Literature DB >> 24108538

Compassion in healthcare - lessons from a qualitative study of the end of life care of people with dementia.

Jacqueline Crowther1, Kenneth C M Wilson, Siobhan Horton, Mari Lloyd-Williams.   

Abstract

OBJECTIVES: A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care.
DESIGN: Qualitative in-depth interviews with bereaved informal carers of people with dementia.
SETTING: United Kingdom. PARTICIPANTS: Forty bereaved carers - 31 women and nine men - with an age range of 18-86 years and from wide socioeconomic backgrounds participated. MAIN OUTCOME MEASURES: Experiences of carers of care for person with dementia during last year of life.
RESULTS: The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices.
CONCLUSION: The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings - examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.

Entities:  

Keywords:  compassion; dementia; healthcare; older people

Mesh:

Year:  2013        PMID: 24108538      PMCID: PMC3842856          DOI: 10.1177/0141076813503593

Source DB:  PubMed          Journal:  J R Soc Med        ISSN: 0141-0768            Impact factor:   5.344


  6 in total

Review 1.  Compassion fatigue and nursing work: can we accurately capture the consequences of caring work?

Authors:  Brenda M Sabo
Journal:  Int J Nurs Pract       Date:  2006-06       Impact factor: 2.066

2.  Bearing the weight of responsibility.

Authors:  Christine Hancock; Katy Cooper
Journal:  Nurs Stand       Date:  2011 Jan 5-11

3.  Constructing Grounded Theory: A practical guide through qualitative analysis Kathy Charmaz Constructing Grounded Theory: A practical guide through qualitative analysis Sage 224 £19.99 0761973532 0761973532 [Formula: see text].

Authors: 
Journal:  Nurse Res       Date:  2006-07-01

4.  Dying well with dementia: qualitative examination of end-of-life care.

Authors:  Vanessa Lawrence; Kritika Samsi; Joanna Murray; Danielle Harari; Sube Banerjee
Journal:  Br J Psychiatry       Date:  2011-09-22       Impact factor: 9.319

5.  Funeral directors and bereaved children: beliefs and experiences.

Authors:  Margaret M Mahon
Journal:  Death Stud       Date:  2009-09

Review 6.  Palliative care for dementia--time to think again?

Authors:  J Crowther; K C M Wilson; S Horton; M Lloyd-Williams
Journal:  QJM       Date:  2013-04-04
  6 in total
  12 in total

1.  Response: Compassion in healthcare--lessons from a qualitative study of the end-of-life care of people with dementia.

Authors:  Nathan Davies; Steve Iliffe
Journal:  J R Soc Med       Date:  2014-04       Impact factor: 5.344

Review 2.  Measuring Compassion in Healthcare: A Comprehensive and Critical Review.

Authors:  Shane Sinclair; Lara B Russell; Thomas F Hack; Jane Kondejewski; Richard Sawatzky
Journal:  Patient       Date:  2017-08       Impact factor: 3.883

3.  A UK qualitative study of living and dying with dementia in the last year of life.

Authors:  Jacqueline Crowther; Siobhan Horton; Kenneth Wilson; Mari Lloyd-Williams
Journal:  Palliat Care Soc Pract       Date:  2022-06-21

Review 4.  Compassion in healthcare: an updated scoping review of the literature.

Authors:  Sydney Malenfant; Priya Jaggi; K Alix Hayden; Shane Sinclair
Journal:  BMC Palliat Care       Date:  2022-05-18       Impact factor: 3.113

Review 5.  Compassion: a scoping review of the healthcare literature.

Authors:  Shane Sinclair; Jill M Norris; Shelagh J McConnell; Harvey Max Chochinov; Thomas F Hack; Neil A Hagen; Susan McClement; Shelley Raffin Bouchal
Journal:  BMC Palliat Care       Date:  2016-01-19       Impact factor: 3.234

6.  Sympathy, empathy, and compassion: A grounded theory study of palliative care patients' understandings, experiences, and preferences.

Authors:  Shane Sinclair; Kate Beamer; Thomas F Hack; Susan McClement; Shelley Raffin Bouchal; Harvey M Chochinov; Neil A Hagen
Journal:  Palliat Med       Date:  2016-08-17       Impact factor: 4.762

7.  The facilitators and challenges of dying at home with dementia: A narrative synthesis.

Authors:  Caroline Mogan; Mari Lloyd-Williams; Karen Harrison Dening; Christopher Dowrick
Journal:  Palliat Med       Date:  2018-06       Impact factor: 4.762

8.  Perspectives and experiences of compassion in long-term care facilities within Canada: a qualitative study of patients, family members and health care providers.

Authors:  Lorraine Smith-MacDonald; Lorraine Venturato; Paulette Hunter; Sharon Kaasalainen; Tamara Sussman; Lynn McCleary; Genevieve Thompson; Abigail Wickson-Griffiths; Shane Sinclair
Journal:  BMC Geriatr       Date:  2019-05-06       Impact factor: 3.921

9.  Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies.

Authors:  Marcus Sellars; Olivia Chung; Linda Nolte; Allison Tong; Dimity Pond; Deirdre Fetherstonhaugh; Fran McInerney; Craig Sinclair; Karen M Detering
Journal:  Palliat Med       Date:  2018-11-08       Impact factor: 4.762

10.  Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective.

Authors:  Nuriye Kupeli; Elizabeth L Sampson; Gerard Leavey; Jane Harrington; Sarah Davis; Bridget Candy; Michael King; Irwin Nazareth; Louise Jones; Kirsten Moore
Journal:  BMC Palliat Care       Date:  2019-10-24       Impact factor: 3.234

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