GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.

Healthcare Staffs’ Experiences and Perceptions of Caring for People with Dementia in the Acute Setting: Qualitative Evidence Synthesis

Background Dementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting. Objectives The aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development. Settings A screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings. Participants Twelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers. Methods Framework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings. Results Key themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia. Conclusions This review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.

Teacher’s Conceptions of Caring and Protective Teaching Elements in Rwamwanja Refugee Settlement Schools

The purpose of this study is to find out what conceptions Rwamwanja refugee settlement teachers have about caring teaching methods. The study was conducted by analysing the data gathered from semi-structured interviews. Twelve teachers were interviewed in four different refugee settlement schools. The main theory of this study is based on ethics of care research by Nel Noddings. In addition, the framework was developed by combining the theories of resilience and psychosocial support which are often employed in research concerning emergency contexts. This study uses qualitative content analysis to describe the conceptions of caring teachers have and protective teaching elements they employ. The results of this study show that many of the key elements of caring and protective teaching were present in teacher’s answers. For example, in their answers, the majority of the teachers pointed out the significance of using soft discipline. However, many teaching elements considered ideal in emergency contexts were missing. These missing methods include routines and flexibility which are considered essential for vulnerable children. The teachers’ levels of conceptual thinking varied remarkably depending on their language skills. The communication was limited to very basic and concrete language in some of the interviews due to lack of mutual understanding. This also raised a question about the level of understanding between refugee pupils and teachers since there is no strong common language between them. The results of this research call for further studies about the effect of caring teaching elements in growth of resilience in refugee children. Keywords: The ethics of care, resilience, psychosocial support, education in emergencies, refugees, education, protection.

Unmet health needs in patients with coronary heart disease: implications and potential for improvement in caring services

BACKGROUND: Improving the quality of health care services requires tailoring facilities to fulfil patients' needs. Satisfying patients' healthcare needs, listening to patients' opinions and building a closer provider-user partnership are central to the NHS. Few published studies have discussed cardiovascular patients' health needs, but they are not comprehensive and fail to explore the contribution of outcome to needs assessment. METHOD: A comprehensive self-administered health needs assessment (HNA) questionnaire was developed for concomitant use with generic (Short Form-12 and EuroQOL) and specific (Seattle Angina Questionnaire) health-related quality of life (HRQL) instruments on 242 patients admitted to the Acute Cardiac Unit, Nottingham. RESULTS: 38% reported difficulty accessing health facilities, 56% due to transport and 32% required a travelling companion. Mean HRQOL scores were lower in those living alone (P < 0.05) or who reported unsatisfactory accommodation. Dissatisfaction with transport affected patients' ease of access to healthcare facilities (P < 0.001). Younger patients (<65 y) were more likely to be socially isolated (P = 0.01). Women and patients with chronic disease were more likely to be concerned about housework (P < 0.05). Over 65 s (p < 0.05) of higher social classes (p < 0.01) and greater physical needs (p < 0.001) had more social needs, correlating moderately (0.32 < r < 0.63) with all HRQL domains except SAQ-AS. Several HRQL components were highly correlated with the HNA physical score (p < 0.001). CONCLUSIONS: Patients wanted more social (suitable accommodation, companionship, social visits) and physical (help aids, access to healthcare services, house work) support. The construct validity and intra-class reliability of the HNA tool were confirmed. Our results indicate a gap between patients' health needs and available services, highlighting potential areas for improvement in the quality of services

Women's perceptions of Nurse-Midwives' caring behaviours during perinatal loss in Lilongwe, Malawi: An Exploratory study

Objective The Objective for this study was to explore women’s perceptions of and satisfaction with nursing care they received following stillbirth and neonatal death in villages around a community hospital in Lilongwe. Methods This qualitative, exploratory study through a mixture of purposive and snowball sampling, recruited 20 women who had lost a child through stillbirth or neonatal death in the past 2 years. Data were collected through semi-structured interviews in the privacy of the homes of the women. All interviews were tape-recorded and transcribed verbatim and were analyzed using thematic analysis. Results Almost half of the respondents expressed satisfaction with the way nurses cared for them after experiencing perinatal loss, although some felt unable to comment on the quality of care received. However, several bereaved women were dissatisfied with how nurses handled their loss. They noted nurses not providing attention or explanations and some even attributed the death of their child to nurses’ neglect. Conclusions Interventions are needed which foster awareness where nurses become more sensitive to the mothers’ emotional needs in an equally sensitive health care system. There is also need for more research into care provided following perinatal deaths in resource-poor settings to increase the evidence-base for informed and improved care for women who have experienced child loss.

Interventions for nurses caring for a child who has an unexpected acute life threatening event (ALTE) in hospital

Introduction: Caring for a child who has an unexpected ALTE in hospital can be stressful. An ALTE may include a cardiac arrest, respiratory arrest or call for immediate assistance. An international survey of practice was conducted to identify any existing interventions to inform a PhD program of work aimed at reducing the stress from these events through preparation and support. Purpose: The purpose of the survey was threefold: (1) Describe ‘normal’ practice when it comes to preparing staff or providing psychological support after caring for a child who has had an ALTE. (2) Determine if there are any interventions to prepare clinical staff for potential psychological effects of caring for a child who has an ALTE. (3) Determine if there are any interventions to provide support for clinical staff after caring for a child who has an ALTE. Material - Methods: An 18 item semi structured questionnaire was designed for the study to allow respondent to describe practices within their institution and outline their opinions and professional experiences. Clinicians from selected children’s and adult hospitals in Australia, Canada, New Zealand, United Kingdom and the United States of America were contacted by telephone. Following consent they were given the option to complete the survey via the telephone, by post or online. Results: Of the 61 hospitals approached 44 (72%) clinicians responded. Eighteen (41%) respondents identified interventions in place to prepare nurses for an ALTE ranging from (but not limited to) ad hoc discussions during life support training through to structured simulation training. Thirty-six (82%) respondents identified that they had interventions in place to support nurses after an ALTE ranging from (but not limited to) debriefing through to structured case reviews. Conclusions: Interventions varied across institutions, with no outcome or evaluation data for the interventions published to date.

The role of pharmacists in caring for young people with chronic illness

Purpose - To explore the perceived and potential roles of pharmacists in the care of young people aged 10-24 years with chronic illness, through the exemplar of juvenile arthritis, from the perspectives of UK community and hospital pharmacists, health service commissioners, rheumatology health professionals and lay advocates. Methods - A sequential mixed methods study design comprising: focus groups with community and hospital pharmacists; telephone interviews with pharmacy and rheumatology stakeholders and commissioners, and multidisciplinary group discussions to prioritize roles generated by the first two qualitative phases. Results - The high priority roles for pharmacists, identified by pharmacists and rheumatology staff, were: developing generic healthcare skills among young people; transferring information effectively across care interfaces; building trusting relationships with young people; helping young people to find credible online health information, and the need to develop specialist expertise. Participants identified associated challenges for pharmacists in supporting young people with chronic illness. These challenges included parents collecting prescription refills alone, thus reducing opportunities to engage, and pharmacist isolation from the wider healthcare team. Conclusions - This study has led to the identification of specific enhancements to pharmacy services for young people which have received the endorsement of a wide range of stakeholders. These suggestions could inform the next steps in developing the contribution of community and hospital pharmacy to support young people with chronic illness in the optimal use of their medication.

Construção e validação da Escala de Crenças Parentais e Práticas de Cuidado (E-CPPC) na primeira infância

O presente estudo teve como objetivo construir e validar uma escala de crenças parentais e práticas de cuidado na primeira infância para o contexto brasileiro. Após a construção teórica dos itens, a versão final da escala foi aplicada em dois estudos com populações distintas (estudo preliminar - 250 mães; estudo final - 600 mães), visando avaliar a frequência de comportamento e o grau de importância atribuído às práticas. Para as análises psicométricas, foram realizadas: análise fatorial e o cálculo da consistência interna. Em ambos os estudos a análise fatorial resultou em dois fatores, sendo o primeiro denominado "cuidados primários" e o segundo "estimulação". Os alfas de Cronbach apresentaram-se satisfatórios, variando de 0,68 a 0,83. Os resultados do estudo demonstraram a validade e precisão da escala, a qual poderá ser utilizada em futuras pesquisas, bem como em práticas de intervenção familiar, principalmente durante os primeiros anos de vida das crianças.

Violence against women: a study of the reports to police in the city of Itapevi, Sao Paulo, Brazil

Background: violence against women is a serious problem caused by the social construction of feminineness and masculineness that results in the domination of women by men. Public policies on gender have recently been developed in order to confront the problem. But what exactly are the problems faced by women? Purposes: to survey and analyse cases of violence against women reported to the police, as recorded at the Police Stations for Women`s Defence (PSWDs), and to reconstruct the procedures that women must go through in order to denounce their aggressors. Methodology: this quantitative, exploratory and descriptive study was undertaken during 2006-2007 in the city of Itapevi, Sao Paulo metropolitan region, Brazil. As there is no PSWD data were collected from police reports from PSWDs of neighbouring cities. Findings: malicious physical injury (49%) and threats (42%) were the most commonly reported types of violence. The victims were aged between 20 and 49 years (93%). Almost all of the aggressors (97%) were men and most had an intimate relationship with their victim. The use of alcoholic beverages was linked to approximately 25% of the cases. Conclusion: women who are victims of domestic violence in Itapevi report that going through PSWDs of neighbouring cities is a difficult, isolated, long and expensive process that often, provides no institutional protection. Implications for practice: there is an urgent requirement for judicial-assistance and support close to home in order to provide a quality service and follow-up for these women and their aggressors; to provide training for the professionals called to attend them at police stations; and for a caring attitude from health-care professionals.,0 2010 Elsevier Ltd. All rights reserved.

HIV testing and care of the patient co-infected with tuberculosis and HIV

Human immunodeficiency virus (HIV) infection poses one of the greatest challenges to tuberculosis (TB) control, with TB killing more people with HIV infection than any other condition. The standards in this chapter cover provider-initiated HIV counselling and testing and the care of HIV-infected patients with TB. All TB patients who have not previously been diagnosed with HIV infection should be encouraged to have an HIV test. Failing to do so is to deny people access to the care and treatment they might need, especially in the context of the wider availability of treatments that prevent infections associated with HIV A clearly defined plan of care for those found to be co-infected with TB and HIV should be in place., with procedures to ensure that the patient has access to this care before offering routine testing for HIV in persons with TB. It is acknowledged that people caring for TB patients should ensure that those who are HIV positive are transferred for the appropriate ongoing care once their TB treatment has been completed. In some cases, referral for specialised HIV-related treatment and care may be necessary during treatment for TB. The aim of these standards is to enable patients to remain as healthy as possible, whatever their HIV status.

Women's health Australia: On the progress of the main cohort studies

More than 41,000 women aged 18-23, 45-50, and 70-75 years in 1996 are participating in the Australian Longitudinal Study on Women's Health (Women's Health Australia). Baseline surveys were conducted for all three cohorts in 1996, and the first follow-up survey of the mid-age group in 1998 has achieved a response rate exceeding 90%. The main findings so far reflect the large differences in the life experiences of the three cohorts. The young women report high levels of stress. The physical and mental health of those with young children is worse than for those without children, but confounding by sociodemographic characteristics may account for the differences. Two thirds of young women in the healthy weight or underweight range would like to weigh less, and early onset of dieting is associated with poorer physical and mental health. Most of the women in the mid-age group have multiple roles-in paid work, home duties, and caring for children and other dependents. The potential of the study to investigate the long-term impact of such busy lives on health outcomes is considerable. At this stage, the main health issues for these women relate to tiredness, weight gain, and menopause. The older cohort presents a picture of positive aging. These women are heavier users of health services than the mid-age and younger women, and they are also more satisfied with these services. Although their physical health is poorer, their mental health is better, and they report less stress than women in the other two cohorts. The follow-up survey of this group, planned for 1999, will focus on the coping strategies used by these women. An overall goal of the project is to understand the interactions among social roles, life events, and women's health in order to provide a basis for improved health policies and services. Analysis of these interactions, which relies on both quantitative and qualitative data, poses many challenges that will be addressed as the longitudinal data become available.

An analysis of accommodation needs of adults with an intellectual disability in Toowoomba and surrounding areas

Introduction The objective of this study was to analyse the accommodation needs of people with intellectual disability over the age of 18 years in Toowoomba and contiguous shires. In 2004, a group of carers established Toowoomba Intellectual Disability Support Association (TIDSA) to address the issue of the lack of supported accommodation for people with intellectual disability over the age of 18 and the concerns of ageing carers. The Centre for Rural and Remote Area Health (CRRAH) was engaged by TIDSA to ascertain this need and undertook a research project funded by the Queensland Gambling Community Benefit Fund. While data specifically relating to people with intellectual disability and their carers are difficult to obtain, the Australian Bureau of Statistics report that carers of people with a disability are more likely to be female and at least 65 years of age. Projections by the National Centre for Social and Economic Modelling (NATSEM) show that disability rates are increasing and carer rates are decreasing. Thus the problem of appropriate support to the increasing number of ageing carers and those who they care for will be a major challenge to policy makers and is an issue of immediate concern. In general, what was once the norm of accommodating people with intellectual disability in large institutions is now changing to accommodating into community-based residences (Annison, 2000; Young, Ashman, Sigafoos, & Grevell, 2001). However, in Toowoomba and contiguous shires, TIDSA have noted that the availability of suitable accommodation for people with intellectual disability over the age of 18 years is declining with no new options available in an environment of increasing demand. Most effort seemed to be directed towards crisis provision. Method This study employed two phases of data gathering, the first being the distribution of a questionnaire through local service providers and upon individual request to the carers of people with intellectual disability over the age of 18. The questionnaire comprised of Likert-type items intended to measure various aspects of current and future accommodation issues. Most questions were followed with space for free-response comments to provide the opportunity for carers to further clarify and expand on their responses. The second phase comprised semi-structured interviews conducted with ten carers and ten people with intellectual disability who had participated in the Phase One questionnaire. Interviews were transcribed verbatim and subjected to content analysis where major themes were explored. Results Age and gender Carer participants in this study totalled 150. The mean age of these carers was 61.5 years and ranged from 40 – 91 years. Females comprised 78% of the sample (mean age = 61.49; range from 40-91) and 22% were male (mean age = 61.7 range from 43-81). The mean age of people with intellectual disability in our study was 37.2 years ranging from 18 – 79 years with 40% female (mean age = 39.5; range from 19-79) and 60% male (mean age = 35.6; range from 18-59). The average age of carers caring for a person over the age of 18 who is living at home is 61 years. The average age of the carer who cares for a person who is living away from home is 62 years. The overall age range of both these groups of carers is between 40 and 81 years. The oldest group of carers (mean age = 70 years) were those where the person with intellectual disability lives away from home in a large residential facility. Almost one quarter of people with an intellectual disability who currently live at home is cared for by one primary carer and this is almost exclusively a parent.