Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial.

BACKGROUND: Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts. METHODS: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers' self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers' reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. RESULTS: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference -0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, P=.09) and at T1 (difference -4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. TRIAL REGISTRATION: Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.8365.

Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study.

BACKGROUND: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them. OBJECTIVE: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts. METHODS: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses' registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts. RESULTS: The actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses' evaluations about providing self-management support online were mixed as it was a relatively new task for them. CONCLUSIONS: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.

Self-Management Support and eHealth When Managing Changes in Behavior and Mood of a Relative With Dementia: An Asynchronous Online Focus Group Study of Family Caregivers' Needs.

The current article discusses how and by whom family caregivers want to be supported in self-management when managing changes in behavior and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support. Four asynchronous online focus groups were held with 32 family caregivers of individuals with dementia. Transcripts of the online focus groups were analyzed using qualitative thematic analysis. Family caregivers need support from professionals or peers in the form of (a) information about dementia and its symptoms, (b) tips and advice on managing changes in behavior and mood, (c) opportunities to discuss experiences and feelings, and (d) appreciation and acknowledgement of caregiving. The opinions of family caregivers about self-management support through eHealth were also reported. Findings suggest a personal approach is essential to self-management support for family caregivers managing changes in behavior and mood of relatives with dementia. In addition, self-management support can be provided to some extent through eHealth, but this medium cannot replace personal contacts entirely. [Res Gerontol Nurs. 2018; 11(3):151-159.].

Online Self-Management Support for Family Caregivers to Help Them Manage Behavior Changes in Their Relative With Dementia: Study Protocol for a Randomized Controlled Trial and a Process Evaluation.

BACKGROUND: Online interventions are potentially effective ways to support family caregivers in the management of behavior changes in their relative with dementia. OBJECTIVE: The objective of this paper is to present the design of a study evaluating and comparing 3 intervention arms for online self-management support. METHODS: A randomized controlled trial (RCT) will be conducted with a total of 81 family caregivers of community-dwelling people with dementia in the Netherlands. Family caregivers will be randomly allocated to one of the following intervention arms: (1) a major self-management support intervention consisting of personal email contacts with a nurse specialized in dementia care, online videos, and electronic bulletins (e-bulletins); (2) a medium self-management support intervention consisting of only online videos and e-bulletins; and (3) a minor self-management support intervention with only e-bulletins. The primary outcome is the self-efficacy of the family caregiver. The secondary outcomes are the behavior problems of the person with dementia as reported by the family caregiver, and positive and negative aspects of the relationship. Background characteristics (eg, type of family relationship) will also be assessed. All data for the RCT will be collected via online questionnaires, administered before the intervention (T0), after 6 weeks (T1), and after 12 weeks (T2). Alongside the RCT, a process evaluation will be conducted, based on a number of evaluation questions and semi-open interviews with family caregivers. RESULTS: Data collection will be completed in August 2017. Study results will be reported in early 2018. CONCLUSIONS: The study will shed more light on the effect of online self-management support interventions and insights will be gained into whether a major intervention, consisting of personal email contacts with specialized nurses, videos, and e-bulletins, has more effect than smaller online interventions. This is relevant in an age with increasing numbers of people with dementia, growing pressure on family caregivers, more and more people using the Internet, and increasing healthcare costs. TRIAL REGISTRATION: Nederlands Trial Registry (NTR): NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC).

The effectiveness of interventions in supporting self-management of informal caregivers of people with dementia; a systematic meta review.

BACKGROUND: Informal caregivers of people with dementia are challenged in managing the consequences of dementia in daily life. The objective of this meta-review was to synthesize evidence from previous systematic reviews about professional self-management support interventions for this group. METHODS: In March 2014, searches were conducted in PubMed, CINAHL, Cochrane Library, Embase and PsycINFO. The PRISMA Statement was followed. Interventions were grouped using Martin's targets of self-management, covering 5 targets: relationship with family, maintaining an active lifestyle, psychological wellbeing, techniques to cope with memory changes and information about dementia. Using an evidence synthesis, the outcomes from the included interventions were synthesized and conclusions were drawn about the level of evidence for the effectiveness of interventions within each target. RESULTS: Ten high-quality systematic reviews were selected. Evidence exists for the effectiveness of professional self-management support interventions targeting psychological wellbeing on stress and social outcomes of informal caregivers. In addition, evidence exists for the effectiveness of interventions targeting information on ability/knowledge. Limited evidence was found for the effectiveness of interventions targeting techniques to cope with memory change on coping skills and mood, and for interventions targeting information on the outcomes sense of competence and decision-making confidence of informal caregivers. CONCLUSIONS: Scientific evidence exists for the effectiveness of a number of professional self-management support interventions targeting psychological wellbeing and information. Health care professionals could take account of the fact that psycho-education was integrated in most of the self-management support interventions that were found to be effective in this meta-review. Furthermore, longer and more intensive interventions were associated with greater effects.

Factors and models associated with the amount of hospital care services as demanded by hospitalized patients: a systematic review.

BACKGROUND: Hospitals are constantly being challenged to provide high-quality care despite ageing populations, diminishing resources, and budgetary restraints. While the costs of care depend on the patients' needs, it is not clear which patient characteristics are associated with the demand for care and inherent costs. The aim of this study was to ascertain which patient-related characteristics or models can predict the need for medical and nursing care in general hospital settings. METHODS: We systematically searched MEDLINE, Embase, Business Source Premier and CINAHL. Pre-defined eligibility criteria were used to detect studies that explored patient characteristics and health status parameters associated to the use of hospital care services for hospitalized patients. Two reviewers independently assessed study relevance, quality with the STROBE instrument, and performed data analysis. RESULTS: From 2,168 potentially relevant articles, 17 met our eligibility criteria. These showed a large variety of factors associated with the use of hospital care services; models were found in only three studies. Age, gender, medical and nursing diagnoses, severity of illness, patient acuity, comorbidity, and complications were the characteristics found the most. Patient acuity and medical and nursing diagnoses were the most influencing characteristics. Models including medical or nursing diagnoses and patient acuity explain the variance in the use of hospital care services for at least 56.2%, and up to 78.7% when organizational factors were added. CONCLUSIONS: A larger variety of factors were found to be associated with the use of hospital care services. Models that explain the extent to which hospital care services are used should contain patient characteristics, including patient acuity, medical or nursing diagnoses, and organizational and staffing characteristics, e.g., hospital size, organization of care, and the size and skill mix of staff. This would enable healthcare managers at different levels to evaluate hospital care services and organize or reorganize patient care.