A qualitative study of the impact of an educational intervention on older parents of adults with disabilities engaged in the phenomenon of future-care planning

This phenomenological study describes the impact of an educational intervention on the day-to-day experiences of older parent caregivers of adults with developmental disabilities who were engaged in the process of future-care planning. Qualitative strategies of individual and focus group interviewing were used with a purposive sample of older caregivers. Participants were members of an existing parent support group. Twenty-three caregivers representing 18 families were queried before and after the education program. The disabilities represented were mental retardation, cerebral palsy and autism. Parents whose children live at or away from home were included. The intervention was conducted on five Saturdays over a two month period; the duration of the study was five months. Findings used typical words of the respondents from their individual and focus group interviews to describe feelings, attitudes and experiences in making future-care plans. Data from verbatim transcriptions and researcher's field notes were coded, analyzed, sorted into themes, and subjected to interpretive analysis. Respondents showed a positive change in attitudes and actions after participating in the education program, regardless of their initial stage in care planning. Fears were replaced by hope and determination; hesitation and ineptitude by feelings of competence and confidence; and procrastination and delay by purposeful actions. Other key findings: use of a planning document greatly aided caregivers; barriers to planning were often intrinsic and amenable to education; residential plans were the most difficult aspect of planning; listening to the experiences of other parent caregivers was helpful; and making burial plans for their offspring was one aspect of planning parents wished to do themselves. ^

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.

Parents' concerns about future pregnancy after stillbirth: a qualitative study

Objectives: As stillbirth has a devastating impact, it is imperative to understand the importance of clinical and emotional care after stillbirth and how it influences subsequent pregnancies. The aim of the study was to gain insight into the consideration and planning of a subsequent pregnancy by parents in the weeks following stillbirth. Design: A qualitative semi-structured interview format was utilized. Interpretative phenomenological analysis was employed as the analytic strategy. Participants and setting: The recruitment strategy focused on couples whereby the parents of ten stillborn babies were contacted; however, five men declined to participate in the study. The final sample of 15 parents were all Irish: ten of whom were female and five of whom were male. Results: Findings revealed two superordinate themes relating to a subsequent pregnancy after stillbirth: aspirations for future pregnancy and expectations of future care. Parents disclosed how the prospect of a subsequent pregnancy was daunting with fears about the potential loss of another child. Despite these fears, parentsâ aspirations differed in the days following stillbirth; mothers wished to plan a future pregnancy while fathers were reluctant to consider any pregnancies. Parents were unsure of what to expect in terms of the level of care that would be provided to them in a subsequent pregnancy. Additional appointments at the maternity hospital were considered crucial to provide reassurance during a subsequent pregnancy. Conclusions: These findings underscore the far-reaching and contrasting effects of stillbirth on parents. These complex needs highlight the importance of the multidisciplinary team approach.Objectives: As stillbirth has a devastating impact, it is imperative to understand the importance of clinical and emotional care after stillbirth and how it influences subsequent pregnancies. The aim of the study was to gain insight into the consideration and planning of a subsequent pregnancy by parents in the weeks following stillbirth. Design: A qualitative semi-structured interview format was utilized. Interpretative phenomenological analysis was employed as the analytic strategy. Participants and setting: The recruitment strategy focused on couples whereby the parents of ten stillborn babies were contacted; however, five men declined to participate in the study. The final sample of 15 parents were all Irish: ten of whom were female and five of whom were male. Results: Findings revealed two superordinate themes relating to a subsequent pregnancy after stillbirth: aspirations for future pregnancy and expectations of future care. Parents disclosed how the prospect of a subsequent pregnancy was daunting with fears about the potential loss of another child. Despite these fears, parentsâ aspirations differed in the days following stillbirth; mothers wished to plan a future pregnancy while fathers were reluctant to consider any pregnancies. Parents were unsure of what to expect in terms of the level of care that would be provided to them in a subsequent pregnancy. Additional appointments at the maternity hospital were considered crucial to provide reassurance during a subsequent pregnancy. Conclusions: These findings underscore the far-reaching and contrasting effects of stillbirth on parents. These complex needs highlight the importance of the multidisciplinary team approach.

Your life and your choices: plan ahead booklet

This booklet explains how you can plan ahead for your future care in Northern Ireland. It discusses creating a Lasting Power of Attorney, writing down how you'd like to be cared for using a Preferred Priorities for Care document and writing Advance Decisions to Refuse Treatment. It also has information about making a will, organ and tissue donation, and funeral planning.Please note: This booklet only covers Northern Ireland. If you live in England, Scotland and Wales you should ask a healthcare or legal professional to give you information that's relevant to that country.If you'd like to order more than 25 copies, please email marketing@macmillan.org.ukTo view the booklet please click�here.

Autopsy: quality assurance in the ICU

Objective: To examine the correlation between the clinical diagnosis and autopsy findings in adult patients who died in an intensive care unit (ICU). To determine the rate of agreement of the basic and terminal causes of death and the types of errors in order to improve quality control of future care,Design, Retrospective study.Setting: Adult ICU in a university hospital.Patients: 30 adult patients who died in the ICU. with the exclusion of medicolegal cases.Methods and main results: Anatomo-clinical meetings were held to analyze the pre- and postmortem correlations in 30 consecutive autopsies at the ICU of the University Hospital, School of Medicine of Botucatu/ UNESP, from January 1994 to January 1997. The rate of correct clinical diagnoses of the basic cause was 66.7 %; in 23.3 % of cases, if the correct diagnosis was made, management would have been different, as would have been the evolution of the patient's course (Class I error): in 10 % of the cases the error would not have led to a change in management (Class II error). The rate of correct clinical diagnoses of terminal cause was 80 %.Conclusions: the rate of recognition of the basic cause was 66.7 %, which is consistent with the literature, but the Class I error rate was higher than that reported in the literature.

Diabetes service provision:a qualitative study of newly diagnosed Type 2 diabetes patients' experiences and views

Aims: To explore newly diagnosed Type 2 diabetes patients' views about Scottish diabetes services at a time when these services are undergoing a major reorganization. To provide recommendations to maximize opportunities brought by the devolvement of services from secondary to primary healthcare settings. Methods: Qualitative panel study with 40 patients newly diagnosed with Type 2 diabetes, recruited from hospital clinics and general practices in Lothian, Scotland. Patients were interviewed three times over 1 year. The study was informed by grounded theory, which involves concurrent data collection and analysis. Results: Patients were generally satisfied with diabetes services irrespective of the types of care received. Most wanted their future care/review to be based in general practice for reasons of convenience and accessibility, although they dis-liked it when appointments were scheduled for different days. Many said they lacked the knowledge/confidence to know how to manage their diabetes in particular situations, and needed access to healthcare professionals who could answer their questions promptly. Patients expressed a need for primary care professionals who had diabetes expertise, but who had more time and were more accessible than general practitioners. Patients who had encountered practice lead nurses for diabetes spoke particularly positively of these professionals. Conclusions: Nurses with diabetes training are particularly well placed to provide information and support to patients in primary care. Ideally, practices should run 'one-stop' diabetes clinics to provide structured care, with easily accessible dietetics, podiatry and retinopathy screening. Newly diagnosed patients may benefit from being made more aware of specific services provided by charitable organizations such as Diabetes UK. © 2005 Diabetes UK.

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.

A Better Future - 50 Years of Child Care in Northern Ireland

A Better Future - 50 Years of Child Care in Northern Ireland 1950 to 2000

Future Dementia Care in Ireland: Sharing the Evidence to Mobilise Action

A major challenge facing societies across the world today is population ageing. The fact that people are living longer and the notable improvements in the overall quality of life and well-being of older people today needs to be celebrated. However, population ageing will inevitably result in an increase in disability and a very significant increase in the incidence of age-related health problems especially Alzheimer's disease and the related dementias. Click here to download PDF 2.5mb

Future dementia care in Ireland: A guide

A new guide on dementia�� in Ireland was launched June 19 by Minister of State at the Department of Health Kathleen Lynch. The guide was developed to disseminate to the public, and in lay man's terms, the key findings contained in a report entitled 'Creating Excellence in Dementia Care: A Research Review to inform Ireland's National Dementia Strategy.' The new guide is a joint collaboration between�� the Living with Dementia programme, Trinity College Dublin, and the Irish Centre for Social Gerontology (ICSG), NUI Galway. The research work was funded by The Atlantic Philanthropies and supported by the Department of Health.Access the guide here: http://livingwithdementia.tcd.ie/assets/pdf/Future_Dementia_Care_in_Irel...

CARDI Research Brief: Future demand for long-term care in Ireland

With the population across the island of Ireland growing older, the issue of how to provide and pay for care in the home and in residential settings is becoming more urgent. It is important that a strategy for providing long-term care for an ageing population is put in place, and understanding what the demand for care will be is a major part of this. As a result, CARDI funded a research project led by Professor Charles Normand at Trinity College Dublin which aimed to develop a predictive model of future long-term care demand in NI and ROI.This research brief contains information collated by CARDI and a summary of the findings in the full report, Towards the Development of a Predictive Model of Long-Term Care Demand for Northern Ireland and the Republic of Ireland (Wren et al., 2012).

Building Consensus for the Future - Report of the Feasibility Study on Palliative Care for People with Dementia

The Alzheimer Society of Ireland have launched a report "Building Consensus for the Future: Report of the Feasibility Study on Palliative Care for People with Dementia".�� The report outlines the findings of a research project carried out in association with the Irish Hospice Foundation.