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Sources used

The following references were consulted in the development of this information.

On this page:

Day to day caring

Dougherty, Lisa and Lister, Sarah (eds). The Royal Marsden Hospital Manual of Clinical Nursing Procedures. 8th Edition, July 2011. http://eu.wiley.com/WileyCDA/WileyTitle/productCd-144433509X.html   (accessed 21 August 2014). 

Dying Matters. Being with someone when they die. http://www.dyingmatters.org/page/being-someone-when-they-die   (accessed 21 August 2014).

Macmillan Cancer Support. Worry, anxiety and panic attacks. http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Emotionaleffects/Worryanxietypanicattacks.aspx   (accessed 6 August 2014).

NHS Choices. Carer tips http://www.nhs.uk/Tools/Pages/Carer-tips.aspx   (accessed 21 August 2014).

NHS Choices. Food and diet. http://www.nhs.uk/LiveWell/Goodfood/Pages/Goodfoodhome.aspx   (accessed 6 August 2014).

NHS Choices. Practical support. Health and hygiene.  http://www.nhs.uk/carersdirect/guide/practicalsupport/pages/hygiene.aspx   (accessed 21 August 2014).

Helping someone cope with their illness

Anastasios, A. Dying to Know. October 2007.

Banns, Gina. End-of-life needs and attitudes. Oxford Strategic Marketing and Marie Curie. June 2013.

Marie Curie Priority Setting Partnership. Information and advice needs for patients and carers emerging from palliative and end of life care. May 2014.

Marie Curie and Oxford Strategic Marketing. An Exploration of Unmet Needs in End of Life Care: Patients and Carers

Carers UK forum. Tips and practical advice thread. http://www.carersuk.org/forum/support-and-advice/tips-and-practical-advice   (accessed June 2014).

Carers Trust website.  http://www.carers.org   (accessed 4 August 2014).

GOV.UK website. http://www.gov.uk   (accessed 4 August 2014).

Pinterest. How to be supportive. http://www.pinterest.com/neuronula/how-to-be-supportive   (accessed June 2014).

Getting support

Care Information Scotland website http://www.careinfoscotland.co.uk   (accessed August 2014).

Carers Northern Ireland website http://www.carersuk.org/northernireland   (accessed 28 August 2014).

Carers UK. Planning for emergencies. http://www.carersuk.org/help-and-advice/practical-support/planning-for-emergencies   (accessed 13 August 2014).

Carers UK. Taking a break http://www.carersuk.org/help-and-advice/health/looking-after-your-health/taking-a-break   (accessed June 2014).

Carers UK. Help and advice section http://www.carersuk.org/help-and-advice   (accessed 26 June 2014).

Carers Wales website. http://www.carersuk.org/wales   (accessed 28 August 2014).

Health and social care in Northern Ireland website http://www.hscni.net/index.php?link=services   (accessed 28 August 2014).

Macmillan Cancer Support. Information for carers http://be.macmillan.org.uk/be/s-330-information-for-carers.aspx   (accessed 18 August 2014).

NHS Carers Direct. Help with emergency planning. http://www.nhs.uk/CarersDirect/guide/emergencies/Pages/Helpwithemergencyplanning.aspx   (accessed 13 August 2014).

NHS Carers Direct. Carer’s Assessments. http://www.nhs.uk/CarersDirect/guide/assessments/Pages/Carersassessments.aspx. (accessed June 2014).

NHS Carers Direct. Time off http://www.nhs.uk/CarersDirect/yourself/timeoff/Pages/Overview.aspxhttp://www.nhs.uk/CarersDirect (accessed June 2014).

NHS Choices. The eatwell plate. http://www.nhs.uk/Livewell/Goodfood/Pages/eatwell-plate.aspx (accessed 26 June 2014).

NHS Choices. Health and fitness http://www.nhs.uk/livewell/fitness/Pages/Fitnesshome.aspx (accessed 26 June 2014).

NHS Choices. Insomnia http://www.nhs.uk/LiveWell/Insomnia/Pages/insomniahome.aspx (accessed 26 June 2014).

NI Direct. Caring and support services http://www.nidirect.gov.uk/index/information-and-services/caring-for-someone/caring-and-support-services.htm   (accessed 28 August 2014).

NI Direct. Assessments for carers http://www.nidirect.gov.uk/assessments-for-carers   (accessed 5 August 2014).

Preparing for the end of life

Anderson M, Faull C. Spirituality in palliative care. Handbook of palliative care. Third edition. Hoboken, New Jersey: John Wiley & Sons. p 295 – 313. ISBN: 978-1-118-06559-4.

Arber S, Venn S. Caregiving at night: Understanding the impact on carers. Journal of Aging Studies 2011; 25(2): 155-165.

Boyd K, Murray SA. Recognising and managing key transitions in end of life care. BMJ. 2010 Sep 16;341:c4863 http://www.bmj.com/content/341/bmj.c4863   (accessed July 2014).  

Brown MA, Sampson EL, Jones L, Barron AM. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med. 2013 May;27(5):389-400. 

Cancer Research UK. 2014. What happens in the final days of life. http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/dying/what-happens-in-the-final-days-of-life   (accessed June 2014).

Carers UK. Find support in your area http://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/finding-homecare   (accessed 15 August 2014).

Chirco, N., Dunn, K. S., & Robinson, S. G The trajectory of terminal delirium at the end of life. American journal of hospice & palliative care, 2010; 28(1), 44-51.

College of Occupational Therapists and NHS National End of Life Care Programme. The route to success in end of life care – achieving quality for occupational therapy. www.nhsiq.nhs.uk/download.ashx?mid=8186&nid=8185   (accessed July 2014).

Department of Health. Fast track pathway tool for NHS Continuing Healthcare (pdf). November 2012 (Revised) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf   (accessed July 2014).

Dev R, Dalal S, Bruera E. Is there a role for parenteral nutrition or hydration at the end of life? Curr Opin Support Palliat Care 2012; 6(3):365-70.

Dying Matters. Being with someone when they die http://www.dyingmatters.org/page/being-someone-when-they-die   (accessed 18 August 2014).

Faull C, Nicholson A. Terminal care and dying. In: Faull C, de Caestecker C, Nicholson A, Black F (eds). Handbook of palliative care. Third edition. Hoboken, New Jersey: John Wiley & Sons. p 295 – 313. ISBN: 978-1-118-06559-4.

General Medical Council. Treatment and care decisions towards the end of life: good practice in decision making (pdf). 2010 http://www.gmc-uk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-_English_0414.pdf   (accessed June 2014).

Help the Hospices.  What is hospice care? Answering questions about hospice care (pdf). 2011. http://www.helpthehospices.org.uk/media-centre/what-is-hospice-care   (accessed July 2014).

Kehl KA, Kowalkowski JA. A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life. Am J Hosp Palliat Care 2013;30(6):601-16.

Money Advice Service. Are you eligible for NHS Continuing Care funding? https://www.moneyadviceservice.org.uk/en/articles/are-you-eligible-for-nhs-continuing-care-funding   (accessed July 2014).

Murray SA, Kendall M, Boyd K et al. Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews. BMJ. 2010 Jun 9;340:c2581.

Murtagh, FEM, Bausewein C, Petkova H et al. Understanding place of death for patients with non-malignant conditions: A systematic literature review (pdf). London: National Institute for Health Research, Service Delivery & Organisation. 2012. http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0006/85083/ES-08-1813-257.pdf   (accessed July 2014).

NHS Careers. Chaplains http://www.nhscareers.nhs.uk/explore-by-career/wider-healthcare-team/careers-in-the-wider-healthcare-team/corporate-services/chaplain   (accessed July 2014).

NHS Careers. Healthcare assistant http://www.nhscareers.nhs.uk/explore-by-career/wider-healthcare-team/careers-in-the-wider-healthcare-team/clinical-support-staff/healthcare-assistant   (accessed July 2014).

NHS Carers Direct. Spirituality. http://www.nhs.uk/CarersDirect/yourself/takingcareofyourself/Pages/spirituality.aspx   (accessed 15 August 2014).

NHS Choices. The National Council for Palliative Care, the University of Nottingham, NHS National End of Life Care Programme. Planning for your future care: A guide (pdf). 2009. http://www.nhs.uk/planners/end-of-life-care/documents/planning-for-your-future-care.pdf    (accessed July 2014).

NHS Choices. End of life care: Planning ahead http://www.nhs.uk/Planners/end-of-life-care/Pages/planning-ahead.aspx   (accessed 15 August 2014).

Penrod J, Hupcey JE, Shipley PZ, et al. A model of caregiving through the end of life: seeking normal. West J Nurs Res. 2012 Mar;34(2):174-93 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746543/   (accessed July 2014).

Royal College of Nursing. Palliative care nurse (fact sheet 27) (pdf). 2011. http://www.rcn.org.uk/downloads/support_for_you/member_support_services_-_factsheets/career_guidance_-_profiles/Palliative_care.pdf   (accessed July 2014).

Social Care Institute for Excellence. Dying well at home: Research evidence. 2013. http://www.scie.org.uk/publications/guides/guide48/files/guide48_researchevidence.pdf    (accessed July 2014).

Social Care Institute for Excellence. Dying well at home – Coordinated care: Health and social care and housing. SCIE guide 48. 2013. http://www.scie.org.uk/publications/guides/guide48/coordinatedcare.asp   (accessed July 2014).

Social Care Institute for Excellence. Meeting carers’ needs. Dying well at home: the case for integrated working. SCIE guide 48. 2013. http://www.scie.org.uk/publications/guides/guide48/meetingcarersneeds.asp   (accessed July 2014).

When your caring role ends

The National Council for Palliative Care. Life after death: Six steps to improve support in bereavement. January 2014.

The National Council for Palliative Care. Caring to the end. 2014. 

Carers UK. When caring ends http://www.carersuk.org/help-and-advice/practical-support/when-caring-ends   (accessed 3 July 2014).

Carers UK. Rebuilding your life http://www.carersuk.org/help-and-advice/practical-support/when-caring-ends/rebuilding-your-life   (accessed 27 August 2014). 

National Council for Voluntary Organisations. I want to volunteer http://www.ncvo.org.uk/ncvo-volunteering/i-want-to-volunteer   (accessed 27 August 2014).

Your feelings

Anastasios, Andrew. ‘Dying to Know’. October 2007.

Banns, Gina. End-of-life needs and attitudes: a review. Oxford Strategic Marketing and Marie Curie. June 2013.

Carers UK [http://www.carersuk.org  ] (accessed 23 June 2014).

Hospicenet [http://www.hospicenet.org  ] (accessed 23 June 2014).

Marie Curie and Oxford Strategic Marketing. An Exploration of Unmet Needs in End of Life Care: Patients and Carers

Priority Setting Partnership, Marie Curie. Information and advice needs for patients and carers emerging from palliative and end of life care. May 2014.

Social Care Institute for Excellence. A terminal diagnosis: the carers' perspective [http://beta.scie-socialcareonline.org.uk/a-terminal-diagnosis-the-carers-perspective/r/a1CG0000000GghvMAC  ] (accessed 9 July 2014).

Social Care Institute for Excellence. Committed to carers: supporting carers of people at the end of life [http://beta.scie-socialcareonline.org.uk/committed-to-carers-supporting-carers-of-people-at-the-end-of-life/r/a11G000000180giIAA  ] (accessed 9 July 2014).

Supportline website [http://www.supportline.org.uk  ] (accessed 8 July 2014).

Terminal Illness website [http://www.terminalillness.co.uk  ] (accessed 8 July 2014).

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