Dr B Nyatanga publications etc - hidden page 19 March 2014
BJCN - British Journal of Community Nursing
IJPN - International Journal of Palliative Nursing
From BN's UoW page with added links
Teaching & Research Specialist Teaching Areas Palliative and End of Life Care Google Research Methods - (undergraduate to postgraduate levels) Advanced Communication Skills using actors NHS leadership qualities framework Google
Specialist Research Areas Psycho-social aspects of death and dying Google Cultural competence general cultural competence theory nursing inc scholarly articles ditto mental health Congress Presentation Nyatanga, B. (2011) 12th EAPC Congress. Lisbon mention at D490 here Research Interests Death anxiety and burnout among palliative care nurses Google (undertaking at present) Professional Interests Palliative End of Life Care, death anxiety, psychology of death and dying, research methods
External Responsibilities External examiner for Dundee University - masters degree in Palliative care here
source - Worcester Uni here
Google African Palliative Care Association here
Publications Dr B Nyatanga - Publications 2005 - 2012 here Links and small text have been added. Publications not on that list are shown below. Both lists serve to conduct research at the Hive. So far, I have public access to SCIE Dementia Gateway here, Without logging in I can find, for example, Dying well at home here Research databases here Once logged in, if Nyatanga Brian is put in the search box, nothing useful results. International Journal of Palliative Nursing gives the result here. Research databases here gives access to Social Care Online here. Logged in. British Journal of Community Nursing result. One of use on p 1. Nothing on p 2. Advanced search using journal article - Attitudes to death: a time to pose difficult questions result
BJCN - British Journal of Community Nursing here IJPN - International Journal of Palliative Nursing here Sage here BT comment on Sage Review page here Amazon here South Bank University here Ethic Share here BiomedExperts here Empathy in palliative care: is it possible to understand another person? related articles here
Do pilot studies have any value in research? Brian Nyatanga International Journal of Palliative Nursing, Vol. 11, Iss. 7, 21 Jul 2005, pp 312 When pilot studies are conducted as part of a research process, they can be useful in many ways. For example, improving the internal validity of a questionnaire or scale, assessing the feasibility of the main study, establishing whether the sampling frame and technique are effective and giving feedback on the logistics of data collection. However, there are limitations, particularly when the researcher makes inaccurate assumptions based on the pilot data. The fact that a pilot was conducted does not mean success in the main study and, in some cases, pilot data gets included in the main study, thereby, creating contamination.
Culture, palliative care and multiculturalism Brian Nyatanga International Journal of Palliative Nursing, Vol. 8, Iss. 5, 02 May 2002, pp 240 - 246 The frequently asked question, ‘Why do minority ethnic groups not access palliative care?’ needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalists disseminating ‘knowledge’. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethnic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours.
Attitudes to death: a time to pose difficult questions Brian Nyatanga British Journal of Community Nursing, Vol. 18, here Iss. 10, 04 Oct 2013, pp 512 One of the emphases of the End of Life Care Strategy (Department of Health, 2008 (link added here) was the need for intensified effort from both the public and professionals to talk openly about death and dying as a process we all go through. source Google The right to die is dealt with here
Hidden aspects of palliative careNyatanga, Brian; Astley-Pepper, Maxine This multi-contributor text focuses on some of the hidden challenges and aspects found in palliative care provision. The authors bring a wealth of insight into the difficult or challenging questions that are not always discussed openly in palliative care settings. It explores the differences between what is said openly by practitioners and how that is then documented in patients' records. The liberal reader will find this book of interest and the honesty challenging at all levels. Brian Nyatanga is a Macmillan Senior Lecturer at the University of Central England, Birmingham. Maxine Astley-Pepper is a Macmillan Senior Lecturer at the University of Central England, Birmingham pagetop here for pasting Dr B Nyatanga publications etc - hidden page here Dr B Nyatanga - Publications 2005 - 2012 hidden page here Dementia and related topics Home page herepagetop here ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
BJCN - British Journal of Community Nursing here IJPN - International Journal of Palliative Nursing here Sage here BT comment on Sage Review page here Amazon here South Bank University here Ethic Share here BiomedExperts here Empathy in palliative care: is it possible to understand another person? related articles here
Links and small text have been added. 2013 Transition from paediatric to adult palliative care: more than a physical change B Nyatanga - British journal of community nursing, 2013 - internurse.com The challenges faced by young people with cancer and other palliative care needs have been well documented by many, including the charity 'Together for Short Lives'(www. togetherforshortlives. org. uk). These young people also have the added challenge of ... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2012: Nyatanga, B. Is there room at the Inn: palliative care for homeless people. BJCN. Vol 17(10), October 2012 here
2012: Nyatanga, B. Are GPs ready to talk about death and dying? BJCN. Vol 17(9). September 2012 The right to die is dealt with here
2012: Nyatanga, B. Communicating with dying patients: a time to listen more than talk. BJCN. Vol. 17(8) August 2012
2012: Nyatanga, B. In search of alternative ways of dying. Editorial. IJPN Vol. 18(7). July 2012
2012: Nyatanga, B. Inside the mind of a relative at the end of life. BJCN. 17(7). 28th June 2012
2012: Nyatanga, B. Making a difference through QELCA: engaging community nurses in caring. BJCN Vol. 17, Iss. 6, 31 May 2012, pp 285
2012: Nyatanga, B. From bowel habits to sexuality: the taboos of caring in palliative care. BJCN Vol. 17, Iss. 5, 04 May 2012, pp 210 - 21
2012: Nyatanga, B. Caring about Culture (Editorial). BJCN. 17(4) March 2012.
2012: Nyatanga, B. Looking after everyone else except yourself: the double edged sword of caring. BJCN 17(2): 109 February 2012 Looking after everyone except yourself: the double-edged sword of caringB Nyatanga - British journal of community nursing, 2012 - internurse.com Caring is, in a broad sense, a basic phenomenon of human life (Benner and Wrubel, 1989; Noddings 1999) and an intrinsic part of what it is to be human. In other words, human beings may not consciously choose to care, but caring is inherent in them: it is an activity ... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
2012: Idigbe, I.E., Nyatanga, B. Nicol, J. Touching Lives: Making a difference through match making in an HIV clinic. IJPN 18(2): 56-60. February 2012
2012: Nyatanga, B. Enabling patients to die at home: hidden tensions and barriers. Comment. BJCN 17(1) January 2012
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2011: Nyatanga, B. Death and Dying. In Birchenall and Adams, N. (eds). The Nursing Companion. Basingstoke, Palgrave Macmillan The right to die is dealt with here
2011: Nyatanga, B. In pursuit of cultural competence: service accessibility and acceptability. International Journal of Palliative Nursing. 17(5) p212- 215 Abstract Inequalities in end-of-life care provision are well documented and are a priority for organizations both nationally and internationally. It is well recognized that end-of-life care should be provided not just for patients with cancer, and that access to services should be based on need rather than on disease. Of even greater importance, particularly in multicultural societies, is the realization that such services should also be accessible to all, regardless of gender, culture, religion, ethnicity, etc. To achieve this, a degree of cultural sensitivity across care provision sectors is a prerequisite. Services must be acceptable as well as accessible to all, regardless of ethnic or cultural background. source cf The pursuit of cultural competence: service accessibility and acceptabilityB Nyatanga - International journal of palliative nursing, 2011 - internurse.com 214 International Journal of Palliative Nursing 2011, Vol 17, No 5 offer is a main reason for their underutilization. A lack of cultural sensitivity may mean:● A discrepancy or mismatch between service provision and the needs to be met● Lack of confidence among patients ... 2011: Nyatanga, B. Reaching out: doing ‘good’ in the name of palliative care. IJPN (editorial) 17(6)
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2010: Nyatanga, B. Survivorship: Living with and beyond cancer. IJPN, editorial. 16(2)
2010: Nyatanga, B. Talking openly about death. IJPN, editorial. 16(6) Nyatanga, L.,
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2009: Nyatanga, B. Are your shoe laces shortening? Editorial. IJPN 15(2)
2009: Nyatanga, B. A passage to Switzerland. Editorial IJPN 15(7) The right to die is dealt with here
2009: Nyatanga, B. When last offices are more than a white sheet. Comment. British Journal of Nursing 18(17) When last offices are more than just a white sheetB Nyatanga, H de Vocht - British Journal of Nursing, 2009 - internurse.com The recently published End of Life Care Strategy in the UK encourages people to talk openly about death and dying (Department of Health, 2008). The idea should not only be applicable to palliative care settings, but to other healthcare environments and the public sector. It is ...
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2008: Why is it so difficult to die? 2nd edition some here The right to die is dealt with here
2008; Intuition in clinical decision-making: a psychological penumbra IJPN 14(10) 492- 496 Intuition in clinical decision-making: a psychological penumbraB Nyatanga, H Vocht - International journal of palliative nursing, 2008 - internurse.com Abstract Aim: To demonstrate the link between intuition and cognitive as well as physiological processes as a way of helping to explain how intuition plays a part in complex decision-making. Background: Over the years, numerous debates and discussions have ...
Adapting to Death, Dying and BereavementB Nyatanga - Handbook of Palliative Care, 2008 - books.google.com Our fear of death and the loss of a loved one are two of the most monumental emotional challenges of human existence. This anxiety is usually suppressed and is only exposed when the reality of a possible death is confronted. Fear of death stems from different ...
2008: Nyatanga, B. Cultural competence; a noble idea in a changing world. Editorial. International journal of palliative nursing. 14(7) Cultural competence: a noble idea in a changing worldB Nyatanga - International journal of palliative nursing, 2008 - internurse.com AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/ Palliative Care, Prince of Wales Children's Hospital, New South Wales Kate White Associate Professor Cancer and Palliative Care, Head, School of Nursing and Public Health, Edith Cowan University, ... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
2007: Health Professionals’ opposition to euthanasia and assisted suicide: a personal view. IJPN 13(7) 351-355
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2006: Towards a definition of death anxiety. IJPN 12 (9) 410-413 Towards a definition of death anxietyB Nyatanga, H de Vocht - International Journal of Palliative Nursing, 2006 - internurse.com some of these here. Indulging in such a philosophical dialogue is intended to first, highlight the elusive nature of this concept and second, bring about possible understanding. This may in turn lead us to find how best to research and/or teach the concept, and inform ...
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2005: Is fear of death itself a rational preoccupation? IJPN 11(12) 643- 645 The right to die is dealt with here Is fear of death itself a rational preoccupation?B Nyatanga - International journal of palliative nursing, 2005 - internurse.com Correspondence to: Brian Nyatanga or post-death existence, it becomes crucial, if one was to refute the assertion, that proof is established of the difference between the two extreme existences. This was made by Nagel (1970) who argues that there is a difference between ...
Do pilot studies have any value in research?B Nyatanga - International journal of palliative nursing, 2005 - internurse.com ... Contents - internurse 11(7): Jul 2005. Do pilot studies have any value in research? in pdf format Do pilot studies have any value in research? (60kb). Brian Nyatanga International Journal of Palliative Nursing 11(7) : 312 (Jul 2005). view abstract; view article; Request Permissions ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2002 Culture, palliative care and multiculturalism B Nyatanga - International journal of palliative nursing, 2002 - internurse.com Abstract The frequently asked question,'Why do minority ethnic groups not access palliative care?'needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all ... ~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2001 cultural diversity B Nyatanga, M Senior - International journal of palliative nursing, 2001 - internurse.com Recognition and promotion of cultural diversity is a central theme in many areas of modern life: health care, sport, politics, religion, education, industry and society at large. Cultural diversity is no more than rhetoric, however, unless people understand and appreciate diversity so ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 1997 Cultural issues in palliative care B Nyatanga - International Journal of Palliative Nursing, 1997 - internurse.com When providing palliative care to any patient, the carer must have an idea of the patient's value and belief system. This is particularly important in societies like Britain's, which, at one time almost entirely Christian, have become more plural in recent decades. Britain's National Council ... Psychosocial theories of patient non-compliance.B Nyatanga - Professional nurse (London, England), 1997 - europepmc.org Patient non-compliance with medication should not be viewed as an act of defiance. Medication non-compliance can have a negative impact on care. Nurses need to understand the reasons for non-compliant behaviour. Psychosocial theories are useful in ... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ External Responsibilities External examiner for Dundee University - masters degree in Palliative care
pagetop here for pasting B Nyatanga - Publications 2005 - 2012 here Life-threatening illnesses - Intro A - Z list here from which I need to extract the threatening ones to go here and the limiting ones to go on another page. Then I need to put specific illnesses in the context of unpaid carer involvement. In some case - illness - isn't the right word.
Alzheimer's here Cancer Creutzfeldt-Jakob Disease Wikipedia Diabetes Wikipedia Lupus here Polio Life-limiting/threatening illnesses - research From a doctoral thesis This area of research has been confounded by problems of definition and the semantics of whether conditions are life-threatening or life-limiting. The latest contribution proposed is that a life-threatening illness is one where there is a possibility that a medical intervention might prove successful (even if the treatment poses a threat to life). LLCs are those for which there is currently no available cure and the condition is likely to lead to the child dying prematurely. In practice, the distinction is often arbitrary since an individual child may oscillate between the two definitions especially during acute exacerbations of the illness, for example in children with cystic fibrosis. For the purpose of this thesis a LLC is defined as: Any illness or condition developed in childhood whereby the child is likely to die before adulthood or with a limited expectation of life thereafter. Alternatively, any condition developed in childhood that, without intervention, will cause a child to die prematurely (NHS Executive 1998:5). NHS Executive (1998) Evaluation of a pilot programme for children with life-threatening illnesses. London:HMSO. Not found via Google Scholar Palliative care has been defined for cancer patients as: The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment. page 4 print page 11 dignity 7 times
In the Biblio but not found in the above text: Nyatanga, B. (2005) Adapting to death, dying and bereavement. In Faull, C., Carter, Y. & Daniels, L. (Eds) (2005) Handbook of palliative care. London: Blackwell. Google pdf p98
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Every Child Matters provides a major opportunity for developing services that ensure the health and social care needs of children with complex care needs are met, as Joan Myers explains
Community children’s nursing (CCN) services here in the UK here have evolved in an ad hoc way to respond to local needs, with no national strategic planning or commissioning (RCN 2000). The first few CCN teams in Rotherham in 1949, Birmingham and Paddington in 1954, Southampton in 1969 and Gateshead 1974 were originally developed to care for children with acute infectious diseases or short-term conditions (Muir and Sidey 2000). CCN services grew slowly at first, and by the late 1980s there were 24 teams (Whiting 1988). source links added ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Introduction Text to be revised for the general reader. This page may form the basis of a page introducing carers with no academic background to spirituality and palliative care. The reader will have read an intro to palliative care before embarking on this page. It is envisaged that the reader will be given a choice - a page with the quotation sources and one without. Some links remain to be explored before finalising the page. once the material has been assembled, it will be dealt with progressively with supporting text. There is the possibility of links to other pages on this website.
Spiritual Care and the crisis of values here Spiritual Care at the End of Life: a systematic review of the literature here Dignity and spirituality: do they have a place in contemporary healthcare? here Nyatanga, B. Death and Dying. In Birchenall and Adams, N. (eds). The Nursing Companion. Basingstoke, Palgrave Macmillan 2011 Attitudes to death: a time to pose difficult questions - Brian Nyatanga - British Journal of Community Nursing, Vol. 18, here Iss. 10, 04 Oct 2013, pp 512 One of the emphases of the End of Life Care Strategy (Department of Health, 2008 (link added here) was the need for intensified effort from both the public and professionals to talk openly about death and dying as a process we all go through. source Google Making Sense of Spirituality in Nursing and Health Care Practice: An Interactive Approach The innovations in scientific and medical technology mean health care has become more complex and complicated. There has also been a tremendous change in patient expectation, with individuals being more aware of their rights, challenging decisions and treatments. It would appear that the art and science of 'medicalization' still dominate and guide practice while the spiritual dimension has been relegated from the premier league to the second division. Science is still the predominant force guiding practice and shaping the direction and future of health care. p 24 source when logged into questia.com can also be seen via Amazon - again - here.
Barriers Influencing the Provision of Spiritual Care source when logged into questia.com can also be seen via Google books The need for health care professionals to provide care that does not project their own personal beliefs onto patients or service users is evident. Within my own profession of nursing, two cases of Registered Nurses being brought before the Nursing and Midwifery Conduct Committee (formally the United Kingdom Central Council for Nursing and Midwifery) for professional misconduct have been documented (Castledine 2005, p.745; Cobb 2001, p.74). These cases serve as a stark warning for all health care professionals about the need for self-awareness. p 131 here When reviewing the literature concerning health care professionals' ability to provide spiritual care, the professions are at risk of being dogmatic. Many articles published suggest that health care professionals should be providing spiritual care irrespective of patients' or service users' wishes. This tendency towards being over-prescriptive must be considered when examining the barriers that may prevent health care professionals from providing spiritual care, because such dogmatism maybe unjustified. p 126 here
Dementia and related topics Home page here pagetop here ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Response to "The Long Gray Tunnel: The Day-to-Day Experience of Spouse Caregivers of People with Alzheimer's Disease" Corbin, Juliet M. Rn, DNSc, Scholarly Inquiry for Nursing Practice Vol. 14, No. 1, 2000 The article by Mary O'Donnell adds to our knowledge about Alzheimer's disease and chronic illnesses in general. The significance of the findings lies in the underscoring of the biographical impact of the disease upon the caregiving partner. Caregivers' biographies take on an uncertain future, making a series of twists and turns, shifts and changes as they move along a course set in motion by the progressively debilitating illness of a partner. All that is certain about the future is that the course will be downward. What remains unknown is how far it will go, how fast it will happen, and what daily life will be like in between. Time is a major dimension of the concept of biography (Corbin & Strauss, 1988) and time stands out boldly in O'Donnell's article. Caregivers speak of living in the present, "taking it one day at a time" (Coughlan, 1993). Though meant to explain how caregivers manage to make it through each day, implied in that statement is something even more profound, the biographical ties that hold them to the past. The caregiver can't help but compare the ill partner with the person she or he was in the past. The symbolic meaning of the person and of the couple's relationship transcends time, giving meaning to the present. The attributed meaning takes the form of "fidelity" enacted through caregiving. By safeguarding the dignity and safety of the Alzheimer's person, caregivers preserve aspects of the other's self untouched by illness, thereby weaving the past into the present and future. As the Alzheimer's trajectory moves forward, a real turning point occurs in the couples' biographies. The biographical trajectories of each partner begin to diverge, one trajectory moving upward, while the other moves progressively downward. Out of necessity, the caregiving partner must assume greater responsibility for making decisions and carrying out the daily activities of living. Successful encounters with the outside world, handling the responsibilities at home competently, and the ability to manage the welfare of the ill partner lead to an emerging sense of power and control in the caregiver. For many caregivers this is a period of self-discovery. Growth comes from the realization that while the downward progression of the disease is inevitable, the couple's biographies can be shaped to some extent through careful planning and management. By relying on routines for doing daily tasks some caregivers are able to find time for outside activities, preserving relevant aspects of self (Khurana, 1995). Unfortunately, with Alzheimer's disease, behavior is often erratic, defying the best of plans and disrupting routines. As the future moves closer and closer into the present, the caregiving spouse begins to wonder how much longer she or he can go on before also breaking down (Jepson, McCorkle, Adler, Nuamah, & Lusk, 1999). Though there may be alternative caregiving arrangements available in a community, use of these depends upon a couples' financial resources. Unlike the "pot of gold" at the end of the rainbow, resources, personal and financial, are not unlimited. The caregiver, when making decisions about the use of alternatives, is caught between the present and future. One question, for example, might be: "Home help might ease the burden of care now, but what will happen to me later on?" Becoming a "couple of one" is a significant finding arising out of O'Donnell's research. The concept implies that caregivers become "emotional widow/ers" long before they become actual ones. The reciprocal nature of a couple's relationship is severed by a cruel act of fate. The severing creates a state of biographical limbo in which the caregiver, entangled with the care receiver through a mutual past, is unable to fully live in the present or to plan for a future (Coughlan, 1993). The full biographical impact of this realization triggers a deep sense of loss and grief, alleviated to some extent through the use of humor and faith. According to O'Donnell another relevant finding from her research was the notion of "fidelity." Yamamoto (1994), in a study of caregiving of Alzheimer's patients by Japanese women, speaks about the essential paradox inherent in the caregiving role: on one hand there is the value placed by Japanese society on caregiving, and on the other hand, the difficulties inherent in the role. This paradox permeates the entire caregiving trajectory. Much of the strain that women face as time goes on arises not only from the increasing demands of caregiving and the toll it takes on their well-being but also from the sense of filial duty and emotional attachment they feel for the ill person. Though Yamamoto does not call this phenomenon "fidelity," many of the same elements are there. In Japanese society there is strong societal pressure for a daughter-in-law to take on the caregiver role, but woven into that role is more than a sense of duty or obligation forced by society upon a daughter-in-law. There is also filial attachment and a strong sense of self-worth derived through successful enactment of the caregiving role. In O'Donnell's study, participants felt an attachment to the care receiver, a bond left over from the past. There is affection, sometimes mingled with dislike, for the vulnerable and dependent person the Alzheimer's victim has become in the present. There is a sense of self-worth derived from successfully carrying out the caregiving role and the value placed upon that role by society. There is also a sense of duty or obligation, a vow to fulfill from the past: "to love and to cherish through sickness and in health." "Fidelity" is an apt descriptive term. It captures the essence of what is, in every society, a very complicated phenomenon. The concept of "normalcy" needs clarification (Deatrick, Knafl, & Murphy- Moore, 1999). Repeatedly it is found in the literature on chronic illness. Yet, somehow-in the eyes of this author-it has never appeared to fit. I recall a Thanksgiving spent with a brother and his family some years ago. The brother's wife had amyotrophic lateral sclerosis. There was turkey on the table with all the usual side dishes. Everyone gathered around, talked, laughed, and ate. But the event was anything but "normal." Instead of the sister-in-law directing events and preparing the meal, others took over the tasks. Additionally, there was a sense of heaviness that permeated the day. It was as if everyone was engaged in a game of "mutual pretense" (Glaser & Strauss, 1965). We acted as if everything was normal, when we knew it really wasn't. Enacting symbolically important rituals and routines from the past seems to be biographically important. Normalizing, even if it requires pretense, seems to be a way of connecting the past to the present, however fragile the present might be. O'Donnell was surprised to discover that nurses are all but invisible in the care of Alzheimer's persons and their caregivers. This finding is no surprise to those who are knowledgeable about chronic disease management in this country. There is a tremendous gap in health care delivery, with most of the health care resources directed at acute care. There is little if any support for the chronically ill and their caregivers living in the community unless they develop an acute condition. Nurses can certainly fill that gap in care. But money is not available to support nurses working as independent practitioners in the community. There, they could focus upon the prevention and management of chronic conditions. Until major reforms in health care delivery occur, persons with chronic diseases and their caregivers will continue to struggle through the "long gray tunnel." [Reference] REFERENCES Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Francisco: Jossey-Bass. Coughlan, P. B. (1993). Facing Alzheimer's: Family caregivers speak. New York: Ballantine. Deatrick, J., Knafl, K., & Murphy-Moore, C. (1999). Clarifying the concept of normalization. Image: Journal of Nursing Scholarship 31, 209-214. Glaser, B., & Strauss, A. (1965). Awareness of dying. Chicago: Aldine. Jepson, C., McCorkle, R., Adler, D., Nuamah, I., & Lusk, E. (1999). Effects of home care on caregivers' psychosocial status. Image: Journal of Nursing Scholarship 31(2), 115-120. Khurana, B. (1995). The older spousal caregiver: Paradox and pain of Alzheimer's disease. Unpublished Dissertation, Center for Psychological Studies, San Francisco, CA. Yamamoto, N. (1994). Coming to terms with the reality of having to take care: Experience of Japanese women in caring for the elderly parent (or parent-in-law) with dementia. Unpublished Dissertation, University of California, San Francisco, CA. [Author Affiliation] Juliet M. Corbin, RN, DNSc San Jose State University Oakland, CA source when logged in here ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Response to "The Long Gray Tunnel: The Day-to-Day Experience of Spouse Caregivers of People with Alzheimer's Disease" Corbin, Juliet M. Rn, DNSc, Scholarly Inquiry for Nursing Practice Vol. 14, No. 1, 2000 The article by Mary O'Donnell adds to our knowledge about Alzheimer's disease and chronic illnesses in general. The significance of the findings lies in the underscoring of the biographical impact of the disease upon the caregiving partner. Caregivers' biographies take on an uncertain future, making a series of twists and turns, shifts and changes as they move along a course set in motion by the progressively debilitating illness of a partner. All that is certain about the future is that the course will be downward. What remains unknown is how far it will go, how fast it will happen, and what daily life will be like in between. "matching articles" here pagetop here ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
There is a number of conditions of this kind that can occur together with autistic spectrum disorders. Just a few examples are:
The autistic spectrum disorder requires the type of treatment, education and other services as for any autistic spectrum disorder occurring on its own. Written by Lorna Wing ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Email to B N, 17 March 2014 here as it is liable to updates.
Spirituality and palliative care Spirituality and palliative care via Google In contrast, other books and papers I want to read on line are easy - example - see here. I hope to read these on line but there are difficulties: 2012: Nyatanga, B. Communicating with dying patients: a time to listen more than talk. BJCN. Vol. 17(8) August 2012
2012: Nyatanga, B. In search of alternative ways of dying. Editorial. IJPN Vol. 18(7). July 2012
2012: Nyatanga, B. Inside the mind of a relative at the end of life. BJCN. 17(7). 28th June 2012
BJCN - British Journal of Community Nursing here Searched Questia but only Overviews are given - here. IJPN - International Journal of Palliative Nursing here Occasionally, I strike lucky but with an unrelated item: 2012: Nyatanga, B. Is there room at the Inn: palliative care for homeless people. BJCN. Vol 17(10), October 2012 here
However, many are via paid-for searches as seen here.
2011: Nyatanga, B. In pursuit of cultural competence: service accessibility and acceptability. International Journal of palliative Nursing. 17(5) p212- 215 Abstract Inequalities in end-of-life care provision are well documented and are a priority for organizations both nationally and internationally. It is well recognized that end-of-life care should be provided not just for patients with cancer, and that access to services should be based on need rather than on disease. Of even greater importance, particularly in multicultural societies, is the realization that such services should also be accessible to all, regardless of gender, culture, religion, ethnicity, etc. To achieve this, a degree of cultural sensitivity across care provision sectors is a prerequisite. Services must be acceptable as well as accessible to all, regardless of ethnic or cultural background. source
see the Worcs Hive here more Nyatanga here whence the above Nyatanga B Why is it so difficult to die? Quay Books not in Questia google scholar shows citations only Top of that list is Brian Nyatanga The frequently asked question, ‘Why do minority ethnic groups not access palliative care?’ needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalists disseminating ‘knowledge’. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethnic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours. paid-for source
Wider issues Regulating Healthcare: A Prescription for Improvement? Kieran WalsheSo, given that there seems to be a serious need for performance improvement, why is it difficult to achieve change and improvement in healthcare organizations? Few people would argue that those who work in healthcare organizations — clinical professionals, managers, ancillary workers and others — do not want to do the best they can for patients, or that they are lazy, incompetent and uncaring. In fact, it is much more likely that most people working in healthcare organizations are dedicated, hard-working and conscientious, and that they take great personal and professional pride in the services they provide (Berwick 1989). It is more likely that the problem lies in the highly complex, poorly understood healthcare system — the ways in which healthcare organizations are structured, healthcare processes are set up and managed, and healthcare services are financed and delivered. Improvement, therefore, means changing that system (Berwick 1996). Berwick not included elsewhere unless Control F only searches the one page. p 5 source when logged into questia.com search inside Google Books here
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The Hive - Worcester Oxford textbook of palliative medicine hereSupportive care for the person with dementia hereB Nyatanga heremore books here pagetop here |