Literature review : use of respite by carers of people with dementia

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventysix international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

An exploratory study of grief and health-related quality of life for caregivers of people with dementia

The aim of this qualitative study was to explore key positive and negative factors that impact on grief resolution and health outcomes of caregivers who were caring, or had cared, for a family member with dementia who had died. The study was a scoping study and involved face-to-face interviews with these family caregivers (N ¼ 13). Results indicated a complex interaction of issues (many unique to dementia caregiving) which in different combinations acted as protective or risk factors for caregiver outcomes. Interaction of individual characteristics, role appraisal, value of intrinsic and extrinsic resources, and experiences with health professionals during the caregiving period and around the death of their relative were shown to have the most influence on caregiver outcomes. Psychological resilience and satisfaction with caregiving were protective against negative outcomes while unresolved grief was a risk factor. These findings highlight the potential benefits of multicomponent, holistic dementia caregiver interventions.

Panem et circenses : law, law and power in The Hunger Games

Like many cautionary tales, The Hunger Games takes as its major premise an observation about contemporary society, measuring its ballistic arc in order to present graphically its logical conclusions. The Hunger Games gazes back to the panem et circenses of Ancient Rome, staring equally cynically forward, following the trajectory of reality television to its unbearably barbaric end point – a sadistic voyeurism for an effete elite of consumers. At each end of the historical spectrum (and in the present), the prevailing social form is Arendt’s animal laborans. Consumer or consumed, Panem’s population is (with the exception of the inner circle) either deprived of the possibility of, or distracted from, political action. Within the confines of the Games themselves, Law is abandoned or de‐realised: Law – an elided Other in the pseudo‐Hobbesian nightmare that is the Arena. The Games are played out, as were gladiatorial combats and other diversions of the Roman Empire, against a background resonant of Juvenal’s concern for his contemporaries’ attachment to short term gratification at the expense the civic virtues of justice and caring which are (or would be) constitutive of a contemporary form of Arendt’s homo politicus. While the Games are, on their face, ‘reality’ they are (like the realities presented in contemporary reality television) a simulated reality, de‐realised in a Foucauldian set design constructed as a distraction for Capitol, and for the residents of the Districts, a constant reminder of their subservience to Capitol. Yet contemporary Western culture, for which manipulative reality TV is but a symptom of an underlying malaise, is inscribed at least as an incipient Panem, Its public/political space is diminished by the effective slavery of the poor, the pre‐occupation with and distractions of materiality and modern media, and the increasing concentration of power/wealth into a smaller proportion of the population.

Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Working together-apart : exploring the relationships between formal and informal care networks for people dying at home

Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

Measurement of energy expenditure of daily tasks among mothers of young children

There is currently some debate about whether the energy expenditure of domestic tasks is sufficient to confer health benefits. The aim of this study was therefore to measure the energy cost of five activities commonly undertaken by mothers of young children. Seven women with at least one child younger than five years of age spent 15 minutes in each of the following activities: sitting quietly, vacuum cleaning, washing windows, walking at moderate pace (approx 5km/hour), walking with a stroller and grocery shopping in a super-market. Each of the six 'trials' was completed on the same day, in random order. A carefully calibrated portable gas analyser was used to measure oxygen uptake during each activity, and data were converted to units of energy expenditure (METS). Vacuum cleaning, washing windows and walking with and without a stroller were found to be 'moderate intensity activities' (3 to 6 METs), but supermarket shopping did not reach this criterion. The MET values for these activities were similar to those reported in the Compendium of Physical Activities (Ainsworth et al., 2000). However, the energy expenditures of walking, both with and without a stroller, were higher than those reported in the Compendium. The findings suggest that some of the tasks associated with domestic caring duties are conducted at an intensity which is sufficient to confer some health benefit. Such benefits will only accrue however if the daily duration of these activities is sufficient to meet current guidelines.

COPD self-management education : Vietnamese nurses' intention to educate, influencing factors and knowledge base

This thesis used a cross-sectional survey to examine how Vietnamese nurses educate COPD patients about the self-management of their disease. Further, the study also describes the characteristics of Vietnamese nurses working in COPD specialty areas as well as examining their COPD knowledge and the factors which influence their delivery of COPD self-management education when caring for COPD patients. The study found that while Vietnamese nurses are likely to deliver self-management education to the COPD patients they care for, there are areas for improvement in nurses' knowledge in all areas of COPD management and self management education.

Negotiating futility, managing emotions : nursing the transition to palliative care

Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work.

Management of atopic dermatitis in children : evaluation of parents' self-efficacy, outcome expectations, and self-reported task performance using the Child Eczema Management Questionnaire

Child behaviour management is crucial to successful treatment of atopic dermatitis. This study tested relationships between parents’ self-efficacy, outcome expectations, and self-reported task performance when caring for a child with atopic dermatitis. Using a cross-sectional study design, a community-based convenience sample of 120 parents participated in pilot-testing of the Child Eczema Management Questionnaire - a self-administered questionnaire which appraises parents’ self-efficacy, outcome expectations, and self-reported task performance when managing atopic dermatitis. Overall, parents’ self-reported confidence and success with performing routine management tasks was greater than that for managing their child’s symptoms and behaviour. Therewas a positive relationship between time since diagnosis and self-reported performance of routine management tasks; however, success with managing the child’s symptoms and behaviour did not improve with illness duration. Longer time since diagnosis was also associated with more positive outcome expectations of performing tasks that involved others in the child’s care (i.e. healthcare professionals, or the child themselves). This study provides the foundation for further research examining relationships between child, parent, and family psychosocial variables, parent management of atopic dermatitis, and child health outcomes. Improved understanding of these relationships will assist healthcare providers to better support parents and families caring for children with atopic dermatitis. KEYWORDS

Ethical values in emergency medical services: A pilot study

Background Ambulance professionals often address conflicts between ethical values. As individuals’ values represent basic convictions of what is right or good and motivate behaviour, research is needed to understand their value profiles. Objectives To translate and adapt the Managerial Values Profile to Spanish and Swedish, and measure the presence of utilitarianism, moral rights and/or social justice in ambulance professionals’ value profiles in Spain and Sweden. Methods The instrument was translated and culturally adapted. A content validity index was calculated. Pilot tests were carried out with 46 participants. Ethical considerations This study conforms to the ethical principles for research involving human subjects and adheres to national laws and regulations concerning informed consent and confidentiality. Findings Spanish professionals favoured justice and Swedish professionals’ rights in their ambulance organizations. Both countries favoured utilitarianism least. Gender differences across countries showed that males favoured rights. Spanish female professionals favoured justice most strongly of all. Discussion Swedes favour rights while Spaniards favour justice. Both contexts scored low on utilitarianism focusing on total population effect, preferring the opposite, individualized approach of the rights and justice perspectives. Organizational investment in a utilitarian perspective might jeopardize ambulance professionals’ moral right to make individual assessments based on the needs of the patient at hand. Utilitarianism and a caring ethos appear as stark opposites. However, a caring ethos in its turn might well involve unreasonable demands on the individual carer’s professional role. Since both the justice and rights perspectives portrayed in the survey mainly concern relationship to the organization and peers within the organization, this relationship might at worst be given priority over the equal treatment and moral rights of the patient. Conclusion A balanced view on ethical perspectives is needed to make professionals observant and ready to act optimally – especially if these perspectives are used in patient care. Research is needed to clarify how justice and rights are prioritized by ambulance services and whether or not these organization-related values are also implemented in patient care.

Organisational culture, leadership behaviour and job satisfaction among primary health care professionals in Saudi Arabia : a mixed-methods study

The purpose of this study was to improve individual and organisational performance in primary health care (PHC) by identifying the relationship between organisational culture, leadership behaviour and job satisfaction. The study used a sequential explanatory mixed methods design, to investigate the relationships between organisational culture, leadership behaviour, and job satisfaction among 550 PHCC professionals in Saudi Arabia. From surveying the PHC professionals, the results highlighted the importance of human caring qualities, including praise and recognition, consideration, and support, with respect to their perceptions of job satisfaction, leadership behaviour, and organisational culture. As a consequence a management framework was proposed to address these issues.

Medical and nursing students perceived knowledge, attitudes, and practices concerning human immunodeficiency virus

Objective. To assess medical and nursing students’ knowledge, attitudes, and practices (KAP) regarding human immunodeficiency virus (HIV) in Fiji. Methods. A cross-sectional study of 275 medical and 252 nursing students that participated in a questionnaire survey on HIV KAP. Data was analysed according to their gender, program of study, and academic year. Results. The mean HIV knowledge (HK) and attitude scores were 16.0 and 41.3, respectively. Mean HK score was significantly higher in males compared to females. Significant positive correlations were found between HK and academic year for medical () and nursing () students and between HK and attitude scores (). The majority of students indicated fear in contracting HIV through clinical practice and felt that health care workers have the right to know a patients HIV status for their own safety. The majority would wear gloves to touch a patient if suspected of HIV. Conclusions. The study found a high level of HIV knowledge and positive attitude towards HIV patients. However, respondents also displayed negative attitudes and unacceptable practices probably due to fear. Training institutions need to ensure that students gain accurate knowledge on HIV especially on transmission routes to allay the fear of caring for HIV-infected patients.

Maternal employment, work experiences, and financial well-being of Australian mothers who care for young children with special health care needs

The employment and work experiences of mothers who care for young children with special health care needs is the focus of this study. It addresses a gap in the research literature, by providing an understanding of how mothers’ caring role may affect employment conditions, family life, and financial well-being. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. The current study employs a matched case–control methodology to compare the experiences of a group of 292 mothers whose children (aged 4-5 years) with long-term special health care needs with those mothers whose children were typically developing. There were few differences between the two groups with regard to job characteristics and job quality. There were significant differences between the two groups with regard to work–family balance. Fewer mothers with children with special health care needs reported work having a positive effect on family functioning.

Palliative care knowledge, attitudes and perceived self-competence of nurses working in Vietnam

AIM: To explore palliative care knowledge, attitudes and perceived self-competence of nurses working in oncology settings in Hanoi, Vietnam. METHOD: The study employed a cross-sectional descriptive survey design. The self-administered questionnaires consisted of three validated instruments: the Expertise and Insight Test for Palliative Care, the Attitude Toward Care of the Dying Scale B and the Palliative Care Nursing Self Competence Scale. The sample consisted of 251 nurses caring for cancer patients in three oncology hospitals in Vietnam. RESULTS: The responses identified low scores in nurses' palliative care knowledge related to pain and other symptom management and psychological and spiritual aspects. Nurses' responses reflected discomfort in communicating about death and establishing therapeutic relationship with oncology patients who require palliative care. Additionally, nurses reported low scores in perceived self-competence when providing pain management and addressing social and spiritual domains of palliative care. The findings also revealed that nurses who had higher palliative care knowledge scores demonstrated attitudes which were more positive and expressed greater perceived self-competence. CONCLUSION: Nurses working in oncology wards need more education to develop their knowledge and skills of palliative care, especially in the areas of pain management, psychological and spiritual care, and communication