Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research.
Humans; Male; Health Services Research; Finland; Program Development; *Bereavement; *Fathers/px [Psychology]; *Social Support; Evidence-Based Nursing
AIMS AND OBJECTIVES: The aim is to present the development and implementation of a bereavement follow-up intervention for grieving fathers. The development and implementation process and components of the intervention are presented., BACKGROUND: There is a lack of research into fathers' grief and bereavement support for them after the death of a child. Promotion of evidence-based nursing requires transparent development and implementation of nursing interventions and models to be able to repeat, evaluate their effectiveness and redevelop them., DESIGN: Phases of action research were used when developing and implementing the intervention., METHODS: Results of the baseline study of father's grief and social support, the study of current bereavement support and the literature review were combined using triangulation., RESULTS: In this action research, the development of a bereavement follow-up intervention for grieving fathers began with the planning phase that included a baseline study about fathers' grief and social support, a study of current bereavement support systems in Finnish university hospitals and a systematic review of literature on the topic area and collaboration with a panel of experts. The developed bereavement follow-up intervention included three complementary components: support package, peer supporters' contact and health care personnel's contact. Implementation of the intervention included the development of a programme to be used in nursing practice, intervention training for programme implementers and intervention implementation., CONCLUSIONS: Developing and implementing an intervention is a complex, demanding and long-term process. The planning required theoretical knowledge as well as understanding the experiences of fathers, nursing practice and collaboration with those who implemented the intervention., RELEVANCE TO CLINICAL PRACTICE: New information about the fathers' grief and bereavement follow-up support is described. The model developed is evidence-based and can be applied in nursing care where grieving fathers and families are met. Copyright © 2010 Blackwell Publishing Ltd.
Aho, Anna L; Astedt-Kurki, Paivi; Tarkka, Marja-Terttu; Kaunonen, Marja
Journal of Clinical Nursing
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/j.1365-2702.2010.03523.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2702.2010.03523.x</a>
Polypharmacy among Pediatric Cancer Patients Dying In the Hospital
Child; Female; Humans; Male; Resuscitation Orders; Demography; Health Services Research; Hospitalization/statistics & numerical data; Neoplasm Staging; Antineoplastic Agents/therapeutic use; Neoplasms/drug therapy/mortality/pathology; Palliative Care/methods/statistics & numerical data; Polypharmacy; Terminal Care/methods/statistics & numerical data; Critical Pathways/statistics & numerical data; Israel/epidemiology; Steroids/therapeutic use
BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life (EOL). OBJECTIVES: To characterize medication burden during the last hospitalization in children dying from cancer. METHODS: We performed a retrospective cohort study based on medical records of 90 children who died from cancer in hospital between 01 January 2010 and 30 December 2018. Demographic and clinical information were collected for the last hospitalization. We compared medication burden (number of medication orders) at hospitalization and at time of death and examined whether changes in medication burden were associated with clinical and demographic parameters. RESULTS: Median medication burden was higher in leukemia/lymphoma patients (6 orders) compared to solid (4 orders) or CNS tumor patients (4 orders, P = 0.006). Overall, the median number of prescriptions per patient did not change until death (P = 0.42), while there was a significant reduction for some medication subgroups (chemotherapy [P = 0.035], steroids [P = 0.010]).Patients dying in the ICU (n=15) had a higher medication burden at death (6 orders) than patients dying on wards (3 orders, P = 0.001). There was a trend for a reduction in medication burden in patients with "Do not resuscitate" (DNR) orders (P = 0.055). CONCLUSIONS: Polypharmacy is ubiquitous among pediatric oncology patients at EOL. Disease type and DNR status may affect medication burden and deprescribing during the last hospitalization.
Tamir S; Kurnik D; Weyl BAM; Postovsky S
The Israel Medical Association Journal
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals
child; health services research; palliative care; qualitative research
OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care professionals. Data were analysed using thematic analysis. SETTING: Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018. PARTICIPANTS: Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children's palliative care services. FINDINGS: A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural 'collusion of immortality', where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in 'illuminating the blind spot' of palliative care as well as providing hands-on care. CONCLUSIONS: Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.
Mitchell S; Slowther AM; Coad J; Bertaud S; Dale J
Archives of Disease in Childhood
2021
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<a href="http://doi.org/10.1136/archdischild-2021-321808" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-321808</a>
Hospitalizations for mitochondrial disease across the lifespan in the U.S
Hospitalization/sn [Statistics & Numerical Data]; Mitochondrial Diseases/ep [Epidemiology]; Adolescent; Adult; Child; Cost of Illness; Cross-Sectional Studies; Databases; Factual; Female; Health Services Research; Hospital Mortality; Hospitalization/ec [Economics]; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Mitochondrial Diseases/ec [Economics]; Mitochondrial Diseases/mo [Mortality]; Preschool; United States/ep [Epidemiology]; Young Adult
IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the impact of mitochondrial disease on healthcare utilization in the U.S. across the lifespan., OBJECTIVES: To describe the characteristics of inpatient hospitalizations related to mitochondrial disease in the U.S., to identify patient-level clinical factors associated with in-hospital mortality, and to estimate the burden of hospitalizations on individual patients., DESIGN: Cross-sectional and longitudinal observational studies., SETTING: U.S. hospitals., PARTICIPANTS: Individuals with hospital discharges included in the triennial Healthcare Cost and Utilization Project (HCUP) Kids Inpatient Database (KID) and the National Inpatient Sample (NIS) in 2012 (cross-sectional analysis); individuals with hospital discharges included in the HCUP California State Inpatient Database from 2007 to 2011, inclusive (longitudinal analysis)., EXPOSURE: Hospital discharge associated with a diagnosis of mitochondrial disease., MAIN OUTCOME MEASURES: Total number and rate of hospitalizations for individuals with mitochondrial disease (International Classification of Diseases, 9th revision, Clinical Modification code 277.87, disorder of mitochondrial metabolism); in-hospital mortality., RESULTS: In the 2012, there were approximately 3200 inpatient pediatric hospitalizations (1.9 per 100,000 population) and 2000 inpatient adult hospitalizations (0.8 per 100,000 population) for mitochondrial disease in the U.S., with associated direct medical costs of $113million. In-hospital mortality rates were 2.4% for children and 3.0% for adults, far exceeding population averages. Higher socioeconomic status was associated with both having a diagnosis of mitochondrial disease and with higher in-hospital mortality. From 2007 to 2011 in California, 495 individuals had at least one admission with a diagnosis of mitochondrial disease. Patients had a median of 1.1 hospitalizations (IQI, 0.6-2.2) per calendar year of follow-up; infants under 2y were hospitalized more frequently than other age groups. Over up to five years of follow up, 9.9% of participants with any hospitalization for mitochondrial disease were noted to have an in-hospital death., CONCLUSIONS AND RELEVANCE: Hospitalizations for pediatric and adult mitochondrial diseases are associated with serious illnesses, substantial costs, and significant patient time. Identification of opportunities to prevent or shorten such hospitalizations should be the focus of future studies.Copyright © 2017 Elsevier Inc. All rights reserved.
McCormack SE; Xiao Rui; Kilbaugh TJ; Karlsson M; Ganetzky RD; Cunningham ZZ; Goldstein A; Falk MJ; Damrauer SM
Molecular genetics and metabolism
2017
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<a href="http://doi.org/10.1016/j.ymgme.2017.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.ymgme.2017.04.007</a>
Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network
Humans; Education; Communication; Nurses; Health Services Research; British Columbia; Focus Groups; Computer Communication Networks; Nursing Research; Health Services; Research; Internet; Nursing; Blogging; social media; social networking; User-Computer Interface
BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication between care providers and consumers. This paper addresses a new use of technology in providing a platform for health professionals to support professional development, increase knowledge utilization, and promote formal/informal professional communication. Specifically, we report on factors necessary to attract and sustain health professionals' use of a network designed to increase nurses' interest in and use of health services research and to support knowledge utilization activities in British Columbia, Canada. OBJECTIVE: "InspireNet", a virtual professional network for health professionals, is a living laboratory permitting documentation of when and how professionals take up Web 2.0 and social media. Ongoing evaluation documents our experiences in establishing, operating, and evaluating this network. METHODS: Overall evaluation methods included (1) tracking website use, (2) conducting two member surveys, and (3) soliciting member feedback through focus groups and interviews with those who participated in electronic communities of practice (eCoPs) and other stakeholders. These data have been used to learn about the types of support that seem relevant to network growth. RESULTS: Network growth exceeded all expectations. Members engaged with varying aspects of the network's virtual technologies, such as teams of professionals sharing a common interest, research teams conducting their work, and instructional webinars open to network members. Members used wikis, blogs, and discussion groups to support professional work, as well as a members' database with contact information and areas of interest. The database is accessed approximately 10 times per day. InspireNet public blog posts are accessed roughly 500 times each. At the time of writing, 21 research teams conduct their work virtually using the InspireNet platform; 10 topic-based Action Teams meet to address issues of mutual concern. Nursing and other health professionals, even those who rated themselves as computer literate, required significant mentoring and support in their efforts to adopt their practice to a virtual environment. There was a steep learning curve for professionals to learn to work in a virtual environment and to benefit from the available technologies. CONCLUSIONS: Virtual professional networks can be positioned to make a significant contribution to ongoing professional practice and to creating environments supportive of information sharing, mentoring, and learning across geographical boundaries. Nonetheless, creation of a Web 2.0 and social media platform is not sufficient, in and of itself, to attract or sustain a vibrant community of professionals interested in improving their practice. Essential support includes instruction in the use of Web-based activities and time management, a biweekly e-Newsletter, regular communication from leaders, and an annual face-to-face conference.
2014
Frisch N; Atherton P; Borycki E; Mickelson G; Cordeiro J; Novak LH; Black A
Journal Of Medical Internet Research
2014
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Journal Article
<a href="http://doi.org/10.2196/jmir.3018" target="_blank" rel="noreferrer">10.2196/jmir.3018</a>
Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
adolescent; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Journal Of Child Health Care
2015
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Journal Article
<a href="http://doi.org/10.1177/1367493513510630" target="_blank" rel="noreferrer">10.1177/1367493513510630</a>
Transition of care from child to adult mental health services: the great divide
Child; Humans; Young Adult; Great Britain; Adult; Health Policy; Health Services Needs and Demand; Health Services Research; Outcome and Process Assessment (Health Care); adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Child Health Services/organization & administration; Community Mental Health Services/organization & administration; Mental Disorders/diagnosis/psychology/therapy
PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the barriers at the interface between child and adolescent mental health services and adult mental health services and outcomes of poor transition. RECENT FINDINGS: Adolescence is a risk period for emergence of serious mental disorders. Child and adolescent mental health services and adult mental health services use rigid age cut-offs to delineate service boundaries, creating discontinuities in provision of care. Adolescent mental health services are patchy across the world. Several recent studies have confirmed that problems occur during transition in diverse settings across several countries. In physical health, there are emerging models of practice to improve the process and outcomes of transition, but there is very little comparable literature in mental healthcare. SUMMARY: Poor transition leads to disruption in continuity of care, disengagement from services and is likely to lead to poorer clinical outcomes. Some young people, such as those with neurodevelopmental disorders and complex needs, are at a greater risk of falling through the care gap during transition. Services need robust and high-quality evidence on the process and outcomes of transition so that effective intervention strategies can be developed.
2009
Singh SP
Current Opinion In Psychiatry
2009
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Journal Article
<a href="http://doi.org/10.1097/YCO.0b013e32832c9221" target="_blank" rel="noreferrer">10.1097/YCO.0b013e32832c9221</a>
A Systematic Review of Measures of End-of-Life Care and Its Outcomes
Outcome and Process Assessment (Health Care); Quality of Health Care; dying; Essential Data Set; end-of-life care; measures
Objective. To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.Data Sources. English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.Study Design. Systematic review of end-of-life care literature.Extraction Methods. Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.Principal Findings. Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies.Conclusions. In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.
2007
Mularski RA; Dy SM; Shugarman LR; Wilkinson A; Lynn J; Shekelle PG; Morton SC; Sun VC; Hughes RG; Hilton LK; Maglione M; Rhodes SL; Rolon C; Lorenz KA
Health Services Research
2007
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Journal Article
<a href="http://doi.org/10.1111/j.1475-6773.2007.00721.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2007.00721.x</a>
Documenting end of life decisions in residential aged care facilities in South Australia.
Female; Humans; Male; Health Services Research; Sensitivity and Specificity; advance care planning; DNAR; Resuscitation Orders; Attitude to Death; documentation; South Australia; Palliative Care/ut [Utilization]; Advance Directives/td [Trends]; Homes for the Aged; Life Support Care/st [Standards]; Skilled Nursing Facilities; Life Support Care/td [Trends]
OBJECTIVE: This research examined the provision of palliative care for residents with a non-cancer diagnosis including the use of advance directives and advance care planning as part of palliative care policies in residential aged care facilities in South Australia. There are no guidelines for recording residents' wishes if they are no longer competent., METHODS: Stage 1 involved a survey of 90 randomly selected aged care facilities. Stage 2 involved case studies of 69 residents, appropriate for palliative care, from 17 facilities and interviews with 15 directors of care., RESULTS: Most residential aged care facilities used forms to record residents' wishes about end of life care, but there was little consistency. Some had no palliative care policy and few facilities required a formal advance directive. Not all residents had formally appointed a proxy., CONCLUSIONS: Residential aged care facilities should be required to develop and implement a palliative care policy acknowledging the Accreditation Standards and State legislation and including a simple tool for advance care planning. Case conferencing could assist in discussing and documenting the resident's wishes. Public education is essential to increase community and professional awareness in order to promote empowerment for the increasing number of older people who will die in residential aged care facilities.
2005
Brown M; Grbich C; Maddocks I; Parker D; Connellan PR; Willis E
Australian And New Zealand Journal Of Public Health
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1467-842x.2005.tb00754.x" target="_blank" rel="noreferrer">10.1111/j.1467-842x.2005.tb00754.x</a>
Variations among Institutional Review Board reviews in a multisite health services research study
Female; Humans; United States; Adult; Prospective Studies; Research; Empirical Approach; Ethics Committees; Biomedical and Behavioral Research; Multi-site Ethics; Confidentiality/ethics; Health Services Research/ethics; Informed Consent/ethics; Patient Selection/ethics; Refusal to Participate
OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively collected during a multisite study of health care quality involving telephone interviews of 3,000 participants across 15 primary care sites. STUDY DESIGN: Records were reviewed to ascertain: (1) the type of IRB review conducted, (2) the number of days from submission to approval of the IRB application, (3) whether the IRB required patient notification and/or consent prior to the release of names, and (4) patient participation rates. DATA COLLECTION/EXTRACTION METHODS: The study coordinating center prepared a common study protocol for IRB submission and assisted sites with submission. The application, correspondence with the IRB, consent script, and patient letters were collected, reviewed, coded, and analyzed. PRINCIPAL FINDINGS: IRBs at the 15 sites and survey center varied in the type of IRB required and the number of days from submission to approval (range of 5-172 days). Four sites required patient notification in advance of the study; 2-11 percent of patients refused in opt-out sites and 37 percent in the single opt-in site. Participation among contacted patients did not appear to be related to patient notification procedures. CONCLUSIONS: Variations in IRB requirements can affect response rates and sample generalizability.
2005
Dziak K; Anderson R; Sevick MA; Weisman CS; Levine DW; Scholle SH
Health Services Research
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1475-6773.2005.00353.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2005.00353.x</a>
Institutional review boards and multisite studies in health services research: is there a better way?
Humans; Ethics Committees; Biomedical and Behavioral Research; Multi-site Ethics; Research/organization & administration; Organizational; Health Services Research/ethics; Efficiency; Multicenter Studies as Topic/ethics; Reference Standards
OBJECTIVE: The following paper examines the issue of whether the current system for ethics review of multisite health services research protocols is adequate, or whether there exist alternative methods that should be considered. PRINCIPAL FINDINGS: (1) Investigators at different sites in a multisite project often have very different experiences with respect to the requirements and requests of the review board. Other problems include the waste of time and resources spent on document preparation for review boards, and delays in the commencement of research activities. (2) There are several possible reasons why there is variability in ethics review. These include the absence of standardized forms, differences in the background and experiences of board members, the influence of institutional or professional culture, and regional thinking. (3) Given the limited benefits derived from the variability in recommendations of multiple boards and the numerous problems encountered in seeking ethics approval from multiple boards suggest that some sort of reform is in order. CONCLUSIONS: The increasing number of multisite, health services research studies calls for a centralized system of ethics review. The local review model is simply not conducive to multisite studies, and jeopardizes the integrity of the research process. Centralized multisite review boards, together with standardized documents and procedure, electronic access to documentation, and training for board members are all possible solutions. Changes to the current system are necessary not only to facilitate the conduct of multisite research, but also to preserve the integrity of the ethics approval process in general.
2005
Gold JL; Dewa CS
Health Services Research
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1475-6773.2005.00354.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2005.00354.x</a>
Impact of institutional review board practice variation on observational health services research
United States; Qualitative Research; Ethics Committees; Multi-site Ethics; Research/organization & administration; United States Department of Veterans Affairs; Health Services Research/methods
OBJECTIVE: To describe, qualitatively and quantitatively, the impact of a review by multiple institutional review boards (IRBs) on the conduct of a multisite observational health services research study. DATA SOURCE AND SETTING: Primary data collection during 2002, 2003, and 2004 at 43 United States Department of Veterans Affairs (VA) primary care clinics. DESIGN: Explanatory sequential mixed methods design incorporating qualitative and quantitative elements in sequence. DATA COLLECTION AND ABSTRACTION METHODS: Field notes and documents collected by research staff during a multisite observational health services research study were used in thematic analysis. Themes were quantified descriptively and merged with timeline data. PRINCIPAL FINDINGS: Approximately 4,680 hours of staff time over a 19-month period were devoted solely to the IRB process. Four categories of phenomena impacting research were observed: (1) Recruitment, retention, and communication issues with local site principal investigators (PIs). Local PIs had no real role but were required by IRBs. Twenty-one percent of sites experienced turnover in local PIs, and local PI issues added significant delay to most sites. (2) Wide variation in standards applied to review and approval of IRB applications. The study was designed to be qualified under U.S. government regulations for expedited review. One site exempted it from review (although it did not qualify for exemption), 10 granted expedited review, 31 required full review, and one rejected it as being too risky to be permitted. Twenty-three required inapplicable sections in the consent form and five required HIPAA (Health Insurance Portability and Accountability Act of 1996) consent from physicians although no health information was asked of them. Twelve sites requested, and two insisted upon, provisions that directly increased the risk to participants. (3) Multiple returns for revision of IRB applications, consent documents, and ancillary forms. Seventy-six percent of sites required at least one resubmission, and 15 percent of sites required three or more (up to six) resubmissions. Only 12 percent of sites required any procedural or substantive revision; most resubmissions were editorial changes to the wording of the consent document. (4) Process failures (long turnaround times, lost paperwork, difficulty in obtaining necessary forms, unavailability of key personnel at IRBs). The process required from 52 to 798 (median 286) days to obtain approval at each site. CONCLUSIONS: Several features of the IRB system as currently configured impose costly burdens of administrative activity and delay on observational health services research studies, and paradoxically decrease protection of human subjects. Central review with local opt-out, cooperative review, or a system of peer review could reduce costs and improve protection of human subjects.
2006
Green LA; Lowery JC; Kowalski CP; Wyszewianski L
Health Services Research
2006
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Journal Article
<a href="http://doi.org/10.1111/j.1475-6773.2005.00458.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2005.00458.x</a>
Socioeconomic differences in childhood hospital inpatient service utilisation and costs: prospective cohort study
Child; Female; Humans; infant; Male; England; Prospective Studies; Socioeconomic Factors; Health Services Research; Social Class; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; Epidemiologic Methods; Length of Stay/statistics & numerical data; Hospital Costs/statistics & numerical data; Hospitalized/classification/statistics & numerical data; Hospitals/utilization
STUDY OBJECTIVE: To examine the association between socioeconomic position at the time of birth and the use and cost of hospital inpatient services during the first 10 years of life. DESIGN: Analysis of a database of linked birth registrations, hospital records, and death certificates. Associations between the social class of the head of household and hospital inpatient service utilisation and costs during the first 10 years of life were analysed using multilevel multiple regression modelling. PARTICIPANTS AND SETTING: All 117 212 children born to women who both lived and delivered in hospital in Oxfordshire or West Berkshire, southern England, during the period 1 January 1979 to 31 December 1988. MAIN RESULTS: The study showed that children born into social classes II, III-NM, III-M, IV, and V were more likely to be admitted to hospital, spend longer in hospital overall, and generate greater hospital costs than children born into social class I. The adjusted effect regarding hospital inpatient admissions, days, and costs was 1.27 (95% CI: 1.26, 1.27), 1.20 (1.19, 1.21), and 1.50 (1.49, 1.53), respectively, for children born into social class V when compared with children born into social class I. The impact of social class on hospital inpatient admissions, days, and costs was most acutely felt during years 3-10 of life as compared with the first two years of life. CONCLUSIONS: Health service decision makers need to be alert to the adverse sequelae that might result from socioeconomic disadvantage when planning health services for children. Particular attention should be paid to targeting deprived populations with prevention interventions that are known to be effective.
2005
Petrou S; Kupek E
Journal Of Epidemiology And Community Health
2005
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Journal Article
<a href="http://doi.org/10.1136/jech.2004.025395" target="_blank" rel="noreferrer">10.1136/jech.2004.025395</a>
Challenging the framework for evidence in palliative care research
Humans; Palliative Care; Health Services Research; Research Design/standards; Randomized Controlled Trials/methods; Evidence-Based Medicine/standards
This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the literature in palliative care. Whilst randomized controlled trials (RCTs) remain the gold standard and are appropriate in many instances of palliative care research, there is a need for an alternate research design framework that incorporates contextual and compositional effects pertinent to palliative care research. A framework, entitled Equity-Based Evidence, is discussed as an approach to evidence-based knowledge development in palliative care.
2005
Aoun S; Kristjanson LJ
Palliative Medicine
2005
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Journal Article
<a href="http://doi.org/10.1191/0269216305pm1057oa" target="_blank" rel="noreferrer">10.1191/0269216305pm1057oa</a>
Health care transition: youth, family, and provider perspectives
Female; Humans; Male; Physician-Patient Relations; Family; Adult; Attitude to Health; Attitude of Health Personnel; Interdisciplinary Communication; Disabled Persons; Health Services Research; Focus Groups; Continuity of Patient Care; Patient Care Planning; Family Practice; adolescent; Adolescent Transitions; Health; Insurance; Chronic Disease/therapy; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Pediatrics/organization & administration; Adolescent Medicine/organization & administration; CHIR Best Practices; Insurance Coverage
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
2005
Reiss JG; Gibson RW; Walker LR
Pediatrics
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">10.1542/peds.2004-1321</a>
Oral morphine and respiratory function amongst hospice inpatients with advanced cancer
Female; Humans; Male; Analgesics; Aged; Middle Aged; Drug Monitoring; Health Services Research; Inpatients; Administration; Oral; Pain/drug therapy/etiology; Respiratory Function Tests; hospice care; Morphine/administration & dosage/adverse effects; Neoplasms/classification/complications/physiopathology; Opioid/administration & dosage/adverse effects; Respiratory Insufficiency/chemically induced/diagnosis
BACKGROUND: Respiratory depression is the opioid adverse effect feared most by physicians. This may hinder adequate dosing in cancer pain. The study was conducted to examine the respiratory function of patients with advanced cancer receiving significant doses (>100 mg/24 h) of oral morphine. PATIENTS AND METHODS: Consecutive pain-free hospice inpatients with advanced cancer receiving high-dose immediate-release oral morphine were evaluated. A single assessment of respiratory rate (RR), arterial blood gas (ABG), and peak flow rate (PFR) was made at assumed morphine steady state. Venous blood was drawn for a trough morphine plasma level. RESULTS: Of 31 patients who consented to examination, 20 completed the study assessment; 12 had chronic bronchitis. The median morphine dose was 30 mg 4-hourly (range 20 to 90 mg). Only one patient had evidence of ventilatory impairment. CONCLUSIONS: Morphine does not commonly cause chronic ventilatory impairment when given in this way in this population even in the presence of pre-existing or concurrent respiratory disease. Oral morphine given repeatedly in individualized dosage is a safe and efficacious analgesic in the majority of those with advanced cancer.
2003
Walsh TD; Rivera NI; Kaiko R
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s00520-003-0530-0" target="_blank" rel="noreferrer">10.1007/s00520-003-0530-0</a>
Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts
Humans; United States; Adult; Health Policy; Health Services Research; Quality of Health Care; Delphi Technique; Survivors; Non-U.S. Gov't; Research Support; Neoplasms
OBJECTIVES: To identify barriers to, models of care for, and initiatives to improve health care of adult survivors of childhood cancer. METHODS: Seventeen health care policy experts were asked to respond to the three objectives through a three-iterative Delphi process. RESULTS: Key barriers identified were that primary care physicians are unfamiliar with the health problems of survivors and survivors are often unaware of their risks. The recommended model of care would incorporate the chronic disease management model. Highest priority initiatives recommended were targeted education of primary care physicians and survivors, development and evaluation of standards of survivorship care, and a national web-based information center. CONCLUSIONS: The insights and recommendations of the panel provide a foundation intended to improve health care of cancer survivors.
2004
Mertens AC; Cotter KL; Foster BM; Zebrack BJ; Hudson MM; Eshelman D; Loftis L; Sozio M; Oeffinger KC
Health Policy (amsterdam, Netherlands)
2004
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Journal Article
<a href="http://doi.org/10.1016/j.healthpol.2003.12.008" target="_blank" rel="noreferrer">10.1016/j.healthpol.2003.12.008</a>
The effect of inpatient hospice units on hospice use post-admission
Cross-Sectional Studies; Female; Humans; Male; Aged; Health Services Research; Hospitals; 80 and over; Non-U.S. Gov't; Research Support; Connecticut; Terminally Ill/statistics & numerical data; Patient Admission/statistics & numerical data; Aftercare/organization & administration/utilization; Community/organization & administration; Hospice Care/organization & administration/utilization; Hospital Units/organization & administration/utilization; Palliative Care/organization & administration/utilization
The objective of this study was to determine whether having a hospice unit within the hospital increases the proportion of terminally ill patients who use hospice services (including home, nursing home, or inpatient hospice) post-admission. Using medical record data abstracted for 232 randomly selected patients with terminal cancer admitted to six community hospitals in Connecticut, we found that patients admitted to a hospital with a hospice unit were more likely to use hospice services (i.e., home hospice, nursing home hospice, or inpatient hospice) post-admission than patients admitted to a hospital without a hospice unit (unadjusted OR 5.7, 95% CI 3.1, 10.6). This effect persisted after adjusting for patient age, gender, marital status, documented discussions of prognosis, prior hospice use, and type of cancer.
2002
Erickson SE; Fried TR; Cherlin E; Johnson-Hurzeler R; Horwitz SM; Bradley EH
Home Health Care Services Quarterly
2002
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Journal Article
<a href="http://doi.org/10.1300/j027v21n02_05" target="_blank" rel="noreferrer">10.1300/j027v21n02_05</a>
Do we need another "stress and caregiving" study?
Humans; Health Services Research; Psychological; Stress; home care services
1989
Zarit SH
The Gerontologist
1989
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Journal Article
<a href="http://doi.org/10.1093/geront/29.2.147" target="_blank" rel="noreferrer">10.1093/geront/29.2.147</a>
An alternative in terminal care: results of the National Hospice Study
Female; Hospitalization; Male; United States; Adult; Aged; Health Services Research; Cancer Care Facilities; Outcome and Process Assessment (Health Care); quality of life; Non-U.S. Gov't; U.S. Gov't; Comparative Study; Models; Costs and Cost Analysis; Health; Insurance; Medicare/economics; Human; Theoretical; Support; Middle Age; home care services; Non-P.H.S.; Neoplasms/physiopathology/psychology/therapy; Hospices/classification/economics/organization & administration; Terminal Care/economics/organization & administration; Pain/epidemiology; Reimbursement/economics
Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.
1986
Greer DS; Mor V; Morris JN; Sherwood S; Kidder D; Birnbaum H
Journal Of Chronic Diseases
1986
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Journal Article
Advice seeking and appropriate use of a pediatric emergency department
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Questionnaires; Age Factors; Health Services Research; Severity of Illness Index; Sex Factors; Hospitals; Quebec; Emergency Service; adolescent; Hospital/utilization; Preschool; infant; Newborn; algorithms; Birth Order; Counseling/statistics & numerical data; Health Services Misuse/statistics & numerical data; Parents/education/psychology; Patient Acceptance of Health Care/statistics & numerical data; Pediatric/utilization; Teaching/utilization
OBJECTIVES: To determine whether seeking advice prior to an unscheduled visit to a pediatric emergency department (PED) influences appropriate use of this setting for minor illnesses. DESIGN: Cross-sectional questionnaire survey. SETTING: The medical emergency department of the Montreal (Quebec) Children's Hospital, a major referral and urban teaching hospital. PARTICIPANTS: Four hundred eighty-nine of 562 consecutive parents visiting the PED over two periods, one in February and the other in July 1989. INTERVENTIONS: None. MEASUREMENTS/MAIN RESULTS: Parents of children between 0 and 18 years of age visiting the PED were asked whether they had previously sought advice from family, friends, or a physician. Other factors possibly related to the decision to seek care were also measured. Appropriateness was rated, blind to discharge diagnosis, by two pediatricians using a structured series of questions incorporating the child's age, time of the visit, clinical state, and problem at presentation. Thirty-four percent of visits among respondents were judged appropriate. In bivariate analysis, appropriate visits occurred significantly more often when a parent spoke to both a physician and a nonphysician (47%) prior to visiting the PED than when no advice was sought (29%; P < .05). In multivariate analysis, having a regular physician and being one of two children also contributed to appropriateness. CONCLUSIONS: Appropriate use of the PED was positively influenced by seeking prior advice from both a physician and family member, having a regular physician, and having prior child care experience.
1993
Oberlander T; Pless IB; Dougherty GE
American Journal Of Diseases Of Children
1993
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Journal Article
<a href="http://doi.org/10.1001/archpedi.1993.02160320065021" target="_blank" rel="noreferrer">10.1001/archpedi.1993.02160320065021</a>
Learning to care for people with chronic illness facing the end of life
United States; Health Services Accessibility; Health Services Research; Quality of Health Care; Professional Patient Relationship; Death and Euthanasia; Palliative Care/economics/standards/trends; Policy Making; RDF Project; Terminal Care/economics/standards/trends
2000
Lynn J
Jama
2000
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Journal Article
<a href="http://doi.org/10.1001/jama.284.19.2508" target="_blank" rel="noreferrer">10.1001/jama.284.19.2508</a>
Frequent school-based clinic utilization: a comparative profile of problems and service needs
Female; Humans; Male; Health Services Needs and Demand; Socioeconomic Factors; Health Services Research; Mental Health; Sex Factors; Continental Population Groups; adolescent; Risk-Taking; School Health Services/utilization; Educational Status; Ambulatory Care Facilities/utilization; Students/statistics & numerical data
The purpose of this study is to compare frequent users of school-based clinic services with students who have an average rate of utilization. SAMPLE: Of the 1413 students enrolled in a Denver school-based clinic (DSBC) during the 1989-1990 school year, frequent clinic users (n = 73) were defined as those who visited the clinic 15 times or more (range, 15-72 visits per year). Average users (n = 82) were defined as students who visited the clinic three times during the year (the mean and median number of visits per student enrolled). Average users were compared. RESULTS: The average utilizers were found to be representative of the entire student population based on age, race, gender, and grade. The frequent users had more females (71%) and a lower grade point average (GPA) (2.11) than the average users (52% female, 2.54 GPA; p
1993
Wolk LI; Kaplan DW
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
1993
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Journal Article
<a href="http://doi.org/10.1016/1054-139x(93)90118-9" target="_blank" rel="noreferrer">10.1016/1054-139x(93)90118-9</a>
Preparation for oncology settings: what hospice social workers say they need
Humans; Attitude of Health Personnel; Cooperative Behavior; Health Services Research; Needs Assessment; Inservice Training; Florida; Professional Competence; patient care team; Neoplasms/nursing; Hospice Care/manpower/methods; Oncologic Nursing/education/manpower; Social Work/education
According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study investigating the influence of their formal academic training, informal on-the-job training, and related professional and personal experiences on their preparation for oncology social work. Findings suggest that social workers view both the generalist or core courses as well as the specialist and elective courses as important in preparing them for oncology social work. In addition, on-the-job training focusing on medical terminology, interdisciplinary, collaboration, death and dying and the integration of personal experiences are important for continuing growth and success in this work. Implications for social work practice, research, and formal and informal educational opportunities are discussed.
1999
Kovacs PJ; Bronstein LR
Health & Social Work
1999
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Journal Article
<a href="http://doi.org/10.1093/hsw/24.1.57" target="_blank" rel="noreferrer">10.1093/hsw/24.1.57</a>
Long-stay patients in the pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Hospital Mortality; Logistic Models; Treatment Outcome; Comorbidity; Health Services Research; Severity of Illness Index; Risk Factors; Quality of Health Care; Sensitivity and Specificity; Analysis of Variance; Predictive Value of Tests; Cost Savings; Preschool; infant; algorithms; Pediatric/utilization; ICU Decision Making; United States/epidemiology; Age Distribution; Discriminant Analysis; Patient Admission/statistics & numerical data; Length of Stay/statistics & numerical data; Emergencies; Decision Trees; Intensive Care/economics/standards
OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of long-stay patients (LSPs) and developed a prediction model to identify LSPs for early quality and cost saving interventions. DESIGN: Nonconcurrent cohort study. SETTING: A total of 16 randomly selected PICUs and 16 volunteer PICUs. PATIENTS: A total of 11,165 consecutive admissions to the 32 PICUs. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: LSPs were defined as patients having a length of stay greater than the 95th percentile (>12 days). Logistic regression analysis was used to determine which clinical characteristics, available within the first 24 hrs after admission, were associated with LSPs and to create a predictive algorithm. Overall, LSPs were 4.7% of the population but represented 36.1% of the days of care. Multivariate analysis indicated that the following factors are predictive of long stays: age <12 months, previous ICU admission, emergency admission, no CPR before admission, admission from another ICU or intermediate care unit, chronic care requirements (total parenteral nutrition and tracheostomy), specific diagnoses including acquired cardiac disease, pneumonia, and other respiratory disorders, having never been discharged from the hospital, need for ventilatory support or an intracranial catheter, and a Pediatric Risk of Mortality III score between 10 and 33. The performance of the prediction algorithm in both the training and validation samples for identifying LSPs was good for both discrimination (area under the receiver operating characteristics curve of 0.83 and 0.85, respectively), and calibration (goodness of fit, p = .33 and p = .16, respectively). LSPs comprised from 2.1% to 8.1% of individual ICU patients and occupied from 15.2% to 57.8% of individual ICU bed days. CONCLUSIONS: LSPs have less favorable outcomes and use more resources than non-LSPs. The clinical profile of LSPs includes those who are younger and those that require chronic care devices. A predictive algorithm could help identify patients at high risk of prolonged stays appropriate for specific interventions.
2001
Marcin JP; Slonim AD; Pollack MM; Ruttimann UE
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200103000-00035" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00035</a>
Hospice care for children: past, present, and future
Child; Humans; Health Services Research; Forecasting; adolescent; Preschool; infant; mortality; administration/statistics &; Child Health Services/organization &; Home Care Services/organization &; Hospices/organization &; numerical data/trends
Of the 100,000 children who die each year in the United States, close to 15,000 children could benefit from hospice/home care services. This article describes the concept of pediatric hospice care, reviews the Martinson study that was conducted in the 1970s, gives a chronological report on some institutions that provide hospice care for children in the United States and other parts of the world, and discusses the future of pediatric hospice care.
1993
Martinson IM
Journal Of Pediatric Oncology Nursing
1993
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Journal Article
<a href="http://doi.org/10.1177/104345429301000304" target="_blank" rel="noreferrer">10.1177/104345429301000304</a>
Quality-of-life measures in chronic diseases of childhood
Child; Female; Humans; Male; Great Britain; Health Services Research; Health Status Indicators; quality of life; adolescent; Preschool; Chronic disease; disabled children; Self Assessment (Psychology)
SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? OBJECTIVES: (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. METHOD: Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. RESULTS: Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)
2001
Eiser C; Morse R
Health Technology Assessment (winchester, England)
2001
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Journal Article
<a href="http://doi.org/10.3310/hta5040" target="_blank" rel="noreferrer">10.3310/hta5040</a>
The WHO objectives for palliative care: to what extent are we achieving them?
Professional-Family Relations; Health Services Research; Outcome Assessment (Health Care); Organizational Objectives; Holistic Health; Non-U.S. Gov't; Pastoral Care; social support; Human; Support; Health Priorities; Terminal Care/methods; Hospices/standards; World Health Organization; Palliative Care/standards
This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization. It outlines the gaps in the literature and suggests priorities for future research. Areas of unmet need are documented and it is argued that research comparing outcomes across care settings and relating particular care practices to outcome measures would help to set care targets. Further definition of the expected outcomes of psychological and spiritual care, as well as care for carers, is recommended. Available measures are reviewed and suggestions made for the development of additional measures. Finally, some key methodological problems are discussed, including making cross-setting comparisons, identifying appropriate outcome measures, prioritizing patients' own identification of outcomes, using different methodologies as death approaches, and combining different perspectives offered by patients, lay carers and professional carers. The role of qualitative data as an indicator of rating scale validity is discussed in this context.
1995
Johnston G; Abraham C
Palliative Medicine
1995
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Journal Article
Quality of health care. Part 4: The origins of the quality-of-care debate
United States; Cost Control; Outcome Assessment (Health Care); Health Care Costs; Health Services Research; Quality of Health Care/economics; Professional Practice/trends
1996
Blumenthal D
New England Journal Of Medicine
1996
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Journal Article
Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.
Humans; Terminal Care; Advance Directives; Victoria; Qualitative Research; Health Services Research; Nursing Staff; advance care planning; DNAR; Palliative Care; Organizational; Models; Community Health Services; Program Evaluation/mt [Methods]; Community Health Services/og [Organization & Administration]
AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services., DESIGN: Multisite action research approach., METHODS: Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool., RESULTS: The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies., CONCLUSION: The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes., RELEVANCE TO CLINICAL PRACTICE: The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services.Copyright © 2012 Blackwell Publishing Ltd.
Blackford J; Street A
Journal Of Clinical Nursing
2012
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2012.04179.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2012.04179.x</a>
Looking back to move forward: Reflections and lessons learned about transitions to adulthood for youth with disabilities.
Adolescence; Child Development; Disability; Health Services Research; Transition
BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth with disabilities and their families. The objective of this narrative review is to reflect on the work conducted by CanChild researchers, in collaboration with stakeholders, about transitions to adulthood for youth and young adults with disabilities since the publication of the best practice guidelines in 2009. METHODS: A narrative review was undertaken through a reflective approach to critically review and summarize all the transition studies completed at CanChild since 2009. The following data were systematically extracted from articles and research reports: study (authors and year of publication), purpose, methods, sample, and lessons learned. RESULTS: Five studies were identified. An analysis of the findings revealed five key themes that represented lessons learned since the publication of the Ontario-based best practice guidelines: promoting a noncategorical and lifecourse approach to care; active collaboration among stakeholders involved in transition; capacity building through peer mentorship; greater understanding of the significance of opportunities and experiences; as well as the significance of information, education, and research. CONCLUSIONS: This is the first review to provide perspective on trends in transition research since the publication of the best practice guidelines in 2009. It is hoped that this reflection will assist in the ongoing work of researchers, service providers, policy makers, communities, and families in the area of adult transitions for youth with disabilities.
Nguyen T; Stewart D; Gorter JW
Child: Care, Health And Development
2017
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<a href="https://doi.org/10.1111/cch.12534" target="_blank" rel="noreferrer">10.1111/cch.12534</a>
'Why Does It Happen Like This?' Consulting With Users and Providers Prior to an Evaluation of Services for Children with Life Limiting Conditions and their Families
Family; Patient Referral; Rehabilitation; Supply And Distribution; Adolescent; Child; Child Health Care; Handicapped Child; Health Service; Health Services Research; Human; Information Processing; Interview
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Journal Of Child Health Care : For Professionals Working With Children In The Hospital And Community
2015
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<a href="https://doi.org/10.1177/136749351351063">10.1177/1367493513510630</a>
“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.
Adolescent; Child; Clinical Competence/standards; Education Medical/standards; Female; Focus Groups; Health Services Research; Hospice Care/standards; Humans; Male; Pediatrics/education; Pediatrics/standards; Physician-patient Relations
Education And Training; Hospice Care; Pediatrics; Palliative Care; Qualitative Research
Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and parents using hospice services has not yet been fully explored.
OBJECTIVES:
(1) To explore perceptions of what medical students must learn to become 'good doctors' among children, parents and staff in a hospice. (2) To collaborate with children/parents and staff to develop educational materials based on their lived experiences for medical students. (3) To assess feasibility of student-led action research in a children's hospice to develop research skills.
METHODS:
Prospective ethical approval received. Volunteer children (n=7), parents (n=5) and staff (n=6) were recruited from a children's hospice. Data were generated in audio-recorded semistructured focus groups, individual interviews and/or activity workshops. Participants discussed what newly qualified doctors' needed to care for children with life-limiting conditions. Audio data were transcribed and combined with visual data for thematic analysis. Findings were refined by participant feedback. This paper presents thematic findings and educational material created from the project.
RESULTS:
Thematic analysis identified six learning themes: (1) treat children as individuals; (2) act as a person before being a doctor; (3) interpersonal communication; (4) appreciate the clinical environment; (5) learn from children, parents and other staff; (6) how to be a doctor as part of a team. The student researcher successfully developed qualitative research skills, coproducing materials with participants for sharing learning derived from lived experiences.
CONCLUSIONS:
All participants were willing and able to make valuable contributions, and believed that this was a worthwhile use of time and effort. Further work is required to understand how best to integrate the experiences of children in hospices into medical education.
Spalding J; Yardley S
Bmj Supportive & Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).