Adjudications and tinkering with care for socially vulnerable patients with type 2 diabetes in general practice.

OBJECTIVE: To analyse the mechanisms at play in the adjudications made by professionals and socially vulnerable patients with type 2 diabetes about their eligibility for care. DESIGN, SETTING AND SUBJECTS: The study included 14 patients and 10 health professionals in seven general practice surgeries in deprived areas in Greater Copenhagen. The study data consist of 17 semi-structured interviews with patients and 22 with health professionals immediately after observation of 23 consultations. Our analytical approach was inspired by Systematic Text Condensation and the concept of 'candidacy' for access to health care. RESULTS: Adjudications of patients not being candidates for services were common, but we also found that both patients and health professionals worked to align the services to the needs of the patients. This could include using services differently than was intended by the providers or by changing routines to make it easier for patients to use the services. We discuss these processes as 'tinkering'. This usually implies that the best individual solution for the patient is aimed for, and in this study, the best solution sometimes meant not focusing on diabetes. CONCLUSION: The study adds to existing knowledge about access to services for socially vulnerable patients by demonstrating that both patients and professionals in general practice engage in tinkering processes to make services work.

Unequal use and benefits of health services play a significant role in relation to social inequality in healthFlexibility in services and alternatives to school-like rehabilitation are needed to reduce inequality in access to health carePatients were sometimes judged as unsuitable for available routine services, but professionals 'tinkered' with services to make them fitAdaptation of services by professionals in general practice implies a longer time frame for obtaining goals.

The significance of home-based portable pump chemotherapy for family caregivers to newly diagnosed patients with acute myeloid leukemia: A qualitative thematic analysis.

OBJECTIVE: Life as a family caregiver of patients with cancer can be emotionally and practically challenging. Little is known of whether home-based chemotherapy of patients with acute myeloid leukemia places excessive pressure on family caregivers or decreases their burden. To explore the significance of home-based portable pump chemotherapy for family caregivers of patients newly diagnosed with acute myeloid leukemia. METHODS: An explorative qualitative design using dyadic and individual semi-structured interviews with family caregivers and patients were followed by thematic analysis. Purposive sampling was used regarding gender, age, and distance to the hospital. At each interview, we were teams of one researcher and one clinical nurse specialist from the hematology department. The derived themes were predominately descriptive, based on patterns in the data. RESULTS: Five couples participated, (aged 39-72 years). Three themes were identified: 1) Going home. 2) Responsibilities due to the pump and leukopenia. 3) The shadow of the life-threatening disease. The pump was a minor concern to the family caregivers seen in the light of the life-threatening disease. Home-based treatment was a relief but the responsibilities due to leukopenia demanded the caregivers' resources. CONCLUSION: The fear of losing the patient and the burdens of dealing with leukopenia suppressed the family caregivers' sense of load due to the portable pump treatment. The findings underline the importance of healthcare professionals recognizing family caregivers' sense of burden and prioritizing sufficient support and education in order to enhance the everyday life of both patient and family caregiver.

The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: a qualitative study.

PURPOSE: It is well known that being a family caregiver of a palliative patient in general is rewarding as well as burdensome. The COVID-19 pandemic may have exacerbated this situation. We therefore explored the significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home. METHODS: Open-ended, semi-structured telephone interviews were conducted with 15 family caregivers of patients treated by a specialized palliative outpatient unit in a Danish hospital. Interviews were analysed using inductive thematic analysis. RESULTS: Four themes concerning the significance of the COVID-19 pandemic were identified: 1) being a family caregiver of a patient whose lifespan is already limited, 2) dealing with the risk of passing on COVID-19 oneself, 3) dealing with the risk of others passing on COVID-19 to the patient at home, and 4) living with modified specialized palliative care. CONCLUSION: The COVID-19 pandemic had a radical impact on some family caregivers causing emotional despair. They feared not only infecting the patient with SARS-CoV-2 to cause an untimely death but also being unable to be there for the patient during hospitalization, especially in the patient's final days.

"It Is a Full-time Job to Be Ill": Patient Work Involved in Attending Formal Diabetes Care Among Socially Vulnerable Danish Type 2 Diabetes Patients.

Previous research has shown social inequality in type 2 diabetes prevalence and that socially vulnerable type 2 diabetes patients benefit less than average from health services. Based on ethnographic fieldwork carried out between February 2017 and March 2018 in a Danish specialized outpatient clinic, this article focuses on patient work among socially vulnerable type 2 diabetes patients. Through attending to the border zone between formal health care and self-care, we show that patients do a lot of work requiring skills, resources, and initiative, to access and benefit from formal care. This work is complex and implicit in the organization of care. Patients' social situations, especially their employment situation, complicate getting patient work done. Attending to patient work and implicit tasks in care organization may help us to see how social inequality in type 2 diabetes outcomes develops, and may be combated.

Adjusting health care: practicing care for socially vulnerable type 2 diabetes patients.

BACKGROUND: Type 2 diabetes cluster in lower social groups and people with type 2 diabetes from lower social groups experience more complications, benefit less from health services and live shorter lives than people with type 2 diabetes from higher social groups. Different logics govern diabetes care and potentially influence the possibility of socially vulnerable type 2 diabetes patients to access and benefit from health services. In order to understand which practice and underlying logic enable socially vulnerable type 2 diabetes patients to access and benefit from diabetes care we aim to describe what professionals at a specialized diabetes clinic do to adjust services to patient's needs and make the tasks involved in diabetes care doable for socially vulnerable patients and how this work is embedded in an organizational and moral context. METHODS: Ethnographic fieldwork combining participant observation and interviews was carried out between February 2017 and March 2018 in a specialized diabetes clinic located in a socially deprived area in the capital region of Denmark. Sixteen patients (9 male, 7 female, aged 35-73 years) and 12 professionals (7 doctors, 4 nurses, 1 secretary) participated in the study. We used Annemarie Mol's concept of "the logic of care" to guide our analysis. RESULTS: Our analysis shows that the logic of care and the care practices in this clinic are characterized by a needs-based approach to treatment involving adjustment of services (permeability, timing, and content) and seeing the patient as a person with many needs. Throughout our description of selected care practices, we both characterize how health professionals practice this particular logic of care and the organizational and normative conditions that this logic is entangled with. CONCLUSIONS: Practicing diabetes care based on patients' needs involves individualization, something often described as an element of patient centred care. Our study shows that this ideal of individualization and adjustment of treatment is possible in practice. Organizational flexibility and an organizational culture that values patient needs enable needs-based care. In order for socially vulnerable type 2 diabetes patients to benefit from health services it is necessary to create conditions under which professionals can attend to these patients' multiple and complex needs. Adjusting care to these needs demand a variety of professional efforts some of which are hardly predictable or standardisable.

"It has been fun. Super-duper fantastic": Findings from a Danish respite programme to support young carers.

Awareness of young carers' experiences and needs is low on governmental and societal levels in Denmark. This article presents findings from the first evaluation of a Danish respite programme, the Buddy Programme, which aims to provide support to young carers aged 5-15 years who experience serious, chronic or mental health problems and/or death of a parent or sibling. Over a four-six month period, volunteer students from University College Copenhagen offer young carers the opportunity of respite through participating in ordinary activities such as play and sports. In 2017-2018, based on a child-centred approach, we conducted a qualitative study with interviews focusing on how the Buddy programme affected the children. The interviews took place at programme start, halfway through, and after completion with 22 children and 21 parents, as well as single interviews with 20 Buddies assigned to families after completion. Three main themes were identified: (1) the Buddy programme as an activity, (2) how the Buddy Programme affected the children and (3) ending the Buddy programme and wanting to continue the friendship. Our findings emphasise the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers. Being with a Buddy created a free space, allowing children to play undisturbed and to temporarily keep concerns and a guilty conscience at a distance. By offering friendship, Buddies provided opportunities for young carers to feel special, be seen, acknowledged and taken seriously as a child with valid and specific needs and interests. Our findings may help increase awareness of the needs and interests of young carers on governmental and societal levels.

Group-based, person-centered diabetes self-management education: healthcare professionals' implementation of new approaches.

BACKGROUND: Healthcare professionals' person-centered communication skills are pivotal for delivering successful diabetes education. Many healthcare professionals favor person-centeredness as a concept, but implementation in practice remains challenging. Today, programs have often a fixed curriculum dominated by biomedical issues. Most person-centered methods are developed targeting individual consultations, although group-based programs are a widespread and efficient method of support. Person-centeredness in group-based programs requires a change in practice towards addressing biopsychosocial issues and facilitating group processes. The objective of this study was to explore how healthcare professionals implement new approaches to facilitate group-based, person-centered diabetes education targeting people with type 2 diabetes. METHODS: The study was guided by action research and divided into three studies: investigation, development, and pilot using a variety of qualitative methods. In the first study; observations across five settings were conducted. Forty-nine group participants and 13 professionals took part; the focus was to investigate approaches that supported or hindered person-centeredness in groups. Observations were supplemented by interviews (n = 12) and two focus groups (n = 16) with group participants, as well as interviews (n = 5) with professionals. In the second study; 14 professionals collaborated in two workshops to develop new approaches. In the third study, new approaches were pilot-tested using observations in three settings. Twenty-five group participants and five professionals took part. The analysis of the pilot test led to the final workshop where six professionals took part. RESULTS: Implementation was characterized by three categories. Some professionals chose not to implement the methods because they conflicted with their practice relying on the biomedical model. Other incorporated some approaches but was unable to structure the process, leaving participants uncertain about the aim. Finally, one setting succeeded with implementation, tailoring content and processes to group participants' needs. CONCLUSION: The use of action research created context-sensitive approaches and increased professionals' readiness to implement. More attention should be paid to systematic training of professionals. Training should be structured stepwise incorporating techniques directed towards existing skills including ample time to train and reiterate skills.

A Scoping Review of Challenges in Adult Intimate Relationships After Childhood Sexual Abuse.

Childhood sexual abuse is a severe problem worldwide. Childhood sexual abuse can be detrimental to children and their abilities to cope with and communicate in their subsequent adult intimate relationships. The aim of this review was to generate and summarize knowledge about how childhood sexual abuse manifests in adult intimate relationships so healthcare professionals can incorporate this knowledge into treatment and care. A scoping review methodology was selected because it supports examination of the extent, range, and nature of research activity. A content analysis of the studies included in this review led to three thematic categories of challenges in adult intimate relationships after childhood sexual abuse: (a) relationship satisfaction, (b) sexual satisfaction, and

The Impact of Multifaceted Osteoporosis Group Education on Patients' Decision-Making regarding Treatment Options and Lifestyle Changes.

INTRODUCTION: Patients with chronic diseases like osteoporosis constantly have to make decisions related to their disease. Multifaceted osteoporosis group education (GE) may support patients' decision-making. This study investigated multifaceted osteoporosis GE focusing on the impact of GE on patients' decision-making related to treatment options and lifestyle. MATERIAL AND METHODS: An interpretive description design using ethnographic methods was utilized with 14 women and three men diagnosed with osteoporosis who attended multifaceted GE. Data consisted of participant observation during GE and individual interviews. RESULTS: Attending GE had an impact on the patients' decision-making in all educational themes. Patients decided on new ways to manage osteoporosis and made decisions regarding bone health and how to implement a lifestyle ensuring bone health. During GE, teachers and patients shared evidence-based knowledge and personal experiences and preferences, respectively, leading to a two-way exchange of information and deliberation about recommendations. Though teachers and patients explored the implications of the decisions and shared their preferences, teachers stressed that the patients ultimately had to make the decision. Teachers therefore refrained from participating in the final step of the decision-making process. CONCLUSION: Attending GE has an impact on the patients' decision-making as it can initiate patient reflection and support decision-making.

An ethnographic investigation of healthcare providers' approaches to facilitating person-centredness in group-based diabetes education.

AIM: To investigate approaches among healthcare providers (HCPs) that support or hinder person-centredness in group-based diabetes education programmes targeting persons with type 2 diabetes. METHODS: Ethnographic fieldwork in a municipal and a hospital setting in Denmark. The two programmes included 21 participants and 10 HCPs and were observed over 5 weeks. Additionally, 10 in-depth semi-structured interviews were conducted with patients (n = 7) and HCPs (n = 3). Data were analysed using systematic text condensation. RESULTS: Hindering approaches included a teacher-centred focus on delivering disease-specific information. Communication was dialog based, but HCPs primarily asked closed-ended questions with one correct answer. Additional hindering approaches included ignoring participants with suboptimal health behaviours and a tendency to moralize that resulted in feelings of guilt among participants. Supporting approaches included letting participants set the agenda using broad, open-ended questions. DISCUSSION: Healthcare providers are often socialized into a biomedical approach and trained to be experts. However, person-centredness involves redefined roles and responsibilities. Applying person-centredness in practice requires continuous training and supervision, but HCPs often have minimum support for developing person-centred communication skills. Techniques based on motivational communication, psychosocial methods and facilitating group processes are effective person-centred approaches in a group context. CONCLUSION: Teacher-centredness undermined person-centredness because HCPs primarily delivered disease-specific recommendations, leading to biomedical information overload for participants.

The potential of a self-assessment tool to identify healthcare professionals' strengths and areas in need of professional development to aid effective facilitation of group-based, person-centered diabetes education.

BACKGROUND: Healthcare professionals' person-centered communication skills are pivotal for successful group-based diabetes education. However, healthcare professionals are often insufficiently equipped to facilitate person-centeredness and many have never received post-graduate training. Currently, assessing professionals' skills in conducting group-based, person-centered diabetes education primarily focus on experts measuring and coding skills on various scales. However, learner-centered approaches such as adequate self-reflective tools have been shown to emphasize professional autonomy and promote engagement. The aim of this study was to explore the potential of a self-assessment tool to identify healthcare professionals' strengths and areas in need of professional development to aid effective facilitation of group-based, person-centered diabetes education. METHODS: The study entails of two components: 1) Field observations of five different educational settings including 49 persons with diabetes and 13 healthcare professionals, followed by interviews with 5 healthcare professionals and 28 persons with type 2 diabetes. 2) One professional development workshop involving 14 healthcare professionals. Healthcare professionals were asked to assess their person-centered communication skills using a self-assessment tool based on challenges and skills related to four educator roles: Embracer, Facilitator, Translator, and Initiator. Data were analyzed by hermeneutic analysis. Theories derived from theoretical model 'The Health Education Juggler' and techniques from 'Motivational Interviewing in Groups' were used as a framework to analyze data. Subsequently, the analysis from the field notes and interview transcript were compared with healthcare professionals' self-assessments of strengths and areas in need to effectively facilitate group-based, person-centered diabetes education. RESULTS: Healthcare professionals self-assessed the Translator and the Embracer to be the two most skilled roles whereas the Facilitator and the Initiator were identified to be the most challenged roles. Self-assessments corresponded to observations of professional skills in educational programs and were confirmed in the interviews. CONCLUSION: Healthcare professionals self-assessed the same professional skills as observed in practice. Thus, a tool to self-assess professional skills in facilitating group-based diabetes education seems to be useful as a starting point to promote self-reflections and identification of healthcare professionals' strengths and areas of need of professional development.

Nurses' Use of iPads in Home Care-What Does It Mean to Patients?: A Qualitative Study.

Although the use of technology is growing, little is known about how patients perceive technology in the form of tools used by health professionals. The prevailing view in the literature is that technology is cold, compared with the warm hands of nurses, but research regarding nurses' use of technology such as tablets is scarce. Even scarcer is research on how patients perceive the use of technological tools. This study examines patients' perspectives on the use of iPads by home care nurses. Semistructured interviews were conducted with seven participants who were receiving home care in Denmark, aged 62 to 90 years, with different backgrounds and experiences with technology. Participants viewed nurses' use of iPads as an everyday occurrence, reflecting societal growth in the use of technology, and some perceived it as a sign of professionalism with the potential to enhance care. Their perceptions varied somewhat according to their baseline knowledge and experience with the technology. Although nurses may view technology as cold, the findings suggest that patients have a slightly warmer view of it. More patient-centered research into the use of technology in healthcare is needed.

Managing a Bone Healthy Lifestyle After Attending Multifaceted Group Education.

We examined patients with osteoporosis implementation of recommendations regarding a bone healthy lifestyle after the patients attended multifaceted osteoporosis group education (GE). Our findings suggest that GE can support and influence patients' transfer of preventive actions. Still patients are challenged by concerns related to social roles and physical ability. We investigated if and how patients implemented knowledge from attending multifaceted osteoporosis GE in their daily lives. An interpretive description design using ethnographic field work was applied. In all 14 women and three men diagnosed with osteoporosis who attended multifaceted GE at a Danish hospital participated. Data consisted of field work and individual interviews in the participants' everyday environment after completion of GE. After attending multifaceted GE, participants experienced increased attention to and reflected more on how to implement osteoporosis preventive actions or activities. Participants who felt confident on how to act and experienced a clear need and motivation, or who could make the preventive activity into a social event, demonstrated an increased implementation of the preventive activity. On the contrary, attending GE was in some cases not sufficient to overcome social and physical concerns, or to eliminate uncertainty about recommendations or to make participants identify with the osteoporosis diagnosis, which thus impeded implementation of a bone healthy lifestyle. Attending multifaceted GE can support and influence participants' transfer of preventive actions into daily life. Being aware of how concerns about valued social roles and physical ability interfere with the implementation of medical recommendations obviously needs attention during GE.

Recovery from mental illness: a service user perspective on facilitators and barriers.

Mental health services strive to implement a recovery-oriented approach to rehabilitation. Little is known about service users' perception of the recovery approach. The aim is to explore the service user's perspectives on facilitators and barriers associated with recovery. Twelve residents living in supported housing services are interviewed. The analysis is guided by a phenomenological-hermeneutic approach and the interpretation involves theories from critical theory, sociology, and learning. Learning, social relations, and willpower are identified as having an impact on recovery. Stigmatization and social barriers occurred. Social relations to peer residents and staff were reported as potentially having a positive and negative impact on recovery. Studies have explored the user's perspectives on recovery but this study contributes with knowledge on how recovery-oriented services have an impact on recovery.

Everyday life for users of electric wheelchairs - a qualitative interview study.

PURPOSE: The aim of this paper is to explore how users of electric wheelchairs experience their everyday life and how their electric wheelchairs influence their daily occupation. Occupation is defined as a personalized dynamic interaction between person, task and environment, and implies the value and meaning attached. METHOD: Nine semi-structured interviews were conducted with experienced electric wheelchair users. ValMo was used as the theoretical framework for both interviewing and the analysis. The transcribed interviews were analysed using thematic analysis. RESULTS: Findings revealed key elements in electric wheelchair users' experience of how the use of a wheelchair influences everyday life and occupation. Four central themes emerged from the participants' experiences 1) The functionality of the wheelchair, 2) The wheelchair as an extension of the body, 3) The wheelchair and social life, and 4) The wheelchair and identity issues. The themes were interrelated and show how all levels of occupation were influenced both in a positive and negative way, and how it affected identity. CONCLUSIONS: It is essential that professionals working with electric wheelchair users are aware of how all levels of occupation and identity are influenced by using a wheelchair. This will assist professionals in supporting the users living an autonomous and meaningful life.

Negotiated interactive observation: Doing fieldwork in hospital settings.

In this paper I discuss the possibilities and limitations of the ethnographer participating in the different on-going activities and events in highly specialised healthcare systems. The concept of participant observation is based on a number of assumptions, particularly that the ethnographer will become one of 'them' to be able to follow the steps belonging to the accepted ethnographic research practice of doing fieldwork. The character of fieldwork in highly specialised healthcare systems does not fit well with this assumption. I suggest that we need to rethink the concept of participant observation and I propose negotiated interactive observation as a more appropriate way to describe ethnographic fieldwork in a setting such as the hospital or the clinic.