Perspectives on Everyday Life Challenges of Danish Young People With Duchenne Muscular Dystrophy (DMD) on Corticosteroids.

This study aimed to investigate perspectives on everyday life challenges of young persons with Duchenne muscular dystrophy in Denmark treated with corticosteroids perceived by young persons and their parents to improve rehabilitation interventions. Nineteen semi-structured interviews were conducted: 10 individual interviews with 10 persons with DMD and six individual interviews with parents (five mothers and one father) and three couple interviews (three mothers and three fathers). The analysis was guided by interpretive description methodology and Antonovsky's Sense of Coherence theory.

Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study.

Aims And Objectives: To explore reflections of family caregivers and health professionals regarding the challenges involved in caring for persons with amyotrophic lateral sclerosis and cognitive and/or behavioral impairments (PALS/CIs).

Background: Family caregivers of PALS/CIs are highly burdened and at great risk of psychological sequela. Professionals working with these families can be negatively affected on their well-being and are at risk of burnout.

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

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. 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.

Prevalence of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy: a cross-sectional study.

Purpose: The aim was to investigate the prevalence, characteristics, predictors, and consequences of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy (LGMD).

Materials And Methods: Questionnaires were sent to all Danish LGMD patients (≥18 years of age) registered with the National Rehabilitation Center for Neuromuscular Diseases.

Results: Of 209 patients, 121 responded.

Ageing with neuromuscular disease: Implications for a lifeworld-led care through a humanising approach.

Objectives: To understand the care and support needs in ageing with neuromuscular disease from a patient-user perspective.

Background: The term neuromuscular disease covers several chronic hereditary or acquired disease subtypes. In the developed countries, advances in symptoms management, technical advancements and rehabilitation initiatives have resulted in increased life expectancy for some subtypes.

Investigating job satisfaction in palliative rehabilitation: Reflections and perspectives of health professionals working with amyotrophic lateral sclerosis.

Study Rationale: Amyotrophic lateral sclerosis is a progressive neurodegenerative disease which causes impairment of the motor functions in the upper and lower limbs and bulbar muscles with a median survival time is three years from the first appearance of symptoms. There is massive psychological impact on health professionals to persons with amyotrophic lateral sclerosis, hence the work leads to multiple challenges and stressful and demanding situations with high risk of experiencing diminished personal well-being including burnout, moral distress, and compassion fatigue.

Aim: To investigate reflections and perspectives from health professionals working within palliative rehabilitation for elements of importance in relation to job satisfaction.

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 (VO ), leg extensor power, lean body mass, measured pre-NMA-HSCT at 3-, 6- and 12-month follow-up.

Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)-Patient reported outcomes from a national survey.

The purpose was to investigate the impact of the COVID-19 pandemic on biopsychosocial health, daily activities, and quality of life among children and adults with neuromuscular diseases, and to assess the prevalence of COVID-19 infection and the impact of this in patients with neuromuscular diseases. The study was a national questionnaire survey. Responses were obtained from 811 adults (29%) and 67 parents of children (27%) with neuromuscular diseases.

Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences.

Aim: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD).

Design: A qualitative study using a phenomenological-hermeneutic approach.

Methods: Data were gathered through interviews with 15 persons living with NMD in 2018.

Ageing with neuromuscular disease: getting lost in transitions.

Purpose: To explore the lived experiences of people ageing with neuromuscular disease (NMD).

Introduction: NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advances in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life continuing into adulthood and even old age; however, knowledge of people's lived experiences with NMD is sparse.

Combining mHealth and health-coaching for improving self-management in chronic care. A scoping review.

Background: Self-management approaches are widely used to improve chronic care. In this context, health care professionals call for efficient tools to engage patients in managing their illness. Mobile health (mHealth), defined by WHO as medical and public health practice supported by mobile devices, is demonstrated to enhance self-management and health-coaching as an engaging tool in supporting behaviour change.

Why cancer survivorship care needs assessment may lead to no clear patient pathway - Based on patients' experiences and perspectives.

Purpose: The purpose of this study was to identify possible barriers and facilitators in needs assessment within cancer survivorship care and rehabilitation based on patients' experiences and perspectives.

Methods: The design was qualitative and guided by Interpretive Description methodology and Symbolic Interactionism as the theoretical framework. In all, 35 patients with haematological cancers were included, from hospital and primary care settings.

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.

"I was worried about not being good enough". Experiences and perspectives on pregnancy, childbirth and parenthood when living with a neuromuscular disorder - an exploration of everyday life challenges.

Purpose: The aim of this study was to explore the everyday life experiences and perspectives on challenges related to pregnancy, childbirth and parenthood when living with neuromuscular disorders (NMDs) and identify important elements to take into consideration for parents and their health professionals.

Materials And Methods: In all, 27 people (17 with a NMD and 10 partners without a NMD) were included in this study. The participants were all parents or expecting parents.

Implementation of a multidisciplinary rehabilitation program for patients with chronic low back pain-experiences and perspectives of rehabilitation team members.

Study Rationale: Low back pain is a common condition and one of the leading reasons for years of chronic disability. Rehabilitation has been shown to be effective on low back pain, because it is based on the complex and multifactorial mechanisms that low back pain entails.

Aim: The aim of this study was to describe and interpret rehabilitation team members' experiences and perspectives regarding an integrated rehabilitation program for patients with chronic low back pain.

'Well, if I don't show up and go through with the fertility treatment, I won't have a baby'; Patient involvement in clinical practice: Option or condition?

Rationale, Aims, And Objectives: Worldwide, the concept of patient involvement has a growing impact on health care. Involvement in care represents a benefit to many patients, but while being involved is inevitable for the patient, we assume that getting involved is not in all cases obtainable. On this background, we aimed to investigate patients' perceptions and experiences concerning their treatment and care in a clinical fertility treatment setting, and discuss how these may influence their possibilities for involvement in care.

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.

"Keep it simple": Perspectives of patients with low back pain on how to qualify a patient-centred consultation using patient-reported outcomes.

Background: Patient-reported outcomes are expected to play an important role in patient-centred health care. To capture patients' perspectives, patient involvement in the development of patient-reported outcome (PRO) instruments is essential, but often lacking. This qualitative study explored the perspectives of patients with low back pain, to gain an understanding of how to qualify a patient-centred consultation by using PROs.

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.

A Cross-Sectional Study Evaluating Potential Differences in the Need for Cancer Survivorship Care in Relation to Patients' Socioeconomic Status.

Background: There seems to be inequity within cancer survivorship care in primary care settings related to gender, shorter education, and early poor health, but there is uncertainty regarding the character of the needs in hospital and in primary care settings and whether there is inequity regarding meeting these needs. This study aims to describe potential differences in needs among patients in hospital and in primary care settings, and to assess the need for survivorship care and rehabilitation in patients with cancer in relation to socioeconomic status.

Methods: In a cross-sectional study including patients in hospital (n = 89) and primary care settings (n = 99), information from needs assessments was linked with population-based data on socioeconomic status via unique personal identification numbers.

Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved.

Background And Aims: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.