Women’s Perceptions and Experiences of Fetal Macrosomia

Objective
to explore women's perceptions and experiences of pregnancy and childbirth following birth of a macrosomic infant (birth weight ≥4000 g).

Methods
a qualitative design utilising interviews conducted 13–19 weeks post partum in women's homes. The study was conducted in one Health and Social Care Trust in Northern Ireland between January and September 2010. Participants were identified from a larger cohort of women recruited to a prospective study exploring the impact of physical activity and nutrition on macrosomia. Eleven women who delivered macrosomic infants participated in this phase of the study.

Findings
four overarching themes emerged: preparation for delivery; physical and emotional impact of macrosomia; professional relations and perceptions of macrosomia. Findings highlighted the importance of communication with health professionals in relation to both prediction of macrosomia and decision making about childbirth, and offers further understanding into the physical and emotional impact of having a macrosomic infant on women. Furthermore, there was evidence that beliefs and perceptions relating to macrosomia may influence birth experiences and uptake of health promotion messages.

Key conclusions and implications for practice
this study provides important insight into women's experiences of macrosomia throughout the perinatal period and how they were influenced by previous birth experiences, professional relations and personal perceptions and beliefs about macrosomia. Pregnant women at risk of having a macrosomic infant may require extra support throughout the antenatal period continuing into the postnatal period. Support needs to be tailored to the woman's information needs, with time allocated to explore previous birth experiences, beliefs about macrosomia and options for childbirth.

Open Data: European Ambitions and Local Efforts. Experiences from Austria

The member states of the European Union are faced with the challenges of handling “big data” as well as with a growing impact of the supranational level. Given that the success of efforts at European level strongly depends on corresponding national and local activities, i.e., the quality of implementation and the degree of consistency, this chapter centers upon the coherence of European strategies and national implementations concerning the reuse of public sector information. Taking the City of Vienna’s open data activities as an illustrative example, we seek an answer to the question whether and to what extent developments at European level and other factors have an effect on local efforts towards open data. We find that the European Commission’s ambitions are driven by a strong economic argumentation, while the efforts of the City of Vienna have only very little to do with the European orientation and are rather dominated by lifestyle and administrative reform arguments. Hence, we observe a decoupling of supranational strategies and national implementation activities. The very reluctant attitude at Austrian federal level might be one reason for this, nationally induced barriers—such as the administrative culture—might be another. In order to enhance the correspondence between the strategies of the supranational level and those of the implementers at national and regional levels, the strengthening of soft law measures could be promising.

Comparing the experiences of rural and urban family caregivers of the terminally ill

Introduction: There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Methods: Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Results: Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; p=0.41). Urban and rural caregivers also reported similarly high levels of social support (mean MSPSS total score of 4.3 [SD=0.7] and 4.1 [SD=0.8], respectively; p=0.40). Although caregivers across both settings reported using a comparable number of services (rural 4.8 [SD=1.9] vs urban 4.5 [SD=1.8]; p=0.39), the types of services used differed. Rural caregivers reported greater use of family physicians (65.1% vs 40.7%; p=0.02), emergency room visits (31.8% vs 13.0%; p=0.02) and pharmacy services (95.3% vs 70.4%; p=0.002), while urban caregivers reported greater use of caregiver respite services (29.6% vs 11.6%; p=0.03). Conclusion: Through the use of standardized tools, this study explored the experiences of rural informal family caregivers providing palliative care in contrast to the experiences of their urban counterparts. The results of the present study suggest that while there are commonalities to the caregiving experience regardless of setting, key differences also exist. Thus, location is a factor to be considered when implementing palliative care programs and services. © K Brazil, S Kaasalainen, A Williams, C Rodriguez, 2013.

Belfast Soundwalks: Experiences in Sound and Place through Locative Media

This article outlines the ongoing development of a locative smartphone app for iPhone and Android phones entitled The Belfast Soundwalks Project. Drawing upon a method known as soundwalking, the aim of this app is to engage the public in sonic art through the creation of up to ten soundwalks within the city of Belfast. This paper discusses the use of GPS enabled mobile devices in the creation of soundwalks in other cities. The authors identify various strategies for articulating an experience of listening in place as mediated by mobile technologies. The project aims to provide a platform for multiple artists to develop site-specific sound works which highlight the relationship between sound, place and community. The development of the app and the app interface are discussed, as are the methods employed to test and evaluate the project.

Community pharmacists and people with dementia: a cross-sectional survey exploring experiences, attitudes, and knowledge of pain and its management

Objectives
To explore community pharmacists' experiences with and attitudes towards people with dementia, and to determine the knowledge they have about pain and its management in this patient population. 

Methods
A questionnaire comprising five sections, including the Approaches to Dementia Questionnaire, was mailed, on two occasions, during February and March 2011, to all community pharmacies in Northern Ireland (n=530). 

Results
The response rate was 34.3%. A greater proportion of pharmacists provided pharmaceutical care to people with dementia living at home (91.2%) than those living in care homes (40.1%). Respondents most frequently encountered queries relating to starting and stopping medications, compliance with medication, and availability of formulation types. The mean total score for the Approaches to Dementia Questionnaire measure was 72.8, indicating a positive attitude towards people with dementia, and respondents demonstrated a strong person-centred approach towards this patient population. The majority of respondents recognised the difficulty of assessing pain in people with dementia; however, younger pharmacists (p=0.041) and pharmacists who provided pharmaceutical care to people with dementia (p=0.012) were more likely to be aware of the pain assessment tools for use in people with dementia. Pharmacists appeared uncertain about how to appropriately manage pain in people with dementia.

Conclusions
The study has revealed that community pharmacists often encounter people with dementia, especially those living in their own homes, and they have positive attitudes towards the patient population. However, training in the assessment and management of pain in people with dementia must be developed to further improve their knowledge in this area. 

'Every pregnant woman needs a midwife'--the experiences of HIV affected women in maternity care

TITLE: 'Every pregnant woman needs a midwife'-the experiences of HIV affected women in Northern Ireland.

OBJECTIVE: to explore HIV positive women's experiences of pregnancy and maternity care, with a focus on their interactions with midwives.

DESIGN: a prospective qualitative study.

SETTING: regional HIV unit in Northern Ireland.

PARTICIPANTS: 22 interviews were conducted with 10 women at different stages of their reproductive trajectories.

FINDINGS: the pervasive presence of HIV related stigma threatened the women's experience of pregnancy and care. The key staff attributes that facilitated a positive experience were knowledge and experience, empathy and understanding of their unique needs and continuity of care.

KEY CONCLUSIONS: pregnancy in the context of HIV, whilst offering a much needed sense of normality, also increases woman's sense of anxiety and vulnerability and therefore the need for supportive interventions that affirm normality is intensified. A maternity team approach, with a focus on providing 'balanced care' could meet all of the woman and child's medical needs, whilst also emphasising the normalcy of pregnancy.

OLDER WOMEN’S LIFELONG EXPERIENCES OF DOMESTIC VIOLENCE IN NORTHERN IRELAND

Violence against women is a serious criminal and public health issue with devastating consequences for women, families and society. To date, little international research has been given to understanding the needs of older women, who are experiencing domestic violence; that is, physical, sexual, emotional or financial abuse carried out by a spouse or partner. This study fills a significant gap in the literature as the needs of older women who have experienced a lifetime of domestic violence in Northern Ireland are unknown. Health professionals, service providers and policy makers often assume that violence stops at age 55 and there is a noticeable lack of literature, research and guidelines on the issue. The greatest challenge for health visitors is that abuse remains hidden, with women remaining silent and finding it difficult to speak openly or seek help.