Preventing Social Death in Long Term Care: Fostering Social Connectivity in the U.S. and The Netherlands. ACES Working Papers, July 2012

Long term care (LTC) is both costly and of increasing concern as baby boomers age and more people live longer with chronic conditions. Today, people receive formal and informal LTC supports in homes, nursing homes, and alternative settings around the world. Where people live and the way LTC is delivered has an important impact on whether person’s receiving care thrive as they age. This paper is about how different LTC environments in the U.S. and The Netherlands foster or impede social connectivity, suggesting that quality of life will be impeded and types of social death, or disconnection from social life, more often the result in environments that limit choice and self determination, limit access to privacy and social connection, and limit access to reciprocal exchanges, a key component of participating in relationships typical of the concept of “the gift” introduced by anthropologist Marcel Mauss in 1954. Building on ethnographic data from a 15-month study of LTC in The Netherlands and a review of staffing practices in LTC environments in the U.S. and The Netherlands, I will explore concepts of reciprocity and social connectivity impacted by various LTC environments in two countries known to experiment with different models of care. This research builds on social constructivist notions of death and dying explored throughout this edited volume and adds to this effort examination of social death in anthropological perspective.

The Competing demands of employment and informal caregiving to disabled elders.

Mode of access: Internet.

Cultivating Care: Understanding Intimate Partner Violence Experiences of Undocumented Latinas in Washington State

Thesis (Ph.D.)--University of Washington, 2016-06

The professional role of breast cancer nurses in multi-disciplinary breast cancer care teams

Since the 1970s breast cancer services have witnessed considerable changes in the management of patients. One significant change was the introduction of specialist core personnel, including the breast care nurse (BCN). The role of the BCN has been gaining credence rapidly in the British NHS and this service is perhaps the paradigm of care for other services. With the lack of specific evidence of the role of specialist nurses in the breast care team, the current study aims to explore this area by in-depth interviews with core team members, and observations of 16 multi-disciplinary teams in England. The study explores the following themes: Nurses' unique informal management leadership role in ensuring the co-ordination, communication and planning of the team work; nurses' innovatory role in making the bureaucracy respond to patients and their relatives needs; nurses supportive role in the provision of expert advice and guidance to other members of the team; nurses confidence and humour in well-performing teams; and the limitations of the professional role of the breast cancer nurse. This study indicates that there is evidence that the BCN is practicing at an advanced level of practice. However, there is a severe lack of evidence-based description of that advanced practice. Cancer nurses including the BCNs should develop and participate in programmes of research in line with cancer legislation in order to build an evidence base that ultimately supports their unique role. © 2004 Elsevier Ltd. All rights reserved.

Pre-conception care : current practice and methods of provision

This thesis examines the present provisions for pre-conception care and the views of the providers of services. Pre-conception care is seen by some clinicians and health educators as a means of making any necessary changes in life style, corrections to imbalances in the nutritional status of the prospective mother (and father) and the assessment of any medical problems, thus maximizing the likelihood of the normal development of the baby. Pre-conception care may be described as a service to bridge the gap between the family planning clinic and the first ante-natal booking appointment. There were three separate foci for the empirical research - the Foresight organisation (a charity which has pioneered pre-conception care in Britain); the pre-conception care clinic at the West London Hospital, Hammersmith; and the West Midlands Regional Health Authority. The six main sources of data were: twenty five clinicians operating Foresight pre-conception clinics, couples attending pre-conception clinics, committee members of the Foresight organisation, staff of the West London Hospital pre-conception clinic, Hammersmith, District Health Education Officers working in the West Midlands Regional Health Authority and the members of the Ante-Natal Care Action Group, a sub-group of the Regional Health Advisory Group on Health Promotion and Preventive Medicine. A range of research methods were adopted. These were as follows: questionnaires and report forms used in co-operation with the Foresight clinicians, interviews, participant observation discussions and informal meetings and, finally, literature and official documentation. The research findings illustrated that pre-conception care services provided at the predominantly private Foresight clinics were of a rather `ad hoc' nature. The type of provision varied considerably and clearly reflected the views held by its providers. The protocol which had been developed to assist in the standardization of results was not followed by the clinicians. The pre-conception service provided at the West London Hospital shared some similarities in its approach with the Foresight provision; a major difference was that it did not advocate the use of routine hair trace metal analysis. Interviews with District Health Education Officers and with members of the Ante Natal Care Action Group revealed a tentative and cautious approach to pre-conception care generally and to the Foresight approach in particular. The thesis concludes with a consideration of the future of pre-conception care and the prospects for the establishment of a comprehensive pre-conception care service.

Optimising primary care for people with dementia

This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services - including general practice and pharmacy - with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.

'There's a hell of a noise':living with a hearing loss in residential care

Background: hearing loss is common in older age. Research with older people in residential care settings has identified high prevalence of hearing loss and low uptake of hearing aids. Hearing loss in these settings is associated with reduced social engagement. Although hearing aids remain the default treatment for presbyacusic hearing loss, these are not well used. We do not know what other modifiable factors contribute to communication problems for older people with hearing loss living in residential care. Objectives: to explore the factors affecting communicating with a hearing loss in residential care. Methods: an ethnographic study in two residential care homes comprised 19 sessions of observation, and in-depth interviews with 18 residents. Observations explored communication behaviour in everyday interactions, including mealtimes, structured groups and informal group activities. Interviews were informed by the observations and identified reasons for these behaviours and communication preferences. Observational data were recorded in field notes and interviews were audio-recorded and transcribed. Analysis was conducted using constant comparison methods. Results: hearing loss affected whether residents were able to access social opportunities. Two key themes influenced this (i) contextual issues compounded communication difficulties and (ii) environmental noise restricted the residents' communication choices. Problems were observed at every mealtime and during formal and informal group activities. The use of hearing aids and access to hearing services did not improve social engagement. Conclusions: environmental and social factors are key to maximising communication opportunities. Improvements to communication in residential care settings could be based on changes in these with input from residents and staff. Further work is needed to develop effective communication strategies in residential care.

The effects of the ethic of care in an all-boys school from 1903 to 1974

Nel Noddings’ 1984 publication, Caring: A Feminine Approach to Ethics and Moral Education was the first formal introduction of the concept of an “ethic of care”. It is a concept that stresses the importance of compassion in any relationship. For the purpose of this dissertation, the ethic of care was studied in a specific educational community. ^ This research focused on the role of care ethics in a secondary school (The Ransom School for Boys) from 1903 to 1974. The researcher identified this school as one that operated with an ethic of care and collected and analyzed data from historical school documents as well as from 60–90 minute individual interviews with six alumni, five retired faculty, and two administrators. ^ The case study addressed how students and faculty experienced care ethics within the school and how it has been maintained throughout the adult lives of alumni. An a priori coding rubric was used to examine the presence of care ethics at the Ransom School for Boys and in the adult lives of its alumni. This rubric was generated using information taken from the literature review and encompasses 36 different words to identify the presence of care ethics. ^ The primary research question was: How have alumni incorporated care ethics into their personal and professional lives? Secondary questions included: (1) How did the ethic of care present itself over the span of 71 years? (2) Was character education part of the formal curriculum at the Ransom School? (3) Was character education part of the hidden curriculum at the Ransom School? (4) Did the presence of care ethics support the values being taught in the home? ^ While there has been research done on the importance of care ethics in an educational institution, the research is void of direct evidence associated with care ethics in a school community, specifically, an all-boys, private school. Through deductive analysis, care ethics was found to be present and utilized at the school. The interviews and historical documents suggested that moral education was an integral part of the informal curriculum and helped to integrate the ethic of care within the community.^

Development of an education resource for families and clients navigating through end-of-life care with at-home palliation

Background: Community health nurses (CHNs) play a pivotal role in providing end-of-life care to clients diagnosed with a life-threatening illness. Providing quality end-of-life care is an ethical obligation. Eastern Health’s palliative end-of-life care program (PEOLC) offers nursing care, equipment, services, and support. However, the caregiver’s need for practical information about end-of-life issues is not addressed. Purpose: To develop an educational resource to assist clients and families during end-of-life and to provide a framework for new CHNs in home palliation. Methods: An informal Needs Assessment, a literature review, an environmental scan, and consultations with four CHNs involved with home palliation. Results: An educational resource was developed to address the practical end-of-life issues identified in the literature review and consultations. Conclusion: An improved delivery of care for at-home palliation in the community for clients and families, and a framework for new CHNs.

Caring for the autistic child: a resource manual for health care providers

Background: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that affects approximately 1 in 68 children (CDC, 2014). Comorbid medical conditions and psychiatric disorders increase the likelihood that these children will require acute care services more often than their neurotypical peers (McDermott, Zhou, & Mann, 2008; Simonoff et al., 2008). The evidence suggests that most health care providers are unprepared for the complexity of the interactions with these children during an acute care episode (McGongile, Migyanka, et al., 2014; McGongile, Venkat, et al., 2014; Muskat et al., 2015). Currently, there are no formalized training programs for acute health care workers in Regina Qu’Appelle Health Region (RQHR). Purpose: The purpose of this practicum project was to use the best available evidence on the care needs of children with Autism Spectrum Disorder (ASD) and effective interaction strategies to guide development of a resource manual for acute care health workers, especially registered nurses (RNs), working in the RQHR. Methods: Initial steps involved planning for and conducting a needs assessment. The resulting database emerged from a critical review of relevant literature, an environmental scan of resources within RQHR, and informal consultations with parents and caregivers of children with ASD, acute care nurses and nurse managers and experts in the field of ASD. Following analysis and collation of all data into major themes, a draft blueprint guided development of a resource manual for health care providers interacting with and providing care to children with ASD. Results: The needs assessment data informed development of an educational resource manual appropriate for all health care providers who encounter children with ASD and their parents and/or caregivers within acute care environments. The Caring for the Autistic Child: A Guide for Health Care Providers in Acute Care provides insightful information on the disorder and associated comorbid conditions, as well as effective approaches to care delivery with this priority population. Implementation and evaluation plans will guide distribution of the resource manual within the RQHR. Conclusion: The sequential and interdependent steps taken in this practicum project led to the development of a resource manual comprised of simple, easy to implement strategies capable of assisting nurses and all healthcare providers in providing care tailored to the autistic child’s unique needs and challenges.

Perceived risk of death in older primary care patients

There is a large gap between life expectancy and healthy life years at age 65. To reduce this gap, it is necessary that people with medical concerns perceived at higher risk of adverse outcomes are readily identified and treated. The same goes for the need to implement prevention plans. The main objectives of this study are to, in a first step, (a) estimate the percentage of medical concerns, (b) identify factors associated with this concern; in a second step, (c) estimate the perceived risk of death, and (d) evaluate the ability of medical concerns to predict this risk. Results show that the existence and severity of medical concerns are crucial in the prediction of perceived risk of death. Early identification of severity of medical concerns and the availability and adequacy of informal caregiving should allow healthcare professionals to promptly initiate an appropriate assessment and treatment of older patients.

Santeria as an Informal Psychosocial Support Among Latinas Living with Cancer

Among Latinos, Santería functions as both a religion and a health care system in occurrences of health versus illness within various Latino sub-groups in the U.S. This exploratory study offers a comprehensive analysis of the function of the folk healing tradition Santería as a culturally congruent informal mental health support that assists with coping with the psychosocial sequelae of living with cancer among Latinas in Miami-Dade County, FL. It (a) determined the attitudes of Latinas living with cancer towards Santería as an informal mental health support and (b) explored how Santería offers Latinas effective mental health support that assists in coping with the psychosocial sequelae of living with cancer. The mechanisms and characteristics underlying the motivations of Latinas living with cancer to seek and integrate this informal modality for their cancer care were identified. A purposive sample of 15 Latinas ages 18 and older in Miami-Dade County who had received a diagnosis of cancer were recruited from sites in Miami-Dade offering formal mental health support services and botánicas. Data collection incorporated in-depth interviews and a validation focus group. In an effort to generate theory through a modified Grounded Theory approach, data analysis was accomplished by means of multiple coding passes and the constant comparison method which resulted in higher levels codes that were grouped into three major themes: 1) Participants’ Experience with Folk Healers, 2) Influence of Santería on the Cancer Experience, and 3) Participants’ Experience with Conventional Healthcare and Mental Healthcare. Results illustrate how, among Latinas, the folk healing tradition of Santería co-occurs with professional medical and mental health treatment in what Arthur Kleinman defines as the popular sector, which identifies and sets the parameters for culturally acceptable forms of healthcare and mental health treatment options.

Waged domestic work in Argentina: the regulation of care provision

This paper addresses the condition of domestic work in Argentina, in a perspective that draws from the literature on care work. In this approach, domestic work can be interpreted as one of the mercantile forms in which care work is socially organized, due to the persistence of the traditional sexual division of labor and the weakness of public policies. From these considerations, I develop a quantitative study on the levels of informality, precarity, and wage inequality that characterize domestic work in that country. Thereafter, I discuss the main measures adopted by the Argentine government since 2003, with the goal of reducing legal discrimination of domestic workers and promoting their formalization. On this basis, the paper highlights the advances in the recognition of domestic workers’ labor rights, while emphasizing how social and cultural restraints still permeate labor relations in this sector.

The elderly care and domestic services sector during the recent economic crisis. The case of Italy, Spain and France.

Over the past ten years in Italy, Spain and France, the demographic pressure and the increasing women’s participation in labour market have fuelled the expansion of the private provision of domestic and care services. In order to ensure the difficult balance between affordability, quality and job creation, each countries’ response has been different. France has developed policies to sustain the demand side introducing instruments such as vouchers and fiscal schemes, since the mid of the 2000s. Massive public funding has contributed to foster a regular market of domestic and care services and France is often presented as a “best practices” of those policies aimed at encouraging a regular private sector. Conversely in Italy and Spain, the development of a private domestic and care market has been mostly uncontrolled and without a coherent institutional design: the osmosis between a large informal market and the regular private care sector has been ensured on the supply side by migrant workers’ regularizations or the introduction of new employment regulations . The analysis presented in this paper aims to describe the response of these different policies to the challenges imposed by the current economic crisis. In dealing with the retrenchment of public expenditure and the reduced households’ purchasing power, Italy, Spain and France are experiencing greater difficulties in ensuring a regular private sector of domestic and care services. In light of that, the paper analyses the recent economic conjuncture presenting some assumptions about the future risk of deeper inequalities rising along with the increase of the process of marketization of domestic and care services in all the countries under analysis.    

Informal caregiving and mental ill health – differential relationships by workload, gender, age and area-remoteness in a UK region

Informal caregiving can be a demanding role which has been shown to impact on physical, psychological and social wellbeing. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal caregiving and mental health. This paper reports on a study carried out in a UK region which investigated the relationship between informal caregiving and mental ill health. The analysis was conducted by linking three datasets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency. Our analysis used both a subjective measure of mental ill health, i.e. a question asked in the 2011 Census, and an objective measure, whether the respondents had been prescribed antidepressants by a General Practitioner between 2010 and 2012. We applied binary logistic multilevel modelling to these two responses to test whether, and for what sub-groups of the population, informal caregiving was related to mental ill health. The results showed that informal caregiving per se was not related to mental ill health although there was a strong relationship between the intensity of the caregiving role and mental ill health. Females under 50, who provided over 19 hours of care, were not employed or worked part-time and who provided care in both 2001 and 2011 were at a statistically significantly elevated risk of mental ill health. Caregivers in remote areas with limited access to shops and services were also at a significantly increased risk as evidenced by prescription rates for antidepressants. With community care policies aimed at supporting people to remain at home, the paper highlights the need for further research in order to target resources appropriately.