Self-management challenges and support needs among kidney transplant recipients: A qualitative study.

AIMS: This study investigated self-management challenges and support needs experienced by kidney transplant recipients. BACKGROUND: After kidney transplantation, recipients are expected to take an active role in self-management. However, evidence suggests that nurses experience difficulties operationalizing self-management support. Greater insight into the recipients' perspective could help to improve the adequacy and efficacy of nurse-led self-management support. DESIGN: A cross-sectional qualitative study. METHODS: Focus groups and individual interviews were carried out with kidney transplant recipients treated in a Dutch university hospital. Directed content analysis (DCA) was used. RESULTS: Forty-one kidney transplant recipients participated. Challenges after transplantation included becoming an expert patient, adjusting daily life activities, dealing with medical regimen, forming relationships with nurses, dealing with social consequences, dealing with emotions related to transplantation and the donor and improving self-image. To be able to deal with these challenges, participants wished to receive disease specific knowledge and instruction, share personal experiences with fellow patients, share and discuss not only medical but also emotional and social issues with nurses and wanted to be encouraged through positive feedback. "One-size fits all" education was considered insufficient in meeting their needs. CONCLUSIONS: After kidney transplantation, recipients experienced various challenges in dealing with the medical, emotional and social tasks. Current support from nurses overlooked recipients' emotional and social support needs. Nurses need adequate tools and training to be able to meet recipients' self-management support needs.

The complexity of shaping self-management in daily practice.

BACKGROUND AND CONTEXT: Many countries are giving patients a more active role in health care, on both the individual and collective level. This study focuses on one aspect of the participation agenda on the individual level: self-management. The study explores self-management in practice, including the implications of the difficulties encountered. OBJECTIVE: To gain insight into the complexity of self-management practice. This is crucial for developing both self-management interventions and the participation policy agenda. METHODS: Qualitative semi-structured interviews with experts (n=6) and patients with a chronic condition (n=20). RESULTS: In terms of level of involvement and type of activity, shaping self-management in practice depends on personal and social dynamics, patients' ideas of the good life and their interactions with care professionals. Clashes can arise when patients and professionals hold differing ideas, based on different values, about the level and type of patient involvement. DISCUSSION: The discussion on self-management should account for the fact that how we define self-management is very much a normative issue. It depends on the norms and values of patients, professionals and underlying health-care policies. Differing ideas present professionals with ethical dilemmas which they should reflect on. However, professional reflection alone is not enough to deal with these dilemmas. The participation agenda needs far wider ranging reflection on how participation relates to other values in health care.

What support is needed to self-manage a rheumatic disorder: a qualitative study.

BACKGROUND: Today, patients are expected to take an active role in the form of self-management. Given the burden of a rheumatic disorder, the patients cannot be expected to self-manage on their own. In order to develop self-management interventions that fit patients' needs and preferences, it is essential to examine patients' perspective on how support can be optimized. This study aimed to identify support needs of outpatients with rheumatic disorders and preferences for who should provide self-management support. METHODS: A qualitative study was conducted using focus groups and individual interviews with outpatients with rheumatic disorders treated in a Dutch university hospital. Interview data was analysed with Directed Content Analysis and coded with predetermined codes derived from our model about support needs of chronically ill patients. This model distinguished three types of support: instrumental, psychosocial and relational support. RESULTS: Fourteen patients participated in two focus group interviews and six were interviewed individually. Most patients preferred an active role in self-management. Nonetheless, they notably needed support in developing skills for self-managing their rheumatic disorder in daily life. The extent of support needs was influenced by disease stage, presence of symptoms and changes in one's situation. A trusted relationship and partnership were conditional for receiving any kind of professional support. Patients wanted to be seen as experienced experts of living with a rheumatic disorder. Acquiring specific disease-related knowledge, learning how to deal with symptoms and fluctuations, talking about emotional aspects, and discussing daily life issues and disease-related information were identified as important elements of self-management support. It was considered crucial that support be tailored to individual needs and expertise. Professionals and relatives were preferred as support givers. Few patients desired support from fellow patients. CONCLUSION: Self-management was primarily seen as patient's own task. Above all, patients wanted to be seen as the experienced experts. Professionals' self-management support should be focused on coaching patients in developing problem-solving skills, for which practical tools and training are needed.

Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies.

BACKGROUND: Receiving adequate support seems to be crucial to the success of self-management. Although different empirical studies separately examined patients' preferences for self-management support (SMS), an overview is lacking. OBJECTIVE: The aim of this qualitative review was to identify patients' needs with respect to SMS and to explore by whom this support is preferably provided. SEARCH STRATEGY: Qualitative studies were identified from Embase, MEDLINE OvidSP, Web of science, PubMed publisher, Cochrane central, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO. INCLUSION CRITERIA: Articles needed to meet all of the following criteria: (i) focuses on self-management, (ii) concerns adult patients with rheumatic diseases (rheumatoid arthritis and fibromyalgia), a variant of cancer or chronic kidney disease, (iii) explores support needs from the patients' perspective, (iv) uses qualitative methods and (v) published in English. DATA EXTRACTION AND SYNTHESIS: A thematic synthesis, developed by Thomas and Harden, was conducted of the 37 included studies. MAIN RESULTS: Chronic patients need instrumental support, psychosocial support and relational support from health-care professionals, family/friends and fellow patients to manage the chronic condition. Relational support is at the centre of the support needs and fuels all other types of support. DISCUSSION AND CONCLUSIONS: Patients do not self-manage on their own. Patients expect health-care professionals to fulfil a comprehensive role. Support needs can be knitted together only when patients and professionals work together on the basis of collaborative partnership. Dynamics in support needs make it important to regularly assess patient needs.

The development and psychometric validation of the self-efficacy and performance in self-management support (SEPSS) Instrument.

AIM: To develop and psychometrically test the self-efficacy and performance in self-management support (SEPSS) instrument. BACKGROUND: Facilitating persons with a chronic condition to take an active role in the management of their condition, implicates that nurses acquire new competencies. An instrument that can validly and reliably measure nurses' performance and their perceived capacity to perform self-management support is needed to evaluate current practice and training in self-management support. DESIGN: Instrument development and psychometric testing of the content and construct validity, factor structure and reliability. METHODS: A literature review and expert consultation (N = 17) identified the content. The items were structured according to the Five-A's model and an overarching category of 'overall' competencies. The initial instrument was tested in a sample of 472 nurses and 51 nursing students from Belgium and the Netherlands, between June 2014-January 2015. RESULTS: Confirmatory factor analyses revealed satisfactory fit indices for the six-factor structure. Discriminating power was demonstrated for subgroups. The overall internal consistency (Cronbach's alpha) was high both for the self-efficacy and the performance items. The test-retest intra-class correlation coefficients were good. CONCLUSION: The SEPSS instrument is a 36-item, Likert-scaled self-reporting instrument with good content and construct validity, and good internal consistency reliability and good test-retest reliability. Therefore, it is a promising instrument to measure self-efficacy and performance with regard to self-management support.

Rhetoric or reality? What nurse practitioners do to provide self-management support in outpatient clinics: an ethnographic study.

AIMS AND OBJECTIVES: To describe how nurse practitioners enact their role in outpatient consultations, and how this compares to their perception of their responsibility for patients with chronic conditions. BACKGROUND: Nurse practitioners working with patients with chronic conditions seek to support them in self-managing their diseases. DESIGN: An ethnographic study. METHODS: Episodic participant observations (in total 48 hours) were carried out combined with formal interviews. The study population consisted of a purposive sample of nurse practitioners working in five outpatient clinics related to chronic care in one university medical centre in the Netherlands. Two different types of clinics were selected, namely (1) for patients with episodic flare-ups and (2) for patients with diseases requiring life-saving procedures. RESULTS: The nurse practitioners perceived the monitoring of patients' treatment as their main professional responsibility. Four monitoring strategies could be distinguished: 'assessing health conditions', 'connecting with patients', 'prioritising treatment in daily living' and 'educating patients'. CONCLUSION: While nurse practitioners considered building a relationship with their patients of utmost importance, their consultations were mostly based on a conventional medical model of medical history taking. Little attention was paid to the social, psychological and behavioural dimensions of illness. Nurse practitioners in this study seemed quite successful in their extension into medical territory, but moving patients' illness perceptions to the background was not conducive to self-management support. RELEVANCE TO CLINICAL PRACTICE: By their medical subspecialty expertise, nurse practitioners have a major role in the longitudinal process of the management of chronic diseases' treatment. Supporting patients to reduce the impact of the disease and its complications requires nurse practitioners to develop new coaching strategies designed to meet patients' individual needs.

Nurses' views on patient self-management: a qualitative study.

AIMS: To unravel outpatient nurses' views on the role of people with chronic conditions in self-management, nurses' own support role and to establish how these views relate to nurse-led self-management interventions. BACKGROUND: Providing self-management support is a core task of nurses in outpatient chronic care. However, the concept of self-management is interpreted in different ways and little is known about nurses' views on patients' role in self-management and nurses' own support role. DESIGN: Qualitative design. METHODS: Individual semi-structured interviews were held in 2012-2013 with outpatient nurses at a university medical hospital in the Netherlands. After transcription, data-driven codes were assigned and key elements of views and experiences were discussed in the research team. Finally, insights were merged to construct and characterize types. RESULTS: Twenty-seven nurses were interviewed. The analysis identified three divergent views on self-management support: adhering to a medical regimen; monitoring symptoms; and integrating illness into daily life. These views differ with respect to the patient's role in self-management, the support role of the nurse and the focus of activities, ranging from biomedical to biopsychosocial. The first two were mainly medically oriented. Nurses applied interventions consistent with their individual views on self-management. CONCLUSION: Nurses had distinct perceptions about self-management and their own role in self-management support. Social and emotional tasks of living with a chronic condition were, however, overlooked. Nurses seem to lack sufficient training and practical interventions to provide self-management support that meets the integral needs of patients with a chronic condition.

The doctor and the market: about the influence of market reforms on the professional medical ethics of surgeons and general practitioners in the Netherlands.

To explore whether market reforms in a health care system affect medical professional ethics of hospital-based specialists on the one hand and physicians in independent practices on the other. Qualitative interviews with 27 surgeons and 28 general practitioners in The Netherlands, held 2-3 years after a major overhaul of the Dutch health care system involving several market reforms. Surgeons now regularly advertise their work (while this was forbidden in the past) and pay more attention to patients with relatively minor afflictions, thus deviating from codes of ethics that oblige physicians to treat each other as brothers and to treat patients according to medical need. Dutch GPs have abandoned their traditional reticence and their fear of medicalization. They now seem to treat more in accordance with patients' preferences and less in accordance with medical need. Market reforms do affect medical professional principles, and it is doubtful whether these changes were intended when Dutch policy makers decided to introduce market elements in the health care system. Policy makers in other countries considering similar reforms should pay attention to these results.

Teaching self-management support in Dutch Bachelor of Nursing education: A mixed methods study of the curriculum.

BACKGROUND: Nurses are expected to support people to self-manage. Student nurses therefore need to master competencies that include the assessment of peoples' needs and preferences, and shared decision-making, whilst respecting and enhancing peoples' autonomy. Adapting nurse education programmes to meet this goal requires insight into the practice of teaching self-management support. In order to reveal this practice, one can distinguish between the intended, the taught, and the received curriculum. OBJECTIVES: This study aimed to explore how Dutch Bachelor of Nursing students are educated to support peoples' self-management in clinical practice. DESIGN: Mixed methods. METHODS AND PARTICIPANTS: Focus group meetings with 30 lecturers, and qualitative semi-structured interviews with four coordinators and four (associate) professors of four Dutch schools for Bachelor of Nursing. Syllabuses were screened for learning objectives related to self-management. A survey measuring self-efficacy and behaviour regarding self-management support was distributed among 444 final-year students of these schools, resulting in 238 valid responses (response rate 53.6%). RESULTS: Much attention is paid in the curriculum to assessment of people's preferences and healthcare education but less attention is given to teaching the arrangement of follow-up care. The study further reveals that students have problems transferring theory into practice, and that they experience conflicting values between their nurse education and internships. CONCLUSIONS: Currently, students are taught to provide people with self-management support by learning about theoretical models, developing communication skills, and reflecting on their internships. This approach seems inadequate to prepare students for this task in daily practice. A shared view on self-management support based on authentic situations, having role models at university and on internships and empowering students may enable them to better support people to self-manage.

What factors influence nurses' behavior in supporting patient self-management? An explorative questionnaire study.

BACKGROUND: A major challenge for nurses in hospital care is supporting chronically ill patients in self-managing their chronic condition. Self-management support requires a broad range of competencies and is often regarded as difficult to implement in daily practice. So far, we have no insight in nurses' behavior in daily practice with regard to self-management support and what factors may influence their behavior. OBJECTIVES: The aim of this survey was to explore (i) the self-reported behavior on self-management support of nurses in a university hospital; and (ii) the factors influencing this behavior. DESIGN: Total sample approach with cross-sectional design. PARTICIPANTS AND SETTING: Nurses employed by a university hospital received an invitation for the research through e-mail containing a link to the survey. Of the 2054 nurses who had been invited to participate, 598 responded (29.11%). The entire questionnaire was completed by 379 nurses, 32 of whom indicated they did not work with patients on a daily basis. After excluding those 32, the final sample included 347 valid responses (16.9%). 90.5% of the respondents was female, mean age was 38.8 years. METHODS: In a web-based questionnaire, the self-efficacy and performance in self-management support instrument (SEPSS-36) was used, with additional questions about attitude, subjective norms, and perceived barriers for self-management support. RESULTS: This study shows that nurses are self-confident of their capabilities to support self-management. They also feel that most of the time they acted accordingly. Still, a significant gap between self-efficacy and behavior of self-management support was found (p<0.001). Nurses themselves perceive lack of time and patients' lack of knowledge as barriers for self-management support, but this did not influence their behavior (p>0.05). Regression analysis showed that perceived lack of own knowledge, the presumed absence of a patients' need for self-management support, and nurses' self-efficacy in self-management support are factors that influence the behavior of self-management support. 41.1% of the variance of behavior is explained by these three factors. CONCLUSION: This study shows a significant gap between self-reported self-efficacy and behavior in self-management support in nurses working in a university hospital. To enhance self-management support, managers and educators should take these influential factors into account. A third of the nurses did not report a need for additional training on self-management support. This implies that programs should also aim to improve reflective skills and raising awareness.

Self-management support: A qualitative study of ethical dilemmas experienced by nurses.

OBJECTIVE: Policymakers increasingly focus their attention on stimulating patients' self-management. Critical reflection on this trend is often limited. A focus on self-management does not only change nurses' activities, but also the values underlying the nurse-patient relationship. The latter can result in ethical dilemmas. METHODS: In order to identify possible dilemmas a qualitative study consisting of semi-structured interviews was conducted. Six experts on self-management and medical ethics and 15 nurses participated. RESULTS: Nurses providing self-management support were at risk of facing three types of ethical dilemmas: respecting patient autonomy versus reaching optimal health outcomes, respecting patient autonomy versus stimulating patient involvement, and a holistic approach to self-management support versus safeguarding professional boundaries. CONCLUSION: The ethical dilemmas experienced by nurses rest on different views about what constitutes good care provision and good self-management. Interviewed nurses had a tendency to steer patients in a certain direction. They put great effort into convincing patients to follow their suggestions, be it making the 'right choice' according to medical norms or becoming actively involved patients. PRACTICE IMPLICATIONS: Because self-management support may result in clashing values, the development and implementation of self-management support requires deliberation about the values underlying the relationship between professionals and patients.

Four perspectives on self-management support by nurses for people with chronic conditions: a Q-methodological study.

BACKGROUND: Self-management support is a major task of nurses in chronic care. Several conceptualizations on what self-management support encompasses are described in the literature. However, nurses' attitudes and perceptions related to self-management support are not known. OBJECTIVE: To reveal distinctive perspectives of nurses toward self-management support in chronic care. DESIGN AND METHODS: A Q-methodological study was conducted in which nurses rank-ordered 37 statements on self-management support. Thereafter they motivated their ranking in semi-structured interviews. PARTICIPANTS AND SETTING: A purposive sample of 49 Dutch nurses with a variety of educational levels, age, and from different healthcare settings was invited by e-mail to participate in the study. Thirty-nine nurses (aged 21-54 years) eventually participated. The nurses worked in the following settings: hospital (n=11, 28%), home-care (n=14, 36%), mental health care (n=7, 17%), elderly care (n=6, 15%) and general practice (n=1, 3%). RESULTS: Four distinct perspectives on the goals for self-management support were identified: the Coach, the Clinician, the Gatekeeper and the Educator perspective. The Coach nurse focuses on the patient's daily life activities, whereas the nurses of the Clinician type aim to achieve adherence to treatment. The goal of self-management support from the Gatekeeper perspective is to reduce health care costs. Finally, the Educator nurse focuses on instructing patients in managing the illness. CONCLUSIONS: The changing role of chronic patients with regard to self-management asks for a new understanding of nurses' supportive tasks. Nurses appear to have dissimilar perceptions of what self-management support entails. These distinct perceptions reflect different patient realities and demand that nurses are capable of reflexivity and sensitivity to patient needs. Different perspectives toward self-management support also call for diverse competencies and consequently, also for adaptation of educational nursing programs.

Use of Online Self-Management Diaries in Asthma and COPD: A Qualitative Study of Subjects' and Professionals' Perceptions and Behaviors.

BACKGROUND: Online self-management diaries are used to support patients' self-management skills and facilitate associated behavioral changes. Although web-based diaries are well-known as a potential self-management tool, reasons that patients use (or do not use) self-management diaries, as well as perceptions and behaviors related to diary use, remain largely unknown. METHODS: Semistructured interviews (n = 30) were conducted with health-care professionals and subjects to understand perceptions and behaviors related to self-management diary use for asthma and COPD in 2 hospitals in Rotterdam, The Netherlands. RESULTS: Subjects in this study used self-management diaries to improve their knowledge of the disease, cope more consciously with their disease, feel in control, and discuss outcomes from the self-management diaries with their health-care professionals. Two subjects reported that they used the self-management diary to cope more effectively with their disease and recognized an exacerbation and acted by adjusting their medications. Both health-care professionals and subjects experienced practical barriers in integrating self-management diaries into their regular practices. Subjects' reasons for nonuse were related to the intervention, the disease, and subject-provider contact. CONCLUSIONS: Health-care professionals should help patients use self-management diaries by collaboratively developing an individual treatment plan and by showing patients how to use the diaries to recognize and act on an exacerbation. Together with the suggestions made for improving the self-management diaries, this will aid in the integration of self-management diaries into regular health-care practice and enhance patients' self-management of their disease.