Carer World notes

 

Dr B Nyatanga publications etc - hidden page                         19 March 2014

 

Preamble

1  Several pages are from Carer World with the purpose of finding out about 
    palliative care and related topics prior to discussion. Other topics are also included.

2   You see various pages on that site and they are assembled here for these reasons:  

  1. When I take a Tablet to the Hive, the Carer World site doesn't appear
  2. This superior website enables content location as in the Contents list
  3. Updates can be linked from the Contents list to specific sections and subsections 
  4. A search of the various pages on the Carer World site can be achieved in one shot
  5. I think the pages are more manageable.  What do you think?
3   CW pages are here as they were on 19 March. They won't be updated.  However, due 
     to problems with this website as seen under  ~~~~ here. the original pages will be 
     retained.  

4    Your publications are spread across various CW  pages and across this page.  Later, they 
     can 
be put in chrono order if needed.


4  The Hive
  1.  I go to the Hive to carry out journal and text book research.  You see that my account is as a Worc resident here.  This poses limitations.
  2.  
  3.   So far, I have public access to SCIE Dementia Gateway here,  
  4.  
  5. Without logging in I can find, for example, Dying well at home here.  However, you are not listed.
  6.    
  7. Research databases here
  8.  
  9. Once logged in at home, if Nyatanga Brian is put in the search box, nothing useful results.
  10.  
  11.  http://www.scie-socialcareonline.org.uk/?q=Nyatanga    no result
  12.  
  13. International Journal of Palliative Nursing gives the result here.
  14.  
  15. Research databases here gives access to Social Care Online here. see 11
  16.  
  17. I want to use the    CINAHL with full text     link at home but nbg here
  18.  
  19. Still logged in at home. British Journal of Community Nursing  result.  One of use on p 1. Nothing on p 2.
  20.  
  21. Advanced search using journal article - Attitudes to death: a time to pose difficult 
    questions  result
         Contents                                                                
From B N's UoW page here

B N  - Publications 2005 - 2012 here

Life-threatening illnesses - Intro here

LLIs & LTIs here

Children’s nursing services here

Spirituality and palliative care here
     
The Long Gray Tunnel here       
           
Email to B N, 17 March 2014 
here  
 
The Hive 
here

Holding page here

Physical conditions . .the brain here




























5   Two journals are well-used on this page.  The stock at the Hive is limited.  

 

BJCN - British Journal of Community Nursing 


 

IJPN - International Journal of Palliative Nursing 

 
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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. 

source

 

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.

source   

 

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 care

Nyatanga, 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

Book . English.
Published London : Quay 2005        source    

The Hive – Three available in Level 3: University Short Loan 610.7361/NYA and Level 3: Main Collection 610.7361/NYA   see source re where

Sign up to be notified when this item becomes available via Amazon.    


 
 

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 here 

 pagetop here

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


B Nyatanga  - Publications 2005 - 2012  
  

 

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 ...



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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 caring

B 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 ...

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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 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

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 acceptability

B 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)  

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

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.,

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  

 

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 sheet

B 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 penumbra

B 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 ...
Cited by 11 Related articles All 9 versions Cite Save                                                                                                                                                                                                     van-osch.com [PDF]

 

Adapting to Death, Dying and Bereavement

B 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 world

B 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 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

2006: Towards a definition of death anxiety. IJPN 12 (9) 410-413 

Towards a definition of death anxiety

B 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 ...
Cited by 4 Related articles All 6 versions Cite Save                                                                                                                                                                                                                  worc.ac.uk [PDF]

 

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 ...

 

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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 ...
 
 
 
 
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 ...

 

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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 ...

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External Responsibilities 

External examiner for Dundee University - masters degree in Palliative care 

 

source  and here

 

pagetop here  for pasting                     B Nyatanga  - Publications 2005 - 2012 here



 see Handbook of Palliative Care 
here

pagetop 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

Arthritis

Aspergers Syndrome

Asthma

Autism

Bipolar Disorder

Bone Cancer

Brain Cancer

Breast Cancer

Brain Tumors

Brain Injury

Cancer

Creutzfeldt-Jakob Disease Wikipedia

Diabetes   Wikipedia

Lupus   here

Polio


On the Carer World site here  Not linked into the page-series yet.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~









 

 

 

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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Community children’s nursing services in the 21st century

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





pagetop here     for pasting    Life-limiting/threatening illnesses - research here


pagetop 
here
 
 

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Spirituality and palliative care             
hidden page                    by email 17 March                   

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.


Spirituality is universal, deeply personal and individual; 

it goes beyond formal notions of ritual or religious 

practice to encompass the unique capacity of each 

individual. It is at the core and essence of who we are, 

that spark which permeates the entire fabric of the 

person and demands that we are all worthy of dignity 

and respect. It transcends intellectual capability, 

elevating the status of all of humanity.

McSherry, W. Smith, J (2012 p 118) Spiritual Care In McSherry, W., McSherry, R., 

Watson, R. (Eds) (2012) Care in Nursing Principles values and skills 

Oxford University Press

more

 





The quotation can be read in context by clicking the pdf link and finding p 25. 

Prof Wilf McSherry.pdfProf Wilf McSherry.pdf
Size : 787.233 Kb 
Type : pdf

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

Wilfred McSherry  Amazon  

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

 Dignity

Fenton’s and Mitchell’s definition  (2002 p 21) 

“Dignity is a state of physical, emotional and spiritual comfort, with each individual valued for his or her uniqueness and his or her individuality celebrated. Dignity is promoted when individuals are enabled to do the best within their capabilities, exercise control, make choices and feel involved in the decision-making that underpins their care.” 

Fenton, E, Mitchell, T. (2002) Growing old with dignity: a concept analysis - Nursing Older People 14 (2) 16 - 21 

 

 

 

    The quotation can be read in context by clicking the pdf      link and finding p 16.   Dignity domains are on p 21.

Prof Wilf McSherry.pdfProf Wilf McSherry.pdf
Size : 787.233 Kb 
Type : pdf

Another Fenton & Mitchell source is here


Another  McSherry source is here.

More for consideration on the Holding-page for online papers and books here 


pagetop here      for pasting      Spirituality and palliative care here     

                                                  Dementia and related topics Home page here     

pagetop here

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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
 
 
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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   for pasting    Response to "The Long Gray Tunnel here

                                              Dementia and related topics Home page here      

pagetop here

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Physical conditions affecting the brain that can be associated with autistic spectrum disorders

 

There is a number of conditions of this kind that can occur together with autistic spectrum disorders. Just a few examples are:


If a child or adult has one of these conditions together with an autistic spectrum disorder, the physical condition should have appropriate treatment. 

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
Consultant Psychiatrist    source         On Carer World site here  The page has not been linked into the series yet.


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Email to B N, 17 March 2014   here as it is liable to updates.
 



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Holding-page for online papers and books

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 
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.

paid-for source

 

Wider issues

Regulating Healthcare: A Prescription for Improvement?   Kieran Walshe

So, 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

 

pagetop here   for pasting     Holding-page for online papers and books here




pagetop here

                 
  
 

The Hive - Worcester


Oxford textbook of palliative medicine here

Supportive care for the person with dementia here

B Nyatanga here

more books 
here

pagetop here