Being a bereaved parent : early bereavement experiences and perspectives on paediatric palliative care and bereavement services

La mort d'un enfant est considérée comme l'une des expériences les plus difficiles à laquelle une personne puisse faire face. Les cliniciens, les hôpitaux et plusieurs organismes ont pour objectif d’aider les parents endeuillés, mais leurs efforts sont compliqués par un manque de recherche dans le domaine du deuil parental. Cette thèse est composée de trois articles, soit deux revues de littérature et une étude empirique, qui tentent de combler cette lacune et d’informer les services en soins palliatifs pédiatriques et les services de soutien au deuil en particulier. Le premier article porte sur les besoins des patients recevant des soins palliatifs pédiatriques et de leurs familles. Par le biais d’un méta-résumé de la recherche descriptive et qualitative récente, 10 domaines de besoins ont été identifiés qui correspondent aux lignes directrices actuelles en soins palliatifs pédiatriques et de fin de vie. Ces besoins sont présentés de manière à être facilement applicables à la pratique. Cependant, les résultats mettent aussi en évidence plusieurs aspects des soins identifiés comme déficitaires ou problématiques qui mériteraient une attention particulière dans le cadre de politiques futures. Dans le deuxième article, l'objectif était de résumer une vaste littérature d'une manière utile aux cliniciens. À cette fin, une synthèse narrative a permis d’intégrer la recherche quantitative et qualitative dans le domaine du deuil parental. Les résultats mettent en évidence les éléments susceptibles de favoriser l’adaptation des parents au deuil, éléments qui suggèrent par le fait même des avenues possibles de soutien et d'intervention. Cette synthèse a cependant cerné dans la littérature certaines failles méthodologiques qui rendent l'applicabilité clinique des résultats difficile. L'objectif du troisième article était d'informer les services de suivi et de soutien au deuil auprès des parents en se renseignant directement auprès de parents endeuillés. À cette fin, 21 parents (dont 8 couples) et 7 membres du personnel impliqués dans des activités de suivi de deuil de 2 hôpitaux pédiatriques ont été interrogés dans le cadre d’une description interprétative, et l'application clinique des résultats a été vérifiée par le biais de réunions avec des collaborateurs de recherche et les décideurs des centres hospitaliers. Les résultats décrivent comment les parents ont fait face à leur détresse dans la phase précoce de leur deuil, ainsi que leurs points de vue sur la façon dont les divers services de suivi de deuil ont été aidants. Les résultats suggèrent que les parents gèrent leurs sentiments intenses de douleur par une alternance de stratégies axées soit sur leur deuil ou sur leur quotidien et que dans plusieurs cas leurs relations avec autrui les ont aidé. Cette étude a également permis d'élucider la façon dont divers services de soutien aide les parents à aborder leur deuil. Les implications cliniques de ces résultats sont discutées ainsi que des recommandations à l’intention de ceux qui sont impliqués dans la provision des services en deuil.

Determinantes de la gestión clínica en atención médica domiciliaria de personas con secuelas de enfermedad cerebro-vascular

La atención domiciliaria constituye hoy una modalidad de atención que permite solventar las dificultades derivadas de la sobreocupación hospitalaria y la cronicidad, los cuales constituyen un problema de interés en salud pública en los países desarrollados y que pueden ser manejados en el domicilio del paciente como una opción costo-efectiva y segura. Para lo cual es necesario buscar estrategias que permitan su desarrollo, gestión de riesgos y modelos de atención, logrando mejorar las condiciones de salud de la población. Uno de los principales retos de la gestión de programas de atención en salud, se encuentra en definir los aspectos donde intervenir para potenciar la eficacia y la calidad en la prestación del servicio, por lo que dichos aspectos se constituyen como determinantes de la atención del paciente y su familia. En este documento se abordan los principales determinantes en la atención de personas con secuelas de Enfermedad cerebrovascular, que reciben manejo medico domiciliario, con el objetivo de identificar las áreas prioritarias de intervención, garantizando una mejor gestión clínica en tres áreas específicas: sobrecarga del cuidador, Polimedicación y ulceras por decúbito.

Primary health care. Neoliberal continuities in “person-centered care”

This paper analyzes the document on primary health care (PHC) published by the World Health Organization (WHO) in 2008, held to mark the thirtieth anniversary of the Declaration of Alma-Ata on PHC (1). Objective: to investigate in depth the assumptions outlined in the report, in order to problematize the notion of APS and universal access to health that are made in this proposal. Methodology: using documentary analysis examines the health proposal prepared by the international body and subjected to criticism from the following areas: a) conception of health as aright or as a service. b) Criteria commodified healthcare. Results: emphasize the permanence of a neoliberal perspective on the proposals WHO health reform in this document, which needs to be discussed in contexts where neoliberalism was intense processes of inequality and exclusion, as in the case of Latin America.

Description and analysis of pulmonary rehabilitation care programs current state in four cities of Colombia

Purpose: there are many studies reporting the benefits of pulmonary rehabilitation, but few of them exhibit the behavior and activities of these services. This article presents the characteristics of services, parts management and training level of team members, in addition to the variables or instruments used to measure the effectiveness and impact in these programs. Method: it was made a cross sectional convenience sample which included seven pulmonary rehabilitation services in four Colombian cities (Bogotá, Medellín, Manizales and Cali), selected by the coverage, for having at least one year of experience and for being formally established and recognized nationwide. The interdisciplinary team of each service answered a survey that was validated through a pilot test and expert consensus. Participation was voluntary. Results: labor onset pulmonary rehabilitation services correspond to an average of a decade, with COPD and asthma pathologies of attention. The programs are characterized by an outpatient treatment with an average duration of eight to twelve weeks, with a frequency of an hour three times a week. Also, the director of the service is regularly a pulmonologist and the coordinator a physiotherapist (57.14%). The posgradual training of these professionals is notable, and they report to have procedural, administrative and communicative skills, but qualify regular there research skills. The physical and technological resources are well tested. 71.42% have done impact studies, but only 28.57% have been published. All have in common training in upper limbs, lower limbs, respiratory muscles, counseling, functional assessment and quality of life. The effectiveness and impact of programs is measured by the walking test, quality of life questionnaires and activities of daily living.

Self-exclusion from health care in women at high risk for postpartum depression

Background A significant proportion of women who are vulnerable to postnatal depression refuse to engage in treatment programmes. Little is known about them, other than some general demographic characteristics. In particular, their access to health care and their own and their infants' health outcomes are uncharted. Methods We conducted a nested cohort case-control study, using data from computerized health systems, and general practitioner (GP) and maternity records, to identify the characteristics, health service contacts, and maternal and infant health outcomes for primiparous antenatal clinic attenders at high risk for postnatal depression who either refused (self-exclusion group) or else agreed (take-up group) to receive additional Health Visiting support in pregnancy and the first 2 months postpartum. Results Women excluding themselves from Health Visitor support were younger and less highly educated than women willing to take up the support. They were less likely to attend midwifery, GP and routine Health Visitor appointments, but were more likely to book in late and to attend accident and emergency department (A&E). Their infants had poorer outcome in terms of gestation, birthweight and breastfeeding. Differences between the groups still obtained when age and education were taken into account for midwifery contacts, A&E attendance and gestation;the difference in the initiation of breast feeding was attenuated, but not wholly explained, by age and education. Conclusion A subgroup of psychologically vulnerable childbearing women are at particular risk for poor access to health care and adverse infant outcome. Barriers to take-up of services need to be understood in order better to deliver care.

Healthcare providers in the English National Health Service: public, private or hybrids?

In recent years it has been noted that boundaries between public and private providers of many types of welfare have become blurred. This paper uses three dimensions of publicness to analyse this blurring of boundaries in relation to providers of healthcare in England. The authors find that, although most care is still funded and provided by the state, there are significant additional factors in respect of ownership and social control which indicate that many English healthcare providers are better understood as hybrids. Furthermore, the authors raise concerns about the possible deleterious effects of diminishing aspects of publicness on English healthcare. The most important of these is a decrease in accountability

Continuity of care for carers of people with severe mental illness: results of a longitudinal study

Introduction: Continuity of care has been demonstrated to be important for service users and carer groups have voiced major concerns over disruptions of care. We aimed to assess the experienced continuity of care in carers of patients with both psychotic and non-psychotic disorders and explore its association with carer characteristics and psychological well-being. Methods: Friends and relatives caring for two groups of service users in the care of community mental health teams (CMHTs), 69 with psychotic and 38 with non-psychotic disorders, were assessed annually at three and two time points, respectively. CONTINUES, a measure specifically designed to assess continuity of care for carers themselves, was utilized along with assessments of psychological well-being and caregiving. Results: One hundred and seven carers participated. They reported moderately low continuity of care. Only 22 had had a carer’s assessment and just under a third recorded psychological distress on the GHQ. For those caring for people with psychotic disorders, reported continuity was higher if the carer was male, employed, lived with the user and had had a carer’s assessment; for those caring for people with non-psychotic disorders, it was higher if the carer was from the service user’s immediate family, lived with them and had had a carer’s assessment. Conclusion: The vast majority of the carers had not had a carer’s assessment provided by the CMHT despite this being a clear national priority and being an intervention with obvious potential to increase carers’ reported low levels of continuity of care. Improving continuity of contact with carers may have an important part to play in the overall improvement of care in this patient group and deserves greater attention.

Key drivers of frontline employee generation of ideas for customer service improvement

Anchored in the service-dominant logic and service innovation literature, this study investigates the drivers of employee generation of ideas for service improvement (GISI). Employee GISI focuses on customer needs and providing the exact service wanted by customers. GISI should enhance competitive advantage and organizational success (cf. Berry et al. 2006; Wang and Netemeyer 2004). Despite its importance, there is little research on the idea generation stage of the service development process (Chai, Zhang, and Tan 2005). This study contributes to the service field by providing the first empirical evaluation of the drivers of GISI. It also investigates a new explanatory determinant of reading of customer needs, namely, perceived organizational support (POS), and an outcome of POS, in the form of emotional exhaustion. Results show that the major driver of GISI is reading of customer needs by employees followed by affective organizational commitment and job satisfaction. This research provides several new and important insights for service management practice by suggesting that special care should be put into selecting and recruiting employees who have the ability to read customer needs. Additionally, organizations should invest in creating work environments that encourage and reward the flow of ideas for service improvement

Activities related with electricity consumption in the Spanish residential sector: variations between days of the week, Autonomous Communities and size of towns

Nowadays the electricity consumption in the residential sector attracts policy and research efforts, in order to propose saving strategies and to attain a better balance between production and consumption, by integrating renewable energy production and proposing suitable demand side management methods. To achieve these objectives it is essential to have real information about household electricity demand profiles in dwellings, highly correlated, among other aspects, with the active occupancy of the homes and to the personal activities carried out in homes by their occupants. Due to the limited information related to these aspects, in this paper, behavioral factors of the Spanish household residents, related to the electricity consumption, have been determined and analyzed, based on data from the Spanish Time Use Surveys, differentiating among the Autonomous Communities and the size of municipalities, or the type of days, weekdays or weekends. Activities involving a larger number of houses are those related to Personal Care, Food Preparation and Washing Dishes. The activity of greater realization at homes is Watching TV, which together with Using PC, results in a high energy demand in an aggregate level. Results obtained enable identify prospective targets for load control and for efficiency energy reduction recommendations to residential consumers.

HIV care and interdependence in Tanzania and Uganda

Within many communities in East Africa, people living with HIV are increasingly involved in delivering home-based care and healthcare for family members and peers. Such interdependent caring relations blur conventional boundaries between ‘care-givers’ and ‘care-recipients’, and constructions of 'service users' as dependent, passive recipients of healthcare. The participation of people living with HIV in healthcare provision, home-based care and peer support groups can enhance ‘relational autonomy’ for both care-givers and care-recipients, although such initiatives often play out in highly gendered ways. The care and support of people living with HIV, particularly the emotion work of caring, however, continues to be associated with women's and girls' assumed 'natural' nurturing roles and has been largely devalued and overlooked in HIV policy and practice to date.

The use of ICT by adults with learning disabilities in day and residential services

The use of Information and Communication Technology (ICT) by adults with learning disabilities has been positively promoted over the past decade. More recently, policy statements and guidance from the UK government have underlined the importance of ICT for adults with learning disabilities specifically, as well as for the population in general, through the potential it offers for social inclusion. The aim of the present study was to provide a picture of how ICT is currently being used within one organisation providing specialist services for adults with learning disabilities and more specifically to provide a picture of its use in promoting community participation. Nine day and 14 residential services were visited as part of a qualitative study to answer three main questions: What kinds of computer programs are being used? What are they being used for? Does this differ between day and residential services? Computers and digital cameras were used for a wide range of activities and ‘mainstream’ programs were used more widely than those developed for specific user groups. In day services, ICT was often embedded in wider projects and activities, whilst use in houses was based around leisure interests. In both contexts, ICT was being used to facilitate communication, although this was more linked to within-service activities, rather than those external to service provision.

Characterization of residential chimney conditions for flue gas flow measurements

A literature survey and a theoretical study were performed to characterize residential chimney conditions for flue gas flow measurements. The focus is on Pitot-static probes to give sufficient basis for the development and calibration of a velocity pressure averaging probe suitable for the continuous dynamic (i.e. non steady state) measurement of the low flow velocities present in residential chimneys. The flow conditions do not meet the requirements set in ISO 10780 and ISO 3966 for Pitot-static probe measurements, and the methods and their uncertainties are not valid. The flow velocities in residential chimneys from a heating boiler under normal operating condi-tions are shown to be so low that they in some conditions result in voiding the assumptions of non-viscous fluid justifying the use of the quadratic Bernoulli equation. A non-linear Reynolds number dependent calibration coefficient that is correcting for the viscous effects is needed to avoid significant measurement errors. The wide range of flow velocity during normal boiler operation also results in the flow type changing from laminar, across the laminar to turbulent transition region, to fully turbulent flow, resulting in significant changes of the velocity profile during dynamic measurements. In addition, the short duct lengths (and changes of flow direction and duct shape) used in practice are shown to result in that the measurements are done in the hydrodynamic entrance region where the flow velocity profiles most likely are neither symmetrical nor fully developed. A measurement method insensitive to velocity profile changes is thus needed, if the flow velocity profile cannot otherwise be determined or predicted with reasonable accuracy for the whole measurement range. Because of particulate matter and condensing fluids in the flue gas it is beneficial if the probe can be constructed so that it can easily be taken out for cleaning, and equipped with a locking mechanism to always ensure the same alignment in the duct without affecting the calibration. The literature implies that there may be a significant time lag in the measurements of low flow rates due to viscous effects in the internal impact pressure passages of Pitot probes, and the significance in the discussed application should be studied experimentally. The measured differential pressures from Pitot-static probes in residential chimney flows are so low that the calibration and given uncertainties of commercially available pressure transducers are not adequate. The pressure transducers should be calibrated specifically for the application, preferably in combination with the probe, and the significance of all different error sources should be investigated carefully. Care should be taken also with the temperature measurement, e.g. with averaging of several sensors, as significant temperature gradients may be present in flue gas ducts.

Pregnant Adolescents in Vietnam : Social context and health care needs

Background: The number of childbearing adolescents in Vietnam is relatively low but they are more prone to experience adverse outcome than adult women. Reports of increasing rates of abortion and prevalence of STIs including HIV among youth indicate a need to improve services and counselling for these groups. Midwives are key persons in the promotion of young people’s sexual and reproductive health in Vietnam. Aim: The overall aim of this thesis is to describe the prevalence and outcome of adolescent pregnancies in Vietnam (I), to explore the social context and health care seeking behavior of pregnant adolescents (II), as well as to explore the perspectives of health care providers and midwifery students regarding adolescent sexuality and reproductive health service needs (III, IV). Methods: The studies were conducted from 2002 to 2005, combining qualitative and quantitative research methods. A population based prospective survey was used to estimate rates and outcomes of adolescent pregnancies (I). Pregnant and newly delivered adolescents’ experiences of childbearing and their encounters with health care providers were studied using qualitative interviews (II). Health care providers’ perspective on adolescent sexual and reproductive health (ASRH) and views on how to improve the quality of abortion care was explored in focus group discussions (FGD). The values and attitudes of midwifery students about ASRH were investigated using questionnaires and interviews (IV). Descriptive statistics was used to analyse quantitative data (I, IV) and content analysis were applied for qualitative data (II, III, and IV). Findings: Adolescent birth rate was similar to previously reported in Vietnam but lower when compared to other Asian countries. The incidence of stillborn among adolescents was higher than for women in higher reproductive ages. The proportion of preterm deliveries was 20 % of all births, higher than previous findings from Vietnam. About 2 % of the deliveries were home deliveries, more common among women with low education, belonging to ethnic minority and/or living in mountainous areas (I). Ambivalence facing motherhood, pride and happiness but also worries and lack of self-confidence emerged as themes from the interviews; and experience of ‘being in the hands of others’ in a positive, caring sense but also in a sense of subordination in relation to husband, family and health care providers (II). Health care providers at abortion clinics and midwifery students generally disapproved of pre-marital sex, but had a pragmatic view on the need for contraceptive services and counselling to reduce the burden of unwanted pregnancies and abortions for young women. Providers and midwifery students expressed a need for training on ASRH issues (III, IV). Conclusion: Cultural norms and gender inequity make pregnant adolescent women in Vietnam vulnerable to sexual and reproductive health risks. Health care providers experience ethical dilemmas while counselling unmarried adolescents who come for abortion and this has a negative impact on the quality of care. Integrated ASRH in education and training programmes for health care providers, including midwives, as well as continued in-service training on these issues are suggested to improve reproductive health care services in Vietnam.

Tha contribution of home-based technology to older people's quality of life in extra care housing

Background: British government policy for older people focuses on a vision of active ageing and independent living. In the face of diminishing personal capacities, the use of appropriate home-based technology (HBT) devices could potentially meet a wide range of needs and consequently improve many aspects of older people's quality of life such as physical health, psychosocial well-being, social relationships, and their physical or living environment. This study aimed to examine the use of HBT devices and the correlation between use of such devices and quality of life among older people living in extra-care housing (ECH).  Methods: A structured questionnaire was administered for this study. Using purposive sampling 160 older people living in extra-care housing schemes were selected from 23 schemes in England. A face-to-face interview was conducted in each participant's living unit. In order to measure quality of life, the SEIQoL-Adapted and CASP-19 were used.  Results: Although most basic appliances and emergency call systems were used in the living units, communally provided facilities such as personal computers, washing machines, and assisted bathing equipment in the schemes were not well utilised. Multiple regression analysis adjusted for confounders including age, sex, marital status, living arrangement and mobility use indicated a coefficient of 1.17 with 95% CI (0.05, 2.29) and p = 0.04 [SEIQoL-Adapted] and 2.83 with 95% CI (1.17, 4.50) and p = 0.001 [CASP-19].  Conclusions: The findings of the present study will be value to those who are developing new form of specialised housing for older people with functional limitations and, in particular, guiding investments in technological aids. The results of the present study also indicate that the home is an essential site for developing residential technologies.