An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

Perceptions of stressful life events in Northern Irish school children: a longitudinal study.

Adults’ perceptions of stressful life events have been acknowledged as important moderators of the stress adjustment relationship. Until recently, however, there has been a lack of research on children's perceptions of negative life events. This study assesses children's own perceptions of the stressfulness of negative familial, academic and social events as well as events related to the political conflict in Northern Ireland. Method: Developmental changes in children's perceptions of events are traced over time. One hundred and sixty 8-year-old children completed a self-report measure of the perceived stressfulness of a range of negative life events. The sample was drawn from schools in the Greater Belfast area to include children of both genders, primary religious affiliations in Northern Ireland (i.e., Protestant and Roman Catholic) and of varying socio-economic status. Three years later, 113 of these children, then aged 11, were traced through the school system and completed the same measure. Results: Children's perceptions of stressful events are related to a host of social factors. Girls viewed many negative events as more stressful than their male counterparts. Roman Catholic and Protestant children differed in their perceptions of conflict-related events. Perceptions of various types of negative experiences were differentially related to socio-economic status and age. Conclusion: Personal, social and situational factors differentially determine children's perceptions of negative life experiences.

Echoes of the future: Adults with disabilities living at home with their parents

Almost 90% of all adult sons and daughters with disabilities live at home with their parents. Consequently, they have life experiences that are atypical for most of their adult peers and their aging caregivers are under stress due to failing health, financial pressures, bereavement, and worry about the future.

Adults with intellectual disabilities and aging parents took part in focus groups and interviews. results show a loving and caring home environment but evidence a lack of effective life skills development and futures planning. the paper draws attention to the inevitable crisis that occurs when aging caregivers are no longer able to care. The urgent need for skill development and timely futures planning is outlined.

Who accesses complementary therapies and why?: An evaluation of a cancer care service

Introduction

Advances in cancer diagnosis and treatment have resulted in longer survival, meaning patients are living with a chronic-type condition. Therefore the needs of such patients have changed placing greater emphasis on survivorship, such as impact on quality of life and sleep patterns. Evidence suggests complementary therapies positively impact not only on the cancer patient's quality of life but also on family members and friends.

Methodology

This service evaluation examines self-reported benefits following a course of complementary therapy offered by a local cancer charity.

Results

Analysis of self-reported sleep scores and perceived quality of life experiences confirmed a number of trends relating to the demographics of people accessing the complementary therapy service.

Conclusion

Results suggest the complementary therapies provided by Action Cancer significantly improved clients' quality of life. Based on these findings the authors make a number of recommendations in relation to the use of complementary therapies by cancer patients.

Reviewing the Literature on the Breakdown of Foster Care Placements for Young People: Complexity and the Social Work Task

Young people in long-term foster care are at risk of experiencing poor social, emotional, behavioural and educational outcomes. Moreover, these placements have a significantly greater chance of breaking down compared to those involving children. This article critically evaluates the factors associated with this particular outcome. It was carried out through a literature review conducted by a social work practitioner in one Health and Social Care Trust in Northern Ireland. The findings evidenced that, apart from overriding safety concerns, placement breakdown was not a one-off event but rather a complex process involving the interplay between a range of dynamic risk and protective factors over time, operating in the wider context of the young person’s history and life experiences. The significance of these findings for social work practitioners is finally considered by identifying key theories to inform understanding and intervention.

Living long and ageing well: is epigenomics the missing link between nature and nurture?

Human longevity is a complex trait and increasingly we understand that both genes and lifestyle interact in the longevity phenotype. Non-genetic factors, including diet, physical activity, health habits, and psychosocial factors contribute approximately 50 % of the variability in human lifespan with another 25 % explained by genetic differences. Family clusters of nonagenarian and centenarian siblings, who show both exceptional age-span and health-span, are likely to have inherited facilitatory gene groups, but also have nine decades of life experiences and behaviours which have interacted with their genetic profiles. Identification of their shared genes is just one small step in the link from genes to their physical and psychological profiles. Behavioural genomics is beginning to demonstrate links to biological mechanisms through regulation of gene expression, which directs the proteome and influences the personal phenotype. Epigenetics has been considered the missing link between nature and nurture. Although there is much that remains to be discovered, this article will discuss some of genetic and environmental factors which appear important in good quality longevity and link known epigenetic mechanisms to themes identified by nonagenarians themselves related to their longevity. Here we suggest that exceptional 90-year old siblings have adopted a range of behaviours and life-styles which have contributed to their ageing-well-phenotype and which link with important public health messages.

Human-directed gazing behaviour in puppies and adult dogs, Canis lupus familiaris

Recent evidence indicates that dogs' sociocognitive abilities and behaviour in a test situation are shaped by both genetic factors and life experiences. We used the 'unsolvable task' paradigm to investigate the effect of breed and age/experience on the use of human-directed gazing behaviour. Following a genetic classification based on recent genome analyses, dogs were allocated to three breed groups, namely Primitive, Hunting/Herding and Molossoid. Furthermore, we tested dogs at 2 months, 4.5. months and as adults. The test consisted of three solvable trials in which dogs could obtain food by manipulating a plastic container followed by an unsolvable trial in which obtaining the food became impossible. The dogs' behaviour towards the apparatus and the people present was analysed. At 2 months no breed group differences emerged and although human-directed gazing behaviour was observed in approximately half of the pups, it occurred for brief periods, suggesting that the aptitude to use human-directed gazing as a request for obtaining help probably develops at a later date when dogs have had more experience with human communication. Breed group differences, however, did emerge strongly in adult dogs and, although less pronounced, also in 4.5-month-old subjects, with dogs in the Hunting/Herding group showing significantly more human-directed gazing behaviour than dogs in the other two breed groups. These results suggest that, although the domestication process may have shaped the dog's human-directed communicative abilities, the later selection for specific types of work might also have had a significant impact on their emergence. © 2011 The Association for the Study of Animal Behaviour.

Agility and search and rescue training differently affects pet dogs' behaviour in socio-cognitive tasks

Both genetic factors and life experiences appear to be important in shaping dogs' responses in a test situation. One potentially highly relevant life experience may be the dog's training history, however few studies have investigated this aspect so far. This paper briefly reviews studies focusing on the effects of training on dogs' performance in cognitive tasks, and presents new, preliminary evidence on trained and untrained pet dogs' performance in an 'unsolvable task'. Thirty-nine adult dogs: 13 trained for search and rescue activities (S&R group), 13 for agility competition (Agility group) and 13 untrained pets (Pet group) were tested. Three 'solvable' trials in which dogs could obtain the food by manipulating a plastic container were followed by an 'unsolvable' trial in which obtaining the food became impossible. The dogs' behaviours towards the apparatus and the people present (owner and researcher) were analysed. Both in the first 'solvable' and in the 'unsolvable' trial the groups were comparable on actions towards the apparatus, however differences emerged in their human-directed gazing behaviour. In fact, results in the 'solvable' trial, showed fewer S&R dogs looking back at a person compared to agility dogs, and the latter alternating their gaze between person and apparatus more frequently than pet dogs. In the unsolvable trial no difference between groups emerged in the latency to look at the person however agility dogs looked longer at the owner than both pet and S&R dogs; whereas S&R dogs exhibited significantly more barking (always occurring concurrently to looking at the person or the apparatus) than both other groups. Furthermore, S&R dogs alternated their gaze between person and apparatus more than untrained pet dogs, with agility dogs falling in between these two groups. Thus overall, it seems that the dogs' human-directed communicative behaviours are significantly influenced by their individual training experiences. © 2009 Elsevier B.V. All rights reserved.

Connected Life Courses:Influences on and Experiences of 'Midlife' In-Migration to Rural Areas

This paper aims to contribute to the theorisation of midlife migration into rural areas. Although the factors influencing migration are known to be variable at different stages of a person's life, much less well understood is how migration decisions at different stages of the life course are connected and how post-migration experiences may be influenced by an earlier life course stage. We argue that midlife migration decisions are the product of the migrant's lifetime experiences and influences up until that stage in their life alongside their expectations and aspirations for future life course stages. Using a case study of the Glens of Antrim (Northern Ireland), this paper specifically demonstrates the role of childhood memories to explain midlife migration to a rural area. In doing so, it argues that some findings more commonly associated with second-generation transnational migration are also equally relevant to migration within the UK. Roots migration and place attachment alongside the midlife migrant's post-migration sense of belonging and permanency are found to be influenced by the migrant's earlier memories, behaviours, and experiences.

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

General Nurses’ Experiences of End-Of-Life Care in the Acute Hospital Setting

Approximately 90% of the UK population spend some time in hospital in their final year of life, and more than half of the population die in hospital. This review aims to explore the experiences of general nurses when providing end-of-life care to patients in the acute hospital setting. Nine studies were identified through a literature search, and each was then analysed and evaluated until themes emerged. Six themes were drawn from the literature: lack of education and knowledge, lack of time with patients, barriers arising in the culture of the health-care setting, communication barriers, symptom management, and nurses' personal issues. The themes cause concern about the quality of end-of-life care being provided in the acute care setting. The literature appears to be consistent in the view that terminally ill patients are best cared for in specialised care settings, such as palliative care units and hospices. However, increasing demands on health services will result in greater numbers of dying patients being admitted to the acute hospital setting. It is therefore paramount that general nurses' educational needs are met to ensure they develop clinical competence to provide high-quality holistic end-of-life care.

Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study

AIMS AND OBJECTIVES: To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

BACKGROUND: Pain management in end-stage dementia is a fundamental aspect of end of life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care.

DESIGN: A qualitative study using semi-structured interviews and thematic analysis to examine data.

METHODS: 24 registered nurses caring for people dying with advanced dementia were recruited from ten nursing homes, three hospices, and two acute hospitals across a region of the United Kingdom. Interviews were conducted between June 2014 and September 2015.

RESULTS: Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified.

CONCLUSIONS: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

RELEVANCE TO CLINICAL PRACTICE: Nurses considered pain management fundamental to end of life care provision; however, nurses working in acute care and nursing home settings may be under-supported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology. This article is protected by copyright. All rights reserved.

No second chance: junior neonatal nurses' experiences of caring for babies at the end-of-life and their families

Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life care in NNU. Neonatal nurses (n = 12) with less than 3 years experience participated in a focus group. Nominal Group Technique (NGT) was used to build consensus around the challenges faced, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision-making whilst secondary analysis involved thematic analysis. All issues, whether environmental, professional or social appeared driven by an awareness on the part of nurses, that there was no ‘second chance’ which created a huge pressure to ‘get if right’ for the infants and families. Regarding future care 2 areas of improvement identified were ‘Education and Training’ and Support. This paper unpacks these findings making recommendations for practice.

No second chance: the experiences of junior neonatal nurses in providing end-of-life care for babies and families in the NNU

Background

An infant’s death is acutely stressful for parents and professionals. Little is known about junior nurses’ experiences providing end-of-life care in Neonatal Units (NNU).

Objectives

To better understand junior nurses’ experiences providing end-of-life care in NNU, the study explored the challenges and opportunities inherent in their practice relating to providing such care to babies and their families.

Methods

Neonatal nurses (n=12) with less than 3 years’ experience who were undergoing a neonatal education programme participated. Two focus groups were convened each with 6 nurses. The Ethics Committee at the relevant University approved the study. Nominal Group Technique (NGT) was used in the focus groups to build consensus around the challenges faced by junior nurses, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision making whilst secondary analysis involved thematic analysis.

Results

The study identified the pressures these nurses felt in having only one chance to ‘get it right’ for the infants and their families. They perceived the need for further ‘education and training’ highlighting that improved education provision would include both additional courses and internal training sessions. Greater ‘support’ from mentors themselves more experienced in this aspect of care within the NNU was identified as important in addressing issues around confidence building and skill development.

Conclusions

The results highlight junior nurses’ need for specific education and mentorship around end-of-life care for babies. This presentation will outline the implications for practice, education and further research.