Caffeine Intake and its Association with Disease Progression, Sleep Quality and Anxiety Symptoms and Nutritional Alterations in People Living with HIV in the Miami Adult Studies on HIV Cohort

Miami-Dade County has approximately 27,000 people living with HIV (PLWH), and the highest HIV incidence in the nation. PLWH have reported several types of sleep disturbances. Caffeine is an anorexic and lipolytic stimulant that may adversely affect sleep patterns, dietary intakes and body composition. High caffeine consumption (>250 mg. per day or the equivalent of >4 cups of brewed coffee) may also affect general functionality, adherence to antiretroviral treatment (ART) and HIV care. This study assess the relationship of high caffeine intake with markers of disease progression, sleep quality, insomnia, anxiety, nutritional intakes and body composition. A convenience sample of 130 PLWH on stable ART were recruited from the Miami Adult Studies on HIV (MASH) cohort, and followed for three months. After consenting, questionnaires on Modified Caffeine Consumption (MCCQ), Pittsburg Insomnia Rating Scale (PIRS), Pittsburg Sleep Quality Index (PSQI), Generalized Anxiety Disorder-7 (GAD-7), socio-demographics, drug and medication use were completed. CD4 count, HIV viral load, anthropometries, and body composition measures were obtained. Mean age was 47.89±6.37 years, 60.8% were male and 75.4% were African-Americans. Mean caffeine intake at baseline was 337.63 ± 304.97 mg/day (Range: 0-1498 mg/day) and did not change significantly at 3 months. In linear regression, high caffeine consumption was associated with higher CD4 cell count (β=1.532, P=0.049), lower HIV viral load (β=-1.067, P=0.048), higher global PIRS (β=1.776, P=0.046), global PSQI (β=2.587, P=0.038), and GAD-7 scores (β=1.674, P=0.027), and with lower fat mass (β=-0.994, P=0.042), energy intakes (β=-1.643, P=0.042) and fat consumption (β=-1.902, P=0.044), adjusting for relevant socioeconomic and disease progression variables. Over three months, these associations remained significant. The association of high caffeine with lower BMI weakened when excluding users of other anorexic and stimulant drugs such as cocaine and methamphetamine, suggesting that caffeine in combination, but not alone, may worsen their action. In summary, high caffeine consumption was associated with better measures of disease progression; but was also detrimental on sleep quality, nutritional intakes, BMI and body composition and associated with insomnia and anxiety. Large scale studies for longer time are needed to elucidate the contribution of caffeine to the well-being of PLWH.

Partner relationship in couples living with atrial fibrillation

The aim of this thesis was to describe and explore how the partner relationship of patient–partner dyads isaffected following cardiac disease and, in particular, atrial fibrillation (AF) in one of the spouses. The thesis is based on four individual studies with different designs: descriptive (I), explorative (II, IV), and cross-sectional (III). Applied methods comprised a systematic review (I) and qualitative (II, IV) and quantitative methods (III). Participants in the studies were couples in which one of the spouses was afflicted with AF. Coherent with a systemic perspective, the research focused on the dyad as the unit of analysis. To identify and describe the current research position and knowledge base, the data for the systematic review were analyzed using an integrative approach. To explore couples’ main concern, interview data (n=12 couples) in study II were analyzed using classical grounded theory. Associations between patients and partners (n=91 couples) where analyzed through the Actor–Partner Interdependence Model using structural equation modelling (III). To explore couples’ illness beliefs, interview data (n=9 couples) in study IV were analyzed using Gadamerian hermeneutics. Study I revealed five themes of how the partner relationship is affected following cardiac disease: overprotection, communication deficiency, sexual concerns, changes in domestic roles, and adjustment to illness. Study II showed that couples living with AF experienced uncertainty as the common main concern, rooted in causation of AF and apprehension about AF episodes. The theory of Managing Uncertainty revealed the strategies of explicit sharing (mutual collaboration and finding resemblance) and implicit sharing (keeping distance and tacit understanding). Patients and spouses showed significant differences in terms of self-reported physical and mental health where patients rated themselves lower than spouses did (III). Several actor effects were identified, suggesting that emotional distress affects and is associated with perceived health. Patient partner effects and spouse partner effects were observed for vitality, indicating that higher levels of symptoms of depression in patients and spouses were associated with lower vitality in their partners. In study IV, couples’ core and secondary illness beliefs were revealed. From the core illness belief that “the heart is a representation of life,” two secondary illness beliefs were derived: AF is a threat to life, and AF can and must be explained. From the core illness belief that “change is an integral part of life,” two secondary illness beliefs were derived: AF is a disruption in our lives, and AF will not interfere with our lives. Finally, from the core illness belief that “adaptation is fundamental in life,” two secondary illness beliefs were derived: AF entails adjustment in daily life, and AF entails confidence in and adherence to professional care. In conclusion, the thesis result suggests that illness, in terms of cardiac disease and AF, affected and influenced the couple on aspects such as making sense of AF, responding to AF, and mutually incorporating and dealing with AF in their daily lives. In the light of this, the thesis results suggest that clinicians working with persons with AF and their partners should employ a systemic view with consideration of couple’s reciprocity and interdependence, but also have knowledge regarding AF, in terms of pathophysiology, the nature of AF (i.e., cause, consequences, and trajectory), and treatments. A possible approach to achieve this is a clinical utilization of an FSN based framework, such as the FamHC. Even if a formalized FSN framework is not utilized, partners should not be neglected but, rather, be considered a resource and be a part of clinical caring activities. This could be met by inviting partners to take part in rounds, treatment decisions, discharge calls or follow-up visits or other clinical caring activities. Likewise, interventional studies should include the couple as a unit of analysis as well as the target of interventions.

Social participation and interventions supporting teenagers and young adults living with developmental coordination disorder (DCD): results from a Scoping Review

Background: The impact of Developmental Coordination Disorder (DCD) on teenagers’ and young adults’ participation is not well documented. This article aims to synthesize the current knowledge on social participation, which is the performance of an individual in realizing his daily activities and social roles within its life environment. Strategies and interventions to support youths (15-25 years old) with DCD were also synthesized. Methods: A scoping review interrogating three databases and using ‘snowballing techniques’ was performed to identify both scientific and grey literature published between 2004 and 2014. Over 1000 documents were screened and 57 were read in full; 28 met inclusion criteria. A charting form based on 12 life habits described in the Disability Creation Process (DCP) and developed by two reviewers was used to extract data and report the results. Results: All life habits were reported to be affected for teenagers and young adults with DCD, with education and interpersonal relationships being the most frequently discussed. During adolescence and adulthood, new tasks and subsequent difficulties emerge, such as driving. Mental health difficulties emerged as a key theme. Few strategies and interventions were described to support social participation of youths with DCD. Conclusion: Many life habits are challenging for youths with DCD, but few evidence-based strategies and interventions have been designed to help them to increase their social participation.

Expected values for steps/day in special populations

Objective To assemble expected values for free-living steps/day in special populations living with chronic illnesses and disabilities. Method Studies identified since 2000 were categorized into similar illnesses and disabilities, capturing the original reference, sample descriptions, descriptions of instruments used (i.e., pedometers, piezoelectric pedometers, accelerometers), number of days worn, and mean and standard deviation of steps/day. Results Sixty unique studies represented: 1) heart and vascular diseases, 2) chronic obstructive lung disease, 3) diabetes and dialysis, 4) breast cancer, 5) neuromuscular diseases, 6) arthritis, joint replacement, and fibromyalgia, 7) disability (including mental retardation/intellectual difficulties), and 8) other special populations. A median steps/day was calculated for each category. Waist-mounted and ankle-mounted instruments were considered separately due to fundamental differences in assessment properties. For waist-mounted instruments, the lowest median values for steps/day are found in disabled older adults (1214 steps/day) followed by people living with COPD (2237 steps/day). The highest values were seen in individuals with Type 1 diabetes (8008 steps/day), mental retardation/intellectual disability (7787 steps/day), and HIV (7545 steps/day). Conclusion This review will be useful to researchers/practitioners who work with individuals living with chronic illness and disability and require such information for surveillance, screening, intervention, and program evaluation purposes. Keywords: Exercise; Walking; Ambulatory monitoring

Cuidado em saúde à pessoa que vive com HIV/Aids: representações sociais de enfermeiros e médicos

O presente estudo tem como objetivos identificar as representações sociais do cuidado em saúde à pessoa que vive com HIV/aids para enfermeiros e médicos, descrevendo-as através das abordagens estrutural e processual; comparar as representações de enfermeiros e médicos; e analisar o cuidado em saúde à pessoa que vive com HIV/aids a partir das representações construídas por esses profissionais. Trata-se de um estudo descritivo com abordagem qualitativa, orientado pela Teoria das Representações Sociais. Os participantes do estudo foram, numa primeira etapa, 81 profissionais, sendo 54 médicos e 27 enfermeiros que trabalham em instituições públicas com atuação voltada à testagem e ao atendimento à pessoa que vive com HIV/aids, onde responderam ao questionário sócio-profissional e de evocações livres. Na segunda etapa, conforme conveniência, participaram da entrevista semi-estruturada, 20 enfermeiros e 18 médicos. Para a análise dos dados utilizamos a técnica do quadro de quatro casas com a utilização do software EVOC 2005 e a análise lexical pelo software Alceste 4.0. Quanto à estrutura representacional geral, destaca-se no Núcleo Central os termos acolhimento, adesão-tratamento, futuro e informação, que refletem a estruturação do processo assistencial da prática do cuidado no seio do programa. Na zona de contraste foram identificados atenção, cuidado e educação-saúde, que reforçam o Núcleo Central. Destaca-se, ainda, o léxico cuidado trazendo a dimensão imagética da representação. Na análise realizada pelo Alceste foram definidas cinco classes: estrutura e dinâmica de atendimento às pessoas que vivem com HIV/aids; o processo de transmissão e de prevenção do HIV/aids: entre vítimas, culpados e profissionais; memórias e história da epidemia de HIV/aids contada por profissionais; o cuidado no contexto da equipe multidisciplinar: composição, desafios e conceitos; o programa nacional DST/Aids e sua implementação nas unidades de saúde: avaliação, memória e capacitação. Realizamos ainda, a análise cruzada dos termos cuidado de enfermagem e cuidado médico. Ao final do estudo, consideramos que a representação do cuidado em saúde para este grupo de profissionais mostrou-se positiva apesar das dificuldades encontradas em seu cotidiano laboral. A representação do cuidado em saúde à pessoa vivendo com HIV/aids para médicos e enfermeiros apoia-se no programa DST/Aids e no conhecimento científico que embasa cada profissão. Os profissionais valorizam o trabalho multidisciplinar e procuram tratar o cliente de forma respeitosa, incentivando a adesão ao tratamento através de informação e do apoio psicológico.

Schizophrenia, brain disease and meta-analyses: Integrating the pieces and testing Fusar-Poli`s hypothesis

This paper aims to discuss and test the hypothesis raised by Fusar-Poli [Fusar-Poli P. Can neuroimaging prove that schizophrenia is a brain disease? A radical hypothesis. Medical Hypotheses in press, corrected proof] that ""on the basis of the available imaging literature there is no consistent evidence to reject the radical and provocative hypothesis that schizophrenia is not a brain disease"". To achieve this goal, all meta-analyses on `fMRI and schizophrenia` published during the current decade and indexed in Pubmed were summarized, as much as some other useful information, e.g., meta-analyses on genetic risk factors. Our main conclusion is that the literature fully supports the hypothesis that schizophrenia is a syndrome (not a disease) associated with brain abnormalities, despite the fact that there is no singular and reductionist pathway from the nosographic entity (schizophrenia) to its causes. This irreducibility is due to the fact that the syndrome has more than one dimension (e.g., cognitive, psychotic and negative) and each of them is related to abnormalities in specific neuronal networks. A psychiatric diagnosis is a statistical procedure; these dimensions are not identically represented in each diagnosticated case and this explains the existence of more than one pattern of brain abnormalities related to schizophrenia. For example, chronification is associated with negativism while the first psychotic episode is not; in that sense, the same person living with schizophrenia may reveal different symptoms and fMRI patterns along the course of his life, and this is precisely what defines schizophrenia since the time when it was called Dementia Praecox (first by pick then by Kraepelin). It is notable that 100% of the collected meta-analyses on `fMRI and schizophrenia` reveal positive findings. Moreover, all meta-analyses that found positive associations between schizophrenia and genetic risk factors have to do with genes (SNPs) especially activated in neuronal tissue of the central nervous system (CNS), suggesting that, to the extent these polymorphisms are related to schizophrenia`s etiology, they are also related to abnormal brain activity. (C) 2009 Elsevier Ltd. All rights reserved.

HIV disclosure decisions and social support among African-American women in Houston, Texas

African Americans make up 12.3% of the population but account for over half of the new HIV cases and 39% of the AIDS cases in 2003 (Centers for Disease Control and Prevention [CDC], 2003). African American women in particular accounted for 64% of these cases of HIV and 60% of the AIDS cases (Leigh & Huff, 2003). This study contributed to the knowledge about the disclosure process of women living with HIV/AIDS by documenting the relationship between social support and the disclosure process in the African American HIV/AIDS population.^ The study aims were to: (1) discuss the participants' self concept of support; (2) describe the common characteristics of the disclosure process; and (3) evaluate the common characteristics of support sought in a potential disclosure source. The ethnographic qualitative methodology was utilized to elicit participant narratives of HIV disclosure and social support. The researcher utilized a key informant interview methodology building on existing social and organizational relationships (Krueger, 1994) to gain access to the population. ^ Semi-structured interviews are a widely used and accepted qualitative research method for use with hard to reach populations and sensitive topics. Ten participants completed a 45 to 60 minute, one on one semi-structured interview covering social support and disclosure variables. Inclusion and exclusion criteria included: (1) self identified as a person living with HIV/AIDS; (2) African American); (3) female; (4) age 18-64 years old, (5) residence in Houston or surrounding counties.^ Themes generated from the interviews were (1) nondisclosure, (2) experiences with disclosure, (3) timing, (4) disclosure sources, and (5) coping. The themes suggest African American women living with HIV/AIDS come from different lifestyles but share similar experiences. Women utilize different strategies such as deciphering whom to trust and determining how much information to divulge in order to protect themselves or others.^ Although the sample group was small for this study, the results inform us about the various experiences each woman goes through as it relates to social support and disclosure and that each woman has to customize her response to the type of support she is receiving and her personal attitude about her disease.^

Who speaks up for Inés Fonseca? Representing violence against vulnerable subjects and the ethics of care in fictional narrative about Alzheimer’s disease:Ahora tocad música de baile (2004) by Andrés Barba

This paper studies the Spanish fictional novel by Andrés Barba, Ahora tocad música de baile (2004), one of the first cultural texts dealing entirely with Alzheimer’s disease (AD) to appear in Spain. It argues that the significance of Barba’s fictional novel rests on two important issues: the ethics of representation of violence against vulnerable subjects and the ethics of care. The paper analyses how these two issues allow Barba to create a story in which the verbal and physical abuse to which the person living with Alzheimer’s disease is subjected places the reader, on the one hand, as voyeur/witness of the abuse; and, on the other, as interpreter, and ultimately judge, of the fine line that separates euthanasia, assisted suicide, and murder. The open ending of the novel defers all ethical and moral judgment to the reader. It examines how the novel offers a monolithic perspective about AD, in which care is presented as a burden. In fact, this study shows that the novel’s multi-layered structure and polyphonic nature places the emphasis on stigmas, stereotypes and negative metaphors around AD, as found in contemporary social discourses.

I Must Do the Post - Using Poetry for Raising Dementia Awareness

This paper reviews the use of a poem written by a care assistant as part of a dementia awareness course. the author of the poem went on to use the poem to help staff within the care home gain an insight and to promote reflection and discussion about caring for the person living with dementia as part of a training programme. an evaluation of its use was a also undertaken and staff reported that this poem was thought provoking, insightful and had helped them to reflect on how they work with people living with dementia.

Living long-term with acquired brain injury in Ireland: towards a counter discourse

Irish literature on Acquired Brain Injury (ABI) is very scant and is mainly deficits and/or needs based. The focus is generally on how to manage the short term needs of the younger population with ABI. The starting position of my thesis is that people living long-term with ABI are important participants in developing knowledge about this social phenomenon, living with ABI while accepting that their brain injury does not determine them. Six mature adults with ABI and their six significant others participated in this longitudinal study. Using a narrative approach in interviews, over twenty months, five repeat individual interviews with each of the twelve participants was held. From this I gained an understanding of their lived experiences, their life-world and their experiences of our local public ABI/disability services, systems and discourse. Along with this new empirical data, theoretical developments from occupational therapy, occupational science, sociology, and disability studies were also used within a meta-narrative informed by critical theory and critical realism to develop a synthesis of this study. Social analysis of their narratives co-constructed with me, allowed me generate nuanced insights into tendencies and social processes that impacted and continues to impact on their everyday-everynight living. I discuss in some depth here, the relational attitudinal, structural, occupational and environmental supports, barriers or discrimination that they face(d) in their search for social participation and community inclusion. Personal recognition of the disabled participants by their family, friends and/or local community, was generally enhanced after much suffering, social supports, slow recovery, and with some form of meaningful occupational engagement. This engagement was generally linked with pre-injury interests or habits, while Time itself became both a major aid and a need. The present local ABI discourse seldom includes advocacy and inclusion in everyday/every night local events, yet most participants sought both peer-support or collective recognition, and social/community inclusion to help develop their own counter-discourse to the dominant ABI discourse. This thesis aims to give a broad social explanation on aspects of their social becoming, 'self-sameness' and social participation, and the status of the disabled participants wanting to live 'the slow life'. Tensions and dialectical issues involved in moving from the category of a person in coma, to person with a disability, to being a citizen should not demote the need for special services. While individualized short-term neuro-rehabilitation is necessary, it is not sufficient. Along with the participants, this researcher asks that community health and/or social care planners and service-providers rethink how ABI is understood and represented, and how people with ABI are included in their local communities

The effectiveness of dietary counselling versus oral nutrition supplements in improving nutritional intake in malnourished patients with Chronic Obstructive Pulmonary Disease (COPD)

The evidence for nutritional support in COPD is almost entirely based on oral nutritional supplements (ONS) yet despite this dietary counseling and food fortification (DA) are often used as the first line treatment for malnutrition. This study aimed to investigate the effectiveness of ONS vs. DA in improving nutritional intake in malnourished outpatients with COPD. 70 outpatients (BMI 18.4 SD 1.6 kg/m2, age 73 SD 9 years, severe COPD) were randomised to receive a 12-week intervention of either ONS or DA (n 33 ONS vs. n 37 DA). Paired t-test analysis revealed total energy intakes significantly increased with ONS at week 6 (+302 SD 537 kcal/d; p = 0.002), with a slight reduction at week 12 (+243 SD 718 kcal/d; p = 0.061) returning to baseline levels on stopping supplementation. DA resulted in small increases in energy that only reached significance 3 months post-intervention (week 6: +48 SD 623 kcal/d, p = 0.640; week 12: +157 SD 637 kcal/d, p = 0.139; week 26: +247 SD 592 kcal/d, p = 0.032). Protein intake was significantly higher in the ONS group at both week 6 and 12 (ONS: +19.0 SD 25.0 g/d vs. DA: +1.0 SD 13.0 g/d; p = 0.033 ANOVA) but no differences were found at week 26. Vitamin C, Iron and Zinc intakes significantly increased only in the ONS group. ONS significantly increased energy, protein and several micronutrient intakes in malnourished COPD patients but only during the period of supplementation. Trials investigating the effects of combined nutritional interventions are required.

Relationship between living alone and food and nutrient intake

The increase in the number of individuals living alone has implications for nutrition and health outcomes. This review aimed to investigate whether there is a difference in food and nutrient intake between adults living alone and those living with others. Eight electronic databases were searched, using terms related to living alone, nutrition, food, and socioeconomic factors. Forty-one papers met the inclusion criteria, and data of interest were extracted. Results varied but suggested that, compared with persons who do not live alone, persons who live alone have a lower diversity of food intake, a lower consumption of some core foods groups (fruit, vegetables, and fish) and a higher likelihood of having an unhealthy dietary pattern. Associations between living alone and nutrient intake were unclear. Men living alone were more often observed to be at greater risk of undesirable intakes than women. The findings of this review suggest that living alone could negatively affect some aspects of food intake and contribute to the relationship between living alone and poor health outcomes, although associations could vary between socioeconomic groups. Further research is required to help to elucidate these findings.

The meaning of environmental control systems (ECS) for people with spinal cord injury: An occupational therapist explores an intervention

Environmental Control Systems (ECS), enable people with high cervical Spinal Cord Injury (high SCI) to control and access everyday electronic devices. In Ireland, however, access for those who might benefit from ECS is limited. This study used a qualitative approach to explore the insider experience of an ECS starter-pack developed by the author, an occupational therapist. The primary research questions: what is it really like to live with ECS, and what does it mean to live with ECS, were explored using a phenomenological methodology conducted in three phases. In Phase 1 fifteen people with high SCI met twice in four focus groups to discuss experiences and expectations of ECS. Thematic analysis (Krueger & Casey, 2000), influenced by the psychological phenomenological approach (Creswell, 1998), yielded three categories of rich, practical, phenomenological findings: ECS Usage and utility; ECS Expectations and The meaning of living with ECS. Phase 1 findings informed Phase 2 which consisted of the development of a generic electronic assistive technology pack (GrEAT) that included commercially available constituents as well as short instructional videos and an information booklet. This second phase culminated in a one-person, three-week pilot trial. Phase 3 involved a six person, 8-week trial of the GrEAT, followed by individual in-depth interviews. Interpretative Phenomenological Analysis IPA (Smith, Larkin & Flowers, 2009), aided by computer software ATLAS.ti and iMindmap, guided data analysis and identification of themes. Getting used to ECS, experienced as both a hassle and engaging, resulted in participants being able to Take back a little of what you have lost, which involved both feeling enabled and reclaiming a little doing. The findings of this study provide substantial insights into what it is like to live with ECS and the meanings attributed to that experience. Several practical, real world implications are discussed.

Living arrangements, relationship to people in the household and admission to care homes for older people

Objective: to assess the separate contributions of marital status, living arrangements and the presence of children to subsequent admission to a care home.

Design and methods: a longitudinal study derived from the health card registration system and linked to the 2001 Census, comprising 28% of the Northern Ireland population was analysed using Cox regression to assess the likelihood of admission for 51,619 older people in the 6 years following the census. Cohort members’ age, sex, marital and health status and relationship to other household members were analysed.

Results: there were 2,138 care home admissions; a rate of 7.4 admissions per thousand person years. Those living alone had the highest likelihood of admission [hazard ratio (HR) compared with living with partner 1.66 (95% CI 1.48, 1.87)] but there was little difference between the never-married and the previously married. Living with children offered similar protection as living with a partner (HR 0.97; 95% CI 0.81, 1.16). The presence of children reduced admissions especially for married couples (HR 0.67 95% CI 0.54, 0.83; models adjusting for age, gender and health). Women were more likely to be admitted, though there were no gender differences for people living alone or those co-habiting with siblings.

Implications: presence of potential caregivers within the home, rather than those living elsewhere, is a major factor determining admission to care home. Further research should concentrate on the health and needs of these co-residents.

Influence of pursed-lip breathing on heart rate variability and cardiorespiratory parameters in subjects with chronic obstructive pulmonary disease (COPD)

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