Associations of gender with sexual functioning, loneliness, depression, fatigue and physical function amongst patients suffering from rheumatoid arthritis with a particular focus on methotrexate usage.

There is a lack of knowledge regarding methotrexate (MTX) usage in patients with rheumatoid arthritis (RA) and its possible links with gender, disease characterization and sexual functioning, loneliness, fatigue and depression. We, therefore, investigated the associations of gender with physical function, fatigue, depression, loneliness and sexual functioning with a particular focus on MTX usage. A cross-sectional study design was used. Inclusion criteria were RA diagnosis, age above 18 years and available data on MTX treatment 1 year after diagnosis. Data consisted of responses from validated questionnaires regarding physical function, fatigue, depression, loneliness and sexual functioning combined with evaluations from medical records. Data were analysed with linear regression models comparing numerical outcome measures between male and female patients and between MTX users and MTX non-users. Amongst 286 patients with RA (69 men and 217 women), 67.8% were MTX users 1 year after diagnosis. Comparing women and men, both overall and within subgroups of MTX usage, we found significantly more adverse outcomes for women than men in physical functioning at diagnosis and in sexual function, depression, fatigue and physical functioning at enrolment in the study. Gender differences were also present when comparing MTX users with MTX non-users divided by gender. There were only significant differences in the HAQ and loneliness scores when comparing MTX users with MTX non-users. Women with RA had more negative outcomes measured by the selected PROMs compared to men with RA, both overall and in subgroups of users and non-users of MTX. These findings call for sharpened attention to the importance of gender in the treatment and care of patients with RA, as well as in future clinical research.

Communicating without a Shared Language: A Qualitative Study of Language Barriers in Language-Discordant Cancer Communication.

We use language to achieve understanding, and language barriers can have major health consequences for patients with serious illness. While ethnic minorities are more likely to experience social inequalities in health and health care, communicative processes in language-discordant cancer care remain unexplored. This study aimed to investigate communication between patients with cancer and limited Danish proficiency and oncology clinicians, with special emphasis on how linguistic barriers influenced patient involvement and decision-making. 18 participant observations of clinical encounters were conducted. Field notes and transcriptions of audio recordings were analyzed, and three themes were identified: Miscommunication and uncertainty as a basic linguistic condition; Impact of time on patient involvement; Unequally divided roles and (mis)communication responsibilities. The results showed that professional interpreting could not eradicate miscommunication but was crucial for achieving understanding. Organizational factors related to time and professional interpreting limited patient involvement. Without professional interpreting, patients' relatives were assigned massive communication responsibilities. When no Danish-speaking relatives partook, clinicians' ethical dilemmas further increased as did patient safety risks. Language barriers have consequences for everyone who engages in health communication, and the generated knowledge about how linguistic inequality manifests itself in clinical practice can be used to reduce social inequalities in health and health care.

"What it really takes" - A qualitative study of how professionals coproduce healthcare service with immigrant patients.

Background: The concept of coproduction shows great promise for meaningful partnerships between patients and health professionals. This is particularly relevant for immigrant patients who are less inclined to take an active role in consultations. The present study described health professionals' practices and experiences of coproducing healthcare service with immigrant and refugee patients in clinical encounters. Methods: We conducted a three-phase qualitative study with immigrant and refugee patients and health professionals at an interdisciplinary outpatient clinic for immigrants and refugees with complex long-standing health problems at a Danish university hospital. First, we conducted 25 observations of consultations between seven professionals (three doctors, three nurses, one social worker) and 24 patients with varied backgrounds and health problems. Findings were discussed in a focus group and individual interviews with the migrant clinic's staff. Finally, the themes were discussed with co-researchers and revised in a member check with experienced clinicians. Data were analyzed through meaning condensation, supported by the NVivo software. Results: We identified four themes characterizing the work of health professionals in creating coproduced healthcare service: a team effort of sense-making, disentangling the chaos first, when everything fails - listen to the patient, and continuity - becoming part of the patient's story. Conclusion: Interdisciplinary work fostering values of doing what makes sense to form a positive partnership with the patient allows health professionals to act autonomously, flexibly, and creatively. Using communication tools designed around patient needs, create optimal conditions for coproduction as health professionals empathically validate and integrate patient experiences. Professionals need advanced listening and relational skills and tolerance of ambiguity and insecurity. Relational continuity facilitates long-term coproduction but also bears risks of emotional dependency.

A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study.

BACKGROUND: There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer's health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers from minority ethnic groups. The intervention was a modified version of a culturally sensitive case-management program developed in Australia which had been shown to improve carers' sense of competence in managing dementia and their mental well-being. METHODS: A small pilot trial was used to examine the feasibility and preliminary efficacy of the intervention. Feasibility indicators included data on recruitment, retention, adherence, and fidelity. Acceptability and suitability of the intervention was explored in post-intervention interviews with family carers, and baseline and follow-up scores for outcome measures were examined. RESULTS: Ten (30%) of 33 eligible family carers consented to participate in the study, but three were lost to follow-up and seven (70%) family carers completed the trial. Intervention fidelity, acceptance, and satisfaction were high. Results for outcome measures indicated that the intervention may improve family carers' sense of competence by helping them cope better with challenges relating to caring and managing dementia and improved their satisfaction with primary care services. CONCLUSIONS: The results suggest that the intervention is feasible and worth exploring for family carers of people with dementia from minority ethnic groups in Denmark.

Hospital nurses' experiences of and perspectives on the impact COVID-19 had on their professional and everyday life-A qualitative interview study.

AIM: To explore how hospital nurses experienced their work situation during the COVID-19 pandemic and how this affected the conduct of their professional and their everyday life. METHODS: Interviews using critical psychology. A total of 24 nurses participated, representing departments of both medicine and surgical specialties. All nurses worked either in the department where they are usually stationed or were recruited from other departments to the COVID-19 department. RESULTS: Five themes were identified: (1) COVID-19 had importance to nurses' sense of self as a nurse; (2) a new solidarity developed; (3) professional reflections-caring for patients; (4) the importance of recognition and humiliation and (5) COVID-19 had consequences for the nurses' conduct of everyday life. CONCLUSION: The findings showed that some nurses caring for patients with COVID-19 experienced a new solidarity with their colleagues. Other nurses found it to have a negative impact on their conduct of their professional life.

Feasibility of a culturally tailored dementia information program for minority ethnic communities in Denmark.

OBJECTIVES: Proactive efforts that take language and cultural barriers into consideration may be needed to raise awareness of dementia and improve access to services in minority ethnic communities. The aim of this study was to assess the feasibility of a culturally tailored dementia information program and the immediate effects on participants' intention to seek help for memory problems, their knowledge and beliefs about dementia, and their knowledge about options for support. METHODS: A novel dementia information program, consisting of one 2-h session, was developed through a collaborative research process with primary care dementia coordinators and multicultural link workers as co-researchers. It provides basic knowledge about dementia to minority ethnic communities and can be delivered in a community setting by non-specialists. RESULTS: Six information program sessions were conducted with a total of 110 participants; 65 Turkish, 19 Pakistani, 20 Arabic-speaking, and 6 with another minority ethnic heritage. The program had a significant effect on participants' immediate knowledge and beliefs about dementia as measured with a quiz (z = -2.02, p = 0.04, d = 0.90). In a post-program focus group meeting, facilitating multicultural link workers reported satisfaction with facilitator training, adopted recruitment strategies, and content and delivery of the information sessions and provided feedback on improving the program. CONCLUSIONS: The results provide support for the feasibility of the culturally tailored dementia information program. The program has the potential to improve knowledge and beliefs about dementia and options for formal support in minority ethnic communities and seems easily implemented in existing services, and at a low cost.

Interpreters' experiences of participating in an introduction course in the healthcare sector. An ethnographic field observation study.

AIM: We aimed to explore how interpreters experienced being part of a special designed health introduction course and to obtain their perspectives on the learning process. The overall aim was to improve health care to patients with language barriers. DESIGN: With a hermeneutic phenomenological approach, we used participant observations as a method for collecting data. METHOD: The teaching methods used were case-based learning, role-play and active involvement including dialogs, discussions and critical reflections. The interpreters were divided into teams of 10-15 interpreters. Over the duration of 6 weeks, teaching sessions were conducted, with 3 hr/week planned. RESULTS: The findings emphasize the importance of providing the interpreters with education, supervision and a work environment where they can confidentially share and get competent feedback on their experiences and linguistic skills, in order to ensure patients get the correct information in their native language.

Mental movements: How long-distance walking influences reflection processes among middle-age and older adults.

By providing a distinctive room for reflection, long-distance walks can help people similar to professional counselling. To understand reflection processes' influence on mental health, a framework focusing on personal transformations, specifically through the concept of liminality, can be used. Through nine semi-structured interviews with middle-aged and older long-distance walkers, this study answers the following question: How do middle-aged and older adults experience long-distance walking, and how do their experiences influence their reflective process? Four themes emerged during the analysis: (1) overcoming strain and achieving a sense of capability; (2) simplicity in obligations and having the time to pursue emotionally difficult experiences; (3) solitariness and reflection on oneself; and (4) calmness and embracing thoughts. These findings illustrate how going on long-distance walks may be similar to entering a liminal, or transformational, space. The findings show how long-distance walks can be helpful, or perhaps even therapeutic, in situations where personal transformation is required.

Stakeholder perspectives of the dementia-friendly hospital: A qualitative descriptive focus group study.

The term dementia-friendly hospital is increasingly used to describe a variety of initiatives and strategies that are implemented to meet the challenges faced by patients with dementia during hospitalization. However, no definition of the dementia-friendly hospital currently exists. This qualitative focus group study aimed to describe stakeholders' perspectives of the dementia-friendly hospital. Four stakeholder groups were included: people with dementia, relatives, hospital staff, and representatives from the Danish Alzheimer Association. The thematic analysis suggests that a person-centered approach is a key feature. This approach is described as a continuously reflexive awareness of how to see the person behind the dementia diagnosis. We discuss possible revision of the current dementia discourse and the implications of the findings for future practice and research.

Rotational care practices in minority ethnic families managing dementia: A qualitative study.

BACKGROUND: Although minority ethnic families have a lower uptake of dementia care services, little research has explored how minority ethnic carers cope with and manage dementia care in their everyday lives. The aim of this study was to investigate organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families from the perspective of family carers, primary care dementia coordinators, and multicultural link workers in Denmark. METHODS: Semi-structured qualitative individual and group interviews with minority ethnic family carers, primary care dementia coordinators, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework and results were analyzed using thematic analysis. RESULTS: A total of 21 individual and four group interviews were conducted, including a total of 30 participants. A key finding was that the care responsibility was usually shared between several family members, who took turns to provide 24-hour care for the person with dementia. Rotational 24-hour care, either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementia, emerged as a common alternative to formal care. Another important finding was that despite decreasing the burden of care of individual family carers, rotational care could be confusing and stressful to the person with dementia and could have a negative impact on the quality of life of all involved. CONCLUSION: The way minority ethnic families organize dementia care have implications for understanding and communicating about support needs. Higher reliance on shared family care should not be taken to indicate that minority ethnic communities are not in need of support from formal services.

Barriers in access to dementia care in minority ethnic groups in Denmark: a qualitative study.

OBJECTIVES: To explore barriers in access to dementia care in Turkish, Pakistani and Arabic speaking minority ethnic groups in Denmark. METHOD: Semi-structured qualitative individual- and group interviews with minority ethnic family carers, primary care dementia coordinators, staff in elderly daycare, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework. RESULTS: A total of 21 individual- and 6 group interviews were conducted, including a total of 35 participants. On the service user side, barriers in access to dementia care were related to lacking language proficiency and strong cultural norms, including familial responsibility for the care of older family members and stigma associated with mental illness and dementia. On the care provider side, the available formal services were rarely tailored to the specific needs of minority ethnic service users and were often considered inadequate or unacceptable. CONCLUSION: Care practices and perceived consequences of dementia in minority ethnic communities were heavily influenced by cultural factors leading to a number of persisting barriers to accessing dementia care services. There is a simultaneous need to raise awareness about dementia and the existence of dementia care services in minority ethnic groups, to reduce stigma, and to develop culturally appropriate dementia care options.

Sexual Health and Dysfunction in Patients With Rheumatoid Arthritis: A Cross-sectional Single-Center Study.

INTRODUCTION: An increased risk of sexual health problems is seen among patients with chronic illnesses. The background is likely to be multifactorial, but it remains poorly understood. AIM: To investigate the sexual health and functioning of patients with rheumatoid arthritis (RA) and to examine gender differences, general population comparisons, and possible somatic, psychological, and disease-specific determinants. METHODS: A cross-sectional study using a digital questionnaire distributed among 380 patients diagnosed with RA in a Danish university hospital outpatient setting. MAIN OUTCOME MEASURE: A range of patient-reported outcomes were obtained, including scores from the validated rating scale Changes in Sexual Functioning Questionnaire. Furthermore, individual medical record information was collected. RESULTS: A total of 329 patients (250 women and 79 men) were included (age range: 25-73 years; mean age: 57.2 years). The Changes in Sexual Functioning Questionnaire scoring indicated an overall sexual dysfunction in 33.8% of men and 58.1% of women.More than one-third (37.6%) of patients felt that RA had made their sex life more complicated, and 32.4% feared that this might someday be the case. In total, 29.2% patients had experienced sexual problems due to their RA treatment. Of the respondents who experienced RA-related fatigue, 46.5% reported that this impacted negatively on their sexual activity. The risk of one or more sexual health adversities was significantly correlated with female gender, older age, moderate or severe depression, moderate to moderately high loneliness, more than 2 comorbidities, and a fatigue score above 75 out of 100 on a visual analogue scale. Compared to the general population, significantly fewer patients with RA considered their sex life important, and significantly fewer patients appraised their current sex life as good or very good. Moreover, significantly more women with RA (32.1%) than women from the general population (15.7%) had not had any sex life during the past year. A vast majority of patients with RA (93.5% of women and 85.5% of men) had not discussed sexual issues with a health-care professional during the last 5 years. Of all, 32.5% would like health-care professionals to address sexual topics in the consultation occasionally. CONCLUSION: Sexual dysfunction is highly prevalent in patients with RA, but the problems are not regularly addressed in consultations provided by the rheumatology department. Bay LT, Graugaard C, Nielsen DS, et al. Sexual Health and Dysfunction in Patients With Rheumatoid Arthritis: A Cross-sectional Single-Center Study. Sex Med 2020;8:615-630.

"To be lonely in your own loneliness": The interplay between self-perceived loneliness and rheumatoid arthritis in everyday life: A qualitative study.

OBJECTIVE: Loneliness has a negative impact on physical health, and rheumatoid arthritis symptoms can lead to social isolation. However, there is a lack of research exploring patients' perspectives on self-perceived loneliness in everyday life with rheumatoid arthritis. The purpose of this study was to gain insight into the meaning and importance of self-perceived loneliness among adult patients diagnosed with rheumatoid arthritis. METHODS: This study was designed as a qualitative, exploratory interview study using a narrative framework. Semi-structured interviews were conducted with Danish adults with rheumatoid arthritis. All interviews were recorded, transcribed verbatim, and analyzed within a narrative thematic framework. RESULTS: Ten women and seven men were interviewed, aged between 18 and 73 years and a disease duration between 6 months and 40 years. Three themes were identified during the analysis: (1) explanations of loneliness in everyday life with rheumatoid arthritis, (2) disclosing or disguising loneliness, and (3) feelings of loneliness in social life. CONCLUSION: The findings from this study show that loneliness can be burdensome when living with RA. Narratives of loneliness can be hard for patients to disclose, so health care practitioners should take responsibility for legitimizing this subject. A narrative approach in consultations may be helpful to support patients and to encourage a dialogue about loneliness in everyday life with rheumatoid arthritis.

How do Tanzanian nursing students experience an elective exchange programme - A qualitative study.

BACKGROUND: Experiences from the Peace Corps and President's Emergency Plan for AIDS Relief programs show that exchange of nurses can strengthen the breadth and quality of nursing care delivery in places with shortages of health professionals. The objective of this study was to capture the perspectives and experiences of Tanzanian students participating in an international elective in a Scandinavian country. With a phenomenological hermeneutical approach, qualitative interviews were conducted with 16 student nurses from Tanzania. The interviews were guided by a qualitative thematic interview guide. The international placement in Scandinavia had significance to all students. Most students underlined that it had changed their professional and private life to the better, providing them with new competences, new awareness, and job opportunities.

"Sometimes it feels like thinking in syrup" - the experience of losing sense of self in those with young onset dementia.

Purpose: To explore and describe the experience of people having young-onset dementia.Methods: This was a qualitative study that used semi-structured interviews to collect data from nine persons with young-onset dementia (aged 47-65; five men and four women). Data were collected in the spring of 2018. All interviews were conducted at the participants' choice and in their own homes by one interviewer. The collected data were analysed using the six-stage process of reflexive thematic analysis model.Results: The analysis revealed three themes: Dementia causing loss of control over oneself; becoming a burden to the family while sense of self disappears; and fearing a humiliating future.Conclusions: The experience of having and living with young onset dementia affected the persons' thoughts and memory and was experienced through the persons' loss of personality and sense of self. Thoughts about the future were associated with fear, and the risk of changing their personalities to something different from the one which they had experienced as humiliating throughout most of their lives.

Palliative care for older South Asian migrants: A systematic review.

OBJECTIVE: South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers. METHODS: A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data. RESULTS: A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families. SIGNIFICANCE OF RESULTS: Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

Barriers to post-diagnostic care and support in minority ethnic communities: A survey of Danish primary care dementia coordinators.

BACKGROUND: People from minority ethnic groups are under-represented in dementia diagnosis, treatment, and care. The aim of this study was to examine barriers to accessing post-diagnostic care and support in minority ethnic communities from the perspective of primary care dementia coordinators in Denmark. METHOD: A survey questionnaire investigating issues related to provision of care and support services in minority ethnic communities was conducted among 41 primary care dementia coordinators representing all Danish geographic regions. Responses were primarily based on five-point Likert scales. Results from geographic regions with different rates of people from minority ethnic communities with dementia were compared. RESULTS: Among the surveyed dementia coordinators, 95% generally thought that providing dementia care and support services to minority ethnic service users was challenging. Strategies for overcoming cultural and linguistic barriers were generally sparse. Uptake of most post-diagnostic services was perceived to be influenced by service users' minority ethnic background. Communication difficulties, poor knowledge about dementia among minority ethnic service users, inadequate cultural sensitivity of care workers, and a lack of suitable dementia services for minority ethnic communities were highlighted as some of the main barriers. Not surprisingly, 97% generally found minority ethnic families to be more involved in provision of personal care and support compared to ethnic Danish families. CONCLUSION: There is a need to develop methods and models for post-diagnostic care and support that include cultural awareness and diversity for interacting with different cultural communities.

Wishes and needs of older persons who have experienced a fall: A qualitative study.

AIM: The aim of this study was to explore the needs and wishes in everyday life of older persons who have experienced a fall. DESIGN: A hermeneutic-phenomenological design with semi-structured interviews. METHOD: Interviews were analysed using systematic text condensation. RESULTS: Nine patients (5 women, 4 men) were included. The participants were between 67-95 years old. Seven of the nine participants had suffered from recurrent falls. The analysis revealed four themes: "To maintain meaningfulness in everyday life after experiencing a fall", "Contact with professionals can be a prerequisite for feeling well and motivated after a fall", "A need for assistive technology and aids in everyday life" and "Asking for help can be a challenge". Our findings highlight that older-person-centred care and treatment are essential to address the complex variations in needs and wishes of older persons who have experienced a fall.