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.

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.

Checklist of health promotion environments at worksites (CHEW): Development and measurement characteristics

Purpose. Health promotion policy frameworks, recent theorizing, and research all emphasize understanding and mobilizing environmental influences to change particular health-related behaviors in specific settings. The workplace is a key environmental setting. The Checklist of Health Promotion Environments at Worksites (CHEW) was designed as a direct observation instrument to assess characteristics of worksite environments that are known to influence health-related behaviors. Methods. The CHEW is a 112-item checklist of workplace environment features hypothesized to be associated, both positively and negatively, with physical activity, healthy eating, alcohol consumption, and smoking. The three environmental domains assessed are (1) physical characteristics of the worksite, (2) features of the information environment, and (3) characteristics of the immediate neighborhood around the workplace. The conceptual rationale and development studies for the CHEW are described, and data from observational studies of 20 worksites are reported. Results. The data on CHEW-derived environmental attributes showed generally good reliability and identified meaningful sets of variables that plausibly may influence health-related behaviors. With the exception of one information environment attribute, intraclass correlation coefficients ranged from 0.80 to 1.00. Descriptive statistics on selected physical and information environment characteristics indicated that vending machines, showers, bulletin boards, and signs prohibiting smoking were common across worksites. Bicycle racks, visible stairways, and signs related to alcohol consumption, nutrition, and health. promotion were relatively uncommon. Conclusions. These findings illustrate the types of data on environmental attributes that can be derived, their relevance for program planning, and how they can characterize variability across worksites. The CHEW is a promising observational measure that has the potential to assess environmental influences on health behaviors and to evaluate workplace health promotion programs.

Intergenerational interaction in health promotion: a qualitative study in Brazil

OBJECTIVE: In 1994 a pilot intergenerational project was started in the city of Taguatinga, Brazil, to promote the well-being of both elderly and adolescent populations using reminiscence processes as a means of interaction. The purpose of the study is to evaluate the project from the participants' viewpoint and to improve the contribution of those age groups in building up social capital. METHODS: From November 1999 to April 2000 a qualitative study using focus groups technique was conducted. Using a discussion guide, 9 groups of students, ranging in age from 13 to 19 years old, and 3 groups of elderly aged 60 years and over were interviewed to collect data regarding their interaction before and after an intergenerational program. RESULTS: The main findings suggested a change in attitude of young people toward old age and elderly people. Participating elderly people reported improvement in their health status. For both age groups the findings suggested a better understanding between generations. CONCLUSIONS: It seems that reminiscence intergenerational activity contributes to building up mutual trust and reciprocity. These results seem to indicate this is an alternative for investing in social capital and improving participants' well-being. However, further work is needed to support these findings.

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

OBJECTIVE Assessment of prevalence of health promotion programs in primary health care units within Brazil’s health system. METHODS We conducted a cross-sectional descriptive study based on telephone interviews with managers of primary care units. Of a total 42,486 primary health care units listed in the Brazilian Unified Health System directory, 1,600 were randomly selected. Care units from all five Brazilian macroregions were selected proportionally to the number of units in each region. We examined whether any of the following five different types of health promotion programs was available: physical activity; smoking cessation; cessation of alcohol and illicit drug use; healthy eating; and healthy environment. Information was collected on the kinds of activities offered and the status of implementation of the Family Health Strategy at the units. RESULTS Most units (62.0%) reported having in place three health promotion programs or more and only 3.0% reported having none. Healthy environment (77.0%) and healthy eating (72.0%) programs were the most widely available; smoking and alcohol use cessation were reported in 54.0% and 42.0% of the units. Physical activity programs were offered in less than 40.0% of the units and their availability varied greatly nationwide, from 51.0% in the Southeast to as low as 21.0% in the North. The Family Health Strategy was implemented in most units (61.0%); however, they did not offer more health promotion programs than others did. CONCLUSIONS Our study showed that most primary care units have in place health promotion programs. Public policies are needed to strengthen primary care services and improve training of health providers to meet the goals of the agenda for health promotion in Brazil.

Validation of an instrument to evaluate health promotion at schools

ABSTRACT OBJECTIVE To validate an instrument designed to assess health promotion in the school environment. METHODS A questionnaire, based on guidelines from the World Health Organization and in line with the Brazilian school health context, was developed to validate the research instrument. There were 60 items in the instrument that included 40 questions for the school manager and 20 items with direct observations made by the interviewer. The items’ content validation was performed using the Delphi technique, with the instrument being applied in 53 schools from two medium-sized cities in the South region of Brazil. Reliability (Cronbach’s alpha and split-half) and validity (principal component analysis) analyses were performed. RESULTS The final instrument remained composed of 28 items, distributed into three dimensions: pedagogical, structural and relational. The resulting components showed good factorial loads (> 0.4) and acceptable reliability (> 0.6) for most items. The pedagogical dimension identifies educational activities regarding drugs and sexuality, violence and prejudice, auto care and peace and quality of life. The structural dimension is comprised of access, sanitary structure, and conservation and equipment. The relational dimension includes relationships within the school and with the community. CONCLUSIONS The proposed instrument presents satisfactory validity and reliability values, which include aspects relevant to promote health in schools. Its use allows the description of the health promotion conditions to which students from each educational institution are exposed. Because this instrument includes items directly observed by the investigator, it should only be used during periods when there are full and regular activities at the school in question.

Evaluation of a multicomponent worksite health promotion program for cardiovascular risk factors-correcting for the regression towards the mean effect.

BACKGROUND: We assessed the impact of a multicomponent worksite health promotion program for0 reducing cardiovascular risk factors (CVRF) with short intervention, adjusting for regression towards the mean (RTM) affecting such nonexperimental study without control group. METHODS: A cohort of 4,198 workers (aged 42 +/- 10 years, range 16-76 years, 27% women) were analyzed at 3.7-year interval and stratified by each CVRF risk category (low/medium/high blood pressure [BP], total cholesterol [TC], body mass index [BMI], and smoking) with RTM and secular trend adjustments. Intervention consisted of 15 min CVRF screening and individualized counseling by health professionals to medium- and high-risk individuals, with eventual physician referral. RESULTS: High-risk groups participants improved diastolic BP (-3.4 mm Hg [95%CI: -5.1, -1.7]) in 190 hypertensive patients, TC (-0.58 mmol/l [-0.71, -0.44]) in 693 hypercholesterolemic patients, and smoking (-3.1 cig/day [-3.9, -2.3]) in 808 smokers, while systolic BP changes reflected RTM. Low-risk individuals without counseling deteriorated TC and BMI. Body weight increased uniformly in all risk groups (+0.35 kg/year). CONCLUSIONS: In real-world conditions, short intervention program participants in high-risk groups for diastolic BP, TC, and smoking improved their CVRF, whereas low-risk TC and BMI groups deteriorated. Future programs may include specific advises to low-risk groups to maintain a favorable CVRF profile.

Expectation to improve cardiovascular risk factors control in participants to a health promotion program.

BACKGROUND: We assessed expectations to improve cardiovascular disease risk factors (CVD-RF) in participants to a health promotion program. PARTICIPANTS AND METHODS: Blood pressure (BP), blood glucose (BG), blood total cholesterol (TC), body mass index (BMI), and self-reported smoking were assessed in 1,598 volunteers from the general public (men: 40%; mean age: 56.7 +/- 12.7 years) participating in a mobile health promotion program in the Vaud canton, Switzerland. Participants were asked about their expectation to have their CVD-RF improved at a next visit scheduled 2-3 years later. RESULTS: Expectation for improved control was found in 90% of participants with elevated BP, 91% with elevated BG, 45% with elevated TC, 44% who were overweight, and 35% who were smoking. Expectation for TC improvement was reported more often by men, persons with high level of TC, and persons who had consulted a doctor in the past 12 months. Expectations to lose weight and to quit smoking were found more often in younger persons than the older ones. CONCLUSION: Volunteers from the general population participating in a health promotion program expected improved control more often for hypertension and dysglycemia than for dyslipidemia, overweight and smoking.

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

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

Caries-preventive effectiveness of fluoride varnish as adjunct to oral health promotion and supervised tooth brushing in preschool children: a double-blind randomized controlled trial.

OBJECTIVES To evaluate the effect of biannual fluoride varnish applications in preschool children as an adjunct to school-based oral health promotion and supervised tooth brushing with 1000ppm fluoride toothpaste. METHODS 424 preschool children, 2-5 year of age, from 10 different pre schools in Athens were invited to this double-blind randomized controlled trial and 328 children completed the 2-year programme. All children received oral health education with hygiene instructions twice yearly and attended supervised tooth brushing once daily. The test group was treated with fluoride varnish (0.9% diflurosilane) biannually while the control group had placebo applications. The primary endpoints were caries prevalence and increment; secondary outcomes were gingival health, mutans streptococci growth and salivary buffer capacity. RESULTS The groups were balanced at baseline and no significant differences in caries prevalence or increment were displayed between the groups after 1 and 2 years, respectively. There was a reduced number of new pre-cavitated enamel lesions during the second year of the study (p=0.05) but the decrease was not statistically significant. The secondary endpoints were unaffected by the varnish treatments. CONCLUSIONS Under the present conditions, biannual fluoride varnish applications in preschool children did not show significant caries-preventive benefits when provided as an adjunct to school-based supervised tooth brushing with 1000ppm fluoride toothpaste. CLINICAL SIGNIFICANCE In community based, caries prevention programmes, for high caries risk preschool children, a fluoride varnish may add little to caries prevention, when 1000ppm fluoride toothpaste is used daily.

Strategies of Active Dissemination of Workplace Health Promotion

Purpose – A growing body of literature provides evidence for the efficacy of workplace health promotion (WHP). However, little is known about effective dissemination strategies for WHP interventions. The purpose of this paper is to describe how a WHP agency in Zurich, Switzerland, used bulk mailings, information events, telephone marketing and free initial consultations for the large-scale geographic marketing of WHP services, with a focus on tobacco prevention (TP). Design/methodology/approach – To analyze the number of companies responding positively to solicitation, examine the predictors of positive responses and explore the reasons for negative responses, the authors used both quantitative (e.g. a standardized questionnaire) and qualitative (telephone interviews) methods. Findings – The results show that except for telephone marketing (69 percent), the success rates of dissemination activities were very low (3-9 percent). Predictors for a positive response were institutionalization of WHP, the representative’s personal concern about TP, and problems with environmental tobacco smoke within the company. The most prominent reason for a negative Response was that the companies had already implemented TP measures by themselves and needed no further external support. Practical implications – It is suggested that TP was the wrong emphasis for a WHP program to be disseminated at that particular time, because a law on protection from passive smoking was introduced in Switzerland shortly afterwards. Originality/value – The study examines dissemination strategies under real-life Consulting conditions. It builds on on a large sample of companies and uses both quantitative and qualitative research methods. It reports specific numbers and success rates of marketing activities and thereby contributes to the knowledge about an important issue for intervention planning in the field of WHP.

FAMILY MEDICINE RESIDENT SURVEY ON HEALTH PROMOTION (PERSONAL EXPECTATIONS, BEHAVIORS, PERCEIVED SELF-EFFICACY, COGNITIVE ASSESSMENT, OUTCOME EXPECTANCY)

This study was designed to test the theoretical predictors of personal efficacy expectations among family medicine resident physicians for helping their patients change thirteen high risk health behaviors. A survey questionnaire was sent to 781 family medicine residents in the six state south central region. The response rate was 60 percent. The hypothesized relationship between lower levels of difficulty and higher personal efficacy expectations was supported by the data. Effort was a significant predictor of perceived self efficacy for health behaviors considered less difficult to change. Situational support did not prove to be a significant predictor for many of the health behaviors. Rate and pattern of success were consistent and significant predictors of perceived self efficacy for helping patients change all thirteen of the health behaviors. Modeling of effective methods by faculty was a significant predictor of efficacy expectations for several but not all of the behaviors. Personal modeling was a significant predictor of perceived efficacy for helping patients change behaviors related to alcohol misuse and exercise. The respondents personally modeled positive health behaviors more consistently than their older colleagues or the general population.^ The results of this study lend substantially to the usefulness of the cognitive-behavioral theory of perceived self efficacy and provide a mechanism for assessing the predictors of personal efficacy expectations of family medicine resident physicians. The findings are expected to have direct implications for faculty to institute systematic programs of interventions designed to increase residents' perceptions of efficacy in facilitating more positive health behaviors among their patients. ^

Attitudes and beliefs of oral health professionals regarding their role in health promotion

Issues addressed: The study was designed to gain an understanding of health promotion from the perspective of oral health professionals employed in the public sector during a transition in the focus of services. Methods: A cross sectional survey of oral health professionals employed by Queensland Health was conducted between March and April 2001. Staff were randomly sampled from employment records. A proportionate random sample, stratified across professional groups and geographical zones, was selected. Results: While the majority of the health professionals surveyed perceived oral health promotion to be part of their role, they felt ill equipped to adopt it. Professional groups differed in their confidence and perception of how to promote health in their clinical setting, existing barriers they encountered and their participation in health promotion programs. Conclusions: Strategies to improve the adoption of the oral health promotion role within Queensland public oral health services include: regular in- service and education for all staff regarding health promotion issues; increased cohesion of the oral health team; intersectorial collaboration; supportive district management; and a refocus to primary health care and public health concepts

Physical activity measurement - a primer of health promotion

As the importance of physical activity is recognised in health promotion, the task of measuring it becomes a central research and practice challenge. Measurement of physical activity is important to policy makers interested in population surveillance, as well as to practitioners interested in programme evaluation and research. This review outlines 'best practice' in physical activity measurement, and provides an inventory of established physical activity and related measures for use in health promotion programme evaluation, research and surveillance at the national and local level. [PUBLICATION ABSTRACT]

“SINGING CHASES AWAY THE BLUES.” KNOWLEDGE AND USE OF THE VOICE AS HEALTH PROMOTION RESOURCES FOR CHORISTERS

Objetivo: Compreender o conhecimento e o uso da voz por mulheres que cantam em coral e as repercussões para a promoção da saúde. Métodos: Realizou-se estudo qualitativo, de dezembro de 2011 a fevereiro de 2012, com 13 mulheres de 23 a 66 anos, membros de um coral de uma universidade, em Fortaleza, Ceará, Brasil. Coletaram-se os dados através de entrevista semiestruturada. Aplicou-se a análise temática para organizar os resultados em categorias, analisando-as à luz do interacionismo simbólico. Resultados: Identificaram-se dois núcleos de sentido: conhecimento sobre voz e uso da voz. As coralistas definiram a voz como meio de comunicação, identidade pessoal e forma para expressar emoções. Elas não demonstraram conhecimento consistente sobre os aspectos anatômicos e fisiológicos da voz, mas as definições apresentadas mostram que elas entendem que a voz permeia espaços pessoais, sociais e profissionais. A voz profissional e o envelhecimento destacaram-se no contexto do uso vocal. As participantes reconhecem que o conhecimento e o uso da voz podem ser aprimorados pelas atividades no coral, o que remete à promoção da saúde. Conclusão: As coralistas apresentam conhecimento limitado sobre a saúde vocal, porém, compreendem os efeitos benéficos do coral sobre sua saúde, ampliando a compreensão sobre a voz; isso estimula a adoção de hábitos saudáveis e de medidas preventivas, o que favorece o uso vocal.