Preferences for place of care and place of death among informal caregivers of the terminally ill

Objectives: (1) To determine informal caregivers perceptions about place of care and place of death; and (2) to identify variables associated with a home death among terminally ill individuals who received in-home support services in a publicly funded home care system. Participants and design: A total of 216 informal caregivers participated in a bereavement interview. Data collection included care recipient and informal caregiver characteristics, the use of and satisfaction with community services, and preferences about place of death. Results: Most caregivers reported that they and the care recipient had a preferred place of death (77 and 68%, respectively) with over 63% reporting home as the preferred place of death. Caregivers had a greater preference for an institutional death (14%) than care recipients (4.7%). While 30% of care recipients did not die in their preferred location, most caregivers (92%) felt, in retrospect, that where the care recipient died was the appropriate place of death. Most caregivers reported being satisfied with the care that was provided. The odds of dying at home were greater when the care recipient stated a preference for place of death (OR: 2.92; 95% CI: 1.25, 6.85), and the family physician made home visits during the care recipients last month of life (Univariate odds ratios (OR): 4.42; 95% CI: 1.46, 13.36). Discussion: The ethic of self-control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system. © 2005 Edward Arnold (Publishers) Ltd.

Factors associated with home death for individuals who receive homesupportservices:A retrospective cohort study

Objectives: To determine the factors associated with a home death among older adults who received palliative care nursing home services in the home. Methods: The participants in this retrospective cohort study were 151 family caregivers of patients who had died approximately 9 months prior to the study telephone interview. The interview focused on the last year of life and covered two main areas, patient characteristics and informal caregiver characteristics. Results: Odds ratios [OR] and 95% confidence intervals [95% CI] were used to determine which of the 15 potential informal caregiver and seven patient predictor variables were associated with dying at home. Multivariate analysis revealed that the odds of dying at home were greater when the patient lived with a caregiver [OR = 7.85; 95% CI = (2.35, 26.27)], the patient stated a preference to die at home [OR= 6.51; 95% CI = (2.66,15.95)], and the family physician made home visits [OR = 4.79; 95% CI = (1.97,11.64)]. However the odds were lower for patients who had caregivers with fair to poor health status [OR = 0.22; 95% CI = (0.07, 0.65)] and for patients who used hospital palliative care beds [OR = 0.31; 95% CI = (0.12, 0.80)]. Discussion: The findings suggest that individuals who indicated a preference to die at home and resided with a healthy informal caregiver had better odds of dying at home. Home visits by a family physician were also associated with dying at home.

Linking Family Engagement with a Rights Perspective: Macro Factors Influencing Practice

While child welfare practitioners in many countries are struggling to develop methods of effective family engagement, they operate within different national and cultural contexts which influence, both positively and negatively, the ability to engage with families. Increasingly, international comparisons are necessary to further understanding of the development of social work practice. This is particularly necessary because most countries utilize international frameworks (such as the United National Convention on the Rights of the Child) to provide guidance in the development of policies, programs, and interventions. Each country (and locality) struggles to advance practice to be more effective and humane. Our paper offers a comparative analysis focused on family-oriented and rights-based frameworks of different countries. Based on a review of current national policies and a review of the literature regarding family based practices, we examine similarities and differences among four countries: the United Kingdom, Sweden, the United States, and South Korea. These countries were selected because they have some similarities (advanced industrialized democracies, professional social work, formal child protection systems) but have some differences in their social welfare systems (policies, specific practices, socio-cultural context). These differences can be utilized to advance understanding regarding the promise and potential for family engagement strategies. We then discuss the utility of this comparison for theory-building in the arena of child care practice and conclude by identifying the challenges and limitations of this work.

Paramountcy, family rights and contested adoption: does contact with birth relatives balance the scales?

This article combines practitioner insight and research evidence to chart how principles of partnership and paramountcy have led to birth family contact becoming the expected norm following contested adoption from care in Northern Ireland. The article highlights how practice has adapted to the delay in proposed reforms to adoption legislation resulting in the evolution of increasingly open adoption practices. Adoption represents an irrevocable transfer of parental responsibility from birth to adoptive parents and achieves permanence and legal security for children in care who cannot return to their birth family. Its enduring effect, however, makes public adoption a contentious field of child welfare practice, particularly when contested by birth parents. This article explores how post-adoption contact may be viewed as reconciling the uneasy interface between paramountcy principles and parental rights to respect for family life. The article highlights the complexity of adoptive kinship relationships following contested adoption from care, and how contact presents unique challenges that mitigate against meaningful and sustainable connections between the child and their birth relatives. In conclusion, a call is made for sensitive negotiation and support of contact arrangements, and the development of practice models that are informed by an understanding of the workings of adoptive kinship.

Task sharing within a managed clinical network to improve child health in Malawi

BACKGROUND: Eighty per cent of Malawi's 8 million children live in rural areas, and there is an extensive tiered health system infrastructure from village health clinics to district hospitals which refers patients to one of the four central hospitals. The clinics and district hospitals are staffed by nurses, non-physician clinicians and recently qualified doctors. There are 16 paediatric specialists working in two of the four central hospitals which serve the urban population as well as accepting referrals from district hospitals. In order to provide expert paediatric care as close to home as possible, we describe our plan to task share within a managed clinical network and our hypothesis that this will improve paediatric care and child health.

PRESENTATION OF THE HYPOTHESIS: Managed clinical networks have been found to improve equity of care in rural districts and to ensure that the correct care is provided as close to home as possible. A network for paediatric care in Malawi with mentoring of non-physician clinicians based in a district hospital by paediatricians based at the central hospitals will establish and sustain clinical referral pathways in both directions. Ultimately, the plan envisages four managed paediatric clinical networks, each radiating from one of Malawi's four central hospitals and covering the entire country. This model of task sharing within four hub-and-spoke networks may facilitate wider dissemination of scarce expertise and improve child healthcare in Malawi close to the child's home.

TESTING THE HYPOTHESIS: Funding has been secured to train sufficient personnel to staff all central and district hospitals in Malawi with teams of paediatric specialists in the central hospitals and specialist non-physician clinicians in each government district hospital. The hypothesis will be tested using a natural experiment model. Data routinely collected by the Ministry of Health will be corroborated at the district. This will include case fatality rates for common childhood illness, perinatal mortality and process indicators. Data from different districts will be compared at baseline and annually until 2020 as the specialists of both cadres take up posts.

IMPLICATIONS OF THE HYPOTHESIS: If a managed clinical network improves child healthcare in Malawi, it may be a potential model for the other countries in sub-Saharan Africa with similar cadres in their healthcare system and face similar challenges in terms of scarcity of specialists.

Identity issues for looked after children with no knowledge of their origins - Implications for research and practice

In the area of child care policy and practice, the benefits for children who are separated from their birth parents of maintaining some form of connection with their family of origin is now widely accepted. The arguments in support of this are found mainly in research concerning adoption and stem from four inter-related themes: children's rights to know of their heritage and background; parents' rights to information about the well-being of their children; the benefits of having knowledge about origins; and concerns about the impact of not knowing. The effects on the developing identities of those who, for various reasons, are unlikely ever to know the details of their birth parent(s) is an under-researched issue. Karen Winter and Olivia Cohen use a case study to illustrate some of the gaps concerning knowledge in this area. They argue that there is much to be learnt from the development of research projects which have as their focus the accounts of children and young people, from a wide range of care arrangements, regarding identity issues where they have no connections with or knowledge about their birth parent(s).

A Model for Understanding Worker Premises in Child Protection

Considers the use of premises in child protection and offers a model how they are constructed to avoid bias

The Growth, Learning and Development Study: Summary of Research, Findings and Recommendations.

The Growth, Learning and Development (GLAD) study aimed to examine how a broad range of factors influence child weight during the first year of life. Assessments were undertaken within a multidisciplinary team framework. The sample was drawn from the community and data collection was undertaken in the four Greater Belfast Trusts. Twohundred and thirty-four families took part, each receiving a total of five home visits during which physical growth, oral-motor skills and development were assessed. Psychosocial evaluation examined parent-child interaction, feeding and other parental and child characteristics using quantitative and observational techniques. This paper outlines the main findings and recommendations from the GLAD study.

Health status of children with cerebral palsy living in Europe: a multi-centre study

Aim The aim of this report is to describe the health status of 8–12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ).

Method A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health.

Results PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors.

Conclusion This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.

The L Pack: Addressing the Sexual Health Needs of Young Lesbians

Concerns about the sexual health of women who identify as other than heterosexual have been highlighted in numerous research reports, yet access to information, advice and services remains limited within Northern Ireland. In response to this, a group of young women have produced a sexual health resource (‘‘The L Pack’’) specifically for those who identify as lesbian or bisexual. This article discusses the issue of lesbian sexual health and the rationale for the production of The L Pack. Drawing upon discussions with the young women involved and the various partners, it outlines the participatory process of producing information for young women by young women, the meaning and value of this and the nature of learning for all involved. Illustrating feminist and related principles through practice examples, the article outlines how the project moved from a focus on individual learning to one where the young women involved gained the knowledge, skills and confidence to take their learning to their peers and others.