Developing outcomes for educational services: a children's rights-based approach

This article provides a rationale for and insight into an explicit children's rights-based approach to the identification of outcomes for proposed educational interventions. It presents a critical reflection on a research project which sought to integrate international children's rights standards into the design of services through a children's rights audit of potential outcomes and the meaningful engagement of children in the research and service design processes. While children are involved increasingly as co-researchers in qualitative studies, it is less common for this to occur in quantitative studies. This article offers some additional insight into children's participation in the interpretation of data from a large-scale baseline survey. The article concludes with an argument that international children's rights law provides not just a legal imperative but also a comprehensive framework with which to assert the case for increased recognition of children as salient stakeholders in all aspects of service design.

Constructing a global understanding of the social ecology of leaving out of home care

Engagement with globalisation is growing in the field of youth transitions from out of home care. This includes cross national exchange of research, policy and practise, regional advocacy networking and global policy development. Furthering this emerging international child welfare perspective requires extending it to countries in the developing world and building conceptual frameworks which encompass a social ecology of care leaving, including its global dimension, the latter needs to address not only the needs, expectations and rights of care leavers but also the theories of change underpinning service design and delivery. Such a model is presented combining resilience and social capital as personal assets situated within a social ecology of support. To illustrate how this provides a means to help engage with the experience of countries where there appears to be very little information available on care leaving, a small scale South African initiative is considered. SA-YES is a youth mentoring project for young people leaving a variety of out of home placements. Planned as a three-year pilot, initial results are encouraging but require more rigorous evaluation focusing on program process and outcomes, quality of interpersonal relationships and synchronisation with cultural expectations and policy environment.

Towards improving the co-ordination of supportive cancer care services in the community

In this paper an evaluation approach to assess the co-ordination of supportive community cancer care is presented. The aim of the study was to identify current gaps in co-ordination of services in a selected region in the province of Ontario, Canada, determine how consistent these gaps were across the province of Ontario, and develop service design considerations for improving the co-ordination of supportive cancer care services in the province of Ontario. The study addressed services required by two populations - clients who had been recently diagnosed and those in the palliative stages of cancer. The evaluation was theory-driven and incorporated evidence from three methods: a systematic literature review, a community case study and a provincial scan. The results revealed the absence of a formal supportive cancer care system and a complex community care system. Supportive cancer care was shown to be delivered by a range of generalist programs that lacked specialisation in addressing the unique needs of cancer clients. In addition, there was no clear evidence of leadership for co-ordinating supportive cancer care, where client care was most often provided by multiple programs at any given point in time. The study generated recommendations to improve co-ordination of supportive cancer care at both the administrative as well as direct care level. © 2004 Elsevier Ireland Ltd. All rights reserved.

Outcomes of surgical bleb revision for complications of trabeculectomy.

OBJECTIVE: To describe the results of revision surgery for complications of trabeculectomy in a case series from an academic glaucoma service. DESIGN: Retrospective case series. PARTICIPANTS: A total of 177 eyes of 167 adult patients who underwent revision of trabeculectomy at the Wilmer Eye Institute between 1994 and 2007. METHODS: Three indications for surgery were identified: hypotony without leak, bleb leak, and bleb dysesthesia. Revision was deemed successful when all of the following were true: the primary indication was eliminated, further intraocular pressure (IOP)-lowering surgery was not required, no major complication occurred, and a new bleb-related problem did not develop. Patients with less than 3 months of follow-up were excluded unless failure occurred earlier. Surgical procedures included variations on excision of thin or leaking conjunctiva with advancement. MAIN OUTCOME MEASURES: Change in IOP, change in visual acuity, need for further IOP-lowering surgery, and complications after bleb revision. RESULTS: Subjects' mean age was 67+/-14 years, 54% were female, and mean follow-up was 2.8+/-2.7 years, with a mean interval from trabeculectomy to revision of 3.5+/-3.7 years. Overall success rate was 63% (112/177), which was slightly higher for leak repair (65%; 64/98) and hypotony (63%; 32/51) than for dysesthesia (57%; 16/28) indications. By Kaplan-Meier analysis, overall cumulative success rates at 1, 2, 5, and 10 years after bleb revision were 80%, 75%, 50%, and 41%, respectively. IOP and visual acuity improved significantly in both hypotony and leak groups (P values ranging from 0.004 to <0.0001). Additional IOP-lowering surgery was required in 9%. In multivariate regression analysis adjusting for age, gender, and number of prior surgeries, patients with glaucoma other than primary open-angle glaucoma were twice as likely to have failed bleb revision. CONCLUSIONS: Surgical bleb revision often provides successful resolution of bleb-related complications. Most patients maintain IOP control without need for further IOP-lowering surgery. FINANCIAL DISCLOSURE(S): Proprietary or commercial disclosure may be found after the references.

The Family Model - A transgenerational approach to mental health in families: personal, clinical, educational, research, systems and policy perspectives

The Family Model – A transgenerational approach to mental health in families This workshop will provide an overview on The Family Model (TFM) and its use in promoting and facilitating a trans­generational family focus in Mental Health services, over the past 10­ - 15 years. Each of the speakers will address a different perspective, including service user/consumer, clinical practice, education & training, research and policy. Adrian Falkov (chair) will provide an overview of TFM to set the scene and a ‘policy to practice’ perspective, based on use of TFM in Australia. Author: Heide Lloyd. The Family Model ­ A personal (consumer/patient) perspective | United Kingdom Heide will provide a description of her experiences as a child, adult, parent & grandparent, using TFM as the structure around which to ‘weave’ her story and demonstrate how TFM has assisted her in understanding the impact of symptoms on her & family and how she has used it in her management of symptoms and recovery (personal perspective). The Family Model ­ Education & training perspective ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway Authors: ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway This combined (UK & Norwegian) presentation will cover historical background to TFM and its use in eLearning (the Social Care Institute for Excellence)and a number of other UK initiatives, together with a description of the postgraduate masters course at the University Oslo/Akershus, using TFM. The Family Model ­ A research perspective PhD Anne Grant | Northern Ireland Author: PhD Anne Grant | Ireland Anne Grant will describe how she used TFM as the theoretical framework for her PhD looking at family focused (nursing) practice in Ireland. The Family Model ­ A service systems perspective ­ Mary Donaghy | Northern Ireland Authors: PhD Adrian Falkov | Australia ­ Mary Donaghy | N Ireland Mary Donaghy will discuss how TFM has been used to support & facilitate a cross service ‘whole of system’ change program in Belfast (NI) to achieve improved family focused practice. She will demonstrate its utility in achieving a broader approach to service design, delivery and evaluation.

Outcome measurement and service evaluation - a note on research design.

The purpose of this research note is to demonstrate how an individualised quality of life instrument could be adapted to provide a more accurate estimate of the impact of a social service on a person’s quality of life. An increase in quality of life between the start and end of a service is often taken as an indication that the service impacted positively on quality of life. The modifications to the quality of life instrument suggested in this paper show that this assumption is not always accurate and should be questioned directly.

The design and implementation of a study to investigate the effectiveness of community vs hospital eye service follow-up for patients with neovascular age-related macular degeneration with quiescent disease

Introduction
Standard treatment for neovascular age-related macular degeneration (nAMD) is intravitreal injections of anti-VEGF drugs. Following multiple injections, nAMD lesions often become quiescent but there is a high risk of reactivation, and regular review by hospital ophthalmologists is the norm. The present trial examines the feasibility of community optometrists making lesion reactivation decisions.

Methods
The Effectiveness of Community vs Hospital Eye Service (ECHoES) trial is a virtual trial; lesion reactivation decisions were made about vignettes that comprised clinical data, colour fundus photographs, and optical coherence tomograms displayed on a web-based platform. Participants were either hospital ophthalmologists or community optometrists. All participants were provided with webinar training on the disease, its management, and assessment of the retinal imaging outputs. In a balanced design, 96 participants each assessed 42 vignettes; a total of 288 vignettes were assessed seven times by each professional group.The primary outcome is a participant's judgement of lesion reactivation compared with a reference standard. Secondary outcomes are the frequency of sight threatening errors; judgements about specific lesion components; participant-rated confidence in their decisions about the primary outcome; cost effectiveness of follow-up by optometrists rather than ophthalmologists.

Discussion
This trial addresses an important question for the NHS, namely whether, with appropriate training, community optometrists can make retreatment decisions for patients with nAMD to the same standard as hospital ophthalmologists. The trial employed a novel approach as participation was entirely through a web-based application; the trial required very few resources compared with those that would have been needed for a conventional randomised controlled clinical trial.

A Home from Hospital service for older people.

Current policy and practice emphasises much more than ever before a need for purchasers and providers to reduce appropriately the length of hospital stay. Consequently, a number of early discharge “schemes” have been developed. This paper presents the findings from an evaluation of a “home from hospital” (HFH) scheme. The HFH service provides a maximum of six weeks intensive domiciliary care for older people on their discharge from hospital. The aim of the service is to facilitate early discharge from hospital and to assist patients to regain independence. The study reported here elicited the views and perceptions of clients and professionals involved in the HFH scheme about the quality, efficiency and effectiveness of the service. Seventy-five clients were discharged from hospital to the HFH scheme during a two month period and those who consented to participate in the study were interviewed after discharge from the HFH service (n = 40). Participants had attended hospital for various conditions but the largest group were fracture patients. Hospital staff and community based professionals completed a questionnaire about the service. Overall, clients and professionals perceived the HFH scheme as a beneficial service, though some minor problems existed at an individual level. Clients’ dependency levels generally decreased during their time on the scheme. Research using a controlled design is necessary in order to draw firm conclusions about the cost-effectiveness of a HFH service. Overall, home-from-hospital appears to be an effective model of an early discharge scheme worthy of further attention.

Empowerment, Quality of Life and Service Satisfaction: comparisons between hospitalised continuing care patients and deinstitutionalised patients

Objectives: Recent advances in mental health care policy and service delivery have lead to the development of community care initiatives which have enabled those individuals traditionally cared for in hospital environments to be resettled successfully in community living arrangements that foster an ethos of empowerment and recovery. This study sought to identify differences between a hospital continuing care group (n = 16) and a community placement group (n = 20) in relation to quality of life, satisfaction and levels of empowerment. Method: The study was a cross-sectional design. It follows up a cohort of individuals identified as the ‘hospital continuing care group’ (365+ consecutive days in psychiatric hospital care) by Homefirst Community Trust in Northern Ireland. A proportion of this population has been resettled into community care environments and some continue to reside in hospital. Patients both in the hospital continuing care group and the community placement group completed two standard questionnaires that covered a number of variables including empowerment, quality of life and service satisfaction. Results: There were significant differences between the hospital continuing care and community placement groups across scores on service satisfaction, quality of life, and empowerment in the current study. Hypotheses relating to service satisfaction (z = -4.117; p

The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

Service preferences among family caregivers of the terminally ill

Objective: The ability of families to assume caregiving responsibilities is contingent on material, social, and professional support. Inadequate or inappropriate support to the terminally ill and their family caregivers can result in the misuse of resources and add burden to the family. In this report, we describe service preferences among informal caregivers of the terminally ill. Design: Three hundred seventy-three caregivers participated in telephone interviews at two points in time: when the terminally ill person was designated as palliative and 5 months subsequent to the first interview. In the case that the care recipient died during the study period, the caregiver participated in the interview three months after the death. Measures: After reviewing possible services received by the care recipients and caregivers, caregivers were asked to identify the five services they found most valuable and which services they would have liked to have had or received more of when caregiving. Results: The five services caregivers reported as most valuable included: in-home nursing care, (90.7%); family physicians, (45.6%); medical specialists, (46.4%); housekeeping, (23.6%); and, religious support, (11.3%). The five most frequently reported services that family caregivers would have liked to have received or had more available included: housekeeping, (13.1%); caregiver respite, (10.2%); in-home nursing care, (8.0%); personal support workers, (4.6%); and, self-help/support groups, (3.8%). Analyses revealed that most (64.8%) perceived service needs were of a supportive nature for caregivers. Caregiver perceptions of the value and perceived need of services were consistent over time and into bereavement. Logistic regression analyses suggested that younger caregivers who were not employed, reported higher levels of burden and cared for someone with a diagnosis of cancer had greater perceived service needs. Conclusions: The findings reported in this paper provide important insights into caregiver perceptions of valued services when caring for a terminally ill family member. These finding also highlight the stability of caregiver service perceptions over time and into bereavement.

Resource utilization and cost analyses of home-based palliative care service provision:The Niagara West End-of-Life Shared-Care Project

Background: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. Aim: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. Design: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Results: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 CAN) were 1,625,658.07 - or 17,112.19 per patient/117.95 per patient day. Conclusion: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations. © 2012 The Author(s).