Home on a care order: who the children are and what the care order is for

Compared to children in other placements, there is much less known about the characteristics and needs of children in the UK who are returned to their birth parents with a care order still in place. That is in spite of evidence to suggest they face more difficulties than young people in other placements. Based on a 2009 census of looked after children in Northern Ireland, just under 10% (n = 193) were found to be living at home under a care order. Case file reviews were conducted for a quarter of these young people (n = 47) to generate descriptive statistics showing a very diverse population. That was followed by semi-structured interviews with members of eight families (ten children and eight birth parent/s), providing transcripts for thematic analysis. Nearly half of the young people whose case files were reviewed had experienced at least one home placement breakdown, but nearly two thirds had a stable last home placement. Care orders appeared to serve two functions: to give legal authority to social services for the monitoring of placements, and to facilitate family access to family support services. Replacing some care orders with supervision orders might better align legal status and actual function.

Open Adoption: Adoptive Parents' Experiences of Birth Family Contact and Talking to Their Child about Adoption

The trend towards more open adoption presents adopters with unique parenting challenges associated with satisfying the child’s curiosity about their origins, and maintaining relationships with birth family through contact. This paper focuses on the experiences of 20 sets of adoptive parents who were interviewed as part of the Northern Ireland Care Pathways and Outcomes Study. Interviews were analysed following the principles of Interpretative Phenomenological Analysis (IPA). It explores adoptive parents’ experience of talking to their child about adoption, and of post-adoption contact with members of the birth family. Adopters discussed adoption sensitively with their child, but were concerned that difficult and complex family histories would present a risk to the child’s self-esteem and emotional well-being. All forms of contact proved emotionally and practically burdensome, however adopters were committed to making it work for the child’s benefit, and were open to increased contact should the child wish it in the future. There was little relationship with birth family outside of formal contact. The study reveals a need for a mechanism to facilitate communication with birth family if adopters are to be able to respond to the child’s changing need for contact and information.

Family Caregivers and Palliative Care: Current Status and Agenda for the Future

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.

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.

Early pain experience, child and family factors, as precursors of somatization:a prospective study of extremely premature and fullterm children

In a prospective study of 36 children who were extremely low birthweight (ELBW: <1000 g) preterm infants and 36 matched full-term controls, differences were found in somatization at age 4 1/2 years. Only children who had been extremely premature, and thereby experienced prolonged hospitalization and repeated medical intervention in infancy, had clinically high somatization scores on the Personality Inventory for Children. The combination of family relations at age 4 1/2 years, neonatal intensive care experience, poor maternal sensitivity to child cues in mother-child interaction observed at age 3 years, and child avoidance of touch or holding at age 3, predicted somatization scores, prior to school entry. Due to the known higher incidence of actual medical problems among children with a history of extreme prematurity, the high somatization ELBW children were compared with the normal somatization ELBW children. There were no differences in prevalence of actual medical problems between the 2 ELBW groups, and the importance of maternal factors in relation to somatization was confirmed. Child temperament at age 3, but not personality at 4 1/2, was related to somatization. The etiology of recurrent physical complaints of no known medical cause appears to be a multi-dimensional problem. Non-optimal parenting may contribute to the development of inappropriate strategies for coping with common pains of childhood, or of chronic pain patterns, in some children who have experienced prolonged or repeated pain as neonates.

Family caregiver views on patient-centred care at the end of life

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member. Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses. Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M=4.3 (SD=1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex. Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.

A Family Booklet About Comfort Care in Advanced Dementia:Three-Country Evaluation

Objectives: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations. Design: Retrospective study. Setting: Long term care facilities in French-speaking Canada, and the Netherlands and Italy.
Participants: Bereaved family (n = 138).
Measurements: An 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet.
Results: Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents.
Conclusion: The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early. © 2012 American Medical Directors Association, Inc.
Keywords: Decision aid; decision making; advance care planning; palliative care; nursing homes; dementia.

A shared care model pilot for palliative home care in a rural area:Impact on symptoms, distress, and place of death

Context: Shared care models integrating family physician services with interdisciplinary palliative care specialist teams are critical to improve access to quality palliative home care and address multiple domains of end-of-life issues and needs. Objectives: To examine the impact of a shared care pilot program on the primary outcomes of symptom severity and emotional distress (patient and family separately) over time and, secondarily, the concordance between patient preferences and place of death. Methods: An inception cohort of patients (n = 95) with advanced, progressive disease, expected to die within six months, were recruited from three rural family physician group practices (21 physicians) and followed prospectively until death or pilot end. Serial measurement of symptoms, emotional distress (patient and family), and preferences for place of death was performed, with analysis of changes in distress outcomes assessed using t-tests and general linear models. Results: Symptoms trended toward improvement, with a significant reduction in anxiety from baseline to 14 days noted. Symptom and emotional distress were maintained below high severity (7-10), and a high rate of home death compared with population norms was observed. Conclusion: Future controlled studies are needed to examine outcomes for shared care models with comparison groups. Shared care models build on family physician capacity and as such are promising in the development of palliative home care programs to improve access to quality palliative home care and foster health system integration. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Comparing long-term placements for young children in care: The care pathways and outcomes study - Northern Ireland

When deciding on a long-term placement for a young child in care, a key challenge is to identify one that will enable children to achieve their full potential and enhance their health and wellbeing in the longer term. However, there is a dearth of research evidence that compares how children fare in the longer term across placement options.

The Care Pathways and Outcomes study is one of a small number of studies internationally that takes this form of longitudinal comparative approach. Since 2000, it has been tracking the placement profile for a population of children who were under the age of five and in care in Northern Ireland on a particular census day, and gathering comparative data on how the children and their parents/carers have been coping across the different types of placements provided.

This book reports on the most recent phase of the study, which involved interviews with a sub-group of the children (aged 9 to 14) and their parents/carers in adoption, foster care, kinship care, on residence order, and living with birth parents. Similarities and differences were explored between placement types, in terms of children’s attachment, self-concept, education, health and behaviour, their carers’ stress, social support, family communication, and contact with birth families.

This contemporary study contributes to evidence-based practice and provides a research base for decision-making throughout the UK.

Predicting family caregiver psychosocial functioning in palliative care

Health professionals are expected to support family caregivers of patients requiring palliative care. However, there is a dearth of empirical evidence to help clinicians identify caregivers who might be at risk of poor psychosocial functioning.

A psycho-educational intervention for family caregivers of patients receiving palliative care:a randomized controlled trial

This study describes an evaluation of a psycho-educational intervention for family caregivers of patients dying of cancer at home. In a randomized controlled trial, participants (n = 106) received standard home-based palliative care services (n = 52) or these services plus the new intervention (n = 54). Data were collected at three time points: upon commencement of home-based palliative care (Time 1), five weeks later (Time 2), and then eight weeks following patient death (Time 3). No intervention effects were identified with respect to preparedness to care, self-efficacy, competence, and anxiety. However, participants who received the intervention reported a significantly more positive caregiver experience than those who received standard care at both Times 2 and 3. The findings indicate that it is possible to increase caregiver rewards despite being immersed in challenging circumstances that often yield considerable negative psychosocial sequelae. Furthermore, it is feasible for health professionals to discuss emotive topics, such as impending death, with caregivers without adverse effects.

Meeting the supportive needs of family caregivers in palliative care:challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.

Improving the educational achievement of young people in out-of-home care

A strong link between research and practice is essential to ensure
that the best available evidence gets into the hands of child welfare
practitioners, who are faced with the daunting task of making decisions
about vulnerable children on a daily basis. In 2007, a group of
senior child welfare leaders in the province of Ontario (Canada) created
a research dissemination model that replicated the worldrenowned
UK program, Research in Practice (http://www.rip.org.
uk). Practice and Research Together (PART; www.partontario.org) is
an Ontario consortium of 45 child welfare organizations whose mandate
is to disseminate research to its member agencies, which include
85% of the local child welfare organizations in the province. Each
member pays an annual membership-fee that is based on its size
(Dill & Shera, 2011). A key factor in PART's success has been its ability
to link its program offerings (i.e., webinars, literature reviews, conferences,
and publications) to issues of real-world relevance to child
welfare practitioners and senior leaders. A central and highly anticipated
program offering is PART's annual conference (learning
event). These conferences bring evidence to bear on practice in priority
areas in child welfare.
On May 31 and June 1 and 2, 2011, PART, in collaboration with the
Centre for Research on Educational and Community Services (CRECS)
at the University of Ottawa, co-hosted an international conference in
Ottawa that was focused on improving the educational achievement
of young people in out-of-home care (hereafter, in care). Speakers
from five countries – Canada, USA, Germany, Sweden, and UK – presented
the results of their research at the conference. The speakers
addressed three main topic areas: the disadvantaged socio-political
status of young people in care, many of whom do not complete secondary
or post-secondary education; innovative interventions to improve
their educational outcomes; and the effectiveness of tutoring,
which is the most common educational intervention for young people
in care.