Self-management support and eHealth for patients and informal caregivers confronted with advanced cancer: an online focus group study among nurses.

BACKGROUND: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. METHODS: Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. RESULTS: Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. CONCLUSIONS: Nurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers.

Assessment of a Structured Self-Management Support Intervention by Nurses for Patients With Incurable Cancer.

OBJECTIVES: To gain an understanding of the perceptions of patients with incurable cancer regarding a new nurse-led self-management support intervention with an integrated eHealth application (Oncokompas) and its potential effectiveness. SAMPLE & SETTING: 36 patients receiving support in the home setting. METHODS & VARIABLES: A pre- and post-test mixed-methods design was used with a period of 12 weeks between the tests and qualitative interviews. Outcome measures were the perceived application of the intervention, patient satisfaction, patient activation, and quality of life. RESULTS: 85% of patients were satisfied with the assessment of their needs and the advice received. They valued nurses' expertise and the assistance provided in their homes. Twenty-five percent of the patients used Oncokompas. However, no statistically significant changes in patient activation and quality of life were found. IMPLICATIONS FOR NURSING: This intervention can be used for encouraging self-management by patients with incurable cancer. Additional refinement and tailoring is desirable. Offering the intervention as early in the palliative phase as possible is recommended.

A nurse-led self-management support intervention for patients and informal caregivers facing incurable cancer: A feasibility study from the perspective of nurses.

PURPOSE: Investigation of the feasibility of recruitment through nurses of patients with incurable cancer, and the feasibility (adoption, usage) and nurses' evaluation of a nurse-led self-management support intervention, integrated in continuity home visits and based on the 5 A's Behavior Change Model. METHOD: Questionnaire, registrations, evaluation forms, and interviews. RESULTS: Recruitment was complicated; many patients were ineligible for participation, nurses appeared protective of their patients (gatekeeping), and recruitment during the first continuity home visit appeared to be a barrier as a lot of other issues had to be discussed. The adoption rate was 81%, meaning that 18 out of 22 nurses recruited were willing to use the intervention. The usage rate at the nurse level was 56%, meaning that 10 nurses applied the intervention in full (having applied all five A's) in at least one patient. Nurses used the intervention in full in 21 out of the 36 patients included, implying a usage rate at the patient level of 58%. Nurses' mean general satisfaction score for the intervention was 7.57 (range 0-10). Nurse were especially positive about the 5 A's model, and considered the continuity home visits to be an appropriate setting for the intervention. CONCLUSIONS: Timing of recruitment and gatekeeping complicated recruitment of patients through nurses. Although nurses were positive about the intervention, nurses often did not fully apply the intervention. To improve its usage, it is suggested that nurses should first be trained in using the 5 A's model.

Self-Management Support in Patients With Incurable Cancer: How Confident Are Nurses?

OBJECTIVES: To explore how nurses perceive their self-efficacy and performance in supporting self-management among patients with incurable cancer, and whether these perceptions differ between community and hospital nurses. SAMPLE & SETTING: 222 hospital nurses (n = 94) and community nurses (n = 128) working with adult patients with incurable cancer. METHODS & VARIABLES: An online survey included the Self-Efficacy and Performance Into Self-Management Support instrument. Possible differences in age, gender, work setting, and additional training in oncology between groups were explored. RESULTS: Nurses felt confident about their self-efficacy, particularly in assessing patients' knowledge and beliefs and in advising about their disease and health status. Nurses felt less confident in their performance, particularly in the use of technology (arranging follow-up care), but also in agreeing on collaborative goals and assisting patients in achieving these goals. Compared to hospital nurses, community nurses reported significantly higher scores on self-efficacy and performance. IMPLICATIONS FOR NURSING: More effort is needed to increase nurses' confidence in providing self-management support, with a focus on arranging follow-up care with the use of technology and on collaborating with patients in setting and achieving goals.

Effects of eHealth for patients and informal caregivers confronted with cancer: A meta-review.

BACKGROUND: eHealth can be defined as information provision about illness or health care and/or support for patients and/or informal caregivers, using the computer or related technologies. eHealth interventions are increasingly being used in cancer care, e.g. to support patients and informal caregivers in managing symptoms and problems in daily life. OBJECTIVES: To synthesize evidence from systematic reviews on the effects of eHealth for cancer patients or their informal caregivers. MATERIALS AND METHODS: A systematic meta-review, in the sense of a systematic review of reviews, was conducted. Searches were performed in PubMed, Embase, CINAHL, PsycINFO, and the Cochrane Library. All steps in the review process were either performed by two reviewers independently or checked by a second reviewer. Disagreements were resolved by consensus. RESULTS: Ten systematic reviews were included. All reviews focused on the effects of eHealth for patients and none on effects for informal caregivers. Except for one review of high methodological quality, all reviews were of moderate methodological quality. Evidence was found for effects on perceived support, knowledge levels, and information competence of cancer patients. Indications of evidence were found for health status and healthcare participation. Findings were inconsistent for outcomes related to decision-making, psychological wellbeing, depression and anxiety, and quality of life. No evidence was found for effects on physical and functional wellbeing. CONCLUSION: There is evidence for positive effects of eHealth on perceived support, knowledge, and information competence of cancer patients. For effects on other outcomes in cancer patients, findings are mainly inconsistent or lacking. This meta-review did not find relevant reviews focusing on or including the effects of eHealth on informal caregivers, which seems a rather unexplored area.