Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease

This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD).

Method: Semi-structured interviews were undertaken with nine carers whohad lost a loved one in the preceding 6 to 24 months.These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis.

Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support.

Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced

Inclusion & the Special Educational Needs (SEN) Resource Base In Mainstream Schools: Physical Factors to Maximise Effectiveness.

As a society, we have a responsibility to provide an inclusive built environment. As part of the need to promote inclusion, there is now a growing trend to place pupils with Special Educational Needs (SEN) into a mainstream school setting. This is often facilitated by providing a specialist SEN resource base located within the mainstream school. If so, the following paper outlines why the whole school should be considered when locating and implementing a SEN resource base. It also highlights the wider opportunities for enhancing inclusion for SEN pupils if giving holistic thought to the wider context of the resource base. It then indicates a four-stage approach, using the ASD pupil as an illustrative example, to help evaluate the optimum SEN resource base location within a mainstream school setting. Finally it highlights in conclusion, some benefits and challenges for an enriched school environment for all pupils, if considering genuine inclusion.

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.

Home-based support for palliative care families:challenges and recommendations

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver's needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

A leadership framework to support the use of e-learning resources

Aim
This inquiry aims to apply the NHS leadership framework to nurse education for the implementation of e-learning.
Background
Recognition needs to be given to the emerging postgraduate nursing students new status of consumer and the challenge now for nurse education is how to remain relevant and competitive in this consumer led market. The move towards an e-learning paradigm has been suggested as a competitive and contemporary way forward for the student consumer. The successful introduction of e-learning in nurse education will require leadership and a strong organisational management system.
Discussion
Each element of the NHS leadership framework is described and interpreted for application in a higher education setting for the implementation of e-learning.
Conclusions
Change in the delivery of post graduate nurse education is necessary to ensure it remains current and reflective of consumer need in a competitive marketplace. By applying a leadership framework that acknowledges the skills and abilities of staff and encourages the formation of collaborative partnerships from within the wider university community, educators can begin to develop skills and confidence in teaching using e-learning resources.

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and wellbeing (SF-36) and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers’ needs were largely unmet. In particular, there appeared to be a need in relation to statutory health care provision, information, psychological support and involvement in decision making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared to cancer survivors. Compared to UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver’s health long after treatment has ended. Providing appropriate and cancer specific information may alleviate difficulties and improve health and wellbeing. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.

Rethinking Local Government Support for Youth Arts:The Case of NOISE South Dublin

Within Ireland, interest in strategically supporting young people’s participation in the arts has increased. Additionally, awareness of the Internet’s potential for promot- ing engagement with the arts has grown. Addressing national directives and local needs assessments, South Dublin County Council’s Arts Office initiated NOISE South Dublin (http://www.noisesouthdublin.com), an interactive Web site based on Australia Council’s NOISE project (http://www.noise.net), to promote the creative development of young people in the county. This article presents the practical chal- lenges and potential of youth arts Web-based programs for harnessing the creative engagement of youth. It concludes that the Internet is only useful if it expands online engagement offline.

Assessing the needs of informal caregivers to cancer survivors: a review of the instruments

Objective: Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.

Method: A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised.

Results: Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test–retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness.

Conclusion: All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test–retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative care.

Cancer survivors with self-reported late effects: their health status, care needs and service utilisation

OBJECTIVE: Cancer survivors (CSs) are at risk of developing late effects (LEs) associated with the disease and its treatment. This paper compares the health status, care needs and use of health services by CSs with LEs and CSs without LEs.

METHODS: Cancer survivors (n = 613) were identified via the Northern Ireland Cancer Registry and invited to participate in a postal survey that was administered by their general practitioner. The survey assessed self-reported LEs, health status, health service use and unmet care needs. A total of 289 (47%) CSs responded to the survey, and 93% of respondents completed a LEs scale.

RESULTS: Forty-one per cent (111/269) of CSs reported LEs. Survivors without LEs and survivors with LEs were comparable in terms of age and gender. The LEs group reported a significantly greater number of co-morbidities, lower physical health and mental health scores, greater overall health service use and more unmet needs. Unadjusted logistic regression analysis found that cancer site, time since diagnosis and treatment were significantly associated with reporting of LEs. CSs who received combination therapies compared with CSs who received single treatments were over two and a half times more likely to report LEs (OR = 2.63, 95% CI = 1.32-5.25) after controlling for all other variables.

CONCLUSIONS: The CS population with LEs comprises a particularly vulnerable group of survivors who have multiple health care problems and needs and who require tailored care plans that take account of LEs and their impact on health-related quality of life.

Exploring the needs of socially excluded young men

In recent years, social exclusion has gained the attention of governments around the world. This paper reports on a qualitative study involving 27 young men aged 14-19 years experiencing particular forms of exclusion in the context of Northern Irish society. The study used a focus group methodology to elicit their views with the aim of exploring both emotional and psychological needs and the structural factors that may contribute to their experiences of social exclusion. The findings reveal a range of unmet social and psychological needs, the impact of sectarianism and segregation, and a paucity of support systems in place. The paper concludes by making recommendations about how policy-makers and practitioners could find more imaginative ways of engaging such vulnerable young men to reduce social exclusion. 

A study exploring disordered eating patterns in first-year university students: student and service needs

This qualitative study explored disordered eating in a small group of first-year undergraduate students and addresses a gap in the literature by exploring their lived experience.

Aims: To better understand student’s needs in those experiencing or at risk of developing disordered eating during their first year at university and to illustrate what support mechanisms and services are required to better support students experiencing or at risk during their first year at university.

Conclusion: The University could further develop its outreach to new students with a more consistently supportive programme providing better facilities and training for stress appraisal and coping and more support via student buddying. The University could also extend its programme on positive mental health in an attempt to better inform on disordered eating and to reduce a sense of stigma within the student population. Personal tutors and student health care facilities need to be consistently trained in the understanding and person centred approach to students experiencing disordered eating, particularly the sub-clinical group. In addition the University could consider some small changes and adaptations to the refectory eating areas to better facilitate students who may be at risk from disordered eating. Finally the University could perhaps better use the potentially liminal period within the first few months of student's arrival at university (a new beginning) to help embed a program to develop a stronger sense of coherence and well-being.

A decision support system for managing irrigation in agriculture

In this paper, an automatic Smart Irrigation Decision Support System, SIDSS, is proposed to manage irrigation in agriculture. Our system estimates the weekly irrigations needs of a plantation, on the basis of both soil measurements and climatic variables gathered by several autonomous nodes deployed in field. This enables a closed loop control scheme to adapt the decision support system to local perturbations and estimation errors. Two machine learning techniques, PLSR and ANFIS, are proposed as reasoning engine of our SIDSS. Our approach is validated on three commercial plantations of citrus trees located in the South-East of Spain. Performance is tested against decisions taken by a human expert.

Hearing the voices of kinship foster carers in Northern Ireland: An inquiry into characteristics, needs and experiences

This study describes an investigation into the characteristics, needs and experiences of kinship foster carers in Northern Ireland. By adopting a mixed-methods approach with 54 carers, a number of salient themes was captured. The respondents were predominantly grandparents who experienced a significant incidence of health-related issues. The cohort also endured high levels of stress, particularly at the beginning stage of the foster placement. Consequently, their need for practical, emotional and respite support was most evident. In terms of the children for whom they cared, many required help at school, and some presented with challenging emotions and behaviours. Overall, these findings emphasised the importance of relationship-based social work and demonstration of accurate empathy to the carer.

Implementing a Videoconferencing Studio in Cape Verde to Support a Blended Learning Education System

In 2004, the Calouste Gulbenkian Foundation invited the University of Aveiro to develop an education and training program in advanced topics of ICT for Cape Verde. The focus should be on technologies to support the development of distance education. Two years later, when the program was started, the University of Aveiro had a high-performance videoconferencing Studio installed by the Foundation for National Scientific Computing. However, the investment to duplicate this high quality structure and operating costs were not compatible neither with the project’s budget nor with the technological options available in Cape Verde. This paper demonstrates the decision-making process by an economically viable option to meet the needs and local peculiarities.