An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges

Children and young people are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe, involvement of children and young people in clinical research is promoted extensively in order to engage young people in research as partners and to give them a voice to raise their own issues or opinions and for their involvement in planning and decision making in addition to learning research skills. Children and young people can be trained in clinical research through participation in young person advisory groups (YPAGs). Members of YPAGs assist other children and young people to learn about clinical research and share their experience and point of view with researchers, thereby possibly influencing all phases of research including the development and prioritization of research questions, design and methods, recruitment plans, and strategies for results dissemination. In the long term, the expansion of YPAGs in Europe will serve as a driving force for refining pediatric clinical research. It will help in a better definition of research projects according to the patients’ needs. Furthermore, direct engagement of children and young people in research will be favorable to both researchers and young people.     

Peer workers’ perceptions and experiences of barriers to implementation of peer worker roles in mental health services: A literature review

ObjectivesTo identify peer workers’ perceptions and experiences of barriers to implementation of peer worker roles in mental health services.DesignReview of qualitative and quantitative studies.Data sourcesA comprehensive electronic database search was conducted between October 2014 and December 2015 in PubMed, CINAHL, Web of Science, The Cochrane Library, and PsycARTICLES. Additional articles were identified through handsearch.Review methodsAll articles were assessed on quality. A thematic analysis informed by a multi-level approach was adopted to identify and discuss the main themes in the individual studies. Reporting was in line with the ‘Enhancing transparency in reporting the synthesis of qualitative research’ statement.ResultsEighteen articles met the inclusion criteria. All studies adopted qualitative research methods, of which three studies used additional quantitative methods. Peer workers’ perceptions and experiences cover a range of themes including the lack of credibility of peer worker roles, professionals’ negative attitudes, tensions with service users, struggles with identity construction, cultural impediments, poor organizational arrangements, and inadequate overarching social and mental health policies.ConclusionsThis review can inform policy, practice and research from the unique perspective of peer workers. Mental health professionals and peer workers should enter into an alliance to address barriers in the integration of peer workers and to enhance quality of service delivery. Longitudinal research is needed to determine how to address barriers in the implementation of peer worker roles.     

Guidebook for Nutrition Counselors

Background: Because accurate measures of recumbent length are essential to assess growth and energy requirements of mobility-impaired individuals with cerebral palsy (CP), a reliable and simple method of estimating recumbent length is required. Prediction of recumbent length from knee height in this population has not yet been investigated.

Objectives: i) To correlate direct measures of recumbent length in mobility-impaired individuals having lower leg extremity cerebral palsy (LECP) involvement with indirect measures of recumbent length calculated using knee-height prediction equations and ii) to determine if knee height is a reliable predictor of recumbent length in this population.

Methods: Subjects (n=34; 15F, 19M), aged 6 to 30 years, were participants in a six-month nutrition rehabilitation program. All subjects had varying degrees of LECP involvement. Recumbent length to the nearest 0.5 cm was measured by standardised techniques. Knee height was measured to the nearest 0.5 centimetre using sliding callipers. Equations based on normal, healthy individuals with application to mobility-impaired or handicapped individuals were used to predict recumbent length from knee height.

Results: Direct measures of recumbent length of subjects significantly correlated with indirect measures calculated using knee height prediction equations (R=0.88, p≤0.0001). In addition, knee height of these subjects was a reliable predictor of recumbent length (R²=0.78, p<0.0001).

Conclusions: Results suggest that knee height may be a reliable predictor for recumbent length in this population.     

Involving Fathers in Teaching Youth About Farm Tractor Seatbelt Safety—A Randomized Control Study

PurposeFarm youth continue to experience high rates of injury and deaths as a result of agricultural activities. Farm machinery, especially tractors, is the most common cause of casualties to youth. A Roll-Over Protection Structure (ROPS) along with a fastened seatbelt can prevent almost all injuries and fatalities from tractor overturns. Despite this knowledge, the use of seatbelts by farmers on ROPS tractors remains low. This study treats farm safety as a family issue and builds on the central role of parents as teachers and role models of farm safety for youth.MethodsThis research study used a longitudinal, repeated-measures, randomized-control design in which youth 10–19 years of age were randomly assigned to either of two intervention groups (parent-led group and staff-led group) or the control group.ResultsFathers in the parent-led group were less likely to operate ROPS tractors without a seatbelt compared with other groups. They were more likely to have communicated with youth about the importance of wearing seatbelts on ROPS tractors. Consequently, youth in the parent-led group were less likely to operate a ROPS tractor without a seatbelt than the control group at post-test.ConclusionsThis randomized control trial supports the effectiveness of a home-based, father-led farm safety intervention as a promising strategy for reducing youth as well as father-unsafe behaviors (related to tractor seatbelts) on the farm. This intervention appealed to fathers' strong motivation to practice tractor safety for the sake of their youth. Involving fathers helped change both father as well as youth unsafe tractor-seatbelt behaviors.     

Evolutionary Change Mimicking Apical Hypertrophic Cardiomyopathy in a Patient with Takotsubo Cardiomyopathy

In this report, we introduce a case of thickening of the involved left ventricular apical segment on echocardiography and deep T‐wave inversions in precordial leads on electrocardiography transiently seen in the course of recovery from biventricular takotsubo cardiomyopathy, mimicking apical hypertrophic cardiomyopathy. This result suggests that the echocardiographic finding of transient myocardial edema can be identified by cardiac magnetic resonance imaging in takotsubo cardiomyopathy. Additionally, it persisted a few weeks after full functional recovery. We believe that this case will contribute in part toward clarifying the pathophysiology of takotsubo cardiomyopathy.     

The POWER-tool: Recommendations for involving patient representatives in choosing relevant outcome measures during rare disease clinical trial design

In clinical trials, it is relevant to ask patients and/or their caregivers which aspects concerning their disease they consider important to measure when a new intervention is being investigated. Those aspects, useful as outcome measures in a trial, are of pivotal importance for the result of the trial and the subsequent decision-making. In rare diseases the choice of outcome measures may be even more important, due to the small numbers and heterogeneity of the patients that are included.We have developed a tool to involve patients in the determination of outcome measures and the choice of measurement instruments. This tool was developed together with a patient think tank, consisting of a group of rare disease patient representatives, and by interviewing end users. We have road-tested our tool in an ongoing trial, and evaluated it during a focus group meeting.The tool consists of three steps: 1) Preparation, 2) Consultation of patients, 3) Follow-up during which the consultation results are implemented in the trial design.The tool provides guidelines for researchers to include the patient’s opinion in the choice of outcome measures in the trial design stage. We describe the development of the POWER-tool (Patient participation in Outcome measure WEighing for Rare diseases), and first experiences of the tool in an ongoing trial.     

High Ki-67 score is indicative of a greater benefit from adjuvant chemotherapy when added to endocrine therapy in Luminal B HER2 negative and node-positive breast cancer

BackgroundThe indication of adjuvant chemotherapy for patients with highly proliferative estrogen receptor-positive breast cancer is controversial. We analyzed the predictive value of Ki67 for the efficacy of adjuvant chemotherapy in patients with estrogen receptor-positive, node-positive breast cancer.Patients and methodsWe identified 1241 patients with Luminal B early stage breast cancer with 1–3 axillary positive nodes who underwent surgery between 1995 and 2005 at the European Institute of Oncology and received adjuvant hormonotherapy and/or chemotherapy. Differences in the distribution of characteristics according to treatment were evaluated by the Chi-square test. To evaluate the effect of adding chemotherapy to hormonotherapy, the propensity score method was used to match patients' characteristics minimizing bias related to the non-random assignment of treatment.ResultsThe probability of receiving chemotherapy was significantly associated with age, tumor grade, degree of hormone responsiveness, tumor size and peripheral vascular invasion. The propensity score distribution was statistically different between the two treatment groups (p < 0.0001). The 5-year OS percentages were 95.8% (95% CI, 93.5–97.2) in the hormonotherapy group and 96.2% (95%CI, 94.4–97.4%) in the hormonotherapy/chemotherapy group (log-rank test p-value 0.663). The 5-year DFS percentages were 84.6% (95% CI, 81.0–87.6%) in the hormonotherapy group and 84.2% (95% CI, 81.3–86.7%) in the hormonotherapy/chemotherapy group (log-rank test p-value 0.388). However, when analyzing the 5-year DFS by Ki-67 distribution, Subpopulation Treatment Effect Pattern Plot (STEPP) analysis showed a beneficial effect of chemotherapy in patients with highly proliferative tumor (Ki-67 ≥ 32%). The interaction between Ki-67 and treatment was statistically significant (p = 0.027).ConclusionsKi67 expression identifies a subset of patients with Luminal B and node-positive breast cancer who could benefit from addition of adjuvant chemotherapy to hormonotherapy. Dichotomy was observed for Ki67 at 32% level.