Participatory development of a framework to actively involve people living with dementia and those from their social network, and healthcare professionals in conducting a systematic review: the DECIDE-SR protocol.

BACKGROUND: Systematic reviews summarize and evaluate relevant studies to contribute to evidence-based practice. Internationally, researchers have reached a consensus that the active involvement of the public leads to better research. Despite this agreement, there are many reviews of research concerning healthcare interventions intended to promote the care of people living with dementia and those from their social network (e.g., close contacts, both family and non-family members) primarily involve only healthcare professionals and other experts. Due to the lack of a dementia-sensitive framework to actively involve people living with dementia and those from their social network, and healthcare professionals as co-researchers in systematic reviews, it is important to develop a framework to inform practice. METHODS: For this framework development process, we will recruit four people living with dementia and a total of four people from their social network, and three healthcare professionals working in acute or long-term care settings. We will conduct regular meetings with these groups of the public and healthcare professionals to include them in all stages of the systematic review. We will also identify and develop methods necessary to ensure meaningful involvement. The results will be documented and analyzed for the development of a framework. For the planning and preparation for these meetings, as well as the conduct of the meetings themselves, we will be guided by the principles of the INVOLVE approach. In addition, the ACTIVE framework will be used to guide the degree of involvement and the stage in the review process. DISCUSSION: We assume that our transparent approach to the development of a framework to support the active involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews will serve as an impetus for and provide guidance to other researchers with the goal of increasing researchers' focus on this topic and facilitating systematic reviews that apply participatory approaches. TRIAL REGISTRATION: Trial registration is unnecessary as no intervention study will be conducted.

Systematic reviews summarize and evaluate studies on a particular topic. They provide information, for example, regarding whether an intervention is beneficial. This type of review is particularly important for healthcare professionals because they can use the results of the review to guide their actions. There is a growing awareness that the public, including people living with dementia and those from their social network (e.g., relatives, friends), need to be actively involved in the process of preparing these reviews when they are concerned with the topic of the reviews. Despite this consensus, it is often the case that only healthcare professionals are involved in such reviews. At present, no framework for the active involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews has been developed. Therefore, we will develop such a framework together in collaboration with a range of members of the public and healthcare professionals. For this purpose, in addition to healthcare professionals, we will involve people living with dementia and those from their social network. Over the course of several meetings, we will engage in discussion with them and identify the stages of the process of conducting a systematic review in which their involvement as members of the researcher team is meaningful. We will furthermore identify the requirements associated with such an active involvement. A written report of these discussions will be produced in collaboration with the group. This will contribute towards the development of a framework for other researchers. The framework will later be made available to the public free of charge to increase awareness of this topic and to contribute towards more frequent, well-organised and meaningful involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews.

Participatory needs assessment and action planning for a clinical and translational research network.

The goal of this study was to assess the utility of participatory needs assessment processes for continuous improvement of developing clinical and translational research (CTR) networks. Our approach expanded on evaluation strategies for CTR networks, centers, and institutes, which often survey stakeholders to identify infrastructure or resource needs, using the case example of the Great Plains IDeA-CTR Network. Our 4-stage approach (i.e., pre-assessment, data collection, implementation of needs assessment derived actions, monitoring of action plan) included a member survey (n = 357) and five subsequent small group sessions (n = 75 participants) to better characterize needs identified in the survey and to provide actionable recommendations. This participatory, mixed-methods needs assessment and strategic action planning process yielded 11 inter-related recommendations. These recommendations were presented to the CTR steering committee as inputs to develop detailed, prioritized action plans. Preliminary evaluation shows progress towards improved program capacity and effectiveness of the network to respond to member needs. The participatory, mixed-methods needs assessment and strategic planning process allowed a wide range of stakeholders to contribute to the development of actionable recommendations for network improvement, in line with the principles of team science.

Nursing home research: the first International Association of Gerontology and Geriatrics (IAGG) research conference.

The International Association of Gerontology and Geriatrics held its first conference on nursing home research in St Louis, MO, in November 2013. This article provides a summary of the presentations.

Care transitions: integrating transition theory and complexity science concepts.

Care transitions, defined as hospital discharge or movement from one health care setting to another, are currently a major concern of health care providers and policy makers. Extensive empirical research has been conducted on care transitions, but the theoretical foundations are rarely made explicit. We propose that integrating concepts on complex adaptive systems from complexity science with classic theory on transitions in nursing provides a powerful new lens through which to study care transitions and improve transition outcomes. We summarize concepts from both theoretical approaches, propose an expanded model of transitions, and apply the model to the transition from hospital to home.

Circadian rhythms, symptoms, physical functioning, and body mass index in breast cancer survivors.

INTRODUCTION: Research has been limited in circadian activity rhythms and their relationship with health status in early-stage breast cancer survivors. Maintaining strong circadian parameters may reduce symptoms and improve physical functioning and disease-free survival. METHODS: This is a descriptive, correlational, secondary analysis of data from a randomized controlled trial collected 1 year after the first chemotherapy treatment; n = 156 cases with 7 days of wrist actigraph data of six circadian activity rhythm parameters; measures of function, fatigue, sleep, and anxiety/depression; and demographic/medical data including body mass index (BMI). RESULTS: In the total sample and three BMI categories, acrophase was the only circadian parameter that reached means established in healthy adults. In the total sample, phase-delayed acrophase was associated with higher depression (r = 0.180, p = 0.025) and lower morning energy (r = -0.194, p = 0.016) and trended for higher fatigue (r = 0.153, p = 0.057). Lower morning energy was also associated with a lower circadian quotient (r = 0.158, p = 0.05). As BMI increased, weaker circadian parameters were recorded consistently. When compared with women in normal BMI categories, obese women's amplitude and 24-h autocorrelation coefficient were significantly weaker (p = 0.011-0.015). In obese women, phase-delayed acrophase was correlated with higher fatigue and anxiety and with lower morning energy and physical functioning. DISCUSSION/CONCLUSIONS: Amplitude and 24-h autocorrelation parameters were significantly weaker, and phase-delayed acrophase was linked to several more intense symptoms and lower physical functioning in obese women. IMPLICATIONS FOR CANCER SURVIVORS: Clinicians need to target high-risk women with phase-delayed rhythms, higher symptoms, and lower physical functioning for intervention.