Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial

BACKGROUND: Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence-based psychological support initiatives are lacking.
AIM: The objective of this study was to prepare caregivers for the role of supporting a patient with advanced cancer receiving home-based palliative care by offering a one-to-one psycho-educational intervention. We hypothesised that primary family caregivers who participated in the intervention would report decreased psychological distress (primary outcome), fewer unmet needs and increased levels of perceived preparedness, competence and positive emotions.
METHODS: A three-arm randomised controlled trial was conducted comparing two versions of the intervention (one face-to-face visit versus two visits) plus standard care to a control group (standard care) across four sites in Australia.
RESULTS: A total of 298 participants were recruited; 148 were in the Control condition, 57 in Intervention 1 (one visit) and 93 in Intervention 2 (two visits). Relative to participants in the control group; the psychological well-being of participants in the intervention condition was improved by a small amount but non-significantly. No significant reduction in unmet needs or improvements in positive aspects of caregiving amongst the intervention group were identified. However, the intervention demonstrated significant improvements in participants' levels of preparedness and competence for Intervention 2.
CONCLUSION/IMPLICATIONS: This research adds to accumulating body of evidence demonstrating that relatively short psycho-educational interventions can enable family caregivers to feel more prepared and competent in the role of supporting a dying relative. Further investigation is required to determine the longer term outcomes of such interventions. 

Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.

Cross‐national mentoring NGOs in transition societies: Field research and developments in Bulgaria

Non‐governmental organizations (NGOs) in societies undergoing socio‐economic transition are widely regarded as central to building a civil society that encourages democracy. At the moment, the Bulgarian civil society depends greatly on foreign funding whilst NGOs are unable to empower their beneficiaries in decision‐making. Given this reality, are cross‐national NGO partnerships able to strengthen organisations? What kinds of support are on offer, what kinds of (inter) dependency relations occur and to what extent do NGOs model their management practices on their mentor and with what results?
This paper sets out to situate these questions in the context of a proposed theoretical construct, organizational mentoring, which occurs where national or local organisations have access to and support of well‐established NGOs abroad. The model is constructed on the findings of a qualitative case study conducted in Bulgaria on the development of a Bulgarian NGO and its relationship with a UK NGO. This is preceded by a discussion on selected literature reflecting the meaning of transition, change in societal values and organizational practices in Eastern Europe, and the development of voluntary sector organizations in transforming countries. The theoretical model proposed here is relevant in providing a systematic discussion on organizational change towards a more enlightened engagement between civil society organizations in cross‐national partnerships. Such discussion has implications for the development of hybrid forms of coexistence between Eastern and Western European partners reflected in their interdependent organizational practices.

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.

Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives' perspectives

Objectives: This study aims to determine pain frequency amongst care home residents with dementia, to investigate variables associated with pain, to explore analgesic use among residents and to seek residents' relatives' views on provision of care and management of pain by the care home. Methods: Structured face-to-face interviews were conducted with residents, nursing staff and relatives from nine dementia care homes in Northern Ireland, between May 2010 and March 2012. Demographic information was collected from participants, neuropsychiatric tests were used to assess residents' cognitive functioning, medication use was determined from care home records and residents' pain was assessed using a verbal descriptor scale. Relatives' views were sought on care provision and management of pain. Results: Forty-two residents, 16 nurses/care assistants and 35 relatives participated; the participation rate of residents was low (27.6%). Most residents were suffering moderate-severe dementia, and some residents (26.2%) were unable to provide a self-report of pain. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview, compared with residents (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). Most residents (88.1%) were prescribed with analgesia; non-opioid analgesics were most commonly prescribed. High proportions of residents were prescribed with psychoactive medications. Antipsychotic drug use was associated with presence of pain (p = 0.046). Conclusions: This study has reinforced the challenge of assessing and managing pain in this resident population and highlighted issues to be addressed by long-term care providers and clinicians. Participation of people with dementia, and their families, in healthcare research needs to be improved.

At Home in Care: Children living with birth parents on a Care Order

This study explored the processes, background information, and perceived reasons why children and young people returned home while remaining in care, in the five HSC Trusts in Northern Ireland. The research also focused on understanding the functions the Care Order had for social services, the birth parents, and young people involved.
It was found that on 31st March 2009, there were 193 children/young people living with their birth parents on a Care Order in Northern Ireland. This is eight per cent of the total population of Looked After children, and is lower than had been anticipated from governmental statistics. In total, the case files of 47 of these young people (24% of them) were reviewed, and interviews were conducted with ten of them and their birth parent/s.
The analysis revealed that the majority of them had in common a parental background history of alcohol abuse and domestic violence, and most return breakdowns in the study were related to continuing parental alcohol and/or drugs misuse. While some children had a planned return home after parents had engaged in supports and completed assessments, many young people had returns that were not planned, as they initiated the move themselves, or previous foster placements had broken down and there were no alternative placements identified for them. Many of these young people essentially ‘voted with their feet’, and social services were required to ensure that they remained safe in often less than optimal circumstances.
After returning home, for many, Care Orders remained for initially unintended lengthy periods because of the risks posed by parents’ intermittent alcohol abuse and their lifestyle, contact issues, and parents’ desire to ensure that their children were able to access the supports that they needed. Thus, Care Orders at home tended to serve two main functions: to either monitor and/or support the placement.

Tangible applications for regular objects:An end-user model for pervasive computing at home

This paper describes an end-user model for a domestic pervasive computing platform formed by regular home objects. The platform does not rely on pre-planned infrastructure; instead, it exploits objects that are already available in the home and exposes their joint sensing, actuating and computing capabilities to home automation applications. We advocate an incremental process of the platform formation and introduce tangible, object-like artifacts for representing important platform functions. One of those artifacts, the application pill, is a tiny object with a minimal user interface, used to carry the application, as well as to start and stop its execution and provide hints about its operational status. We also emphasize streamlining the user's interaction with the platform. The user engages any UI-capable object of his choice to configure applications, while applications issue notifications and alerts exploiting whichever available objects can be used for that purpose. Finally, the paper briefly describes an actual implementation of the presented end-user model. © (2010) by International Academy, Research, and Industry Association (IARIA).

Urban and rural differences in risk of admission to a care home: a census-based follow-up study

Research on admissions to care homes for older people has paid more attention to individual and social characteristics than to geographical factors. This paper considers rural-urban differences in household composition and admission rates. Cohort: 51,619 people aged 65 years or older at the time of the 2001 Census and not living in a care home, drawn from a data linkage study based on c.28% of the Northern Ireland population.Living alone was less common in rural areas; 25% of older people in rural areas lived with children compared to 18% in urban areas. Care home admission was more common in urban (4.7%) and intermediate (4.3%) areas than in rural areas (3.2%). Even after adjusting for age, sex, health and living arrangements, the rate of care home admission in rural areas was still only 75% of that in urban areas.People in rural areas experience better family support by living as part of two or three generation households. Even after accounting for this difference, older rural dwellers are less likely to enter care homes; suggesting that neighbours and relatives in rural areas provide more informal care; or that there may be differential deployment of formal home care services.

In and out of home care decisions: The influence of confirmation bias in developing decision supportive reasoning

The aims of this study were to identify the themes Social Workers regard as important in supporting decisions to remove children from, or return them to, the care of their parents. To further elicit underlying hypotheses that are discernible in interpretation of evidence. A case study, comprising a two-part vignette with a questionnaire, recorded demographic information, child welfare attitudes and risk assessments, using scales derived from standardised instruments, was completed by 202 Social Workers in Northern Ireland. There were two manipulated variables, mother’s attitude to removal and child’s attitude to reunification2 years later. In this paper we use data derived from respondents’ qualitative comments explaining their reasoning for in and out of home care decisions. Some 60.9% of respondent’s chose the parental care option at part one, with 94% choosing to have the child remain in foster care at part two. The manipulated variables were found to have no significant statistical effect. However, three underlying hypotheses were found to underpin decisions; (a)child rescue, (b) kinship defence and (c) a hedged position on calculation of risk subject to further assessment. Reasoning strategies utilised by social workers to support their decision making suggest that they tend to selectively interpret information either positively or negatively to support pre-existing underlying hypotheses. This finding is in keeping with the literature on ‘confirmation bias.’ The research further draws attention to the need to incorporate open questions in quantitative studies, to help guard against surface reading of data, which often does not ‘speak for itself.’