Living and coping with Parkinson's disease: Perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n=17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services. © The Author(s) 2010.

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

When care is left to roam: Carers' experiences of grassroots nonprofit services in Ireland

Increasingly countries are turning to nonprofit organisations to provide health and social care, particularly for people with disabilities. Alongside this change, debates continue about how states should manage the relationship with such organisations. Should features of the old-style "welfare" model be retained? Should aspects of the "new public management" model be chosen to measure the impact of the work? Yet others argue that grassroots organisations should form the basis of a service provision system. In the context of these debates, Ireland serves as an interesting case study of the system of care that can emerge when the state operates a "relaxed control" approach. This paper takes the perspectives of users themselves: family carers who are accessing services for a disabled adult child, to examine the effects of this approach on the ground. We show how geography played a central role in shaping these experiences, and discuss how we can learn from the Irish context. Rather than arguing for narrowly defined contractual measures, we conclude by proposing a renewed focus on relationship building with the aim of effective system operation, in the future of care services. © 2010 Elsevier Ltd.

Improving Patient Safety Through Formal and Informal Learning Networks

This paper explores a novel perspective on patient safety improvements, which draws on
contemporary social network and learning theories. A case study was conducted at a Portuguese
acute university hospital. Data collection followed a staged approach, whereby 46 interviews
were conducted involving 49 respondents from a broad array of departments and professional
backgrounds. This case study highlights the importance of two major interlinked factors in
contributing to patient safety improvements. The first of these is the crucial role of formal and
informal, internal and external social networks. The second is the importance and the possible
advantage of combining formal and informal learning. The analysis suggests that initiatives
rooted in formal learning approaches alone do not necessarily lead to the creation of long-term
grounded internal safety networks, and that patient safety improvements can crucially depend on
bottom-up initiatives of communities of practice and informal learning. Traditional research on
patient safety places a strong emphasis on top-down and managerialist approaches and is often
based on the assumption that „safety? learning is primarily formal and context-independent. This
paper suggests that bottom-up initiatives and a combination of formal and informal learning can
make a major contribute to patient safety improvements.

New challenges faced by carers during their child's hospital admission under segregation

Introduction
This paper presents the results of a qualitative study of CF family carers at the Belfast Paediatric CF Centre. The aim of this study was to describe the carer experience of their child’s admission to hospital under segregated care arrangements, and to highlight the meaning of segregation and cross infection from the carer perspective.

Method
Carers of children with CF who were admitted for two week IV antibiotic treatment during the study period were eligible to participate in this qualitative study. A consecutive series of eligible carers were approached in order of admission and within the time constraints of KR who was present two days each week. Recruitment of carers ended when no new themes emerged. Ten carers, 9 mothers and 1 couple, were interviewed about their experiences (mean age of child: 11.8 years; range: 1-17 years). Interpretative Phenomenological Analysis (IPA) was used to analyse and interpret the interview data.

Results and discussion
Balancing demands and dilemmas was the main contextual theme or experience of being a carer of a child with CF, and particularly so during admission to hospital. Many decisions were required every day that resulted in ‘double binds’ comprising uncertainty and stress. Three secondary themes captured the essence of carers’ experiences specifically related to segregation: managing risk and uncertainty; the burden of admission; and getting through each day. These themes will be described with examples illustrating the challenges faced by carers during their child’s hospitalisation, and the impact of segregation upon carers.

Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: A longitudinal study.

Context: Family carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.

Objectives: To ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.

Methods: A longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n = 167) and 13 months postdeath (T3; n = 143).

Results: The PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.

Conclusion: Screening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.

Digital loyalty card 'Big Data' and small business marketing: Formal versus informal or complementary?

This article proposes that a complementary relationship exists between the formalised nature of digital loyalty card data, and the informal nature of small business market orientation. A longitudinal, case-based research approach analysed this relationship in small firms given access to Tesco Clubcard data. The findings reveal a new-found structure and precision in small firm marketing planning from data exposure; this complemented rather than conflicted with an intuitive feel for markets. In addition, small firm owners were encouraged to include employees in marketing planning.

Formal calibration methodology for CFD models of naturally ventilated indoor environments

Well planned natural ventilation strategies and systems in the built environments may provide healthy and comfortable indoor conditions, while contributing to a significant reduction in the energy consumed by buildings. Computational Fluid Dynamics (CFD) is particularly suited for modelling indoor conditions in naturally ventilated spaces, which are difficult to predict using other types of building simulation tools. Hence, accurate and reliable CFD models of naturally ventilated indoor spaces are necessary to support the effective design and operation of indoor environments in buildings. This paper presents a formal calibration methodology for the development of CFD models of naturally ventilated indoor environments. The methodology explains how to qualitatively and quantitatively verify and validate CFD models, including parametric analysis utilising the response surface technique to support a robust calibration process. The proposed methodology is demonstrated on a naturally ventilated study zone in the library building at the National University of Ireland in Galway. The calibration process is supported by the on-site measurements performed in a normally operating building. The measurement of outdoor weather data provided boundary conditions for the CFD model, while a network of wireless sensors supplied air speeds and air temperatures inside the room for the model calibration. The concepts and techniques developed here will enhance the process of achieving reliable CFD models that represent indoor spaces and provide new and valuable information for estimating the effect of the boundary conditions on the CFD model results in indoor environments. © 2012 Elsevier Ltd.