Relación entre el número de horas de cuidado informal y el estado de salud mental de las personas cuidadoras

Fundamento: La salud mental de las personas cuidadoras se ve perjudicada por las tareas de cuidado. Son necesarios estudios que especifiquen la influencia de diversas variables en la asociación entre cuidado informal y salud mental. El objetivo del trabajo es analizar los efectos del tiempo dedicado al cuidado informal en la salud mental por sexo según el tipo de personas dependientes. Métodos: Los datos que se utilizaron fueron los de la Encuesta Nacional de Salud 2006, cuya muestra estaba compuesta por 29.478 participantes. Variables: salud mental (GHQ-12), tiempo de cuidado, edad, clase social y apoyo funcional (Duke-UNC). Se realizó análisis de regresión logística para determinar la probabilidad de contar con mala salud mental según horas de cuidado, ajustado por edad, clase social y apoyo funcional. Resultados: Las mujeres presentan peor salud mental a partir de 97 horas semanales en el cuidado a menores (OR=1,372), de 25 horas en el cuidado a personas mayores de 74 años (OR=1,602 entre 25 y 48 horas; OR=1,467 49-96h; OR=1,874 97-168h) y cuando dedican alguna hora al cuidado de personas adultas con discapacidad (OR=1,996 0-24h; OR=2,507 25-48h; OR=3,016 49-96h; OR=1,651 97-168h). Los varones muestran deterioro de la salud psicológica cuando dedican un elevado número de horas al cuidado de personas mayores de 74 años (OR=2,810 97168h.) y personas con discapacidad (OR=3,411 97-168h.) y cuando dedican de 0 a 24h al cuidado de menores (OR=1,595). Conclusiones: El efecto del número de horas de cuidado en la salud mental de las personas cuidadoras está influido por el tipo de persona dependiente y por el sexo de la persona cuidadora.

Performance of Long-Term Care Systems in Europe. ENEPRI Research Report No. 117, 21 December 2012

This report evaluates the performance of long-term care (LTC) systems in Europe, with a special emphasis on four countries that were selected in Work Package 1 of the ANCIEN project as representative of different LTC systems: Germany, the Netherlands, Spain and Poland. Based on a performance framework, we use the following four core criteria for the evaluation: the quality of life of LTC users, the quality of care, equity of LTC systems and the total burden of LTC (consisting of the financial burden and the burden of informal caregiving). The quality of life is analysed by studying the experience of LTC users in 13 European countries, using data from the Survey of Health, Ageing and Retirement in Europe (SHARE). Older persons with limitations living at home have the highest probability of receiving help (formal or informal) in Germany and the lowest in Poland. Given that help is available, the sufficiency of the help is best ensured in Switzerland, Italy and the Netherlands. The indirectly observed properties of the LTC system are most favourable in France. An older person who considers all three aspects important might be best off living in Belgium or Switzerland. The horizontal and vertical equity of LTC systems are analysed for the four representative countries. The Dutch system scores highest on overall equity, followed by the German system. The Spanish and Polish systems are both less equitable than the Dutch and German systems. To show how ageing may affect the financial burden of LTC, projections until 2060 are given for LTC expenditures for the four representative countries. Under the base scenario, for all four countries the proportions of GDP spent on public and private LTC are projected to more than double between 2010 and 2060, and even treble in some cases. The projections also highlight the large differences in LTC expenditures between the four countries. The Netherlands spends by far the most on LTC. Furthermore, the report presents information for a number of European countries on quality of care, the burden of informal caregiving and other aspects of performance. The LTC systems for the four representative countries are evaluated using the four core criteria. The Dutch system has the highest scores on all four dimensions except the total burden of care, where it has the second-best score after Poland. The German system has somewhat lower scores than the Dutch on all four dimensions. The relatively large role for informal care lowers the equity of the German system. The Polish system excels in having a low total burden of care, but it scores lowest on quality of care and equity. The Spanish system has few extreme scores. Policy implications are discussed in the last chapter of this report and in the Policy Brief based on this report.

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

Burden of care and general health in families of patients with schizophrenia

Background De-institutionalization of psychiatric patients has led to a greater emphasis on family management in the community, and family members are often overwhelmed by the demands that caring for a patient with schizophrenia involves. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a regional area of a medium income country in South America. Method Sixty-five relatives of patients with schizophrenia who were attending a public mental health out-patient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale and SF-36 Health Survey (SF-36). Results Average levels of burden were very high, particularly for mothers, carers with less education, carers of younger patients and carers of patients with more hospitalisations in the previous 3 years. Kinship and number of recent hospitalisations retained unique predictive variance in a multiple regression. Burden was the strongest predictor of SF-36 subscales, and the prediction from burden remained significant after entry of other potential predictors. Conclusions In common with families in developed countries, family members of schizophrenia patients in regional Chile reported high levels of burden and related functional and health impact. The study highlighted the support needs of carers in contexts with high rates of poverty and limited health and community resources.

Minding the money: A growing responsibility for informal carers

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised -as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although 'minding the money' has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that 'minding the money' is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

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.

Exploring care relations in later life: disentangling notions of care and choice

The experience of later life varies widely and is often framed in terms of the active lifestyles of the Third Age and the frailty and abjection of the Fourth Age. This thesis sought to understand how the concepts of care and choice are enacted, experienced and interrelated in the context of both informal and formal care in later life and how older people themselves, their families and significant others understand and experience these concepts. The discourse of personalisation that dominates care services has led to an emphasis on individual choice, control and independence so that those in need of care are faced with what has been described as the ‘logic of choice’, a focus on individual responsibility rather than care. Adopting a Feminist Foucauldian theoretical approach and drawing on Tronto’s (1993) ethic of care, this thesis explores the experiences of older people and their informal carers through dialogical narrative analysis. The stories begin with the recognition by individuals that there is a need for care and how this need is met through negotiations with families and significant others. As needs increase the physical and logistical limits of informal care by individuals are reached, often leading to a need to ‘choose’ formal care. Rather than impacting solely on the care recipient, formal care is shown as being an experience that is shared with informal carers. Indeed, the participants depict how informal care continues alongside formal care and how the boundaries between them become blurred. I argue that a binary division between actively making choices and being a passive recipient are not appropriate to understandings of care. By disentangling the notions of care and choice this thesis explores the extent to which these concepts are relevant to the experience of older people in specific care situations.

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.