Currently we observe a gap between theory and practices of patient engagement. If both scholars and health practitioners do agree on the urgency to realize patient engagement, no shared guidelines ...exist so far to orient clinical practice. Despite a supportive policy context, progress to achieve greater patient engagement is patchy and slow and often concentrated at the level of policy regulation without dialoguing with practitioners from the clinical field as well as patients and families. Though individual clinicians, care teams and health organizations may be interested and deeply committed to engage patients and family members in the medical course, they may lack clarity about how to achieve this goal. This contributes to a wide "system" inertia-really difficult to be overcome-and put at risk any form of innovation in this filed. As a result, patient engagement risk today to be a buzz words, rather than a real guidance for practice. To make the field clearer, we promoted an Italian Consensus Conference on Patient Engagement (ICCPE) in order to set the ground for drafting recommendations for the provision of effective patient engagement interventions. The ICCPE will conclude in June 2017. This document reports on the preliminary phases of this process. In the paper, we advise the importance of "fertilizing a patient engagement ecosystem": an oversimplifying approach to patient engagement promotion appears the result of a common illusion. Patient "disengagement" is a symptom that needs a more holistic and complex approach to solve its underlined causes. Preliminary principles to promote a patient engagement ecosystem are provided in the paper.
Objective:
To describe an innovative school-based intervention to promote healthy lifestyles. To evaluate its effects on children’s food habits and to highlight the key components which contribute ...most to the beneficial effects obtained from children’s, teachers’ and parents’ perspectives.
Design:
An educational tool to improve personal awareness, promote healthy food choices and increase children’s levels of physical activity was developed and evaluated. The tool used a community-based approach and included family members, schools, university, families, sports societies, farms, mass media and municipalities.
Setting:
A total of 11 primary school classes in five schools in Spoleto, Umbria.
Methods:
The tool dealt with healthy food choices, lifestyle and physical activities and is structured in four phases (4 months). The Kidmed test (a validated index based on principles sustaining Mediterranean dietary patterns as well as those that undermine them) and open-ended questionnaires (to highlight the key components which contributed most to the beneficial effects) were used to assess the effectiveness of the intervention. Kidmed scores were evaluated both before and after intervention (T0–T1) and the written answers collected (from teachers, parents and children) were subjected to content analysis using a form of grounded theory.
Results:
Data point to a significant before/after increase on Kidmed scores (t = −3.88; p = .000), revealing an increase in children’s adherence to the Mediterranean Diet, healthy habit changes, greater parental awareness of their educational responsibilities regarding food choices as well as physical activity, and a new school-family alliance as a result of the educational intervention.
Conclusion:
Project findings reveal positive effects on children’s food habits and highlight key components necessary to enhance the effectiveness of a school-based educational intervention.
To identify the psychosocial experiences of diabetes, including negative accounts of diabetes and adaptive ways of coping from the perspective of the person with diabetes.
Participants were 8,596 ...adults (1,368 with type 1 diabetes and 7,228 with type 2 diabetes) in the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Qualitative data were responses to open-ended survey questions about successes, challenges, and wishes for improvement in living with diabetes and about impactful experiences. Emergent coding developed with multinational collaborators identified thematic content about psychosocial aspects. The κ measure of interrater reliability was 0.72.
Analysis identified two negative psychosocial themes: 1) anxiety/fear, worry about hypoglycemia and complications of diabetes, depression, and negative moods/hopelessness and 2) discrimination at work and public misunderstanding about diabetes. Two psychosocial themes demonstrated adaptive ways of coping with diabetes: 1) having a positive outlook and sense of resilience in the midst of having diabetes and 2) receiving psychosocial support through caring and compassionate family, friends, health care professionals, and other people with diabetes.
The personal accounts give insight into the psychosocial experiences and coping strategies of people with diabetes and can inform efforts to meet those needs and capitalize on strengths.
Context:
There is scarce knowledge of the interaction between depression/health-related quality of life (HRQOL) and lifestyle intervention in obesity.
Objective:
The aim of the study was to establish ...whether baseline mood status or HRQOL affects attendance to educational or exercise sessions and whether attendance to these two components of the intervention affects mood and/or HRQOL in obesity.
Design:
A total of 282 overweight/obese subjects (body mass index, 33.4 ± 5.9 kg/m2; 103 males, 179 females; age, 53.8 ± 13.0 yr, mean ± sd) were consecutively enrolled in a multidisciplinary lifestyle intervention program. During the intensive phase of the intervention (3 months) patients were invited to attend eight educational sessions and 26 exercise group sessions.
Results:
Poor adherence to exercise sessions is predicted by baseline depressive mood (P =0.006) and by low levels of HRQOL (domains of Vitality, Physical Role Functioning, Social Functioning, Mental Composite, Physical Composite Scores) (P < 0.05). Attendance to the educational sessions is associated with beneficial effects of the lifestyle intervention on depressive symptoms (P < 0.013) and on several mental domains of HRQOL (P < 0.041); attendance to the exercise sessions predicted the beneficial effects on perceived general health (P < 0.021) and body mass index (P < 0.011). Attendance to both educational and exercise components is associated (P < 0.05) with the reductions in waist circumference, fat mass, and blood pressure observed after the intensive phase of the intervention.
Conclusions:
Measurement of depressive mood and HRQOL before lifestyle intervention allows identification of patients at increased risk of attrition with exercise and educational sessions. Both the exercise and the educational sessions are essential for gaining the full spectrum of psychological and clinical benefits from multidisciplinary lifestyle intervention in obesity.
Objective. The purpose of the present study is to examine the effects of a multidisciplinary lifestyle intervention to treat overweight/obese children and adolescents. The main outcome was ...cardiometabolic risk based on the waist-to-height ratio (WHTR) measurement. Secondary outcomes were (1) changes in body composition; (2) adherence to a Mediterranean diet; and (3) physical performance. Method. The study involved 74 overweight/obese children or adolescents. The intervention was multidisciplinary including nutrition, exercise, and psychological aspects based on a family-based approach; it was delivered for six months for children and three months for adolescents. Before and after the intervention, several anthropometric measures (height, body weight, body mass index or BMI, waist circumference, and body composition), cardiometabolic risk index (waist-to-height ratio or WHTR), and nutrition habits of the participants and their families were evaluated. In addition, a set of functional motor fitness tests was performed to evaluate physical performance measures. Results. After the intervention both children and adolescents showed a significant reduction in body weight, BMI, waist circumference, fat mass, and WHTR index and an improvement of fat-free mass, adherence to the Mediterranean diet, and physical fitness performance. Conclusion. A family-based multidisciplinary approach is effective in the short term in ameliorating the health status, the nutrition habits, and physical performance in children and adolescents.
A time-lagged design was used to examine how the perceptions of alliance to the group as a whole by the other group members at an earlier point in the group were related to an individual group ...member's perceptions of alliance to the group as a whole at a later point in the group. We also examined how treatment outcome moderated this relationship. Seventy-three patients diagnosed as overweight or obese participating in 10 short-term therapy groups provided data for analyses. Group members completed measures of cohesion to the group and alliance to the group as a whole at the third, sixth, and last session of 12-session groups as well as pre- and posttest ratings on Obesity-Related Well-Being and the Outcome Questionnaire-45. As hypothesized, earlier ratings of alliance to the group as a whole by the other group members were related to later ratings of alliance to the group as a whole by the group member. Also as hypothesized, when group members had a better outcome, there was a significant positive relationship between perceptions of alliance to the group as a whole by the other group members at an earlier point in the group and an individual group member's perceptions of alliance to the group as a whole at a later point in time. When members had a worse outcome, there was no relationship between perceptions of alliance to the group as a whole by the other group members at an earlier point in the group and an individual group member's perceptions of alliance to the group as a whole at a later point in the group.
Abstract Aims The second Diabetes Attitudes, Wishes and Needs (DAWN2) study identified the experiences of family members who support adults living with diabetes. Methods Participants were 2057 adult ...family members living with the person with diabetes from 17 countries. Qualitative data were responses to open-ended survey questions about how living with a person with diabetes has impacted family members and the ways they choose to be involved in the diabetes care for the person with whom they live. Emergent coding with input from multinational collaborators identified thematic content about psychosocial aspects. Results Family members wanted to do what was best for the person with diabetes and help in whatever way possible. Four themes branched from that principle: (1) family members worry about day-to-day struggles of the person with diabetes, such as hypoglycemia and employment stability; (2) diabetes negatively affects the person with diabetes–family member relationship, creating an emotional strain and shift in relationship; (3) family members have some support resources to deal with the burdens and lifestyle changes of diabetes, but would like more; and (4) the person with diabetes has provided inspiration to the family member, and helped the family member make positive life changes in eating healthier. Conclusions These data provide insight into the ways that family members experience living with diabetes, including their challenges, motivations and intentions in supporting their person with diabetes. Family members speak eloquently and with emotion about their role in a family with diabetes.
Abstract Objective To introduce a narrative-autobiographical approach in the care and education of adolescents with type-1 diabetes and observe the effects of this novel approach on adolescents’ ...self-awareness, concern for self-care, and well-being. Methods Ninety-four adolescents with type-1 diabetes attending one 9-day summer camp in 2004, 2005, or 2006 participated in structured daily self-writing proposals on diabetes, integrated with daily interactive self-management education. After some months, we sent participants interview-like questionnaires, and two independent researchers performed a qualitative analysis of the 50 answers that were mailed back. Results Writing about the discovery of diabetes was, for many, a stressful experience, but with a strong liberating effect. One relevant point was change , which occurred: (a) in the perception of self; (b) in the relationship with others; (c) in the relationship with the disease. Conclusions The integration of autobiography in diabetes camps, by adding the value of sharing individual stories to the liberating power of self-writing, can allow the adolescents to overcome their feelings of diversity, and can initiate several changes reflecting increased self-efficacy, maturity, acceptance of the disease and responsibility in self-management. Practice implications Self-writing is feasible and well accepted, and provides healthcare professionals a proper way to patient-centered care.
Abstract Objective To review recent results of the current approaches to the education of obese people, focusing on the motivation for healthy behaviors, and to present the narrative-autobiographical ...approach as a possible tool in the education of obese people. Methods Our overview will necessarily be partial, and limited to some studies that succeeded in improving the motivation for healthy lifestyles in people with overweight or obesity. We will also describe the use of the autobiographical approach in the “ Io-muovo-la-mia-vita ” project. Results Many studies have induced relevant behavioral changes, mainly by using intensive interventions. Weight loss maintenance has been difficult and usually has required pro-active follow-up interventions. The use of self-writing may allow overweight and obese people to reveal their inner feelings to themselves and to peers, and may reinforce their motivation for self-care. Conclusions The association of weight loss with intensive interventions, and the need for follow-up pro-active interventions to maintain results make one wonder whether the inner motivation of participants is usually fostered as recommended. Practice implications The narrative-autobiographical approach appears to be a proper way to patient centered care, but for an effective practice, the human and relational attitudes of healthcare professionals should be integrated with specific educational skills.
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