What factors contribute to cancer survivors' self-management skills? A cross-sectional observational study.

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.

The self-regulation skills instrument in transplantation (SSIt): Development and measurement properties of a self-report self-management instrument.

OBJECTIVE: To develop a self-management instrument for organ transplant recipients that incorporates self-regulations skills and to determine its measurement properties. METHODS: The instrument includes concepts from social cognitive models: problem awareness, attitude, self-efficacy, motivation, social support, goal setting, goal pursuit, skills and goal affect. The measurement properties were evaluated based on the COSMIN guidelines. Face and content validity were determined through patient assessment, Three-Step Test-Interview and expert assessment using the Content Validity Index. Structural validity and reliability were tested using exploratory factor analysis and Cronbach's alpha. Construct validity was tested by comparing subscales with the Health Education Impact Questionnaire (heiQ). RESULTS: After face and content validity assessment 47 items were entered into the exploratory factor analysis. The analysis showed two meaningful factors, with internal consistency of 0.90 and 0.89. Spearman correlations between the subscales and heiQ were moderate (0.55; 0.46). The final version consists of 21 items, divided into two scales: 'Setbacks' and 'Successes'. CONCLUSIONS: The Self-regulation skills instrument in transplantation (SSIt) is a valid and reliable instrument to asses necessary skills for self-management after transplantation and may be useful for other patients as well. PRACTICE IMPLICATIONS: Insight into self-regulation competencies can help healthcare professionals to tailor self-management support.

Evaluating the feasibility of a nurse-led self-management support intervention for kidney transplant recipients: a pilot study.

BACKGROUND: To support effective self-management after kidney transplantation, a holistic nurse-led self-management support intervention was developed using the Intervention Mapping approach. The primary aim was to evaluate the feasibility, acceptability and fidelity of the intervention for kidney transplant recipients and professionals. The secondary aim was to explore preliminary effects on outcomes. METHODS: A pilot study was conducted in 2015-2017 to evaluate the intervention. Nurse Practitioners (NP) guided recipients in assessing 14 life areas using the Self-Management Web. Participants were supported in developing self-regulation skills which can be applied to self-management of the illness. Strategies included goal setting, action planning, and promotion of motivation and self-efficacy. Adult recipients from an outpatient clinic of a Dutch University Hospital who underwent their transplant at least 1 month ago, were invited to participate. NPs, nephrologists and recipients were interviewed to assess feasibility, fidelity and implementation experience. Consultations were videoed and analysed to assess fidelity. To assess the preliminary effects, the intervention group completed baseline (T0) and follow-up (T1) questionnaires on self-management behavior, self-efficacy, quality of life and quality of care. A historical control group of kidney transplant recipients completed the same questionnaires at T1. RESULTS: Twenty-seven recipients agreed to participate in the intervention group, of which 24 completed the intervention and 16 completed baseline and follow-up surveys. The control group consisted of 33 recipients. Professionals and recipients appraised the open, holistic focus of the intervention as a welcome addition to standard care and felt that this helped to build a relationship of trust. Recipients also felt they became more competent in problem-solving skills. The within-group analysis showed no significant increase in patients' self-management skills. The between-groups analysis showed significantly higher medication adherence among the intervention group (P = 0.03; G = 0.81). The within-groups analysis showed a significantly higher perceived quality of care (P = 0.02) in the intervention group. CONCLUSION: This holistic nurse-led self-management support intervention was found to be feasible and acceptable by professionals and recipients alike. This pilot had a small sample therefore further research is needed into the potential effects on self-management behavior and well-being of transplant recipients. ISRCTN Trial Registry: ISRCTN15057632 (registered retrospectively on 20-07-2018).

Support Needs of People With Head and Neck Cancer Regarding the Disease and Its Treatment.

OBJECTIVES: To provide insight into people's experiences in dealing with the consequences of head and neck cancer (HNC) in daily life and their needs for self-management support. SAMPLE & SETTING: 13 people with HNC who were successfully treated in the Department of Radiation Oncology at the Erasmus MC Cancer Institute in Rotterdam, the Netherlands. METHODS & VARIABLES: Two focus groups and six individual interviews; data were analyzed with directed content analysis. RESULTS: Most patients wished to receive professional support for dealing with post-treatment consequences. Apart from physical complaints, patients had difficulties in dealing with the emotional aspects of HNC and its treatment and struggled with building self-confidence to move on with their lives. Patients mentioned the importance of relatives being there for them but complained that their needs were not always met. Support from fellow patients was valued for their empathetic capacity. IMPLICATIONS FOR NURSING: Nurses must provide self-management support that meets people's integral needs inherent in living with the consequences of HNC, particularly in the initial post-treatment period. Practical interventions could be useful.

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.

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.

A realist review: what do nurse-led self-management interventions achieve for outpatients with a chronic condition?

AIM: The aim of this study was to examine how nurse-led interventions that support self-management of outpatients with chronic conditions work and in what contexts they work successfully. BACKGROUND: Self-management could be directed at goals such as quality of life, adherence or patients' empowerment. Self-management support is an increasingly important task of nurses. Many nurse-led interventions have been developed but it is not clear how these actually help improve patients' self-management capabilities. DESIGN: Realist review. DATA SOURCES: Primary research studies on self-management support interventions conducted by nurses from January 2000 until March 2015 were retrieved from all relevant databases. The studies had a before-after design and used qualitative and quantitative methods. REVIEW METHODS: For each study, we described how the intervention was supposed to improve self-management and compared this with the empirical evidence. Next, we described the context-mechanism-outcome strings for each separate study, explored patterns and integrated the findings. RESULTS: Thirty-eight papers were included, evaluating 35 interventions concerning a diversity of conditions. Seven different context-mechanism-outcome strings were identified. Interventions focusing on patients' intrinsic processes were most successful. Least successful were interventions only providing education aimed at patient behaviour change. Various contexts can influence the success of the interventions: involvement of relatives, target group (i.e. chronic condition, motivation, being recently diagnosed or not), involvement of fellow patients and intervention group homogeneity or heterogeneity. CONCLUSION: Successful interventions focus on patients' intrinsic processes (i.e. motivation or self-efficacy). This would guide nurses to decide what self-management support intervention they can best use in their specific setting and patient group.

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.