Treatment non-adherence in teenage and young adult patients with cancer

Adhering to treatment can be a significant issue for many patients diagnosed with chronic health conditions and this has been reported to be greater during the adolescent years. However, little is known about treatment adherence in teenage and young adult (TYA) patients with cancer. To increase awareness of the adherence challenges faced by these patients, we have reviewed the published work. The available evidence suggests that a substantial proportion of TYA patients with cancer do have difficulties, with reports that up to 63% of patients do not adhere to their treatment regimens. However, with inconsistent findings across studies, the true extent of non-adherence for these young patients is still unclear. Furthermore, it is apparent that there are many components of the cancer treatment regimen that have yet to be assessed in relation to patient adherence. Factors that have been shown to affect treatment adherence in TYA patients include patient emotional functioning (depression and self-esteem), patient health beliefs (perceived illness severity and vulnerability), and family environment (parental support and parent–child concordance). Strategies that foster greater patient adherence are also identified. These strategies are multifactorial, targeting not only the patient, but the health professional, family, and treatment regimen. This review highlights the lack of interventional studies addressing treatment adherence in TYA patients with cancer, with only one such intervention being identified: a video game intervention focusing on behavioural issues related to cancer treatment and care. Methodological issues in measuring adherence are addressed and suggestions for improving the design of future adherence studies highlighted, of which there is a great need.

Income differences in food consumption in the 1995 Australian national nutrition survey

Objective: To assess the relationships between an index of per capita income and the intake of a variety of individual foods as well as groups of food for men and women in different age groups. Design: Cross-sectional national survey of free-living men and women. Subjects: A sample of 5053 males and 5701 females aged 18 y and over who completed the Australian National Nutrition Survey 1995. Methods: Information about the frequency of consumption of 88 food items was obtained. On the basis of scores on the Food Frequency Questionnaire, regular and irregular consumers of single foods were identified. The relationships between regularity of consumption of individual foods and per capita income were analysed via contingency tables. Food variety scores were derived by assigning individual foods to conventional food group taxonomies, and then summing up the dichotomised intake scores for individual foods within each food group. Two-way ANOVA (income age group) were performed on the food variety scores for males and females, respectively. Results: Per capita income was extensively related to the reported consumption of individual foods and to total and food group variety indices. Generally, both men and women in low income households had less varied diets than those in higher-income households. However, several traditional foods were consumed less often by young high-income respondents, especially young women. Conclusions: Major income differentials in food variety occur in Australia but they are moderated by age and gender. Younger high-income women, in particular, appear to have rejected a number of traditional foods, possibly on the basis of health beliefs. The findings also suggest that data aggregation has marked effects on income and food consumption relationships.

Assessing cultural and linquistic appropriateness of the Rose Angina questionnaire in three ethnic groups

Introduction. Meeting the needs of migrant groups in Europe requires cross-culturally valid questionnaires, a substantial challenge to researchers. The Rose Angina Questionnaire (RAQ) is an important measure of coronary heart disease prevalence. It consists of seven items that collectively yield a diagnosis of angina. It has been shown to perform inconsistently across some ethnic groups in Britain. This study aimed to assess the need for modifying the RAQ for cross-culturally valid use in the three main ethnic groups in Scotland.

Methods. Interviews were carried out with Pakistani Punjabi speakers (n=26), Chinese Cantonese speakers (n=29) and European-origin English speakers (n=25). Bilingual project workers interviewed participants and provided translation and commentary to the English-speaking researcher. Participants were asked about general and cardiovascular health beliefs and behaviours, and about attitudes to pain and chest pain. They were also asked to comment on their understanding of an existing version of the RAQ in their language.

Results. No dominant themes in the cultural construction of health, pain or cardiovascular knowledge emerged that may significantly influence RAQ response between language groups. Problems were encountered with the Punjabi and Cantonese translations of the RAQ. For example, the translation for “chest” was interpreted by some Pakistani and fewer Chinese women to mean “breasts”. “Walking uphill” was translated in Chinese as “walking the hill”, without stipulation of the direction, so that some Cantonese speakers interpreted the question as meaning walking downhill. In addition, many Chinese interpreted RAQ items to be referring to breathlessness rather than chest pain due to ambiguous wording.

Conclusion. Existing Punjabi and Cantonese versions of the RAQ should be modified before being used in multi-ethnic surveys. Current versions are unlikely to be yielding data that is comparable across groups. Other language versions also require similar investigation to study the cardiovascular health of Europe’s migrant groups.

Lay meanings and practices of medicinal use in a multicultural context : a qualitative study among Anglo-Celtic and Russian Australians in Melbourne

Describes medicinal use among Anglo-Celtic and Russian Australians. Cultural constructions of medicines are embedded in health beliefs; shaped by experiences with health care within socio-economic and political contexts. Cultural practices of medicinal use are best understood in the context of lay models of rationality and recognition of the conflict existing between the lay and expert models.

A qualitative investigation of obese men's experiences with their weight

Objectives: To investigate obese men's health behaviors and strategies for change. Methods: Qualitative interviews with 36 men (BMI 30 and over). Results: All men felt personally responsible for their weight gain. Sedentary lifestyles, stress, lack of worklife balance and weight-based stigma were all significant causes of weight gain and barriers to weight loss. These factors also contributed to men's unwillingness to seek help for their overweight. Conclusion: Addressing the self-blame and stigma associated with obesity is important in developing strategies to improve the health and well-being of obese men.

Maintenance of cultural identity

The aim of this qualitative study is to explore the transmission of health beliefs among three generations of Greek families in Melbourne, Australia and the way they understand both health and disease as an aspect of cultural maintenance in the context of the larger Australian society. More specifically this paper will discuss the extent to which the immigrant generation has created a memory culture and how this has affected the sense of cultural identity of the first and second generation Greek Australians. Unlike the mainstream Australian community, the Greek population has so far maintaned a traditional framework due to the importance they ascribe to both culture and traditions that have been handed down from from the immigrant generation to the first and second generation Greek Australians. However, it is not only the immigrant generation that holds on to these traditions. More and more the first and second generation Greek Australians are set on maintaining their Hellenic heritage, and many community organizations in Melbourne, Australia are now largely supported by the younger generations. The results of this study have practical applications in elucidating how the memory culture that has been created by the immigrant generation may impact this cultural group’s conceptualization of health and the potential this may have to impact the use of health care by providin insight into the role of culture in forming individual or group conceptulizations of health in this community.

The Greek Diaspora of Melboure, Australia, through the eyes of the second generation Greek Australians

Melbourne has a large and dynamic Greek community that began to form in the 1950s with migration to Australia in the years following the Second World War and the Greek Civil War. The elders of this community, in particular, have tried to ensure that their culture and traditions are kept alive and are handed down from generation to generation. The long history and cultural richness of the Greek tradition is a great source of pride to its members, and this is a key characteristic of the Greek community of Australia. Young and old Greek Australians speak of their country of origin with great pride and passion, as it remains central to their perception of nationality and ethnicity. This importance placed on the retention of the language and culture of their nation of origin means that cultural transmission across generations is of great significance to the community and can provide valuable insight into their interpretation of their own experiences. This paper will present findings from a three generation study about health beliefs and practices of women in the Melbourne Greek community. The experience of granddaughters, who represent the second Australian generation, and how they see their grandmothers’ experience as migrants to Australia will be discussed. The impact of the Diaspora phenomenon and the creation of a Greek community in Melbourne will be considered in the context of health, memory, religion, Greek culture, food, and personal and group identity.

The Greek diaspora of Melbourne: Australia through the eyes of the second generation Greek Australian

form in the 1950s with migration to Australia in the years following the Second World War and the Greek Civil War. The elders of this community, in particular, have tried to ensure that their culture and traditions are kept alive and are handed down from generation to generation. The long history and cultural richness of the Greek tradition is a great source of pride to its members, and this is a key characteristic of the Greek community of Australia. Young and old Greek Australians speak of their country of origin with great pride and passion, as it remains central to their perception of nationality and ethnicity. This importance placed on the retention of the language and culture of their nation of origin means that cultural transmission across generations is of great significance to the community and can provide valuable insight into their interpretation of their own experiences. This paper will present findings from a three generation study about health beliefs and practices of women in the Melbourne Greek community. The experience of granddaughters, who represent the second Australian generation, and how they see their grandmothers’ experience as migrants to Australia will be discussed. The impact of the Diaspora phenomenon and the creation of a Greek community in Melbourne will be considered in the context of health, memory, religion, Greek culture, food, and personal and group identity.

Influência de fatores individuais, organizacionais e relativos ao trabalho na adesão às precauções padrão

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)

The CUPID (Cultural and Psychosocial Influences on Disability) Study: Methods of Data Collection and Characteristics of Study Sample

Background: The CUPID (Cultural and Psychosocial Influences on Disability) study was established to explore the hypothesis that common musculoskeletal disorders (MSDs) and associated disability are importantly influenced by culturally determined health beliefs and expectations. This paper describes the methods of data collection and various characteristics of the study sample. Methods/Principal Findings: A standardised questionnaire covering musculoskeletal symptoms, disability and potential risk factors, was used to collect information from 47 samples of nurses, office workers, and other (mostly manual) workers in 18 countries from six continents. In addition, local investigators provided data on economic aspects of employment for each occupational group. Participation exceeded 80% in 33 of the 47 occupational groups, and after pre-specified exclusions, analysis was based on 12,426 subjects (92 to 1018 per occupational group). As expected, there was high usage of computer keyboards by office workers, while nurses had the highest prevalence of heavy manual lifting in all but one country. There was substantial heterogeneity between occupational groups in economic and psychosocial aspects of work; three-to fivefold variation in awareness of someone outside work with musculoskeletal pain; and more than ten-fold variation in the prevalence of adverse health beliefs about back and arm pain, and in awareness of terms such as "repetitive strain injury" (RSI). Conclusions/Significance: The large differences in psychosocial risk factors (including knowledge and beliefs about MSDs) between occupational groups should allow the study hypothesis to be addressed effectively.

An ethnographic study of home remedy use for African-American children

Background and significance. The use of herbs and other remedies by adult and elderly African-Americans has been documented. However, little is understood regarding the use of herbs for African-American children. The purpose of this study was to document and describe the historical and present day uses of herbal and other remedies, specifically for the health and illness of African-American children. This information will provide health care providers with a better understanding of their African-American patients. This information may also contribute to the emerging appreciation of indigenous uses of phytotherapeutics. ^ Methods. A focused ethnographic approach was used to describe the cultural context, including the beliefs, values, customs, and behaviors of a particular culture. The use of intensive fieldwork, including participant observation, audiotaped formal interviews, photographs, and specimen collection of plants helped to describe herb use in this population. Information on the growing, harvesting, preparation, and storage of these plant remedies, as well as the amount and dosage of these compounds was collected in a typology. Detailed information was gathered to discern how, when, and under what conditions these remedies were used and their expected results. Further data collection focused on the history of herbal use, and explanations for how and why informants thought the herbs work. ^ Setting and participants. The setting for this study was in East Texas and field work extended over the period of one year. Thirty African-Americans, age 38 to 98, were interviewed for the study. The African-American population in this area has been relatively stable, with roots dating back prior to the reconstruction period, which allowed excellent historical information. Informants were chosen by a nominated sampling technique starting with two key informants knowledgeable about the use of home remedies for children. ^ Findings. The findings of this study suggest that African-American children in East Texas have a long history of receiving herbs and home remedies for health promotion and illness. Data further suggests that there is a strong connection between spirituality and the health beliefs and practices of this community. This spiritual component underlies the accuracy of oral recall for remedies that have been used over many generations and the use of natural folk remedies. A typology of the herbal remedies was developed with folk and Latin name, herb place of origin, known scientific properties, and informant folk usage and dosage information. ^

The effectiveness of a promotora-led intervention for Mexican Americans with type 2 diabetes

Purpose. The purpose of this randomized control repeated measures trial was to determine the effectiveness of a self-management intervention led by community lay workers called promotoras on the health outcomes of Mexican Americans with type 2 diabetes living in a major city on the Texas - Mexico border. The specific aims of this study, in relation to the intervention group participants, were to: (1) decrease the glycosylated hemoglobin (A1c) blood levels at the six-month assessment, (2) increase diabetes knowledge at the three and six-month assessments, and (3) strengthen the participants' beliefs in their ability to manage diabetes at the three and six-month assessments.^ Methods. One hundred and fifty Mexican American participants were recruited at a Catholic faith-based clinic and randomized into an intervention group and a usual-care control group. Personal characteristics, acculturation and baseline A1c, diabetes knowledge and diabetes health beliefs were measured. The six-month, two-phase intervention was culturally specific and it was delivered entirely by promotoras. Phase One of the intervention consisted of sixteen hours of participative group education and bi-weekly telephone contact follow-up. Phase Two consisted of bi-weekly follow-up using inspirational faith-based health behavior change postcards. The A1c levels, diabetes knowledge and diabetes health beliefs were measured at baseline, and three and six months post-baseline. The mean changes between the groups were analyzed using analysis of covariance. ^ Results. The 80% female sample, with a mean age of 58 years, demonstrated very low: acculturation, income, education, health insurance coverage, and strong Catholicism. No significant changes were noted at the three-month assessment, but the mean change of the A1c levels (F (1, 148 = 10.28, p < .001) and the diabetes knowledge scores (F (1, 148 = 9.0, p < .002) of the intervention group improved significantly at six months, adjusting for health insurance coverage. The diabetes health belief scores decreased in both groups.^ Conclusions. This study demonstrated that an intervention led by promotoras could result in decreased A1c levels and increased diabetes knowledge in spite of the very low acculturation, educational level and insurance coverage of the intervention group participants. Clinical implications and recommendations for future research are suggested. ^

Border intervention by Promotores for type 2 diabetes

Purpose of the study. This study had two components. The first component of the study was the development and implementation of an infrastructure that integrated Promotores who teach diabetes self-management into a community clinic. The second component was a six-month randomized clinical trial (RCT) designed to test the effectiveness of the Promotores in changing knowledge, beliefs, and HbA1c levels among Mexican American patients with type 2 diabetes. ^ Methods. Starfield's adaptation of the Donbedian structure, process, and outcome methodology was used to develop a clinic infrastructure that allowed the integration of Promotores as diabetes educators. The RCT of the culturally sensitive Promotores-led 10-week diabetes self-management program compared the outcomes of 63 patients in the intervention group with 68 patients in a wait-list, usual care control group. Participants were Mexican Americans, at least 18 years of age, with type 2 diabetes, who were patients at a Federally Qualified Health Center on the Texas-Mexico border. At baseline, three months, and six months, data were collected using the Diabetes Knowledge Questionnaire (DKQ, the Health Beliefs Questionnaire (HBQ, and HbA1c levels were drawn by the clinic laboratory. A mixed model methodology was used to analyze the data. ^ Results. The infrastructure to support a Promotores-led diabetes self-management course designed in concert with administration, the physicians, and the CDE, resulted in (1) employment of Promotores to teach diabetes self-management courses; (2) integration of provider and nurse oversight of course design and implementation; (3) management of Promotora training, and the development of teaching competencies and skills; (4) coordination of care through communication and documentation policies and procedures; (5) utilization of quality control mechanisms to maintain patient safety; and (6) promotion of a culturally competent approach to the educational process. The RCT resulted in a significant improvement in the intervention group's DKQ scores over time (F [1, 129] = 4.77, p = 0.0308), and in treatment by time (F [2, 168] = 5.85, p = 0.0035). Neither the HBQ scores nor the HbA1c changed over time. However, the baseline HbA1c was 7.49, almost at the therapeutic level. The DKQ, HBQ, and HbA1c results were significantly affected by age; the DKQ and HbA1c by years with diabetes. ^ Conclusions. The clinic model provides a systematic approach to safely address the educational needs of large numbers of patients with type 2 diabetes who live in communities that suffer from a lack of health care professionals. The Promotores-led diabetes self-management course improved the knowledge of patients with diabetes and may be a culturally sensitive strategy for meeting patient educational needs. The low baseline HbA1c levels in this border community suggested that patients in this Federally Qualified Health Center on the Texas-Mexico border were experiencing good medical management of their diabetes. ^

Measuring the quality of life of patients with diabetes: Validating the tool and determining the effects on quality of life

There are several tools for measuring quality of life (QoL) and specifically, health-related quality of life (HRQoL) for persons with diabetes. A commonly-used measure, the Diabetes Quality of Life (DQOL) Survey, developed for the Diabetes Control and Complications Trial (DCCT), has been used in several experimental settings, and its reliability and validity are well-established. However, it is considered too long to be of practical use in clinical settings. Because of this, a shortened version of the tool was used recently in the Community Diabetes Education (CoDE) Project in Dallas, Texas, a clinic-based patient education program that uses a specially-trained community healthcare worker to provide patient education. However, the modified scale has never been tested for reliability and validity. Thus, one goal of this thesis was to measure these psychometric properties of the scale. After establishing the reliability and validity, the results of the scale were analyzed to determine the effects of the intervention on the subjects’ quality of life. The changes in QoL scales were compared with changes in physiologic measures which are most closely allied with diabetes, including blood glucose levels, weight/BMI, co-morbidities and health beliefs in order to determine if there is a relationship between such measures and quality of life. The results of the reliability and validity testing were not conclusive. Measures of reliability and criterion validity were established, but these contrasted with poor measures of repeatability and content validity. The effect of the intervention on quality of life, however, was more significant, particularly regarding the impact of diabetes. Those who received the counseling had significantly higher scores on the Impact scale than those who did not, and the former group had much greater improvement in scores over the twelve month period than the latter group. ^

Psychosocial factors and musculoskeletal symptoms in a vulnerable working population in Nicaragua

This research is a secondary data analysis of the CUPID-INCA Nicaragua study, a cross-sectional study comparing psychosocial and physical factors on musculoskeletal symptoms among nurses, office workers and maquiladoras in Nicaragua. There were three objectives for this thesis. (1) To describe the study population according to their socio-demographic, psychosocial (i.e. work organization and health beliefs) and physical factors. (2) To estimate the prevalence of musculoskeletal disorders (MSDs) in the study population (nurses, office workers and maquilas). (3) To analyze and compare the trends of association between psychosocial factors and MSDs to that of physical factors and MSDs in the study population. Trends of association between MSDs and psychosocial factors were also compared between nurses, office workers and maquilas. ^ Majority of the total study population were females, middle aged, non smokers and had been on the job for more than five years. Prevalence rates of low back pain and upper extremity pain were 28% and 37% respectively in nurses, 17% and 34% in office workers and 18% and 31% in maquilas. Workers' health belief was significantly associated with MSDs in all three occupational groups. Psychosocial factors were not consistently associated more with MSDs than physical factors. Maquilas had more psychosocial factors statistically significantly associated with musculoskeletal symptoms than nurses and office workers. ^ The findings of this research suggest that both psychosocial and physical risk factors play a role on the prevalence of musculoskeletal symptoms in the three working populations in Nicaragua. Future research in this area should explore further, the risk of developing MSDs from workers' exposure to psychosocial factors as well as physical factors.^