Experiences of carers supporting dying renal patients managed without dialysis

Aim: To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis.
Background: Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers.
Design: Exploratory, qualitative design.
Methods: The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006–2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis.
Findings: ‘Caring from diagnosis to death’ was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight – making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. ‘Caring from diagnosis to death’ coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness.
Conclusion: There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required.

A need to belong?: The prevalence of experiences of belonging and exclusion in school among minority ethnic children living in the 'White hinterlands'

Based on a survey of 711 children in Northern Ireland, this paper explores a range of aspects of experiences of belonging and exclusion in relation to school among three main minority ethnic groups: Irish Traveller, Chinese/Asian and European Migrant children. The study examines variations between each group and how they compare to the White settled population. The findings indicate that all three groups experience lower levels of belonging and higher levels of exclusion compared to their White, settled Northern Irish peers. The experiences of Irish Traveller children were the most negative. The article adds to the dearth of data on minority ethnic children living in mainly white regions in the UK and Ireland. It argues for the need to move beyond achievement gaps in assessing minority ethnic children’s differential experiences in education and highlights the potential of belongingness as a concept for the further study of differential patterns of need and processes of inclusion.

'Just be Brave' - The Experiences of Young Witnesses in Criminal Proceedings in Northern Ireland

The last three decades have witnessed considerable interest in the position of children and young people acting as witnesses in criminal cases and on how best to facilitate them to give their best evidence and minimise the trauma involved. This paper presents the findings of a small-scale study in Northern Ireland examining the experiences of young witnesses pre-trial, during the trial and post-trial. Interviews were carried out with 37 young witnesses and 33 parents, and a questionnaire was completed by 16 volunteers and practitioners working in a local young witness support scheme. The findings indicate that the prospect and actuality of giving evidence in a criminal trial are anxiety-provoking and stressful for the majority of young witnesses. Particular issues identified are delay, both in terms of cases coming to court and in waiting times at court, the availability of pre-trial preparation and support, facilities at court buildings and the treatment of young people during cross-examination by defence lawyers. The paper concludes that there is a continuing need to strive for improvement, and that this necessarily involves reviewing the experiences of young witnesses and seeking their views on measures designed to enable them to give their best evidence. Copyright © 2013 John Wiley & Sons, Ltd.

Betwixt spaces: Students’ accounts of turning point experiences in first-year transitions

'Not belonging' is becoming a prevalent theme within accounts of the first-year student experience at university. In this study the notion of not belonging is extended by assuming a more active role for the idea of liminality in a student's transition into the university environments of academic and student life. In doing so, the article suggests that the transition between one place (home) and another (university) can result in an 'in-between-ness' - a betwixt space. Through an interpretative methodology, the study explores how students begin to move from this betwixt space into feeling like fully-fledged members of university life. It is concluded that there is a wide range of turning points associated with the students' betwixt transition, which shapes, alters or indeed accentuates the ways in which they make meaningful connections with university life. Moreover, transitional turning point experiences reveal a cast of characters and symbolic objects; capture contrasting motivations and evolving relationships; display multiple trajectories of interpersonal tensions and conflicts; highlight discontinuities as well as continuities; and together, simultaneously liberate and constrain the students' transition into university life.

The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

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.

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

I can't get a breath: experiences of living with advanced chronic obstructive pulmonary disease

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.