Exploring Health in Military Families: Does Continuity of Care Influence Patient Satisfaction?

To ensure mission-readiness for military members, support for their families is essential. Military family health and health care satisfaction has been a neglected area of study in this population. Satisfaction can be defined in terms of patient-, provider-, and practice-level factors and is influenced by continuity of care, which is often poor in transient military populations. Using a modified patient satisfaction survey, this study found that both the number of moves and assigned providers were significantly associated with continuity of care in military spouses. Further, continuity of care was a significant predictor of satisfaction with military health care.

PERCEPTIONS AND EXPERIENCES OF FAMILY CAREGIVERS OF BEDRIDDEN ELDERLY

Objective: To know the perceptions and experiences of family caregivers of bedridden elderly. Methods: A qualitative descriptive exploratory study conducted in January 2015 with four caregivers in a Family Health Center in the municipality of Araripe, CE. Data were collected through semi-structured interviews and the information was organized using the content analysis technique. A total of three categories emerged from the analysis of the reports of caregivers: the dependence process of the elderly; daily difficulties experienced by the caregiver; and satisfaction with the home care service. Results: The dependence process of the elderly took place as a consequence of pathological processes such as neoplasm, cerebrovascular accident and dementia. However, it could also be observed that physiological phenomena – common in old age – can also make individuals dependent on caregivers. As to the difficulties faced by the caregivers, they reported the need for greater involvement by the family, given that the centralization of work generates an overload and hence affects the care of the elderly. Teamwork in the home care context is fundamental, given that it allows a complementary and comprehensive care to the ledrely/caregiver binomial. Conclusion: Healthy aging is a major challenge to be overcome given that the development of a healthy lifestyle is difficult in all social strata. It is necessary to improve home care in order to provide support to caregivers so that the quality of life of bedridden elderly and caregivers is improved.

Epidemiology and genetic architecture of blood pressure: a family based study of Generation Scotland

Hypertension is a major risk factor for cardiovascular disease and mortality, and a growing global public health concern, with up to one-third of the world’s population affected. Despite the vast amount of evidence for the benefits of blood pressure (BP) lowering accumulated to date, elevated BP is still the leading risk factor for disease and disability worldwide. It is well established that hypertension and BP are common complex traits, where multiple genetic and environmental factors contribute to BP variation. Furthermore, family and twin studies confirmed the genetic component of BP, with a heritability estimate in the range of 30-50%. Contemporary genomic tools enabling the genotyping of millions of genetic variants across the human genome in an efficient, reliable, and cost-effective manner, has transformed hypertension genetics research. This is accompanied by the presence of international consortia that have offered unprecedentedly large sample sizes for genome-wide association studies (GWASs). While GWAS for hypertension and BP have identified more than 60 loci, variants in these loci are associated with modest effects on BP and in aggregate can explain less than 3% of the variance in BP. The aims of this thesis are to study the genetic and environmental factors that influence BP and hypertension traits in the Scottish population, by performing several genetic epidemiological analyses. In the first part of this thesis, it aims to study the burden of hypertension in the Scottish population, along with assessing the familial aggregation and heritialbity of BP and hypertension traits. In the second part, it aims to validate the association of common SNPs reported in the large GWAS and to estimate the variance explained by these variants. In this thesis, comprehensive genetic epidemiology analyses were performed on Generation Scotland: Scottish Family Health Study (GS:SFHS), one of the largest population-based family design studies. The availability of clinical, biological samples, self-reported information, and medical records for study participants has allowed several assessments to be performed to evaluate factors that influence BP variation in the Scottish population. Of the 20,753 subjects genotyped in the study, a total of 18,470 individuals (grouped into 7,025 extended families) passed the stringent quality control (QC) criteria and were available for all subsequent analysis. Based on the BP-lowering treatment exposure sources, subjects were further classified into two groups. First, subjects with both a self-reported medications (SRMs) history and electronic-prescription records (EPRs; n =12,347); second, all the subjects with at least one medication history source (n =18,470). In the first group, the analysis showed a good concordance between SRMs and EPRs (kappa =71%), indicating that SRMs can be used as a surrogate to assess the exposure to BP-lowering medication in GS:SFHS participants. Although both sources suffer from some limitations, SRMs can be considered the best available source to estimate the drug exposure history in those without EPRs. The prevalence of hypertension was 40.8% with higher prevalence in men (46.3%) compared to women (35.8%). The prevalence of awareness, treatment and controlled hypertension as defined by the study definition were 25.3%, 31.2%, and 54.3%, respectively. These findings are lower than similar reported studies in other populations, with the exception of controlled hypertension prevalence, which can be considered better than other populations. Odds of hypertension were higher in men, obese or overweight individuals, people with a parental history of hypertension, and those living in the most deprived area of Scotland. On the other hand, deprivation was associated with higher odds of treatment, awareness and controlled hypertension, suggesting that people living in the most deprived area may have been receiving better quality of care, or have higher comorbidity levels requiring greater engagement with doctors. These findings highlight the need for further work to improve hypertension management in Scotland. The family design of GS:SFHS has allowed family-based analysis to be performed to assess the familial aggregation and heritability of BP and hypertension traits. The familial correlation of BP traits ranged from 0.07 to 0.20, and from 0.18 to 0.34 for parent-offspring pairs and sibling pairs, respectively. A higher correlation of BP traits was observed among first-degree relatives than other types of relative pairs. A variance-component model that was adjusted for sex, body mass index (BMI), age, and age-squared was used to estimate heritability of BP traits, which ranged from 24% to 32% with pulse pressure (PP) having the lowest estimates. The genetic correlation between BP traits showed a high correlation between systolic (SBP), diastolic (DBP) and mean arterial pressure (MAP) (G: 81% to 94%), but lower correlations with PP (G: 22% to 78%). The sibling recurrence risk ratio (λS) for hypertension and treatment were calculated as 1.60 and 2.04 respectively. These findings confirm the genetic components of BP traits in GS:SFHS, and justify further work to investigate genetic determinants of BP. Genetic variants reported in the recent large GWAS of BP traits were selected for genotyping in GS:SFHS using a custom designed TaqMan® OpenArray®. The genotyping plate included 44 single nucleotide polymorphisms (SNPs) that have been previously reported to be associated with BP or hypertension at genome-wide significance level. A linear mixed model that is adjusted for age, age-squared, sex, and BMI was used to test for the association between the genetic variants and BP traits. Of the 43 variants that passed the QC, 11 variants showed statistically significant association with at least one BP trait. The phenotypic variance explained by these variant for the four BP traits were 1.4%, 1.5%, 1.6%, and 0.8% for SBP, DBP, MAP, and PP, respectively. The association of genetic risk score (GRS) that were constructed from selected variants has showed a positive association with BP level and hypertension prevalence, with an average effect of one mmHg increase with each 0.80 unit increases in the GRS across the different BP traits. The impact of BP-lowering medication on the genetic association study for BP traits has been established, with typical practice of adding a fixed value (i.e. 15/10 mmHg) to the measured BP values to adjust for BP treatment. Using the subset of participants with the two treatment exposure sources (i.e. SRMs and EPRs), the influence of using either source to justify the addition of fixed values in SNP association signal was analysed. BP phenotypes derived from EPRs were considered the true phenotypes, and those derived from SRMs were considered less accurate, with some phenotypic noise. Comparing SNPs association signals between the four BP traits in the two model derived from the different adjustments showed that MAP was the least impacted by the phenotypic noise. This was suggested by identifying the same overlapped significant SNPs for the two models in the case of MAP, while other BP traits had some discrepancy between the two sources

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

"Family Education and Support" program for families at psychosocial risk: the role of implementation process

This paper analyses the implementation characteristics of the Family Education and Support program, a theory-driven, needs-based, and evidence-based positive parenting program originally developed for the Andalusian family preservation services. The implementation process of 34 trials of the FAF program with 155 participants was analyzed. Cluster analyses were also performed to explore variability in implementation conditions from a comprehensive perspective. Results showed different implementation profiles that moderated the FAF effectiveness (namely lengthier interventions, higher program fidelity, and practitioners' positive perceptions and satisfaction with the program). The relevance of examining implementation process across several trials is discussed in order to distinguish core and non-core FAF components, as well as the need for combining faithful and adaptable implementations that guarantee the ecologic validity of evidence-based positive parenting programs.

Orthodox versus unorthodox care: A qualitative study on where rural women seek healthcare during pregnancy and childbirth in Southwest, Nigeria

Introduction Utilization of orthodox health facilities for maternal health services is determined by factors operating at the individual, household, community and state level. The prevalence of small family norm is one of the identified variables operating within the community which influences the decision of where to access care (orthodox/traditional). The objective of the study was to determine the use of orthodox versus unorthodox maternity healthcare and determinants among rural women in southwest Nigeria. Methods A qualitative study was done and involved three focus group discussions. A semi-structured interview guide was used to collect information from women of reproductive age group within a rural Local Government Area in Lagos state. Results Most of the women access some form of healthcare during pregnancy, orthodox, unorthodox or both. Those who patronize both services concurrently do so to benefit from the two as each has some unique features such as herbal concoctions for traditional, ultrasound and immunization of babies for orthodox. Traditional belief exerts a strong influence on decision of where to access maternal healthcare services. Actual place of delivery is determined by individual and household factors including financial resources. Conclusion Rural women utilize one or both orthodox and unorthodox maternal health services for different reasons. Ward Development Committees should be strengthened so as to reach the communities, educate and convince women to dispel myths which limit their use of orthodox care. Training and monitoring of Traditional Birth Attendants (TBAs) are vital to eliminate harmful practices. We also recommend improved financial access to orthodox healthcare.

Saúde mental e gênero em um CAPS II de Brasília : condições sociais, sintomas, diagnósticos e sofrimento psíquico

Tese (doutorado)—Universidade de Brasília, Instituto de Psicologia, Departamento de Psicologia Clínica, Programa de Pós-graduação em Psicologia Clínica e Cultura, 2016.

The patient-provider relationship and antenatal care uptake at two referral hospitals in Malawi: A qualitative study

Background In post-stroke patients, impairment of quality of life (QOL) has been associated with functional impairment, age, anxiety, depression, and fatigue. Good social support, higher education, and better socioeconomic status are associated with better QOL among stroke survivors. In Africa, studies from Nigeria and Tanzania have reported on post-stroke QOL. Background Approximately 90% of Malawian women attend antenatal care at least once during their pregnancies; however, most mothers first present during months five and six and do not adhere to the World Health Organization’s recommended four visits. The objective of this study was to explore the role the patient-provider relationship has on antenatal care uptake. Methods A qualitative study, consisting of interviews with 20 urban pregnant mothers and eight health workers, was conducted from September to December 2014. Two large tertiary care hospitals in the Central and Southern regions of Malawi were selected as study sites. Results Several factors influenced antenatal care attendance. Significant barriers reported included the patient-provider relationship, clinic wait times, family and friend support, distance from home to the clinic, transportation, cost, and number of visits. The patient-provider relationship appears to have a large impact on antenatal clinic participation. Mothers indicated that health workers often mistreat or demean them during visits. Additionally, health workers revealed that, due to staff shortages, patients often do not receive the care they deserve. Conclusions The results of this study suggest that, in addition to other factors, healthcare provider attitudes influence antenatal clinic attendance. Improving the patient-provider relationship may increase antenatal clinic attendance and decrease pregnancy complications during pregnancy. Professional development opportunities and quality improvement programmes are would help improve patient care and health outcomes while the continued staff shortages in the country are addressed.

Impact of a fall prevention program in the Internal Medicine wards of a tertiary care university hospital

Objective: To determine whether a falls prevention program reduces the incidence of falls within a hospital. Materials and methods: Each patient admitted to the Internal Medicine ward was classiied into a risk category (high, medium, low) according to the scale of J.H. Downton, and then various general and speciic measures were applied by risk group. Interventions included appointments, teaching materials, and training of medical staff and family. Furthermore, a registration system was developed that allowed adverse event fe edback to the program and identiicat ion of the causes of the fall. The SPSS version 20.0 was used for the data analysis. Descriptive analysis was used for quantitative variables, and qualitative variables were expressed as proportions. To compare the rate of pre- and post-program implementation falls, x 2 was used, with a  = 0.05 determining a signiicant statistical value. Results: Since the implementation of the program, the rate of falls per 1000 days/patient decreased from 1.9 in 2007 to 0.67 in the period 2008-2013, representing a decrease of the rate of falls of up to 70%, with a statistically signiicant difference (P=.02). Conclusions: The implementation of a falls prevention program is an effective tool and reduces the rate and complications associated with them.

Composite Indicators for the Family Change: ‘Familism' vs ‘Individualism' in the International Context

The aim of this paper is to propose a composite indicator to measure ‘familism’, conformed by two main dimensions: values on one hand (duty to take care of the family, importance of the family, sacrifices for the family...) and behaviours, on the other (predominance of married couples instead of cohabitant couples, high frequency of contact among members, family support…). In contrast to this idea of ‘familism’ we find that of individualism, that defends the independence of family members, tolerance to new family models, cohabitation instead of marriage,… , that implies less frequency of interaction among relatives and more governmental intervention towards children and elderly care. We observe that a higher degree of ‘familism’ does not always match with a lower degree of individualism when both dimensions, attitudes and behaviours, are considered. For instance, we find countries which are individualist in values but not in behaviours (such as Spain), whilst others, such as Japan, are ‘familist’ both in values and behaviours and finally, others, such as Sweden, are individualist with regards to both perspectives. We propose two different methodological approaches to the question. First, we use microdata from the Family, Work and Gender Roles module of the International Social Survey Programme-ISSP (years 1994, 2002 and 2012), in which 45 countries have participated. Information for the three rounds is collected for 17 countries with very different family values and welfare systems (for instance, Sweden, Japan, Russia, Spain, United Kingdom or the United States). From this data source, we create a first index on familism that can be related to individual sociodemographic characteristics. Second, we complete it through the inclusion of macro data (such as the divorce rate per country), in order to refine comparison at a country level by adding new variables to the previous index.

Composite Indicators for the Family Change: ‘Familism' vs ‘Individualism' in the International Context

The aim of this paper is to propose a composite indicator to measure ‘familism’, conformed by two main dimensions: values on one hand (duty to take care of the family, importance of the family, sacrifices for the family...) and behaviours, on the other (predominance of married couples instead of cohabitant couples, high frequency of contact among members, family support…). In contrast to this idea of ‘familism’ we find that of individualism, that defends the independence of family members, tolerance to new family models, cohabitation instead of marriage,… , that implies less frequency of interaction among relatives and more governmental intervention towards children and elderly care. We observe that a higher degree of ‘familism’ does not always match with a lower degree of individualism when both dimensions, attitudes and behaviours, are considered. For instance, we find countries which are individualist in values but not in behaviours (such as Spain), whilst others, such as Japan, are ‘familist’ both in values and behaviours and finally, others, such as Sweden, are individualist with regards to both perspectives. We propose two different methodological approaches to the question. First, we use microdata from the Family, Work and Gender Roles module of the International Social Survey Programme-ISSP (years 1994, 2002 and 2012), in which 45 countries have participated. Information for the three rounds is collected for 17 countries with very different family values and welfare systems (for instance, Sweden, Japan, Russia, Spain, United Kingdom or the United States). From this data source, we create a first index on familism that can be related to individual sociodemographic characteristics. Second, we complete it through the inclusion of macro data (such as the divorce rate per country), in order to refine comparison at a country level by adding new variables to the previous index.

"I’ll call you when we are ready" (One family’s experience of critical care and end of life decision making)

The purpose of this paper is to explore through narrative accounts one family's expérience of critical care, after the admission of a family member to an Intensive Care Unit (ICU) and their subséquent death five weeks later. Numerous studies support the need for effective communication and clear information to be given to the family. In this instance it was évident from their stories that there were numerous barriers to communication, including language and a lack of insight into the needs of the family. Many families do not understand the complexities of nursing care in an ICU so lack of communication by nursing staff was identified as uncaring behavior and encounters. Facilitating a family's proximity to a dying patient and encouraging them to participate in care helps to maintain some sensé of personal control. Despite a commitment to involving family members in care, which was enshrined in the Unit Philosophy, relatives were banished to the waiting room for hours. They experienced feelings of powerlessness and helplessness as they waited with other relatives for news following investigations or until 'the doctor had completed his rounds'. Explanations of "we must make 'the patient' comfortable" was no consolation for those who wished to be involved in care. The words "I'il call you when we are ready" became a mantra to the forgotten families who waited patiently for those with power to admit them to the ICU. Implications are this family felt they were left alone to cope with the traumatic expériences leading up to and surrounding the death. They felt mainly supported by the priest, who not only administered the last rites but provided spiritual support to the family and dealt sensitively with many issues. Paternalism in décision making when there is a moral obligation to ensure that discussions on end of life dilemmas are an inclusive process with families, doctors, nurses was not understood, therefore it caused conflict within the family over EOL décision making. The family felt that the opportunity to share expériences through telling and retelling their stories would enable them to reconfigure the past and create purpose in the future.

Palliative care team visits. Qualitative study through participant observation

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients\' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

FOCUS : frailty management optimisation through EIPAHA commitments and utilisation of stakeholders’ input – an innovative European project in elderly care

The goal of FOCUS, which stands for Frailty Management Optimization through EIPAHA Commitments and Utilization of Stakeholders’ Input, is to reduce the burden of frailty in Europe. The partners are working on advancing knowledge of frailty detection, assessment, and management, including biological, clinical, cognitive and psychosocial markers, in order to change the paradigm of frailty care from acute intervention to prevention. FOCUS partners are working on ways to integrate the best available evidence from frailty-related screening tools, epidemiological and interventional studies into the care of frail people and their quality of life. Frail citizens in Italy, Poland and the UK and their caregivers are being called to express their views and their experiences with treatments and interventions aimed at improving quality of life. The FOCUS Consortium is developing pathways to leverage the knowledge available and to put it in the service of frail citizens. In order to reach out to the broadest audience possible, the FOCUS Platform for Knowledge Exchange and the platform for Scaling Up are being developed with the collaboration of stakeholders. The FOCUS project is a development of the work being done by the European Innovation Partnership on Active and Healthy Ageing (EIPAHA), which aims to increase the average healthy lifespan in Europe by 2020 while fostering sustainability of health/social care systems and innovation in Europe. The knowledge and tools developed by the FOCUS project, with input from stakeholders, will be deployed to all EIPAHA participants dealing with frail older citizens to support activities and optimize performance.

Quality of life and chronic disease in patients receiving primary health care

Problem Statement: Chronic disease entails physical, psychological and social issues with a decrease in the quality of life. The assessment of QoL has been applied as indicator in patients with chronic diseases. Research Questions: What is the quality of life in patients with chronic disease? What are the socio-demographic variables that influence the quality of life in patients? Purpose: To assess the quality of life in patients suffering from chronic disease and identify socio-demographic variables which influence the quality of life of patients suffering from chronic disease. Research Methods: We conducted a cross-sectional analytical study using a sample composed of 228 users (134 females) from a Family Health Unit in the municipality of Viseu. Data collection was made by means of a questionnaire, consisting of sociodemographic variables, the SF-12 scale and the existence of chronic disease was assessed through the questions – “Do you currently suffer from any chronic disease?”; “If so, which one(s)?”. Findings: The most common chronic diseases were hypertension (59.9%). Female patients with a chronic disease reported worse physical functioning, role-physical and role-emotional; increased bodily pain and better quality of life regarding general health. Male patients showed worse role-physical, increased bodily pain and vitality. Sociodemographic variables which were associated with quality of life were area of residence, academic qualifications and work situation. Conclusion: Chronic disease affects quality of life negatively. Quality of life in both patients groups was associated with socio-demographic variables. Health-related quality of life is an essential issue and should be considered as a priority in health policies.