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.
BACKGROUND: Little is known about the challenges faced by women with a neuromuscular disease (NMD) when having to go to the toilet in other places than home; a topic that is highly important for participation and bladder health. OBJECTIVE: The aim was to investigate whether women with NMD have problems in going to the toilet when not at home, the problems' impact on their social activities, education, and working life, which strategies they use to manage the problems, and the prevalence of lower urinary tract symptoms (LUTS). METHODS: A national survey containing questions on type of NMD, mobility, impacts on social activities, education, working life, and bladder health was developed by women with NMD and researchers. LUTS were assessed by the International Consultation on Incontinence Questionnaire Female Lower Urinary Tract Symptoms Modules (ICIQ-FLUTS). Female patients≥12 years (nâ=â1617) registered at the Danish National Rehabilitation Centre for Neuromuscular Diseases were invited. RESULTS: 692 women (43% ) accepted the invitation; 21% were non-ambulant. 25% of respondents avoided going to the toilet when not at home. One third of respondents experienced that problems in going to the toilet impacted their social life. 43% of respondents refrained from drinking to avoid voiding when not at home, 61% had a low frequency of urinating, 17% had experienced urinary tract infections, and 35% had experienced urine incontinence. Problems were seldom discussed with professionals, only 5% of participants had been referred to neuro-urological evaluation. CONCLUSION: The results highlight the difficulties in urinating faced by women with NMD when not at home and how these difficulties impact functioning, participation, and bladder health. The study illustrates a lack of awareness of the problems in the neuro-urological clinic. It is necessary to address this in clinical practice to provide supportive treatment and solutions that will enable participation for women with NMD.â¥\keywords \KWDtitle KeywordsNeuromuscular diseases\sep women's health\sep toilet facilities\sep urinary tract infection\sep participation\sep rehabilitation \end contstartabstract.
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.
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.
Decision Making , Early Detection of Cancer , Nurse's Role , Qualitative Research , Uterine Cervical Neoplasms , Humans , Female , Uterine Cervical Neoplasms/diagnosis , Adult , Early Detection of Cancer/psychology , Middle Aged , Denmark , Nurse's Role/psychology , Mass Screening/methods
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=.
Objective: People with a neuromuscular disease (NMD) often experience challenges in everyday life and healthcare. Aim: 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. Patients & methods: The design was qualitative using the interpretive description methodology and the Sense of Coherence theory. An ethnographic fieldwork was conducted where 45 persons with NMD and their relatives were included for interviews and participant observations. Results & conclusion: People with NMDs continually adapt to a changing functioning and balance their need for knowledge with their dependency on help when navigating the healthcare system. Structured, professionally facilitated peer support is needed.
What is this article about? The term neuromuscular disease (NMD) covers a range of diagnosis that affect the nervous system and result in muscle weakness and wasting, respiratory challenges, and other symptoms. The symptoms from the disease depend on the specific NMD diagnosis and can vary from mild to severe symptoms. The diseases can have a relatively stable course or rapid advancement as in amyotrophic lateral sclerosis (ALS), which has an average survival time of 3 years. Therefore, the aim of the study was 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. What were the results? We found that people with NMDs must constantly adapt and adjust to changes in functioning, balancing information and knowledge needs with dependency when navigating the healthcare system. What do the results of the study mean? Health professionals should acknowledge the expertise of the individual person with a NMD and their relatives and collaborate with them on setting shared goals for the rehabilitation process. Moreover, structured, professionally facilitated peer support is needed that includes counseling and support when sharing worries and concerns about an unpredictable future. Finally, help and support should be offered regarding navigating the social and healthcare systems.
Delivery of Health Care , Neuromuscular Diseases , Humans
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. The aim of this study was to examine assumptions and perspectives among healthcare professionals on how facilitators and challenges influence the transition from hospital to community healthcare services for patients in cardiac rehabilitation. The study followed the Interpretive Description methodology and data consisted of participant observations and focus group interviews. The analysis showed that despite structured guidelines aimed to support the collaboration, improvements could be made. Facilitators and challenges could occur in the collaboration between the healthcare professionals, in the collaboration with the patient, or because of the new reality for patients when diagnosed with cardiovascular disease.
PURPOSE: To evaluate the feasibility of the multimodal interdisciplinary rehabilitation programme HAPPY, targeting patients with haematological malignancy and undergoing allogeneic non-myeloablative haematopoietic stem cell transplantation (NMA-HSCT). METHOD: A single arm longitudinal design was applied to test the feasibility of the 6-month HAPPY programme, which consisted of motivational interviewing dialogues, individual supervised physical exercise training, relaxation exercises, nutritional counselling, and home assignments. The feasibility measures included acceptability, fidelity, exposure, practicability, and safety. Descriptive statistics were conducted. RESULTS: From November 2018 to January 2020, thirty patients (mean age (SD) 64.1 (6.5)) were enrolled in HAPPY, of whom 18 patients completed the programme. Acceptance was 88%; attrition 40%; fidelity was 80%-100% for all HAPPY elements except phone calls; exposure of HAPPY elements at the hospital reflected individual differences but was acceptable, whereas exposure of HAPPY elements at home was low. Planning of HAPPY for the individual patient was time consuming, and patients were dependent of reminders and incites from the health care professionals. CONCLUSION: Most elements of the rehabilitation programme HAPPY were feasible. Yet, HAPPY will benefit from further development and simplifications before an effectiveness study can be conducted, especially regarding improvement of the intervention elements supporting patients at home.
Hematologic Neoplasms , Hematopoietic Stem Cell Transplantation , Humans , Feasibility Studies , Exercise Therapy , Exercise , Hematologic Neoplasms/therapy
Introduction: Living with a neuromuscular disease often leads to a need for specialized rehabilitation due to the complexity and progression of the diseases. Aim: To investigate cross-sectoral collaboration on rehabilitation for patients with neuromuscular diseases among hospital professionals to inform future targeted rehabilitation services. Patients & methods: The design was qualitative using the interpretive description methodology and the theoretical lens of symbolic interactionism. Ethnographic fieldwork was conducted, and 50 hospital professionals included, 19 of whom were interviewed. Results & conclusion: The results emphasize the importance of relations when collaborating across sectors. The professionals acted and made choices in relation to dilemmas and influences of diagnosis and progression, professional demarcations in multiprofessional teams, and cross-sectoral collaboration toward a mutual goal.
What is this article about? The term neuromuscular disease covers several chronic hereditary subtypes including amyotrophic lateral sclerosis. Neuromuscular diseases affect the neuromuscular system and cause symptoms like muscle weakness, dysphagia and respiratory problems. By contrast, amyotrophic lateral sclerosis, a neurodegenerative rapidly progressive disease, in most patients entails impaired mobility, speech and breathing, and a shortening of their lifespans, with the median survival time being 3 years. This calls for rehabilitation services to support patients with neuromuscular diseases in preserving their functioning level for a longer time, and postponing decreased functioning, hospital admissions and dependency on help. Therefore, this study investigated cross-sectoral collaboration on rehabilitation for patients with neuromuscular diseases among hospital professionals to inform the counseling and guidance of future targeted rehabilitation services. The results from this qualitative study are based on an ethnographic fieldwork generating interview and observation data from 50 hospital professionals. What were the results? The results illustrate how the hospital professionals acted and made choices based on meaning: dilemmas and influence of diagnosis and progression, professional demarcations in multiprofessional teams and cross-sectoral collaboration toward a mutual goal. What do the results of the study mean? The results emphasize the importance of relations between hospital professionals when collaborating across sectors in the complex field of neuromuscular diseases. The professionals were challenged by diagnosis and disease progression when prioritizing rehabilitation initiatives. There is a need for all professions to contribute to the collaboration toward a shared goal.
Hospitals , Neuromuscular Diseases , Humans
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. METHOD: A qualitative design using participant observations of 17 recorded virtual group-facilitated meetings from two rounds of a 4-month intervention was performed. The Medical Research Council framework, the inductive interpretive description methodology and the theoretical framework of Sense of Coherence guided the study. Nineteen participants, divided into four groups, were included. RESULTS: Three themes emerged: 'Relating my situation to others', 'Making room for forbidden thoughts' and 'Longing for normalcy'. The themes reflected the various ways participants interacted in online group meetings and how the interactions evolved around practical, emotional and forbidden thoughts. Sharing personal and sorrowful concerns and frustrations engendered feelings of trust and a sense of belonging, which empowered the participants to address their genuine wish and longing for normalcy with all the trivialities of which ALS/CIs had robbed them. CONCLUSION: Virtual face-to-face peer-support can enable caregivers of PALS/CIs to share experiences of everyday life challenges that cannot always be shared elsewhere. Being able to relate to and learn from other's experiences alleviated feelings of loneliness, frustration, and concerns and thereby enhanced comprehensibility, manageability and meaningfulness. Online palliative rehabilitation interventions should provide an opportunity for caregivers to meet regularly in interactive group meetings. Familiarization takes time online and is necessary to improve their sense of feeling safe to share their deepest thoughts. Such group interventions, facilitated by trained healthcare professionals, offer a means to support dynamic group interactions and discussion of sensitive topics.
Amyotrophic Lateral Sclerosis , Cognitive Dysfunction , Education, Distance , Humans , Amyotrophic Lateral Sclerosis/psychology , Caregivers/psychology , Counseling , Qualitative Research , Family/psychology
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. The sample was classified into four subgroups of disease classifications. The number of identified needs and interventions were presented as medians and range, and differences between subgroups were illustrated by Kruskal-Wallis one-way analysis of variance. The needs were categorized using the International Classification of Functioning, Disability and Health (ICF). RESULTS: A total of 2099 needs and 2103 interventions were registered. The most frequent needs were coordination of healthcare services (480) and employment and income (363), while the most frequent interventions were counselling (835) and follow-up (386). Patients with congenital DM1 had the most needs and interventions per person. In relation to the ICF, the most registered needs were environmental factors (880) and activity and participation (848). CONCLUSION: All subgroups of patients with DM1 had a substantial number of needs and interventions related to coordinating and navigating within the healthcare system. The subgroup of patients with congenital DM1 had the most needs and interventions compared to the other subgroups.
Myotonic Dystrophy , Humans , Denmark , Myotonic Dystrophy/rehabilitation , Patients , Research Design , Retrospective Studies , Delivery of Health Care
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.
Motivation , Neuromuscular Diseases , Child , Humans , Parents , Hope , Health Personnel , Neuromuscular Diseases/therapy
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. By raising questions about how we use normalcy in our discourses and the potential impact that our professionally socialized interpretations of what constitutes normal might have on patient experience, we can encourage nurses and other health professionals to develop an intellectual curiosity about how the idea of normalcy works, and to be more critically reflective about how they integrate normalcy language into their practices and patient-centered communications. By unpacking the ideas that normal is always a good thing in the context of patient experience, and that normalizing can neutralize that which is bad in the health care world, we can qualify the language used and the metamessages conveyed for the ultimate benefit of patients.
Delivery of Health Care , Quality of Life , Humans , Communication , Health Personnel
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. The interviews were conducted online due to COVID-19. RESULTS: Living with chronic pain and LGMD affected everyday life in terms of the participants' overall Sense of Coherence. Beneficial or unfavorable coping strategies were identified within four interrelated categorical themes: pain management, normality comprehension, affected emotional sentiment and altered identity. CONCLUSION: Healthcare professionals should acknowledge possible chronic pain secondary to LGMD. Chronic pain appears to be a prevalent problem in people with LGMD with negative impact on everyday life, yet patients with LGMD did not receive sufficient information and necessary tools from health professionals to cope with chronic pain. Thus, adequate pain management appeared to be a difficult and self-taught process. Educating health professionals on how to support patients with LGMD and chronic pain is needed.IMPLICATIONS FOR REHABILITATIONHealth professionals should acknowledge and address the possibility of chronic pain secondary to limb-girdle muscular dystrophy (LGMD) and educate patients in pain management.Physiotherapy, energy management and engagement in meaningful activities may help patients gain some control of pain and limit the consequences of pain on everyday life.Supporting patients to accept pain and to shift focus towards their current capabilities may potentially improve pain management.Educating health professionals on how to support patients with LGMD and chronic pain is needed.
Chronic Pain , Muscular Dystrophies, Limb-Girdle , Sense of Coherence , Adult , Humans , Muscular Dystrophies, Limb-Girdle/psychology , Adaptation, Psychological
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. The purpose was therefore to explore patients' perspectives on goal-setting in multidisciplinary SCI rehabilitation. MATERIALS AND METHODS: An anthropological study combining participant-observation and individual interviews. Data were analysed using reflexive thematic analysis. The COREQ checklist was used to report study quality. RESULTS: Patients with SCI perceived goal-setting as ambiguous. On the one hand, they considered it insignificant, because it was complicated to transform complex needs of everyday life to recommended criteria of goals being measurable, specific, and realistic. On the other hand, they considered it a potentially useful guiding tool. Patients were uncertain of impact of goals and perceived goal-setting as vague during rehabilitation. Patient involvement was challenged by insufficient integration of patients' experience-based knowledge of everyday life and clinicians' profession-based knowledge. CONCLUSIONS: Goal-setting in rehabilitation is not the patients' need but they accept it as the clinicians' framework for rehabilitation. For goal-setting to become meaningful to patients with SCI, patient involvement should be strengthened by equally integrating the patients' perspectives in the goal-setting process.Implications for rehabilitationHealth-care professionals have to strengthen patient involvement in SCI rehabilitation by to a greater extent integrating the patients' knowledge of their everyday life and preferences rather than primarily focusing on profession-based knowledge.Health-care professionals must support patients in setting goals which are practically meaningful and relevant to the patients' everyday life and achievably and if needed go beyond the structured measurement of SMART goals.In an acknowledgement of the dynamic nature of goal-setting, clinicians should emphasise formulating goals in a flexible and non-directive manner, thereby providing room for patients' changing needs and challenges over time.Goals in SCI rehabilitation cover a wide range from broad, value-based goals to more specific goals, and the health-care professionals must ensure inclusion of such a wide range of goals.
Goals , Spinal Cord Injuries , Humans , Outpatients , Motivation , Spinal Cord Injuries/rehabilitation , Health Personnel
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. MATERIALS AND METHODS: An anthropological study combining participant-observation and focus group interviews. Data were analysed using reflexive thematic analysis. COREQ checklist was used to report the study quality. RESULTS: Health-care professionals experienced a field of tension between internationally recommended goal-setting criteria, requiring goals to be specific, measurable, realistic and time-based, and a practice influenced by patients presenting complex needs. The challenges were managed using a negotiation strategy characterized by a tinkering approach to adjust notions of measurability, realism and time frame into practice. Also, health-care professionals were challenged in relation to practising a person-centred rehabilitation approach. CONCLUSIONS: We suggest rethinking the goal-setting process by allowing recommended goal-setting criteria to be adapted to a specific practice context while acknowledging goal-setting practice in its variety and flexibility as a strength. Furthermore, improved incorporation of patients' perspectives in the practice is needed. Implications for rehabilitationTo strengthen person-centred rehabilitation practice, clinicians should actively search for and engage patient-identified needs and preferences in shared goal-setting.Standard criteria of goal-setting should comply with the individual and specific participation in the everyday life of patients with SCI.SMART goals are not always the right way to formulate rehabilitation goals.A flexible and pragmatic approach is needed to reach a balance between the patients' complex needs and the recommendations for goals to be specific, measurable, realistic, and time-based.
Goals , Spinal Cord Injuries , Humans , Outpatients , Rehabilitation Centers , Spinal Cord Injuries/rehabilitation , Focus Groups
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.
Health Personnel , Neuromuscular Diseases , Cooperative Behavior , Humans , Policy , Public Health
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. Strategies to address anxiety are needed for optimal management of this population and to improve the quality of life of patients with low-risk localized prostate cancer. A review highlighted that mobile health (mHealth) in tandem with health coaching can support patients' self-management of health behaviors and improve well-being. OBJECTIVE: This study aims to explore patients' experiences with and perspectives on an intervention offering self-management support through the use of mHealth devices and health coaching to identify supportive features that enable patients to perform sustainable changes that improve well-being. METHODS: We used an interpretive description approach, combining semistructured interviews with 13 purposively selected patients with prostate cancer and participant observations of patient-coach interactions in coaching sessions. The interviews were transcribed and analyzed. The self-determination theory was used as a theoretical lens. Field notes and coaching notes from each session were used to orient data generation and confirm or challenge the analysis. RESULTS: Our analysis suggested that patients' self-awareness and psychological identity influenced their experiences with and perspectives on the self-management support offered by mHealth and health coaching in clinical practice. The patients' individual experiences and perspectives indicated that they placed themselves in a dynamic continuum of sustaining or repressing their identity, self-awareness, and individual qualities. Our analysis revealed 4 interacting themes, all related to the psychological identity of the patients. CONCLUSIONS: For the group of patients with prostate cancer to experience well-being, we found it important for them to sustain their self-image when offered a self-management intervention. Motivation and autonomy were important aspects for the individual patients to sustain their self-image throughout the intervention. In contrast, demotivation and a sense of paternalism could result in fostering an experience of having to repress self-awareness.
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 .
Amyotrophic Lateral Sclerosis , Neurodegenerative Diseases , Amyotrophic Lateral Sclerosis/psychology , Caregivers/psychology , Cognition , Cross-Sectional Studies , Humans , Retrospective Studies
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. The results indicated that persons with Duchenne muscular dystrophy existed in a flux between experiencing greater Sense of Coherence revolving around normality and less Sense of Coherence exposing their vulnerability which unfolded in four opposing themes: (1) bodily ability and disability, (2) content and anxious, (3) sociable and lonely, and (4) independent and dependent. Future rehabilitation should aim at supporting resistance resources promoting bodily ability, being content, sociable, and independent.
