Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

SWOT analysis of a pediatric rehabilitation programme : a participatory evaluation fostering quality improvement

Purpose. To present the results of a strengths, weaknesses, opportunities and threats (SWOT) analysis used as part of a process aimed at reorganising services provided within a pediatric rehabilitation programme (PRP) in Quebec, Canada and to report the perceptions of the planning committee members regarding the usefulness of the SWOT in this process. Method. Thirty-six service providers working in the PRP completed a SWOT questionnaire and reported what they felt worked and what did not work in the existing model of care. Their responses were used by a planning committee over a 12- month period to assist in the development of a new service delivery model. Committee members shared their thoughts about the usefulness of the SWOT. Results. Current programme strengths included favourable organisational climate and interdisciplinary work whereas weaknesses included lack of psychosocial support to families and long waiting times for children. Opportunities included working with community partners, whereas fear of losing professional autonomy with the new service model was a threat. The SWOT results helped the planning committee redefine the programme goals and make decisions to improve service coordination. SWOT analysis was deemed as a very useful tool to help guide service reorganisation. Conclusions. SWOT analysis appears to be an interesting evaluation tool to promote awareness among service providers regarding the current functioning of a rehabilitation programme. It fosters their active participation in the reorganisation of a new service delivery model for pediatric rehabilitation.

Evaluation and Potential Cost-Effectiveness of Active Surveillance Pharmacovigilance for First-Line HAART in Namibia

Thesis (Ph.D.)--University of Washington, 2016-02

Contributo para a validação da versão portuguesa do instrumento de avaliação VOICE (service users perceptions of impatient care, Views on Inpatient Care)

RESUMO: Nos últimos anos assistiu-se a um reposicionamento das pessoas portadoras de doença mental na sociedade, no sentido de viverem em pleno os seus direitos, sem restrições. Esta tendência acompanhou as transformações que se têm vivido na forma como os utentes dos serviços de saúde interagem com os mesmos e com os profissionais de saúde, de forma a permitir uma maior autonomização e responsabilização no que concerne ao tratamento da sua doença, a relação que estabelecem com o seu médico, e a participação na avaliação e monitorização da qualidade dos serviços. Mais recentemente, também no mundo científico, esta afirmação se fez sentir, com o surgimento de investigação liderada por utentes, no sentido de estudar de forma adequada questões que partem do seu ponto de vista, e que possibilitem a produção de conhecimento significativa no contexto das suas experiências. Com o presente trabalho pretende-se contribuir para a validação da versão portuguesa do VOICE (Service Users’ Perceptions of Inpatient Care, Views on Inpatient Care) (Evans et al., 2012), instrumento para a avaliação dos serviços de internamento de agudos em psiquiatria, construído a partir de um investigação liderado por utentes e partindo das suas perspectiva. O VOICE é constituído por 19 questões, agrupadas em sete domínios: admissão; cuidados e tratamento; medicação; equipa de técnicos do internamento; terapia e atividades; ambiente e diferenças. O presente estudo envolveu uma amostra de 85 utentes de um serviço de internamento de agudos de uma instituição psiquiátrica do Norte de Portugal. A versão portuguesa do VOICE apresentou boa aceitação por parte dos utentes e boas características psicométricas - a consistência interna foi alta (α = 0,87) e todos, exceto um item (item 6), apresentam elevadas correlações item-total (variando de 0,18 - item 6 a 0,71 - item 11; M = 0,54, DP = 0,15), sugerindo ser um instrumento útil na avaliação dos serviços de internamento de agudos. No futuro torna-se necessário alargar o estudo a outros contextos de internamento e envolvendo amostras mais alargadas.-------------- ABSTRACT: In recent years there has been a gradual process to help people with the experience of mental illness regaining their full rights. Following the advances in the understanding of mental health problems, and the use of medication to help patients overcome symptoms, service-users have become more autonomous and responsible in the way they deal with health professionals, and are now called to participate in assessing and monitoring mental health services and policies. In the context of these transformations we have assisted to the emergence of research led by service-users (in this case of psychiatric and mental health services) in order to emphasize their point of view, and to enable the production of significant knowledge resulting from their experiences, and perceptions. The present study aims to contribute to the dissemination of service-user led research, based on the adaptation and validation of the Portuguese version of the VOICE - Service Users' Perceptions Questionnaire, Views on Inpatient Care. (Evans et al., 2012). The VOICE is composed of 19 questions, grouped in seven domains: admissions, care and treatment, medication, team of technicians during hospitalization, therapy and activities, environment and diversity. The present study involved a sample of 85 inpatient of a psychiatric institution in Northern Portugal. The Portuguese version of the VOICE showed good psychometric properties and was well accepted by patients [high internal consistency (α = 0,87); and high correlation of each item, except item 6, with the total score (ranging from 0.18 on item 6 to 0.71 on item 11; average=0,54; SD=0,15), suggesting it to be a useful tool for assessing inpatient services. In the future there is a need to extend the study to other contexts and include larger samples.

The effects of day care at the kindergarten level : day care centre versus in-home care

Two groups of nonmaternal day care providers, one made up of in-horne caregivers, and the other of providers of day care in centres, were asked to focus on their goals for the children in their care. A group of kindergarten teachers was asked to consider any differences they noticed in children in· the two types of day care mentioned above. It was found that in-horne caregivers, through flexibility, meet the developmental goals of the children in their care. Providers of tlay care in centres used a more structured and social program in order to meet the overall developmental goals for the children in their care. It was found that the kindergarten teachers noticed differences in the children in their classes in terms of their attitude and social behaviour. The type and quality of care were seen as possible influences on this outlook of young children in kindergarten. The one common element that each group highlighted with respect to the effects of day care at the kindergarten level was the important role of the family in the child's development not only in day care, but also in kindergarten class. There is still a strong need to determine the effects of various types of day care at all levels, and specifically at the kindergarten level. The more the kindergarten teacher is able to understand about the child's day care experience, and his or her own life,the better off these children in day care will be. This study confirmed both the importance of quality in child care, and the important role of the family in the child care decision.

Exploring the Perceptions of Cultural Competence Among Personal Support Workers in an Ontario Long-Term Care Home: A Case Study

Personal Support Workers (PSWs) spend a large amount of time with long-term care (LTC) home residents providing assistance with their activities of daily living. The s limited research on their perceptions of cultural competence presents the need to bridge this knowledge gap. The researcher conducted a qualitative case study at a LTC home in Ontario. Data were collected by conducting a policy document analysis, a key informant interview with the Director of Care (DOC), and two focus groups with PSWs. The five major overarching themes were: The Culture of the LTC Home, Provision of a Supportive Environment, Collaborative Team Approach to Care, Building a Relationship with the Residents, and Maintenance of Staff Morale. The findings illuminated the broad nature of culture, connections to person centered care, and the factors that facilitate or hinder PSWs’ culturally competent care. The ambiguous perception of cultural competence among PSWs suggests further research and education on cultural competence in LTC home settings.

Assessing waiting times in the clinical trajectory of patients with lung cancer

Le cancer du poumon a une incidence et une létalité parmi les plus hautes de tous les cancers diagnostiqués au Canada. En considérant la gravité du pronostic et des symptômes de la maladie, l’accès au traitement dans les plus brefs de délais est essentiel. Malgré l’engagement du gouvernement fédéral et les gouvernements provinciaux de réduire les délais de temps d’attente, des balises pour les temps d’attente pour le traitement d’un cancer ne sont toujours pas établis. En outre, le compte-rendu des indicateurs des temps d’attente n’est pas uniforme à travers les provinces. Une des solutions proposées pour la réduction des temps d’attente pour le traitement du cancer est les équipes interdisciplinaires. J’ai complété un audit du programme interdisciplinaire traitant le cancer du poumon à l’Hôpital général juif (l’HGJ) de 2004 à 2007. Les objectifs primaires de l’étude étaient : (1) de faire un audit de la performance de l’équipe interdisciplinaire à l’HGJ en ce qui concerne les temps d’attente pour les intervalles critiques et les sous-groupes de patients ; (2) de comparer les temps d’attente dans la trajectoire clinique des patients traités à l’HGJ avec les balises qui existent ; (3) de déterminer les facteurs associés aux délais plus longs dans cette population. Un objectif secondaire de l’étude était de suggérer des mesures visant à réduire les temps d’attente. Le service clinique à l’HGJ a été évalué selon les balises proposées par le British Thoracic Society, Cancer Care Ontario, et la balise pan-canadienne pour la radiothérapie. Les patients de l’HGJ ont subi un délai médian de 9 jours pour l’intervalle «Ready to treat to first treatment», et un délai médian de 30 jours pour l’intervalle entre le premier contact avec l’hôpital et le premier traitement. Les patients âgés de plus de 65 ans, les patients avec une capacité physique diminuée, et les patients avec un stade de tumeur limité étaient plus à risque d’échouer les balises pour les temps d’attente.

Objective quality of life, optimism, and social-juridical variables, as predictive ones of the subjective quality of life in disarmed Colombian persons

The goal of this research was to identify predic- tive psychosocial factors of the subjective quality of life in a group of 60 people, with ages between 19 and 57, from both sexes, included in the program of demobilization and social inclusion of the Pro- grama de la Alta Consejería para la Reintegración Social y Económica de Personas y Grupos Alzados en Armas en Colombia. this research was a predic- tive correlational descriptive study. the Question- naire of optimism/Pessimism was used to assess the optimist or pessimist trend, and, for assess the quality of life, these strategies were combined: a home visit to value the objective quality of life, the Analogous scale of subjective Quality of Life to value satisfaction and well-being, and a general format to collect socio-demographic and juridical information. Results show that some variables as perceived health, optimism, educational level, re- ligious believes, objective quality of life, type of demobilization and years spent in the armed group operating outside the law, are associated to better levels of perceived quality of life. The findings and limitations of the study are discussed.  

Performance of long-term care systems in Europe. ENEPRI Policy Brief No. 13, December 2012

The evaluation of long-term care (LTC) systems carried out in Work Package 7 of the ANCIEN project shows which performance criteria are important and – based on the available information – how European countries score on those criteria. This paper summarises the results and discusses the policy implications. An overall evaluation was carried out for four representative countries: Germany, the Netherlands, Spain and Poland. Of the four countries, the Dutch system has the highest scores on quality of life of LTC users, quality of care and equity of the LTC system, and it performs the secondbest after Poland in terms of the total burden of care (consisting of the financial burden and the burden of informal caregiving). The German system has somewhat lower scores than the Dutch on all four dimensions. The Polish system excels in having a low total burden of care, but it scores the lowest on quality of care and equity. The Spanish system has few extreme scores. Some important lessons are the following. The performance of a LTC system is a complex concept where many dimensions have to be included. Specifically, the impact of informal caregiving on the caregivers and on society should not be forgotten. The role of the state in funding and organising LTC versus individual responsibilities is one of the most important differences among countries. Choices concerning private funding and the role of informal care have a large effect not only on the public expenditures but also on the fairness of the system. International research into the relative preferences for the different performance criteria could produce a sound basis for the weights used in the overall evaluation.

Technology acceptance and care self-management: consideration in context of chronic care management

With an aging global population, the number of people living with a chronic illness is expected to increase significantly by 2050. If left unmanaged, chronic care leads to serious health complications, resulting in poor patient quality of life and a costly time bomb for care providers. If effectively managed, patients with chronic care tend to live a richer and more healthy life, resulting in a less costly total care solution. This chapter considers literature from the areas of technology acceptance and care self-management, which aims to alleviate symptoms and/or reason for non-acceptance of care, and thus minimise the risk of long-term complications, which in turn reduces the chance of spiralling health expenditure. By bringing together these areas, the chapter highlights areas where self-management is failing so that changes can be made in care in advance of health deterioration.

Health care providers' perceptions of and attitudes towards induced abortions in sub-Saharan Africa and Southeast Asia : a systematic literature review of qualitative and quantitative data.

BACKGROUND: Unsafe abortions are a serious public health problem and a major human rights issue. In low-income countries, where restrictive abortion laws are common, safe abortion care is not always available to women in need. Health care providers have an important role in the provision of abortion services. However, the shortage of health care providers in low-income countries is critical and exacerbated by the unwillingness of some health care providers to provide abortion services. The aim of this study was to identify, summarise and synthesise available research addressing health care providers' perceptions of and attitudes towards induced abortions in sub-Saharan Africa and Southeast Asia. METHODS: A systematic literature search of three databases was conducted in November 2014, as well as a manual search of reference lists. The selection criteria included quantitative and qualitative research studies written in English, regardless of the year of publication, exploring health care providers' perceptions of and attitudes towards induced abortions in sub-Saharan Africa and Southeast Asia. The quality of all articles that met the inclusion criteria was assessed. The studies were critically appraised, and thematic analysis was used to synthesise the data. RESULTS: Thirty-six studies, published during 1977 and 2014, including data from 15 different countries, met the inclusion criteria. Nine key themes were identified as influencing the health care providers' attitudes towards induced abortions: 1) human rights, 2) gender, 3) religion, 4) access, 5) unpreparedness, 6) quality of life, 7) ambivalence 8) quality of care and 9) stigma and victimisation. CONCLUSIONS: Health care providers in sub-Saharan Africa and Southeast Asia have moral-, social- and gender-based reservations about induced abortion. These reservations influence attitudes towards induced abortions and subsequently affect the relationship between the health care provider and the pregnant woman who wishes to have an abortion. A values clarification exercise among abortion care providers is needed.

The Nurse Professional Competence (NPC) scale : self-reported competence among nursing students on the point of graduation

BACKGROUND: International organisations, e.g. WHO, stress the importance of competent registered nurses (RN) for the safety and quality of healthcare systems. Low competence among RNs has been shown to increase the morbidity and mortality of inpatients. OBJECTIVES: To investigate self-reported competence among nursing students on the point of graduation (NSPGs), using the Nurse Professional Competence (NPC) Scale, and to relate the findings to background factors. METHODS AND PARTICIPANTS: The NPC Scale consists of 88 items within eight competence areas (CAs) and two overarching themes. Questions about socio-economic background and perceived overall quality of the degree programme were added. In total, 1086 NSPGs (mean age, 28.1 [20-56]years, 87.3% women) from 11 universities/university colleges participated. RESULTS: NSPGs reported significantly higher scores for Theme I "Patient-Related Nursing" than for Theme II "Organisation and Development of Nursing Care". Younger NSPGs (20-27years) reported significantly higher scores for the CAs "Medical and Technical Care" and "Documentation and Information Technology". Female NSPGs scored significantly higher for "Value-Based Nursing". Those who had taken the nursing care programme at upper secondary school before the Bachelor of Science in Nursing (BSN) programme scored significantly higher on "Nursing Care", "Medical and Technical Care", "Teaching/Learning and Support", "Legislation in Nursing and Safety Planning" and on Theme I. Working extra paid hours in healthcare alongside the BSN programme contributed to significantly higher self-reported scores for four CAs and both themes. Clinical courses within the BSN programme contributed to perceived competence to a significantly higher degree than theoretical courses (93.2% vs 87.5% of NSPGs). SUMMARY AND CONCLUSION: Mean scores reported by NSPGs were highest for the four CAs connected with patient-related nursing and lowest for CAs relating to organisation and development of nursing care. We conclude that the NPC Scale can be used to identify and measure aspects of self-reported competence among NSPGs.

Barriers and facilitators in the provision of post-abortion care at district level in central Uganda : a qualitative study focusing on task sharing between physicians and midwives

Background: Abortion is restricted in Uganda, and poor access to contraceptive methods result in unwanted pregnancies. This leaves women no other choice than unsafe abortion, thus placing a great burden on the Ugandan health system and making unsafe abortion one of the major contributors to maternal mortality and morbidity in Uganda. The existing sexual and reproductive health policy in Uganda supports the sharing of tasks in post-abortion care. This task sharing is taking place as a pragmatic response to the increased workload. This study aims to explore physicians' and midwives' perception of post-abortion care with regard to professional competences, methods, contraceptive counselling and task shifting/sharing in post-abortion care. Methods: In-depth interviews (n = 27) with health care providers of post-abortion care were conducted in seven health facilities in the Central Region of Uganda. The data were organized using thematic analysis with an inductive approach. Results: Post-abortion care was perceived as necessary, albeit controversial and sometimes difficult to provide. Together with poor conditions post-abortion care provoked frustration especially among midwives. Task sharing was generally taking place and midwives were identified as the main providers, although they would rarely have the proper training in post-abortion care. Additionally, midwives were sometimes forced to provide services outside their defined task area, due to the absence of doctors. Different uterine evacuation skills were recognized although few providers knew of misoprostol as a method for post-abortion care. An overall need for further training in post-abortion care was identified. Conclusions: Task sharing is taking place, but providers lack the relevant skills for the provision of quality care. For post-abortion care to improve, task sharing needs to be scaled up and in-service training for both doctors and midwives needs to be provided. Post-abortion care should further be included in the educational curricula of nurses and midwives. Scaled-up task sharing in post-abortion care, along with misoprostol use for uterine evacuation would provide a systematic approach to improving the quality of care and accessibility of services, with the aim of reducing abortion-related mortality and morbidity in Uganda.

Quality of life (QoL) in relation to disease severity in Brazilian Parkinson's patients as measured using the WHOQOL-BREF

This study aimed at evaluating and describing the QoL and its association with the severity of disease among Brazilian Parkinson's disease (PD) patients. In this cross-sectional study 68 PD patients were interviewed using the World Health Organization Quality of Life instrument Short Form (WHOQOL-BREF) and the Hoehn-Yahr (HY) scale. Analysis of variance, chi(2), Kruskal-Wallis and Mann-Whitney U-tests, Spearman and Cronbach reliability coefficients were used to analyze the data. The results indicate: (1) physical capacity was the domain that showed the most deterioration; (2) severity of PD is associated with QoL measured by WHOQOL-BREF; (3) overall QoL, working capacity, activities of daily living (ADL) and self-esteem are affected in both transitional periods in the progression of PD (mild to moderate and moderate to advanced). Satisfaction with general health, pain, energy, positive feelings, personal relationship and satisfaction with home are affected in the first period of transition while mobility, body image, sexual activity and access to information are affected in the second. This study mainly shows specific facets that are affected depending on the specific periods of PD progression, which can help to understand the impact of the disease, the effectiveness of care, and the demand for health care resources. (C) 2007 Elsevier B.V. All rights reserved.