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.

The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and c. ulturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Walking the Tightrope: Using Power and Authority in Child Welfare Supervision

Recognizing the importance of understanding the way in which supervisors in child welfare perceive their administrative responsibilities and use of power and authority, an exploratory study was conducted. Supervisors in child welfare agencies in urban and rural settings participated in focus groups and discussed the impact of macro and micro factors on their performance. Policy changes, including using new approaches to child welfare, and organizational culture had a major affect on the way they offered supervision. At the micro level, their use of power was related to elements in their relationships with frontline workers and their own professional development. Implications for child welfare practice and for new and experienced supervisors are presented.

Dignity and religion

This chapter, included in a book examining the relationship between Islam and English Law, considers the role that the idea of 'human dignity' plays in discussions of the relationship between the European Convention on Human Rights and freedom of religion, and the implications this has for future consideration of the place of Shari'a.

Finding Your Feet in the Field: Critical Reflections of Early Career Researchers on Field Research in Transitional Societies

Fieldwork that takes place in conflict or transitional regions is becoming increasingly popular amongst early-career and more seasoned researchers, but is an area that retains an air of mystery and remains an exotic form of knowledge gathering. There exists a paucity of personal reflection on the challenges associated with conducting fieldwork in conflicted or transitional regions and a limited amount of insight into the practical steps taken in advance of and when immersed in the field. Such reticence to share honest fieldwork experiences, particularly the more challenging research that takes place in conflict or transitional settings aids in creating a culture of silence. This paper attempts to counteract this silence by drawing on the challenges experienced by two early career researchers conducting fieldwork in Uganda and Palestine, focusing on the practical steps taken in advance of entering the field, and the challenges faced whilst engaged in fieldwork. Specific challenges are highlighted throughout, including: physical access to areas in conflict; engaging with reluctant research participants; the emotional impact of fieldwork on the researcher; maintaining confidentiality; researching with vulnerable victims; and ensuring appropriate knowledge exchange between researchers and participants. The paper concludes by emphasising the requirement for greater reflection on the inherently personal challenges associated with conducting fieldwork in conflicted or transitional settings and highlights the view that fieldwork is a privileged position that carries great responsibilities which must be upheld to ensure the sustainability of future research. This paper hopes to contribute to the wider debate on conducting fieldwork and the challenges associated with working in conflicted or transitional regions.

Delaying Truth Recovery for Missing Persons

The fate of missing persons is a central issue in post-conflict societies facing truth recovery and human rights dilemmas. Despite widespread public sympathy towards relatives, societies emerging from conflict often defer the recovery of missing for decades. More paradoxically, in post-1974 Cyprus, the official authorities delayed unilateral exhumations of victims buried within cemeteries in their own jurisdiction. Analysis of official post-1974 discourse reveals a Greek-Cypriot consensus to emphasise the issue as one of Turkish aggression, thus downplaying in-group responsibilities and the legacy of intra-communal violence. We compare the experience of Cyprus with other post-conflict societies such as Spain, Northern Ireland, and Mozambique and explore the linkages between institutions and beliefs about transitional justice. We argue that elite consensus initiates and facilitates the transition to democracy but often leads to the institutionalization of groups opposing truth recovery even for in-group members.

Awareness and knowledge of autism and autism interventions: A general population survey.

Recent figures show that Autism Spectrum Disorder (ASD) affects at least 1 in 88 of the population, yet for years, international public awareness of ASD was limited. Over the past 5-10 years intense efforts have been made to raise autism awareness in the general population in countries such as UK and US. In this paper we report data from a large-scale general population survey (n=1204) in which we assessed autism awareness, knowledge about autism, and perceptions about autism interventions in Northern Ireland. We found high levels of autism awareness, in fact over 80% of the sample were aware of ASD and over 60% of these respondents knew someone with ASD in their own family, circle of friends or work colleagues. Generally, knowledge of strengths and challenges faced by individuals with ASD was relatively accurate. However, perceptions of interventions and service provider responsibilities were vague and uncertain. Results show that local and international autism awareness campaigns have largely been successful and that the focus should shift towards disseminating accurate information regarding intervention and service provider responsibilities.

Assessing parenting capacity in child protection: towards a knowledge-based model

The assessment of parenting capacity continues to engender public concern in cases of suspected harm to children. This paper outlines a model for approaching this task based on the application of three key domains of knowledge in social work relating to facts, theory and practice wisdom. The McMaster Model of Family Assessment is identified out of this process and reworked to give it a sharper focus on parenting roles and responsibilities. Seven formative dimensions of parenting are then elicited and combined with an analytical process of identifying strengths, concerns, prospects for growth and impact on child outcomes. The resulting assessment framework, it is argued, adds rigour to professional judgements about parenting capacity and enhances formulations on risk in child protection.

Planning, Devolution and the Territorialisation of Wind Energy in the UK

The decarbonisation of energy systems draw a new set of stakeholders into debates over energy generation, engage a complex set of social, political, economic and environmental processes and impact at a wide range of geographical scales, including local landscape changes, national energy markets and regional infrastructure investment. This paper focusses on a particular geographic scale, that of the regions/nations of the UK (Scotland, Wales, Northern Ireland), who have been operating under devolved arrangements since the late 1990s, coinciding with the mass deployment of wind energy. The devolved administrations of the UK possess an asymmetrical set of competencies over energy policy, yet also host the majority of the UK wind resource. This context provides a useful way to consider the different ways in which geographies of "territory" are reflected in energy governance, such through techno-rational assessments of demand or infrastructure investment, but also through new spatially-defined institutions that seek to develop their own energy future, using limited regulatory competencies. By focussing on the way the devolved administrations have used their responsibilities for planning over the last decade this paper will assess the way in which the spatial politics of wind energy is giving rise to renewed forms of territorialisation of natural resources. In so doing, we aim to contribute to clarifying the questions raised by Hodson and Marvin (2013) on whether low carbon futures will reinforce or challenge dominant ways of organising relationships between the nation-state, regions, energy systems and the environment.

Beyond the National Resource Privilege: towards an International Court of the Environment

The national resource privilege, which holds that states are allowed to control all the natural resources found in their territory, is a cornerstone of international politics. Supporters of the national resource privilege claim that without the privilege states would fail to be sovereign and self-determining entities which provide for the needs of their citizens. However, as this paper shows the case is not as simple as that. In fact, control over resources must be carefully unpacked. Doing so shows that states do not require full control over all resources found in their territory in order to be sovereign. Moreover, sovereignty and self-determination come with a set of responsibilities and duties attached. Based on these observations the paper will sketch the contours of an alternative resource governance scheme built around the idea of an International Court of the Environment.

In touch to teach: Do nurse educators need to maintain or possess recent clinical practice to facilitate student learning?

In recent years UK university-based nurse educators have seen a reduction in their responsibilities for nursing students’ practice-based assessments. Many university-based nurse educators feel that this lack of input into students’ clinical assessments leaves them open to criticism as they are perceived to be less “in-touch” with clinical practice and that their knowledge to teach nursing students is diminished as a result. This paper examines and debates some interpretations of the term “recent clinical practice” and challenges the misconception among many in the profession, as well as government and professional bodies, that university-based nurse educators require recent clinical practice to effectively teach students and enhance the student learning experience in the academic university setting.

Foreign Policy Essay: Hamas's Islamist Foes

Editor’s Note: The United States rightly regards the Muslim Brotherhood-affiliated Palestinian organization Hamas as a terrorist group, but Hamas is also the de facto government of the Gaza Strip. There it juggles the responsibilities of governing Gaza and the associated need to mollify Israel with its self-image as an Islamic “resistance” movement. Making this difficult act even harder, Hamas faces a terrorism problem of its own. Gaza is home to a range of groups that see Hamas as too accommodating toward Israel and too lenient when it comes to imposing Islamic law at home. Beverley Milton-Edwards, a professor at Queen’s University Belfast and renowned expert on Hamas, assesses these Islamist rivals and the risks for Hamas of being too confrontational or too passive in dealing with them.

Assessment matters-mentors need support in their role

BACKGROUND:
In the UK the Nursing and Midwifery Council (NMC) standards to support learning and assessment in practice state that mentors are responsible and accountable for the assessment of pre-registration nursing students in practice. This study was undertaken to explore mentors' experience of assessing nursing students in practice post implementation of the NMC standards.
METHOD:
Five focus groups were conducted with mentors (N=35) who had assessed adult pre-registration nursing students in the previous 12 months. The focus groups were recorded, transcribed and analysed to generate categories.
RESULTS:
Five categories were identified from the data: Changing roles and responsibilities; Exploring the past to understand the present; Just knowing; The odds; Time to mentor. The findings highlighted that mentors were aware of their role and responsibility for the assessment of students in practice. However, many felt this was a new responsibility and role in which they lacked experience. Some existing mentors felt that they may not have had the necessary preparation to effectively assess students in practice and identified their need for support.
CONCLUSION:
Given that mentors are expected to be competent assessors of students in practice and protect the public through gate-keeping professional registration, this study suggests that serious consideration should be given to how mentors are prepared and the ongoing support and education they receive in assessment.

Legalizing physician-assisted suicide and/or euthanasia: Pragmatic implications

Objective: Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues-and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.

Method: We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.

Results: We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.

Significance of Results: Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.