted followed by a brief demographic questionnaire. Results: Awareness levels varied based on prior screening experiences among patients and providers. Both patients and providers believed the FIT is simple and easy to use; although, a minority of patients expressed doubts about the efficacy of the FIT when compared to colonoscopy. Conclusions: Despite the increasing acceptance of the FIT among the health care community, a significant lag time still exists among our study's populations. Study findings speak to novelty of the FIT test among underserved populations and the health disparity gap between health innovations/discoveries. Increased awareness and education efforts about the efficacy coupled with information about its accessibility, ease, and user instructions may increase the adoption of FIT. [ABSTRACT FROM AUTHOR]

The purpose of this article is to examine women's perceptions of the patient-provider relationship in the context of medically high-risk pregnancy (MHRP). Sixteen in-depth interviews were conducted with women hospitalized for MHRP on a maternal-fetal medical unit in the US. Tenets of phenomenology guided the data analysis. We found that beyond normative stress related to managing physical aspects of MHRP, women reported added emotional stressors associated with navigating the fragmented health care environment. This study suggests that improved care coordination and systematic integration of psychosocial professionals within the perinatal interdisciplinary health care team are vital to reduce care-related stressors on this vulnerable patient group. [ABSTRACT FROM AUTHOR]

Purpose: The number of persons living with and beyond cancer is increasing. Such persons often have complex needs that last, and change, over time. The aim of this study is to get insights of lived experience of person diagnosed with colorectal cancer and to create an understanding of cancer trajectories as a dynamic process. This study thus explores Victor Turner's model of social drama in a cancer care context. Method: Turner suggests that crisis is a dynamic process structured by four phases: 1) breach of norm 2) crisis 3) redressive actions 4) reintegration or schism. The research team employed content analysis to explore material gathered through a series of qualitative interviews with nine Norwegian cancer patients over a period of one year. Results: To the authors' knowledge, Turner's model has not earlier been applied to such materials. The results show that Turner's model of social drama is useful in achieving new and possibly important knowledge on illness trajectories from a lived experience perspective. Conclusions: The model of social drama may contribute to a deeper understanding of the processes patients are going through in long-term illness trajectories, demonstrating that illness is not a static matter. [ABSTRACT FROM AUTHOR]

Objective: Hearing impairment is linked to increased fatigue, yet little is known about the real-world impact of this fatigue. This qualitative study investigated the experience of daily-life fatigue in people with a hearing impairment. Design: Individual face-to-face semi-structured interviews were conducted. Thematic analysis was then used to analyse the data. Study sample: Fourteen hearing impaired participants (aged 44-70 years) who varied in terms of hearing loss, hearing aid status, age and gender. Results: The themes and sub-themes that emerged from the transcripts were: Fatigue (effort-driven fatigue, emotion-driven fatigue, breaks and recovery, the perceived relationship between hearing impairment and fatigue, and sleep), Effort (cognitive effort and physical effort), Coping Strategies (withdrawal, avoidance and planning), Relationships and Emotions, Hearing Aid Impact. Conclusions: The study highlights that hearing impairment-related fatigue is experienced by many but not all, and to different extents. Hearing aids were weakly linked to a beneficial effect on fatigue. In addition to the more widely researched effort-driven fatigue, participants described fatigue linked to the negative emotions related to having a hearing impairment. These findings, in conjunction with the widespread utilisation of different coping strategies, demonstrate that the experience of fatigue is varied and likely dependent on personal factors and lifestyle. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to gain insight into experiences and reflections of persons with amyotrophic lateral sclerosis and relatives concerning the peer group rehabilitation programme "More Life – Less Illness". Methods: This qualitative study used the Interpretive Description methodology with Symbolic Interactionism as the analytical framework. Eighteen programme participants representing persons with amyotrophic lateral sclerosis (n = 8) and relatives (n = 10) were included. Data consisted of individual interviews and participant observation. Results: The analysis revealed two categorical themes, "Sense of Community Building" and "Understanding my ALS", which represented the participants' experiences and reflections on peer group rehabilitation. Through the analysis, it became apparent that "Sense of Community Building" gave rise to an increased and personalised understanding of amyotrophic lateral sclerosis among the participants. As a part of the continuous processing of the knowledge gained, "Facing Facts" and "Retaining Normality" appeared as subthemes regarding the participants' ability to live a less dependent and more meaningful life. Conclusions: This study of peer group rehabilitation for persons with amyotrophic lateral sclerosis and relatives indicates that programme participation leads to positive experiences in terms of living a shared meaningful life despite severe disability. The findings may guide practice to develop longitudinal peer group rehabilitation programmes with joint inclusion of persons with amyotrophic lateral sclerosis and relatives. Peer group rehabilitation may facilitate an increased and personalised understanding of what it means to live with amyotrophic lateral sclerosis. A programme design with six months of sequential sessions enables a continuous processing of shared experiences and gained knowledge. Joint participation of persons with amyotrophic lateral sclerosis and their relatives supports both their internal relationship and social networking. Peer group rehabilitation in amyotrophic lateral sclerosis should help overcome obstacles concerning the needs of participants, accessibility, and geographical distance. [ABSTRACT FROM AUTHOR]

Purpose: To explore exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers-Danlos syndrome - hypermobility type and to explore patient experiences of physiotherapy. Methods: A cross sectional questionnaire survey design was used to collect quantitative and qualitative data from adult members of the Hypermobility Syndromes Association and Ehlers-Danlos Syndrome Support UK. Descriptive and inferential statistics were used to analyse the data. Qualitative data was analysed thematically. Results: 946 questionnaires were returned and analysed. Participants who received exercise advice from a physiotherapist were 1.75 more likely to report high volumes of weekly exercise (odds ratio [OR] = 1.75, 95% confidence interval [CI] = 1.30-2.36, p < 0.001) than those with no advice. Participants who believed that exercise is important for long-term management were 2.76 times more likely to report a high volume of weekly exercise compared to the participants who did not hold this belief (OR = 2.76, 95% CI = 1.38-5.50, p = 0.004). Three themes emerged regarding experience of physiotherapy; physiotherapist as a partner, communication - knowledge, experience and safety. Conclusion: Pain, fatigue and fear are common barriers to exercise. Advice from a physiotherapist and beliefs about the benefits of exercise influenced the reported exercise behaviours of individuals with Ehlers-Danlos syndrome - hypermobility type in this survey. Implications for rehabilitation: Exercise is a cornerstone of treatment for Ehlers-Danlos syndrome/Ehlers-Danlos syndrome - hypermobility type. Pain, fatigue and fear of injury are frequently reported barriers to exercise. Advice from physiotherapists may significantly influence exercise behaviour. Physiotherapists with condition specific knowledge and good verbal and non-verbal communication facilitate a positive therapeutic experience. [ABSTRACT FROM AUTHOR]

Social, educational and health related equality is an ideal in the Nordic welfare states. However studies have shown that wellpositioned patients achieve better treatment and more services, for example time and examinations, than others do. This article examines how patients and relatives mobilise resources in decision-making in a stroke unit. In particular, it focuses on the challenges in optimising the rehabilitation process faced by patients and relatives, and the strategies they use. Data were generated using participant observation and semi-structured interviews. Qualitative content analysis was applied to investigate the patients' and relatives' experiences of decision-making. We present a field-specific form of capital: An individual or a family's resources that are valued in the field of rehabilitation as physical, behavioural and cognitively embedded attitudes and practices. Rehabilitation capital consists of four closely interrelated components: Performative Participation (Cognitively Embedded Performance and Self-initiating Activities), Bodily Progression, Institutional Acceptance and Institutional Potential. It is a resource potentially benefitting patients and relatives during inpatient rehabilitation and may provide patients with an advantage, to ensure the best rehabilitation. The possession of Rehabilitation capital (high or low) contributes explanations for unequal practices and treatments at a micro-level in healthcare institutions. [ABSTRACT FROM AUTHOR]

This study explored patient experiences in home health care through a literature review, focus groups, and interviews. Our goal was to develop a conceptual map of home health care patient experience domains. The conceptual map identifies technical and personal spheres of care, relating prior studies to new focus group and interview findings and identifying the most important domains of care. Study participants (n = 35) most frequently reported the most important domain as staff who are caring, supportive, patient, empathetic, respectful, and considerate (endorsed by 29% of participants). The conceptual map includes 114 discrete domains. [ABSTRACT FROM AUTHOR]

Purpose:This study explores the experience of participants taking part in a hand exercise programme for people with rheumatoid arthritis with a focus on adherence. The exercise programme was tested in a randomised controlled trial. This parallel qualitative study will inform future implementation into clinical practice. Method:Twenty-seven semi-structured interviews from 14 participants were undertaken at two time points (4 and 12 months after randomisation). We collected data of participants’ experiences over time. This was guided by an interview schedule. Interview data were analysed using interpretative phenomenological analysis which is informed by phenomenological and hermeneutic theory. We recruited participants from National Health Service rheumatology and therapy departments. Results:At 4 months, 11/14 participants reported continuing with the exercises. By 12 months, 7/13 participants still reported exercising. The ability to establish a routine determined whether participants adhered to the exercise programme. This was sometimes influenced by practical issues. We also identified facilitators and barriers to regular exercise in the themes of the following: the therapeutic encounter, perceived benefit of exercises, attitude of mind, confidence, and unpredictability. Conclusions:Establishing a routine was an important step towards participants being able to exercise independently. Therapists provided participants with skills to continue to exercise while dealing with changes in symptoms and schedules. Potential barriers to long-term exercise adherence need to be taken into account and addressed for successful implementation of this programme.Implications for RehabilitationBehavioural change components such as the use of an exercise planner (stating intentions of where, when and how), daily diary sheets, and joint goal setting enhance adherence to a hand exercise programme for RA by helping to establish routines.Exercise routines need to be flexible enough to fit in with life and symptom changes whilst delivering a sufficient dosage.Therapists facilitate this process by using behavioural components alongside more commonly used aspects of care (assessment, education, advice, and encouragement) to enable people with RA to become independent exercisers. [ABSTRACT FROM AUTHOR]