"It doesn't get more normal than that!" - challenges with sexuality experienced by people with neuromuscular diseases and their needs for rehabilitation knowledge and guidance on sexual life.

Purpose: To investigate challenges with sexuality experienced by people with neuromuscular diseases and their needs for knowledge and guidance on sexual life to target future rehabilitation services.

Materials And Methods: 11 semi-structured individual interviews with 10 women and one man with neuromuscular diseases. The methodology was Interpretive Description, using the Crip Theory as the theoretical lens to guide the analysis.

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.

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.

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.

Challenges Faced by Women With Neuromuscular Diseases When Having to Urinate Away From Home.

The aim of this study was to investigate the challenges women with neuromuscular disease face when having to urinate when away from home. The design for this study was qualitative using the interpretive description methodology and the Sense of Coherence theory. The method was three semi-structured focus group interviews with 12 women (3 ambulant and 9 non-ambulant) with neuromuscular diseases at a specialized rehabilitation hospital.

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 ( and focus group interviews (.

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.

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.

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.

Understanding Facilitators and Challenges to Care Transition in Cardiac Rehabilitation: Perspectives and Assumptions of Healthcare Professionals.

Cardiac rehabilitation is an essential part of treatment for patients with cardiovascular disease. Cardiac rehabilitation is increasingly organized outside hospital in community healthcare services. However, this transition may be challenging.

People with neuromuscular diseases and their relatives' perspectives on challenges in everyday life and healthcare.

People with a neuromuscular disease (NMD) often experience challenges in everyday life and healthcare. To investigate experiences of and perspectives on challenges in everyday life and healthcare of people with NMDs and their relatives to gain new insights into how life-long rehabilitation can be tailored. The design was qualitative using the interpretive description methodology and the Sense of Coherence theory.

Subtypes of complex regional pain syndrome-a systematic review of the literature.

To systematically identify and summarize possible subtypes of complex regional pain syndrome (CRPS), we searched MEDLINE, Embase, Cochrane, Scopus, and Web of Science for original studies reporting or investigating at least one subtype within a group of patients with CRPS. The search retrieved 4239 potentially relevant references. Twenty-five studies met our inclusion criteria and were included in the analysis.

Cross-sectoral collaboration among hospital professionals on rehabilitation for patients with neuromuscular diseases.

Living with a neuromuscular disease often leads to a need for specialized rehabilitation due to the complexity and progression of the diseases. To investigate cross-sectoral collaboration on rehabilitation for patients with neuromuscular diseases among hospital professionals to inform future targeted rehabilitation services. The design was qualitative using the interpretive description methodology and the theoretical lens of symbolic interactionism.

Perceived benefits from peer-support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme.

Rationale: Family caregivers of persons with amyotrophic lateral sclerosis and cognitive and/or behavioural impairments (PALS/CIs) experience various challenges and needs, including emotional and practical support from peers. Various forms of peer-support have shown different strengths and weaknesses; however, little is known about how family caregivers of PALS/CIs interact with and perceive virtual face-to-face peer-support.

Aims And Objectives: The aim of this study was to understand how caregivers of PALS/CIs interact with and perceive virtual face-to-face peer-support in a palliative rehabilitation programme designed to promote targeted palliative rehabilitation initiatives for caregivers of PALS/CIs.

Global series: Complex regional pain syndrome: abstracts from the International Association for the Study of Pain complex regional pain syndrome SIG virtual symposia 2021.

The aim of this IASP complex regional pain syndrome (CRPS) SIG Global Series 2021 was to bring together clinicians including those from developing countries to better understand the clinical presentation of complex regional pain syndrome in countries with less well-published patient populations. The purpose was to learn from each other about the range of treatments, successful outcomes, and challenges experienced. These meeting proceedings comprise abstracts from nine countries that span 4 continents and are summaries of online presentations delivered by speakers representing these countries over the course of 2 symposia.

Healthcare Professionals' Experiences and Perspectives of Facilitating Self-Management Support for Patients with Low-Risk Localized Prostate Cancer via mHealth and Health Coaching.

Self-monitoring of self-management interventions with the use of mobile health (mHealth) can enhance patients' well-being. Research indicates that mHealth and health coaching act symbiotically to providing a more constructive outcome. Nurse coaches seem to have a significant role in translating the patients' tracked data.

'It becomes the new everyday life' - experiences of chronic pain in everyday life of people with limb-girdle muscular dystrophy.

Purpose: To investigate experiences and reflections on challenges in everyday life of people living with limb-girdle muscular dystrophy (LGMD) and chronic pain in order to improve rehabilitation services.

Materials And Methods: The design for this study was qualitative using the Interpretive Description methodology and the salutogenic theory of Sense of Coherence as the theoretical framework. Four semi-structured focus group interviews were conducted with 19 adults with LGMD from April to May 2021.

Goal-Setting in clinical practice: a study of health-care professionals' perspectives in outpatient multidisciplinary rehabilitation of patients with spinal cord injury.

Purpose: Spinal cord injury is a complex condition requiring long-term rehabilitation. Goal-setting is considered an essential part of rehabilitation, however, knowledge of how goal-setting is practised across health-care professions, settings and diagnoses are scarce. The purpose of the study was therefore to explore health-care professionals' perspectives on goal-setting practice in outpatient multidisciplinary rehabilitation targeting patients with spinal cord injury.

The ambiguity of goal-setting: a study of patients' perspectives on goal-setting in outpatient multidisciplinary rehabilitation of patients with spinal cord injury.

Purpose: Spinal cord injury (SCI) is a complex health condition requiring long-term rehabilitation. Person-centred goal-setting is a central component of rehabilitation. However, knowledge of patients' perspectives on the goal-setting in SCI rehabilitation is scarce.

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.

Reflections on the Complexity of Normalcy in Nursing and Health Care.

Striving for normalcy plays an important role in patients' quality of life and illness experience. Normalcy is a powerful and complex idea, and the term can be used intentionally or unintentionally to various effects. We aimed to raise awareness of the complexity of this idea of normalcy and thus promote a more critically reflective understanding among nurses and other health professionals.

An Intervention Offering Self-management Support Through mHealth and Health Coaching to Patients With Prostate Cancer: Interpretive Description of Patients' Experiences and Perspectives.

Background: Observational management strategies such as active surveillance and watchful waiting are considered to be acceptable approaches in patients with low-risk localized prostate cancer and a safe alternative to aggressive treatment. During observational management, treatment is postponed until the disease progresses, which often never occurs. However, approximately 90% of patients with a low-risk disease choose aggressive treatment owing to anxiety.

A retrospective study of needs and interventions among patients with myotonic dystrophy type 1 in Denmark referred to rehabilitation in the period 2000-2019.

Unlabelled: RATIONALE, AIMS AND OBJECTIVES: Myotonic dystrophy type 1 (DM1) is a progressive multisystem disorder that requires a special focus on the delivery of health and rehabilitation. The aim of the study was to identify the needs and interventions in patients with DM1 referred to a national rehabilitation hospital and to illustrate the needs and interventions in relation to predefined subgroups of disease classification.

Method: Electronic medical records from the period 2000-2019 of a randomized sample of patients with DM1 (N = 193) were reviewed to identify rehabilitation needs and interventions.

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.