The health promotion model and rare disease patients : a mixed methods study examining adherence to treatment in men with congenital hypogonadotropic hypogonadism

Rare diseases are typically chronic medical conditions of genetic etiology characterized by low prevalence and high complexity. Patients living with rare diseases face numerous physical, psychosocial and economic challenges that place them in the realm of health disparities. Congenital hypogonadotropic hypogonadism (CHH) is a rare endocrine disorder characterized by absent puberty and infertility. Little is known about the psychosocial impact of CHH on patients or their adherence to available treatments. This project aimed to examine the relationship between illness perceptions, depressive symptoms and adherence to treatment in men with CHH using the nursing-sensitive Health Promotion Model (HPM). A community based participatory research (CBPR) framework was employed as a model for empowering patients and overcoming health inequities. The study design used a sequential, explanatory mixed-methods approach. To reach dispersed CHH men, we used web-based recruitment and data collection (online survey). Subsequently, three patient focus groups were conducted to provide explanatory insights into the online survey (i.e. barriers to adherence, challenges of CHH, and coping/support) The online survey (n=101) revealed that CHH men struggle with adherence and often have long gaps in care (40% >1 year). They experience negative psychosocial consequences because of CHH and exhibit significantly increased rates of depression (p<0.001). Focus group participants (n=26) identified healthcare system, interpersonal, and personal factors as barriers to adherence. Further, CHH impacts quality of life and impedes psychosexual development in these men. The CHH men are active internet users who rely on the web forcrowdsourcing solutions and peer-to-peer support. Moreover, they are receptive to web-based interventions to address unmet health needs. This thesis contributes to nursing knowledge in several ways. First, it demonstrates the utility of the HPM as a valuable theoretical construct for understanding medication adherence and for assessing rare disease patients. Second, these data identify a range of unmet health needs that are targets for patient-centered interventions. Third, leveraging technology (high-tech) effectively extended the reach of nursing care while the CBPR approach and focus groups (high-touch) served as concurrent nursing interventions facilitating patient empowerment in overcoming health disparities. Last, these findings hold promise for developing e-health interventions to bridge identified shortfalls in care and activating patients for enhanced self- care and wellness -- Les maladies rares sont généralement de maladies chroniques d'étiologie génétique caractérisées par une faible prévalence et une haute complexité de traitement. Les patients atteints de maladies rares sont confrontés à de nombreux défis physiques, psychosociaux et économiques qui les placent dans une posture de disparité et d'inégalités en santé. L'hypogonadisme hypogonadotrope congénital (CHH) est un trouble endocrinien rare caractérisé par l'absence de puberté et l'infertilité. On sait peu de choses sur l'impact psychosocial du CHH sur les patients ou leur adhésion aux traitements disponibles. Ce projet vise à examiner la relation entre la perception de la maladie, les symptômes dépressifs et l'observance du traitement chez les hommes souffrant de CHH. Cette étude est modélisée à l'aide du modèle de la Promotion de la santé de Pender (HPM). Le cadre de l'approche communautaire de recherche participative (CBPR) a aussi été utilisé. La conception de l'étude a reposé sur une approche mixte séquentielle. Pour atteindre les hommes souffrant de CHH, un recrutement et une collecte de données ont été organisées électroniquement. Par la suite, trois groupes de discussion ont été menées avec des patients experts impliqués au sein d'organisations reliés aux maladies rares. Ils ont été invités à discuter certains éléments additionnels dont, les obstacles à l'adhésion au traitement, les défis généraux de vivre avec un CHH, et l'adaptation à la maladie en tenant compte du soutien disponible. Le sondage en ligne (n = 101) a révélé que les hommes souffrant de CHH ont souvent de longues périodes en rupture de soins (40% > 1 an). Ils vivent des conséquences psychosociales négatives en raison du CHH et présentent une augmentation significative des taux de dépression (p <0,001). Les participants aux groupes de discussion (n = 26) identifient dans l'ordre, les systèmes de soins de santé, les relations interpersonnelles, et des facteurs personnels comme des obstacles à l'adhésion. En outre, selon les participants, le CHH impacte négativement sur leur qualité de vie générale et entrave leur développement psychosexuel. Les hommes souffrant de CHH se considèrent être des utilisateurs actifs d'internet et comptent sur le web pour trouver des solutions pour trouver des ressources et y recherchent le soutien de leurs pairs (peer-to-peer support). En outre, ils se disent réceptifs à des interventions qui sont basées sur le web pour répondre aux besoins de santé non satisfaits. Cette thèse contribue à la connaissance des soins infirmiers de plusieurs façons. Tout d'abord, elle démontre l'utilité de la HPM comme une construction théorique utile pour comprendre l'adhésion aux traitements et pour l'évaluation des éléments de promotion de santé qui concernent les patients atteints de maladies rares. Deuxièmement, ces données identifient une gamme de besoins de santé non satisfaits qui sont des cibles pour des interventions infirmières centrées sur le patient. Troisièmement, méthodologiquement parlant, cette étude démontre que les méthodes mixtes sont appropriées aux études en soins infirmiers car elles allient les nouvelles technologies qui peuvent effectivement étendre la portée des soins infirmiers (« high-tech »), et l'approche CBPR par des groupes de discussion (« high-touch ») qui ont facilité la compréhension des difficultés que doivent surmonter les hommes souffrant de CHH pour diminuer les disparités en santé et augmenter leur responsabilisation dans la gestion de la maladie rare. Enfin, ces résultats sont prometteurs pour développer des interventions e-santé susceptibles de combler les lacunes dans les soins et l'autonomisation de patients pour une meilleure emprise sur les auto-soins et le bien-être.

What children value : a scale to guide health promotion programs

Objective. Physical activity is important for the health of all human beings. Although it is important to develop good health promotion programs for children to increase participation in physical activity, to date there appear to be no programs based on what kids value beyond health and physical activity itself. This study proposed to create a scale with strong content and face validity that could uncover what any given population of children value in life regardless of their participation in physical activity and that experts feel could be related to physical activity. These findings will allow the development of targeted health promotion programs to increase children's participation in regular physical activity. Method In this study, a combination of qualitative and quantitative approaches was used. Data were gathered from seven experts in the field, sixty-seven children in grades three to five, five parents, and three teachers. From these data response groupings were created and sent to four experts to be given single word names. The resulting nine theme names were re-worked into "child-friendly" language. Four children were then asked to discuss theme names to see if they liked and understood them. The next step involved asking children and experts to rank order the nine themes, the children in general and the experts in terms of relevance to physical activity. From these results, possible versions of the scale were then created using the combined expert/children rankings. Each version was examined for content validity. Two versions of a scale resulted. These were sent to experts, parents, teachers and children in order to determine which one they liked better and to suggest any foreseeable problems. Once this information was collected, a beta (final prototype) version of the scale was created. Results. Nine common theme names were created from the response groupings. All four children agreed that they did understand and like each of the nine theme names. Experts and teachers agreed that full coverage of the content had been achieved. Children suggested a single wording change from "Being Accepted" to "Being Included". Five themes were selected for inclusion. The beta version of the scale included 12 forced choice statements, the first ten comparing all themes against one another followed by two anchor statements. Conclusion. At the outset it was recognized that it is essential to know what children think is important in their lives in order to serve as potential benefits in the development of effective physical activity promotion programs. This study developed a scale which could be used to determine what a population of children feel is important in order to focus health promotion programs for physical activity. The scale has strong face and content validity.

Becoming Peer Health Leaders: A Mixed-Methods Evaluation of a Youth Leadership Camp Preparing Peer Leaders for Participation in a Health Promotion Initiative.

Youth are critical partners in health promotion, but the process of training young people to become meaningfully involved is challenging. This mixed-methods evaluation considered the impact of a leadership camp in preparing 42 grade seven students to become peer health leaders in a ‘heart health’ initiative. The experiences of participants and their sense of agency were explored. Data were collected from pre and post camp surveys, focus groups, student journals and researcher observations. Findings indicate that relationships with peers and adults were key to agency development, and participants appeared to broaden their perspectives on the meanings of ‘health’ and ‘leadership.’ Significant changes on two sub-scales of the Harter Perceived Competence Scale for Children were also found. Suggestions for practice and further research are provided.

Development of a Chinese version WHO Self-Assessment Tool for Evaluating Health Promotion in Hospital

[Support Institutions:] Department of Administration of Health, University of Montreal, Canada Public Health School of Fudan University, Shanghai, China

Health promotion program implementation, a socio-technical networking process : a case study of a school-based nutrition intervention

Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal.

Mental Health Promotion: A Framework for Action and Education

This document is a revision of some major concepts of health promotion in order to provide a framework for the action of those who work in mental health. Since the Ottawa charter, new references on health can contribute significantly for the education and action of the mental health practitioner. In order to promote and enhance better and healthier ways if living as well as better life conditions. Mental health is considered as a tool for the understanding and construction of the sense of well being and well living. In our country our professional training programs have understood the importance of educating in a more integrated and holistic way in the search for creative approaches for problems we face in our every day life, based on the hope that a better country with more equity and justice, as well as better and healthier conditions can be more than just a dream.

Understanding the "black box" of a health-promotion program : keys to enable health among older persons aging in the context of migration

Although the need to make health services more accessible to persons who have migrated has been identified, knowledge about health-promotion programs (HPPs) from the perspective of older persons born abroad is lacking. This study explores the design experiences and content implemented in an adapted version of a group-based HPP developed in a researcher-community partnership. Fourteen persons aged 70-83 years or older who had migrated to Sweden from Finland or the Balkan Peninsula were included. A grounded theory approach guided the data collection and analysis. The findings showed how participants and personnel jointly helped raise awareness. The participants experienced three key processes that could open doors to awareness: enabling community, providing opportunities to understand and be understood, and confirming human values and abilities. Depending on how the HPP content and design are being shaped by the group, the key processes could both inhibit or encourage opening doors to awareness. Therefore, this study provides key insights into how to enable health by deepening the understanding of how the exchange of health-promoting messages is experienced to be facilitated or hindered. This study adds to the scientific knowledge base of how the design and content of HPP may support and recognize the capabilities of persons aging in the context of migration.

Impact of worksite health-promotion programs in hospital admission costs and medical leaves in a sample of brazilian companies

Programas de saúde e bem-estar têm sido adotados por empresas como forma de melhorar a saúde de empregados, e muitos estudos descrevem retornos econômicos positivos sobre os investimentos envolvidos. Entretanto, estudos mais recentes com metodologia melhor têm demonstrado retornos menores. O objetivo deste estudo foi investigar se características de programas de saúde e bem-estar agem como preditores de custos de internação hospitalar (em Reais correntes) e da proporção de funcionários que têm licença médica, entre Abril de 2014 e Maio de 2015, em uma amostra não-aleatória de empresas no Brasil, através de parceria com uma empresa gestora de ‘big data’ para saúde. Um questionário sobre características de programas de saúde no ambiente de trabalho foi respondida por seis grandes empresas brasileiras. Dados retirados destes seis questionários (presença e idade de programa de saúde, suas características – inclusão de atividades de screening, educação sobre saúde, ligação com outros programas da empresa, integração do programa à estrutura da empresa, e ambientes de trabalho voltado para a saúde – e a adoção de incentivos financeiros para aderência de funcionários ao programa), bem como dados individuais de idade, gênero e categoria de plano de saúde de cada empregado , foram usados para construir um banco de dados com mais de 76.000 indivíduos. Através de um modelo de regressão múltipla e seleção ‘stepwise’ de variáveis, a idade do empregado foi positivamente associada e a idade do programa de saúde e a categoria ‘premium’ de plano de saúde do funcionário foram negativamente associadas aos custos de internação hospitalar (como esperado). Inesperadamente, a inclusão de programas de screening e iniciativas de educação de saúde nos programas de saúde e bem-estar nas empresas foram identificados como preditores positivos significativos para custos de admissão hospitalar. Para evitar a inclusão errônea de licenças-maternidade, apenas os dados de licença médica de pacientes do sexo masculino foram analisados (dados disponíveis apenas para duas entre as companhias incluídas, com um total de 18.957 pacientes do sexo masculino). Analisando estes dados através de um teste Z para comparação de proporções, a empresa com programa de saúde que inclui atividades voltadas a cessação de hábitos ruins (como tabagismo e etilismo), controle de diabetes e hipertensão, e que adota incentivos financeiros para a aderência de funcionários ao programa tem menor proporção de empregados com licençca médica no período analisado, quando comparada com a outra empresa que não tem estas características (também conforme esperado). Entretanto, a companhia com menor proporção de funcionários com licença médica também foi aquela que adota programa de screening entre as atividades de seu programa de saúde. Potenciais fontes de ameaça à validade interna e externa destes resultados são discutidas, bem como possíveis explicações para a associação entre programas de screening e educação médica a piores indicadores de saúde nesta amostra de companhias são discutidas. Novos estudos com melhor desenho, com amostras maiores e randômicas são necessários para validar estes resultados e possivelmente melhorar a validade interna e externa destes resultados.

Prevalence of health promotion programs in primary health care units in Brazil

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Knowledge of professionals from public service on oral health promotion for babies

Health promotion seeks to integrate oral health practices to other public health, by building healthy public policy and the development of strategies directed to all people in the community. This study aimed to analyze the knowledge and actions on the infants’ oral health promotion by dentists, pediatricians and nurses. Were interviewed dentists (n=34), pediatricians (n=31) and nurses (n=26) from Basic Health Units, Family Health Units and Centers for Education and Recreation in Araraquara - SP about knowledge and actions on oral health promotion for infants, by filling out a pre-tested questionnaire. Data were analyzed by association tests. Generally, the professionals are aware of and perform actions on oral health promotion for infants. Most participants were female; mean age of 39.9 years, worked in Basic Health Units, had over 10 years of graduation, demonstrated knowledge on and considered oral health promotion in infants very important. The time since graduation and actions on oral health promotion for infants were associated (p<0.05) with issues concerning the use of dental floss. That most of the professionals who participated in this study know about, take actions on oral health promotion for infants and consider them crucial.