Women's experiences with opting out of cervical cancer screening and the role of the nurse in the women's decision-making process.

AIM: To explore Danish women's experiences with opting out of cervical cancer screening and the role of the nurse in the women's decision-making process. DESIGN: A qualitative study using semi-structured, individual interviews with a phenomenological-hermeneutic approach. METHODS: Interviews were conducted with 13 women with experience in opting out of cervical cancer screening. Women were recruited through a public flyer and interviewed virtually or by phone. The interviews were analysed using the theory of interpretation from Paul Ricoeur and consisted of three levels: naïve reading, structural analysis, and critical discussion and analysis. The present study adheres to the COREQ guidelines. RESULTS: The women experience various personal causes for opting out of cervical cancer screening, such as low accessibility of screening appointments, discomfort during the smear test, fear of being sick, and insufficient information about the relevance of screening to the individual woman. The perceived disadvantages of screening outweighed their perceived advantages. The women's experiences did not include the role of the nurse in the procedures and knowledge sharing related to cervical cancer screening. However, nurses were described as having good communicative and relational qualifications relevant to being involved in cervical cancer screening. CONCLUSION: It was challenging for the women to weigh the advantages and disadvantages of cervical cancer screening and thus to make an informed decision about participation. They expressed a need for more information on which to base their decision. This places nurses in a much needed, yet unexplored, role of identifying and lowering potential personal barriers that may outweigh the women's perceived benefits of participating in screening. IMPLICATION FOR THE PROFESSION AND/OR PATIENT CARE: Nurses should play a more active role in cervical cancer screening such as improving general knowledge and facilitating two-way communication about its relevance. REPORTING METHOD: The present study adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

School absence legislation governing in Norway, Sweden and Denmark for children with chronic illness in compulsory education-A comparative study.

BACKGROUND: Health and education are interrelated and influence social, economic and lifestyle perspectives. Children with chronic illnesses experience barriers in the educational system regarding school attendance and social isolation. Gaining knowledge of compulsory education and how children with chronic illnesses are supported is crucial for the implications of future education policy and legislation in Scandinavia. This study compares Scandinavian legislation frameworks on compulsory education, chronic illness and school absence to form the basis of future research on education for children with chronic illness. METHODS: The study uses a comparative approach to explore the support of children with chronic illnesses in compulsory education across Norway, Sweden and Denmark. The documents included are 3 education acts and 15 secondary documents, which are notes and guidelines for the education acts. The data were analysed using a manifest content analysis. FINDINGS: We found four categories and six subcategories: (1) school obligation and rights; (2) chronic illness; (3) school absence: (a) categorisation of absence; (b) registration of absence; and (c) sanction; and (4) education support: (a) Hospital school support; (b) Home instruction support; and (c) technological support. CONCLUSION: This study's findings demonstrate the similarities and differences in the Scandinavian compulsory education legislation and guidelines regarding chronic illness and school absence. We found similarities across the countries regarding chronic illness and school absence. Still, the findings showed differences in the systematic registration of school absence and requirements for attendance with compulsory education in Norway and Denmark compared with compulsory schooling in Sweden. This knowledge will inform and enlighten future discussions and decisions in education and public health. The results can contribute to awareness of the opportunities for educational support and perspectives about education for children with chronic illnesses. Future research focusing on the experience of children with chronic illness and educational support is needed.

New medicine for neuromuscular diseases: An evolving paradox for patient and family hopes and expectations.

Recent developments in novel therapies for neuromuscular diseases offer parents new perspectives on their affected children's future. This article examines how the emergence of new therapies impacts the lives of parents of children with Duchenne muscular dystrophy or spinal muscular atrophy type 2, two genetic neuromuscular disorders characterized by progressive muscle degeneration. Aiming for a first-person perspective, fieldwork was conducted utilizing participant observation, semistructured interviews, and several internet sources. Six families with a total of 12 persons, all living in Denmark, were included in the interviews. Two types of parents were identified who were at opposite ends in dealing with the new therapies-the cure optimists and the cure pragmatists. Different hopes resulted in different narratives for their children's futures. The article raises questions about how and when children with chronic diseases should be involved in their parent's hopes for a cure and highlights the dilemmas facing health professionals working in the field of children with chronic diseases for which the prospects of a cure are improving. We conclude that health professionals must find a way to carefully balance guidance and information about experimental medicines, including the fact that experimental medicine sometimes fails, does not work as well as hoped for, or does not become available, with sustaining parental hopes for their children's future.

Cross-sectorial collaboration on policy-driven rehabilitation care models for persons with neuromuscular diseases: reflections and behavior of community-based health professionals.

BACKGROUND: Persons with neuromuscular diseases (NMDs) often experience complex rehabilitation needs due to the disease's impact on their functioning and progression of their diseases. As a consequence of legislation and "policy power", community-based health professionals function as gatekeepers to the rehabilitation trajectory for persons with NMDs in a field where the other professionals are the specialists. AIM: To investigate community-based health professionals' reflections on and behaviors regarding collaboration with a tertiary rehabilitation hospital in a cross-sectorial rehabilitation care model with the overall aim of providing high quality rehabilitation for persons with NMD. METHODS: The design is qualitative and uses interpretive description methodology and the theoretical lens of Edgar Schein's three levels of organizational culture and leadership. An ethnographic fieldwork was conducted from September 1, 2019 to January 30, 2020. Eighty-four community-based health professionals were included and 17 of them were interviewed in four semi-structured focus group interviews (n = 10) and seven individual interviews (n = 7). In addition, 151 pages of observation data were generated. The study adheres to the COREQ guidelines. RESULTS: The analysis showed three themes of importance for the collaboration: Policy and legislation navigation represented that collaboration on rehabilitation was affected by legislation as a management tool with "the case" as the core element, and goal dilemmas. Cross-sectorial knowledge exchange promoted collaboration on coordinated and facilitated rehabilitation and knowledge sharing as a firm anchoring. Patient ownership negotiations implied collaboration was influenced by knowledge founded power and gatekeeping as a navigation tool. CONCLUSION: Three levels of organizational culture and leadership were identified, and this overall structure guided the community-based health professionals in their work and in the complex organizational landscape of collaboration between disconnected healthcare systems. The findings provided insight into behavior and attitudes and the content and the values held by the professionals collaborating across sectors. Future collaboration in rehabilitation models should be multiprofessional and team based. The findings emphasize that it is imperative that managements and professionals strive to strengthen the structure of the collaborative team spirit because this will ensure well-planned, coordinated, and conducted rehabilitation for persons with NMD and enable and support future cross-sectorial collaboration in this rehabilitation model for these persons.

A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a progressive fatal neurodegenerative disease. Around half of the population with ALS develop cognitive and/or behavioral impairment. Behavioral changes in persons with ALS are perceived as the strongest predictor of psychosocial distress among family caregivers. Interventions aiming to support family caregivers are emphasized as important in relation to reducing psychological distress among family caregivers. Successful healthcare interventions depend on the participants' acceptance of the intervention. Therefore, this study aims to evaluate the acceptability of a new online palliative rehabilitation blended learning program (EMBRACE) for family caregivers of people with ALS and cognitive and/or behavioral impairments. METHODS: A qualitative cross-sectional design using the theoretical framework of acceptability to evaluate acceptance of the intervention based on data collected through individual in-depth interviews and participant observations. Individual interviews were conducted in 10 participants post-intervention and participant observations were recorded during virtual group meetings among 12 participants. A deductive retrospective analysis was used to code both datasets in relation to the seven constructs of the theoretical framework of acceptability: affective attitude, burden, ethicality, intervention coherence, opportunity costs, perceived effectiveness, and self-efficacy. The theory of sense of coherence by Antonovsky informed the development and design of the intervention and interviews. The study adheres to the COREQ (consolidated criteria for reporting qualitative research) guidelines. RESULTS: Within the seven constructs we found that affective attitude addressed the meaning and importance of peer support and focused on the participants' needs and challenges. Burden referred to technology challenges, time pressure, and frequent interruptions during meetings. Ethicality concerned transparency about personal experiences and the exposure of the affected relative. Intervention coherence referred to a shared destiny among participants when they shared stories. Opportunity costs primary concerned work-related costs. Perceived effectiveness referred to the usefulness and relevance of peer support and the meetings that brought up new ideas on how to approach current and future challenges. Self-efficacy involved the motivation to learn more about ALS and ways to cope that were accommodated by the convenient online format. CONCLUSIONS: The findings showed that the participants favored peer support and the videos that reduced feelings of loneliness and frustration but also confronted them and provided knowledge on future challenges. Further research should explore the benefits of the program and the meaning of online peer support among caregivers of people with ALS and cognitive and/or behavioral impairments. TRIAL REGISTRATION: Retrospectively registered on November 20th, 2020. ID no. NCT04638608 .

Health-related quality of life and physical functioning in patients participating in a rehabilitation programme, undergoing non-myeloablative allogeneic haematopoietic stem cell transplantation: Outcomes from a single arm longitudinal study.

OBJECTIVE: This study aims to report HRQOL, patient activation and physical functioning of haematological patients, participating in a 6-month multimodal interdisciplinary rehabilitation programme HAPPY, when undergoing non-myeloablative allogeneic haematopoietic stem cell transplantation (NMA-HSCT). METHODS: A prospective single-arm longitudinal design. Outcomes were collected as part of a feasibility study and included: HRQOL (EORTC QLQ-C30), patient activation measure (PAM), cardiorespiratory capacity (VO2peak ), leg extensor power, lean body mass, measured pre-NMA-HSCT at 3-, 6- and 12-month follow-up. RESULTS: Thirty (mean age (SD) 64.1 (6.5)) out of 34 patients participated and 18 completed HAPPY. Outcome measures showed large individual differences of decline and improvement during follow-up. Patients rated HRQOL as good (median 70.8; range 33.3-100). Fatigue, dyspnoea, insomnia and appetite loss mainly remained or worsened. PAM stayed in the upper half of range (median 55.6; range 20.5-84.8) with a trend towards improvement at 12-month follow-up. Physical functioning scores were low [i.e. baseline VO2peak , men median 1.5 L/min range (1.0-2.9), women 1.0 L/min (0.8-1.4), leg extensor power men 2.1 Watt/kg range (1.3-3.8), women 1.7 Watt/kg (1.3-2.4), lean body mass men 19.5% (17.6-24.9) and women 17.8% (15.3-21.7)]. CONCLUSION: The sustained low level of physical functioning and symptoms 12-month after NMA-HSCT emphasise the need for pre-rehabilitation and long-lasting rehabilitation support in this frail patient group.

An Integrated Multidisciplinary Rehabilitation Program Experienced by Patients with Chronic Low Back Pain.

Purpose: To examine how an integrated, multidisciplinary rehabilitation program was experienced by patients with chronic low back pain and to gain insight into how these patients integrated knowledge, skills, and behaviors obtained by the program into their everyday lives.Materials and Methods: A phenomenological hermeneutic design using Ricoeur's interpretation theory was used in the analysis. Data were generated through nine semi-structured interviews in patients with chronic low back pain. The study adhered to the Consolidated criteria for reporting qualitative research (COREQ) checklist.Results: Standardized rehabilitation efforts adapted to individual needs and provided by a highly professional healthcare team in a combination of inpatient stay and home-based activities was experienced as beneficial, because the patients were able to integrate the obtained knowledge, skills, and behaviors into their everyday lives.Conclusions: The findings revealed that the multidisciplinary holistic approach led to higher bodily awareness, greater mental health, and increased social interaction, which improved happiness and quality of life among the patients. This study emphasizes and highlights a rehabilitation approach that promotes home-based activities to provide a base for co-creation across professions regarding rehabilitation initiatives for patients with chronic low back pain.

Navigating a Middle Ground - Exploring Health Professionals' Experiences and Perceptions of Providing Rehabilitation in Outdoor Community Settings.

Contemporary practice has started to rethink use of outdoor and community environments for advancing comprehensive rehabilitation outcomes. The aim is to examine health professionals' experiences and perceptions of providing rehabilitation in outdoor community settings. The purpose is to use these experiences to generate practice-based knowledge in using the outdoors as a means to guide community-based rehabilitation. The Interpretive Description methodology was accompanied by social practice theory. Fieldwork was conducted utilizing participant observation, photovoice, and focus-group interviews. Included were 27 health professionals. The analysis revealed how "naturalistic learning opportunities" offered health professionals strategies to empower activity and participation levels and yet invoked "rehabilitation setting tensions." A continuum was engaged in the theme "navigating a middle ground," representing an integrated environment approach; rehabilitation in conventional indoor and outdoor community settings. Development of a sustainable concept for outdoor community-based rehabilitation involves strengthening health professionals' competencies and skills for providing outdoor and community work.

Experiences with and perspectives on goal setting in spinal cord injury rehabilitation: a systematic review of qualitative studies.

STUDY DESIGN: Systematic review of qualitative studies. OBJECTIVE: To synthesise qualitative research exploring the experiences and perspectives of persons with spinal cord injury (SCI), relatives and health professionals concerning goal setting in SCI rehabilitation. METHODS: Five electronic databases were searched. A search strategy was constructed with key concepts identified using PICo (Population, phenomena of Interest and Context). Peer reviewed studies complying with the inclusion criteria were selected. Interpretive Description methodology guided analysis and synthesis of the findings. RESULTS: The search yielded 427 records. Of 12 full text studies assessed for eligibility, four were included describing goal setting in SCI rehabilitation from the perspective of persons with SCI and health professionals. Persons with SCI described a need for goal setting to be related to their everyday life, whereas the health professionals tended to use the hospital setting as their point of reference. Persons with SCI emphasised the importance of being self-directed and taking an active role in goal setting and rehabilitation. No studies presented the perspective of relatives. CONCLUSIONS: This review illuminates the divergence in the understanding of goal setting between persons with SCI and health professionals. Goal setting in SCI rehabilitation often directly reflects physical functioning goals set by the health professionals, which does not prepare persons with SCI for everyday life and emotional issues. There is lack of focus on goals addressing psychosocial components such as family issues and change of roles. A shared process with goal setting relevant to persons with SCI and their everyday life is needed.

A systematic review on the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors: Implications for primary care.

INTRODUCTION: Symptoms of depression, anxiety and distress are common in the first years after a cancer diagnosis, but little is known about the prevalence of these symptoms at the long term. The aim of this review was to describe the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors, five or more years after diagnosis, and to provide implications for primary care. METHODS: We performed a systematic literature search in the PubMed, PsycINFO and CINAHL databases. Studies were eligible when reporting on the prevalence of symptoms of depression, anxiety and/or distress in long-term cancer survivors (≥5 years after diagnosis), treated with curative intent. RESULTS: A total of 20 studies were included. The reported prevalence of depressive symptoms (N = 18) varied from 5.4% to 49.0% (pooled prevalence: 21.0%). For anxiety (N = 7), the prevalence ranged from 3.4% to 43.0% (pooled prevalence: 21.0%). For distress (N = 4), the prevalence ranged from 4.3% to 11.6% (pooled prevalence: 7.0%). CONCLUSION: Prevalences of symptoms of depression, anxiety and distress among long-term survivors of cancer do not fundamentally differ from the general population. This is reassuring for primary care physicians, as they frequently act as the primary physician for long-term survivors whose follow-up schedules in the hospital have been completed.

An assessment of survivorship care needs of patients with colorectal cancer: The experiences and perspectives of hospital nurses.

PURPOSE: To describe and analyse hospital nurses' experiences and perspectives of needs assessment in relation to colorectal cancer patients' survivorship care and rehabilitation needs. METHOD: The methodology and design of this study was phenomenological-hermeneutic, and the analysis was performed by Ricoeur's theory of interpretation. Twelve hospital nurses working within the care of patients with colorectal cancer participated in four focus group interviews between February-March 2018. Focus group interviews were recorded, transcribed and analysed. The study adhered to the COREQ checklist. RESULTS: Our analysis showed that nurses experienced challenges and barriers in conducting needs assessment. These challenges were described in three main themes. Encountering paradigms brought to light the difficulties relating to implementation of needs assessment into daily practice in the complex context of a hospital setting. Patient involvement could be challenging because of insufficient involvement and inadequate health literacy of patients in relation to needs assessment. A negative attitude towards systematic needs assessment among nurses could present a barrier because of their role as gatekeepers. CONCLUSION: The findings point to important elements that are necessary to consider when planning cancer survivorship care in the hospital setting so that all patients experience the best possible cancer trajectory. These insights can guide future clinical practice in the endeavour to ensure more systematic initiatives towards cancer rehabilitation. RELEVANCE TO CLINICAL PRACTICE: Based on our findings, cancer survivorship care needs assessment in the hospital setting should encompass specific guidelines on needs assessment and systematic implementation of these guidelines by involving hospital management, nurses and patients through use of visionary information and communication. Implementation of these guidelines would be supported by securing knowledge on cancer survivorship care for all hospital health professionals. Health literacy should be considered in formulating guidelines that enhance involvement of patients by use of patient-centred communication.

Patients´ experiences and perspectives of challenges and needs related to nonmyeloablative stem cell transplantation: Involving patients in developing a targeted rehabilitation programme.

AIMS AND OBJECTIVES: To explore patients' experiences and perspectives of their challenges and needs regarding their return to everyday life after allogeneic nonmyeloablative haematopoietic stem cell transplantation (NMA-HSCT). BACKGROUND: NMA-HSCT can cure patients with malignant blood diseases, but during the following years, the majority of patients suffer from serious side effects and complications. Hence, it is a major challenge for patients treated with NMA-HSCT to rehabilitate, maintain physical and psychosocial functioning and return to a life in restored balance. DESIGN: The design was qualitative using the interpretive description methodology, and the theoretical framework symbolic interactionism inspired the interview guide and analysis. METHODS: Between April to May 2017, five focus group interviews were conducted with 15 outpatients in a haematological ward in Denmark. The patients were treated with NMA-HSCT 8-30 months prior to the interviews. The study adheres to the Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: The impaired functioning was the overarching theme and seemed to be the trigger entailing rehabilitation needs related to the following main themes: realising decline, adapting to changes, the meaning of motivation and reliance on relations. These findings seemed to affect and influence the patients' struggle for a return to an everyday life like before being diagnosed or just before undergoing NMA-HSCT. CONCLUSION: This study adds to our understanding of important elements to consider when developing a targeted rehabilitation programme. RELEVANCE TO CLINICAL PRACTICE: Based on our findings, the rehabilitation programme should encompass: extensive variation regarding how to address the impaired functioning through individualised approaches, multimodal interventions, interventions through several months with varying intensity, an interdisciplinary team approach supporting motivation and visualisation of every progress by tangible goal setting, communication regarding hope and support, extended supportive care for patients living alone and finally increased adherence through social sessions with relatives and fellow patients.

Implementing augmentative and alternative communication in critical care settings: Perspectives of healthcare professionals.

AIMS AND OBJECTIVES: To describe the perspectives of healthcare professionals caring for intubated patients on implementing augmentative and alternative communication (AAC) in critical care settings. BACKGROUND: Patients in critical care settings subjected to endotracheal intubation suffer from a temporary functional speech disorder and can also experience anxiety, stress and delirium, leading to longer and more complicated hospitalisation and rehabilitation. Little is known about the use of AAC in critical care settings. METHOD: The design was informed by interpretive descriptive methodology along with the theoretical framework symbolic interactionism, which guided the study of healthcare professionals (n = 48) in five different intensive care units. Data were generated through participant observations and 10 focus group interviews. RESULTS: The findings represent an understanding of the healthcare professionals' perspectives on implementing AAC in critical care settings and revealed three themes. Caring Ontology was the foundation of the healthcare professionals' profession. Cultural Belief represented the actual premise in the interactions during the healthcare professionals' work, saving lives in a biomedical setting whilst appearing competent and efficient, leading to Triggered Conduct and giving low priority to psychosocial issues like communication. CONCLUSION: Lack of the ability to communicate puts patients at greater risk of receiving poorer treatment, which supports the pressuring need to implement and use AAC in critical care. It is documented that culture in biomedical paradigms can have consequences that are the opposite of the staffs' ideals. The findings may guide staff in implementing AAC strategies in their communication with patients and at the same time preserve their caring ontology and professional pride. RELEVANCE TO CLINICAL PRACTICE: Improving communication strategies may improve patient safety and make a difference in patient outcomes. Increased knowledge of and familiarity with AAC strategies may provide healthcare professionals with an enhanced feeling of competence.

Reflections on patient involvement in research and clinical practice: A secondary analysis of women's perceptions and experiences of egg aspiration in fertility treatment.

The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During the analysis, it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals.

Revisiting Symbolic Interactionism as a Theoretical Framework Beyond the Grounded Theory Tradition.

The tight bond between grounded theory (GT) and symbolic interactionism (SI) is well known within the qualitative health research field. We aimed to disentangle this connection through critical reflection on the conditions under which it might add value as an underpinning to studies outside the GT tradition. Drawing on an examination of the central tenets of SI, we illustrate with a field study using interpretive description as methodology how SI can be applied as a theoretical lens through which layers of socially constructed meaning can help surface the subjective world of patients. We demonstrate how SI can function as a powerful framework for human health behavior research through its capacity to orient questions, inform design options, and refine analytic directions. We conclude that using SI as a lens can serve as a translation mechanism in our quest to interpret the subjective world underlying patients' health and illness behavior.

Perspectives of Young People with Neuromuscular Diseases Regarding Their Choice of Educational Programs and Possibilities to Complete Program Requirements.

Young people with impaired functioning and/or disability do not receive as much education or as high an education as fully functioning young people, thus limiting their job opportunities. Therefore, the aim of this study was to investigate perspectives of young people with neuromuscular diseases regarding their choice of educational programs and possibilities to complete program requirements to gain knowledge for use in future counselling and the development of a national questionnaire survey. The design for this study was qualitative using the interpretive description methodology and Anthony Giddens' theory on modernity and self-identity. Data were generated through two focus group interviews with seven people between 18 and 30 years of age. Beginning and completing an education was influenced by the creation of identity: the importance of experiencing demands and expectations, the meaning of social relations when learning, and the consequences of accessibility for educational opportunities. The participants' sense of self-identity was built by testing boundaries and developing images through social relations with peers, parents, and teachers. How they acted and behaved in the social arena of school and education influenced their choices and chances of completing educational programs.

Living with adult-onset myotonic dystrophy type 1: a scoping review.

PURPOSE: To identify the existing literature on experiences of living with adult-onset myotonic dystrophy type 1 (DM1) from people with adult-onset DM1, their caregivers and health care professionals. MATERIALS AND METHODS: Following the framework of Arksey and O'Malley, a literature search was performed in five databases in October-November 2022. An updated search was conducted in December 2023. Studies were eligible if they reported on experiences related to living with DM1 from people with adult-onset DM1, caregivers or healthcare professionals. Qualitative, quantitative, and mixed method studies were included. Key findings were categorized using the International Classification of Functioning, Disability and Health (ICF) components. RESULTS: 11 out of 1842 studies were included, of which five had a quantitative design, five had a qualitative design and one study had a mixed methods design. The studies reported on multiple experiences of living with adult-onset DM1 from the perspectives of people with the disease and their caregivers. All components of the ICF were reported in the studies; activity and participation and personal factors were the most reported. CONCLUSION: Adult-onset DM1 is a complex disease with great biopsychosocial impact making it challenging to live with for those diagnosed with DM1 as well as their caregivers.

Issues with hands or arms, myotonia, fatigue, impaired sleep or daytime sleepiness, and symptoms of depression in everyday life should be addressed in the follow-up of people with adult-onset myotonic dystrophy type 1 (DM1) to facilitate increased participation in daily life.Challenges related to activity and participation should be addressed in the follow-up of people with adult-onset DM1 to help facilitate increased activity and participation in everyday life.Interventions targeting caregiver needs are necessary to help them cope with living with a person with adult-onset DM1 and to minimize the negative impact DM1 has on their lives.

Experiences of an Online Palliative Rehabilitation Programme for Spousal Caregivers of People With Amyotrophic Lateral Sclerosis and Cognitive and/or Behavioural Impairments: A Qualitative Interpretive Study.

Purpose: The purpose of this study was to understand how spousal caregivers of people with amyotrophic lateral sclerosis and cognitive and/or behavioural impairments felt about the EMBRACE intervention. Materials and methods: A qualitative interpretive study, using individual semi-structured interviews pre- and post-participation in a palliative rehabilitation blended learning programme, was applied. In total, 13 spousal caregivers were interviewed pre-intervention and 10 of them post-intervention. Results: Three overarching themes were identified: Striving to Obtain Control in Everyday Life, Peer support Across the Illness Trajectory and The Complexity of Relations. Information provided in targeted videos and sharing experiences with peers in virtual group meetings were beneficial to comprehend, manage and find meaning in everyday challenges related to being a caregiver. Conclusion: The EMBRACE intervention helped spousal caregivers cope with everyday needs and challenges related to being a caregiver. EMBRACE was found to support and strengthen the participants in gaining more control in everyday life, creating a sense of coherence. Through targeted videos and discussions with peers, the participants felt prepared for the illness trajectory of their relative. Peer support promoted resilient functioning and reduced their feelings of loneliness. Clinical trial registration: This study was registered on clinicaltrials.gov under the name: A Complex Intervention Study on a Palliative Rehabilitation Blended Learning Programme to Support Relatives and Health Care Providers of People with ALS and Cognitive Impairments in Coping with Challenges. ID no. NCT04638608. URL: https://clinicaltrials.gov/ct2/results?cond=&term=NCT04638608&cntry=&state=&city=&dist=.

Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury.

PURPOSE: To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. MATERIALS AND METHODS: Qualitative study using the Interpretive Description methodology with Aaron Antonovsky's theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. RESULTS: Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities' administration of the service. Participants explained this by an experience of a sense of coherence. CONCLUSION: For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one's life by enhancing one's sense of coherence.

Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness.Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations.To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them.

Opting out of cardiac rehabilitation in local community healthcare services: Patients' perspectives and reflections.

RATIONALE: Despite cardiac rehabilitation and medical treatment being integrated parts of the pathway of patients with cardiovascular disease, as well as the well-establish positive effect, cardiac rehabilitation remains underutilised. In recent years, cardiac rehabilitation has increasingly been moved from the hospitals to the community healthcare services. This transition may be challenging for patients with cardiovascular disease. AIM: To investigate reflections and perspectives of patients opting out of cardiac rehabilitation in community healthcare services to improve participation and adherence to cardiac rehabilitation in the future. RESULTS: A total of eight patients opting out of cardiac rehabilitation participated in individual interviews. Opting out of cardiac rehabilitation is defined as never enroled or did not complete cardiac rehabilitation. The Interpretive Description methodology was used in the analysis where two themes and six subthemes were identified: (1) 'Structural and organisational factors' with three subthemes; Being a patient in the healthcare system, Enroling into CR when it is meaningful, and Getting back to work is vital, and (2) 'Patients' internal factors' with three subthemes; Feeling a desire to regain control, Seeing yourself as recovered, and Being aware of own needs. The analysis indicates that patients' decision to opt out of CR was multidimensional and based on a combination of factors. CONCLUSION: Ensuring that the healthcare professionals in the community have sufficient information regarding the patient and a clear communication plan between the healthcare professionals and the patient may reduce the transition causing confusion and frustrations for patients. Incorporating a vocational element in CR and ensuring that employers understand the importance of CR may hamper returning to work as a challenge to CR. Ensuring timely CR referral and enrolment and a transition coordinator may reduce the challenge of patients not viewing CR as meaningful. However, further studies are needed to fully understand how CR could become meaningful for patients opting out of CR.