Mastering Together the Highs and Lows: Patients' and Caregivers' Perceptions of Self-Management in the Course of Liver Transplantation.

CONTEXT: Self-management in chronic illness involves complex medical, role-related, and emotional tasks. Still, while self-management support of patients and their families has become a cornerstone of chronic illness care, information is limited as to how liver transplant (LTx) patients and close caregivers perceive self-management before and after transplantation. OBJECTIVE: To explore self-management tasks in view of medical, role-related, and emotional tasks in LTx candidates and recipients and their respective close caregivers. DESIGN AND PARTICIPANTS: For this qualitative study, focus group interviews were conducted and analyzed using knowledge mapping according to the 3 above-noted self-management categories. German-speaking adults who were wait-listed for or had received LTx and who were being treated in University Hospital Zurich or who were close caregivers to such patients were eligible for participation. As patients' data were closely related to those of the caregivers, the 2 groups' data sets were merged during the final development of themes. RESULTS: Thirty participants comprised 7 focus groups. The main theme was "The current state of health determines the daily rhythm." The essence of how patients and caregivers described their self-management tasks is compiled in "Mastering together the highs and lows" which comprises 3 core themes: mastering medical management, managing roles together, and managing the highs and lows of emotion. CONCLUSION: Patients and close caregivers prioritized self-management tasks as follows: first medical, then role-related, and finally emotional management. Over the course of LTx, health-care professionals should acknowledge this ranking while providing individualized support to both patients and caregivers.

Assessment of inflammatory bowel disease patient's needs and problems from a nursing perspective.

BACKGROUND: In this study, we aimed at assessing Inflammatory Bowel Disease patients' needs and current nursing practice to investigate to what extent consensus statements (European Crohn's and Colitis Organization) on the nursing roles in caring for patients with IBD concur with local practice. METHODS: We used a mixed-method convergent design to combine quantitative data prospectively collected in the Swiss IBD cohort study and qualitative data from structured interviews with IBD healthcare experts. Symptoms, quality of life, and anxiety and depression scores were retrieved from physician charts and patient self-reported questionnaires. Descriptive analyses were performed based on quantitative and qualitative data. RESULTS: 230 patients of a single center were included, 60% of patients were males, and median age was 40 (range 18-85). The prevalence of abdominal pain was 42%. Self-reported data were obtained from 75 out of 230 patients. General health was perceived significantly lower compared with the general population (p < 0.001). Prevalence of tiredness was 73%; sleep problems, 78%; issues related to work, 20%; sexual constraints, 35%; diarrhea, 67%; being afraid of not finding a bathroom, 42%; depression, 11%; and anxiety symptoms, 23%. According to experts' interviews, the consensus statements are found mostly relevant with many recommendations that are not yet realized in clinical practice. CONCLUSION: Identified prevalence may help clinicians in detecting patients at risk and improve patient management.

[Development of an evidence-based self-management programme for patients in the first year after renal transplantation with a focus on prevention of weight gain, physical exercise and drug adherence]. / Entwicklung eines evidenzbasierten Selbstmanagementprogramms für Patient(inn)en im ersten Jahr nach Nierentransplantation mit Fokus auf die Prävention von Gewichtzunahme, Bewegung und Medikamentenadhärenz.

In the first year after kidney transplantation patients are challenged with incorporating new behaviour patterns into their daily lives. Due to the higher risk of cardiovascular disease amongst kidney transplant recipients, behaviours such as preventing undesired weight gain, exercising, avoiding smoking, and managing medications take on crucial importance. The aim of the project was to develop a programme based on prevailing evidence to promote self-management skills in this patient population. To this end a participatory action research approach was chosen. The programme was developed with inter-professional collaboration under the direction of an advanced practice nurse. As theoretical framework for the development of the intervention models of behaviour change and self-management were chosen. The content is based on current literature and includes the viewpoints of both patients and nursing experts. The programme consists of three elements: 1) Educational brochures developed through inter-professional collaboration and evaluated in a pilot survey. These brochures provide a framework for appointments with nursing professionals. 2) The appointments are a forum in which the patient can gain access to relevant information and can be supported in putting sustainable health-related behaviours into practice in daily life. 3) A peer programme that uses treatment plans to encourage patients deviating from preferred health-related behaviours to make changes in their behaviour. The programme evaluation started in May of 2012. Results of the pilot study are expected in 2014.

[In-patient education after renal transplantation]. / Patientenedukation während des stationären Aufenthalts nach Nierentransplantation.

Patients with end-stage renal disease who receive a kidney through transplantation enter a new phase in their illness trajectory. The question emerged which knowledge and skills are essential for a safe self-management immediately after the transplantation. The aim of this project was to develop an evidence-based in-patient education programme for renal transplant recipients. A participative action research approach was chosen. An interprofessional group, led by an advanced practice nurse, initiated the project. Based on a systematic literature review and on qualitative interviews with both patients and experts, an in-patient educational programme was developed and implemented. The main elements of the programme focused on taking medications appropriately and on the observation and interpretation of symptoms. The content of the programme was documented in a brochure for patients. The structure of the programme was documented in a guideline with a standardised procedure. The procedure was based on patients' needs and preferences, and therefore provides tailored education. Besides the support received in gaining relevant knowledge, patients are supported in developing practical skills, problem solving, and decision making. An initial evaluation revealed that patients with cognitive impairment have special needs for education that exceeds what exists in the developed programme. As the programme is revised, additional contents on psychosocial issues will be included and the programme will be planned along the clinical pathway. Furthermore, it should begin during the pre-transplant period and continue in a longterm follow-up.