Motivation, Barriers, and Suggestions for Intradialytic Exercise-A Qualitative Study among Patients and Nurses.

Background: Intradialytic exercise is an effective intervention to reduce morbidity and mortality and increase quality of life among patients with chronic kidney disease undergoing dialysis. However, implementing and sustaining it in clinical practice has proved challenging. To identify how to best design an effective and sustainable intervention in clinical practice, we aimed to explore hemodialysis patients' and nurses' attitudes towards intradialytic exercise, including their motivation, anticipated barriers, and suggestions for the design of a proposed exercise program. Methods: Data were collected through qualitative semistructured interviews with patients and focus group interviews with nurses and analyzed inductively with content analysis. Results: Overall, patients' and nurses' attitudes towards intradialytic exercise were positive. Patients were motivated by their expectations about perceived benefits, such as improved quality of life and reduced musculoskeletal pain. Their main concern was triggering dialysis machine alarms and disturbing nurses. Nurses were more skeptical of intradialytic exercise and concerned about patient safety. Patients and nurses had several ideas on how to design a safe and motivating intradialytic exercise intervention. Conclusion: The analysis of patients' and nurses' experiences and attitudes generated recommendations for an intradialytic exercise program. Recommendations include individually tailored programs that are safe and that patients can do independently, continuous collaboration between patients, nurses, physicians, and physiotherapists, and educating nurses about the benefits and safety of intradialytic exercise.

Exploring the contextual transition from spinal cord injury rehabilitation to the home environment: a qualitative study.

STUDY DESIGN: Explorative qualitative study based on an interpretative phenomenological approach. OBJECTIVES: This study explored the possibility of transferring knowledge and skills from a spinal cord injury (SCI) unit to the home environment; the individual and structural factors that potentially influenced this transfer; and its compatibility with a meaningful everyday life. SETTING: Hospital-based rehabilitation unit and community in Denmark. METHODS: Fourteen individuals with SCI were selected with maximum variation according to age, sex, marital status, and level of injury. In-depth, semi-structured interviews were conducted in the participants' homes, 2-10 months after discharge from an SCI unit. Data analysis involved taking an interpretative phenomenological approach combined with a template analysis and applying the transfer of training theory to the discussion. RESULTS: Transitioning from the SCI unit to the home environment involved a multidimensional change of context in which most of the participants' previous life roles had changed. This overarching theme had a decisive influence on: balancing loss and acceptance, facing external structural barriers, and the strength of social relationships when the knowledge and skills acquired at the unit were applied in a meaningful everyday life. CONCLUSIONS: Transition from the SCI unit to the home environment is influenced by a multidimensional change of context that may restrict the use of acquired skills post-discharge, provide distant prospects for tertiary health promotion, and aggravate the experience of loss in people with SCI. Maintaining relationships is a strong mediator for transferring skills and re-establishing a meaningful everyday life.

Health promotion and cardiovascular risk reduction in people with spinal cord injury: physical activity, healthy diet and maintenance after discharge- protocol for a prospective national cohort study and a preintervention- postintervention study.

INTRODUCTION: Spinal cord injury (SCI) predisposes those who suffer from it to physical inactivity and weight gain; consequently, death due to cardiovascular diseases is more frequent among people with SCI than in the general population. The literature documents a consensus about an interdisciplinary multimodal approach for the prevention and treatment of cardiovascular risk factors including overweight and obesity in people with SCI, focusing on diet, physical activity (PA) and behavioural interventions. This study will investigate implementation of recommendations from a recent clinical practice guideline for identification and management of cardiometabolic risk after SCI through multimodal patient education in a subacute clinical setting. METHODS AND ANALYSIS: All patients who are aged 18 years or older with an SCI within the previous 12 months and admitted to highly specialised rehabilitation are included, regardless of SCI aetiology or neurological level. A primary study designed as a controlled, pragmatic, preintervention- postintervention study with 6-month follow-up evaluates the effect of the clinical intervention; a prospective national cohort study on body mass index (BMI) serves as a historical control. The intervention consists of a standardised approach to patient education about cardiovascular risk factors, PA and a healthy diet that begins at the outset of primary SCI rehabilitation and is integrated into existing settings and workflows. Outcome measures are collected at admission, discharge and 6 months after discharge and include peak oxygen uptake (VO2peak) (primary outcome), BMI, body composition, metabolic profile, neurological status, level of functioning, depression, quality of life, objective PA (accelerometry), self-reported PA, self-assessed PA ability, shared decision making, and dietary habits. Test-retest reliability of four VO2peak test protocols are investigated, as is test-retest reliability of a multisensor accelerometer in a rehabilitation setting. ETHICS AND DISSEMINATION: The project is approved by the Committees on Health Research Ethics in the Capital Region of Denmark on 10 July 2018 (Journal-nr.: H-18018325). The principal investigator obtains informed consent from all participants. The interventions in the project are closely related to existing rehabilitation care, and the risk of pain and discomfort is considered modest. Any unintended events related to the elements of the intervention are reported, according to existing regional procedures. Data are stored in a secure web-based database (Redcap). The primary study and prospective cohort study are registered at Clinicaltrials.gov. Positive and negative results will be submitted to relevant scientific journals related to SCI for publication. Important protocol modifications are reported to the Committees on Health Research Ethics in the Capital Region of Denmark. TRIAL REGISTRATION NUMBERS: NCT03689023 and NCT03369080.

Current trends in patient and public involvement in cancer research: A systematic review.

BACKGROUND: Patient and public involvement (PPI) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research. OBJECTIVE: To describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations. METHODS: A search was conducted on PubMed, CINAHL and PsycINFO for literature published from December 2006 to April 2017. Original research studies describing the involvement of cancer patients, stakeholders and carers as active partners at any stage of the research process were included. RESULTS: Twenty-seven studies were included, the majority reporting PPI at the early stages of research, that is, during the definition and prioritization of research topics and the development of recruitment strategies. Few studies reported PPI at later stages and across the research process. Challenges and recommendations were only briefly described, and critical reflection on the PPI process was lacking. CONCLUSION: PPI needs to be integrated more broadly in the cancer research process. The quality of reporting PPI should be strengthened through greater critical reflections including both positive and negative experiences of the PPI process. This will contribute to the further development of PPI and its potential in cancer research.