Charlotte Handberg

Purpose: The aim of this study was to investigate interactions in the cancer trajectory of patients with colorectal cancer and their healthcare professionals, with a focus on needs assessment prior to cancer survivorship care. Methods: A qualitative ethnographic design guided by interpretive description was employed. Data were generated through 110 h of field observations at a surgical department and two semistructured focus group interviews with ten patients. Symbolic interactionism provided the theoretical lens. Data were analyzed inductively through coding, patterns, and thematic development. Results: The analysis generated three interrelated themes: Perceptions on cure over care highlighted that the healthcare system’s prioritization of biomedical outcomes often overshadowed emotional and psychosocial support. Perceptions of communication shaped by efficiency described the ways in which time constraints and fragmented care disrupted the relational continuity. Perceptions of limited emotional support illustrated the profound sense of abandonment that many patients experienced, particularly in the transition from active treatment to life after cancer. Conclusion: The study demonstrated that interactions around needs assessment are often shaped by structural and efficiency-driven priorities, leaving patients with limited emotional support. This highlights the critical need for further research aimed at embedding compassionate, patient-centered communication into needs assessment and survivorship care to ensure that patients’ psychosocial as well as biomedical needs are systematically addressed across the cancer trajectory. Implications for Cancer Survivors: A future holistic approach toward cancer survivorship care, where emotional and psychosocial well-being of cancer survivors is taken care of, to prevent feelings of abandonment and fear of recurrence.

Chronic illness negatively affects education due to school absence. Telepresence robots can be a valuable educational tool for reducing school absence among students with chronic illnesses. This study aimed to investigate the reflections of Scandinavian community care stakeholders on telepresence robots as a tool to reduce school absence for students with chronic illnesses in the education system. We conducted fifteen semi-structured interviews and four focus group interviews with 25 community care stakeholders. Our study used the interpretive description methodology and Edgar Schein’s organizational culture as the theoretical lens. The analysis identified three categorical themes and six subthemes: The action of integrating telepresence robots into the education system, the telepresence robots as a pathway to educational opportunities, and the adoption and management of telepresence robots. Our findings showed that stakeholders had to motivate and communicate the purpose of telepresence robots to reduce skepticism among multiple people in the school environment. Our study provides insights into the barriers and challenges to integrating and adopting telepresence robots in the Scandinavian education systems, as well as how stakeholders should communicate with and support the education system during their implementation.

Rationale: There are many types of neuromuscular diseases characterized by considerable variation in disease progression and functional abilities depending on the specific diagnosis, leading to an increased need for specialized rehabilitation across the lifespan. Objective: The objective of this study was to identify barriers to participate in specialized neuromuscular rehabilitation experienced by people with neuromuscular diseases to guide future targeted rehabilitation. Method: The design for this study was a qualitative interview study using the interpretive description methodology and Erving Goffman's frontstage—backstage theory founded in the theory symbolic interactionism as the theoretical lens. The present study adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. The setting for this study was the Danish National Rehabilitation Center for Neuromuscular Diseases. Twenty‐two persons with various types of neuromuscular diseases participated in interviews conducted online or by phone. Results: We found that people with neuromuscular diseases experience various barriers to participating in specialized rehabilitation. The barriers were represented by an everyday flux between seeking normalcy by opting out rehabilitation or acknowledging the need for rehabilitation. Conclusions: The participants opted out of rehabilitation partly out of fear of losing hope and control which they felt could be invoked by rehabilitation and partly because they were striving for normality. When planning future rehabilitation services, it is important to provide rehabilitation services in a safe environment for the participants where they can share thoughts and worries without feeling abnormal or fearing a loss of control.

Introduction: Myasthenia gravis (MG) is a rare, chronic autoimmune disease that causes various fluctuating symptoms. Healthcare professionals at neurological departments often focus on treating MG with the risk of overlooking other aspects of daily living. Rehabilitation seeks to enable people with disabilities to become as independent as possible in everyday activities. This study aims to explore how healthcare professionals at neurological departments perceive barriers and facilitators in care and rehabilitation of adults with MG in Denmark to target future rehabilitation initiatives. Methods/Materials: A qualitative design using individual interviews with healthcare professionals employed at neurological departments was performed. The qualitative interpretive description methodology aimed at informing clinical practice and the critical psychology framework by Klaus Holzkamp guided the study. Ten participants were included. Results: The results showed how “Supporting patient understanding and navigation through personalized care”, “Navigating responsibility and resources in clinical practice”, and “Organizational structures impacting on professional quality of care” were important areas for the healthcare professionals when considering barriers and facilitators to rehabilitation for their patients. The first two areas were the center of the participants’ clinical practice, and surrounding and impacting on this center was the participants’ perception of their ability to navigate responsibilities and resources in their clinical practice. The third area had significant impact on the quality of care, allocation of resources, and structural changes within the specialized healthcare services. Conclusion: Healthcare professionals at neurological departments experience multiple facilitators and barriers to the rehabilitation of adults with MG. Their agency potential is deeply rooted in the relational, organizational, and structural settings that they engage in. Their ability to support adults with MG in coping with their condition depends on expertise, flexibility, continuity, and interdisciplinary collaboration both in and outside their organization. It is pivotal that organizational structures support these conditions. If not, it may have negative consequences for the patients’ agency potential, rehabilitation, and health.

Aims and objectives: To investigate reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy (DMD) to target future rehabilitation. Background: Adults with DMD have a short life expectancy with a mean age of death at 26.8 years. Despite this, palliative rehabilitation is sparsely mentioned in standards of care. Relatives and healthcare professionals seem to find it difficult to talk about the future and future care with people living with a life-threatening disease. Design: The design of the study was qualitative using the Interpretive Description Methodology and the salutogenic theory of Sense of Coherence (SOC) as the theoretical framework. Methods: The method was individual semi-structured interviews with 13 adult men with DMD. The interviews were conducted from February to March 2025. Results: Navigating life with DMD was considered a condition of life, and being able to accept and adapt to uncertainties were effective coping mechanisms affecting the participants’ overall SOC. Furthermore, living with a life-threatening disease was managed by living one day at a time, finding solutions, taking life as it comes, and getting the best out of it. Also, having dreams like everybody else, despite the uncertain future, was important. Finally, talking about future care felt strange to the participants, but it was easier if someone dared to ask directly. Timing and addressing individual needs were essential. Conclusion: Adults living with DMD appreciated the opportunity to talk about their wishes and needs for the future. Healthcare professionals are recommended to initiate conversations about biopsychosocial and existential issues, and palliative rehabilitation is recommended throughout the DMD lifespan with attention to individual needs, timing, and state of the disease.

Purpose: To investigate how parents of children with SMA who are treated with disease modifying therapies cope with hopes and worries related to disease progression, and to investigate their needs for counseling and rehabilitation initiatives. Methods: The design of this study was qualitative using the Interpretive Description methodology and Joyce Travelbee's theory of interpersonal aspects. The method was semi-structured interviews conducted in Denmark at the homes of the parents or through the online platform Teams between February 29 and May 3, 2024. Findings: Seventy-five parents representing 41 children were invited. Twenty-six parents of 20 children participated in the study. Twenty-four parents were interviewed at home and two were interviewed online. The key element of the parents’ narratives was the reality of the diagnosis: the trajectory toward the diagnosis, getting the diagnosis, and the hope related to the effect af disease modifying therapies. At the same time, they experienced grief related to the uncertainty of the disease progression while hoping for normalcy in the future: a ‘normal’ child and a ‘normal’ life. Finally, they struggled with balancing professional counseling to maintain hope. Conclusions: The families need coordinated, multidisciplinary care and information on disease modifying therapies, including what they can actively do to increase the effectiveness of the treatment. Counseling should include facilitated peer-support and acknowledge differences in children in terms of development, how they respond to the disease modifying therapy, and its long-term effects. Health professionals must tailor their support to the families’ needs and sustain their hopes for the future.

To investigate experiences and perspectives of caregivers of people with adult-onset myotonic dystrophy type 1 (DM1) on living and coping with DM1 to inform future targeted rehabilitation services. Qualitative study using the Interpretive Description methodology and Herbert Blumer's Symbolic Interactionism as the theoretical lens. Data was generated through four focus group interviews and two individual interviews, with a total of 13 caregivers. The analysis identified three categorical themes and five subthemes on how caregivers understand living and coping with adult-onset DM1: 'Continuous reflections on everyday life as a caregiver', 'Being a part of the disease trajectory', and 'Changes in social relations when living with a person with DM1'. The findings provided insights into how caregivers found meaning in and handled everyday life, which might be influenced by social interactions when living with a person with adult-onset DM1. The progressive changes in functioning caused by DM1 led the caregivers to make constant adaptations to their everyday lives. The findings illustrate how caregivers can play an important role in their close ones' disease trajectory when addressing biopsychosocial needs that arise in everyday life.

Background: Adult‐onset myotonic dystrophy type 1 (DM1) is characterised by diagnostic delay due to milder symptomatology than the congenital and juvenile forms. The multiorgan symptoms in the multiorgan nature of DM1 have negative biopsychosocial consequences. The aim was to apply national health registers to provide updated knowledge on the use and costs of healthcare services and labour market affiliation of persons with adult‐onset DM1 in Denmark.Methods: Analyses were based on a population of 949 adult persons with DM1 and 9427 controls. Median age at diagnosis was 43 years. Each person with DM1 was matched with ten reference individuals from the general Danish population without DM1. Data were retrieved from several databases: Statistics Denmark, the Danish National Patient Register, Danish National Health Service Register, the Danish National Prescription Registry and the Income register and the DREAM database.Results: During the 20‐year following diagnosis, persons with DM1 had 2.5 times more inpatient contacts, 2 times more outpatient contacts and 29.1 times more hours of home care than their controls. Persons with DM1 had a lower educational level, a higher risk of early disability pension (HR: 11.6, CI: 9.92–13.6), 68.2 weeks more unemployment and 29.2 weeks more long‐term sick leave and EUR 11,700–23,500 a lower income per year of the study. For all results, the difference between persons with DM1 and their controls was more expressed in males.Conclusions: The course of disease in adult‐onset DM1—normally considered to be mild—has a significant impact on health and living conditions.

The aim was to examine disease-related challenges and rehabilitation needs among adults with Myasthenia Gravis (MG) to target future support initiatives. The study involved a cross-sectional questionnaire based on patient-reported outcomes within 11 domains/95 items, covering potential challenges and needs in living with MG. Data were compared against the subgroups gender, age, and years with MG. In total, 197 participants responded. The median number of challenges across all domains was 15 out of 95 with a higher prevalence in women than men and with no differences in relation to age or years with MG. The most prominent challenges were muscle strength, physical tiredness, and mental fatigue. The median number of total rehabilitation needs was three out of 95 with a higher prevalence in women than men, but with no differences between age and years with MG. The most prominent rehabilitation needs were physical tiredness, mental fatigue, and knowledge on existing interventions. Many participants reported unmet psychological needs, especially women, participants from 40 years of age, and participants who had lived with MG for more than five years. MG significantly impacts on everyday functioning and activities. Disease-related challenges and rehabilitations needs manifested differently across genders. A profound difference was found between the number of challenges and rehabilitation needs reported.