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Education - Community, Family, Carers

Key Messages

  • People with a life-limiting illness, family, and carers will use many sources of palliative care information. [1-6]
  • Education can be offered in many formats and seek to serve a number of purposes including to increase knowledge, build skills or help a person to cope with care, grief and loss. [1-7]
  • Education programs undertaken by people in palliative care or people caring for someone at the end of their life, have been shown to be beneficial to the carer and to the person they care for. [1-3]
  • Information needs to be trustworthy, accessible, relevant, and presented in a way that it is easy to understand. [3,8,9]
  • Information and communication technology (ICT) and e-learning may be a suitable means for easy-to-understand, high-quality and evidence-based information to be easily available to a significant number of carers looking for information and support. Ideally it would include a way for people to easily identify and select trustworthy information. [10,11]

Background

Carers are an integral part of Australia's health system and are the foundation of our aged, disability, palliative and community care systems. [12,13] Carers may be unprepared and significantly unsupported for the important contributions and demands required to care for a person at the end of their life. [14] Palliative care provision needs to recognise and respond to carers’ needs. [3] The family and the community more broadly may also need information about palliative care and death and dying.

Evidence Summary

The following is a summary of the research which relates to information and education for people with life-limiting conditions, their carers, family members and the general public about life-limiting conditions and palliative care. Education programs are diverse and may be targeted at the person undergoing palliative care or the people who care for them. Programs can be categorised [4,5,15] as:

  • Educational – information and accessing information or services
  • Skill-building – learning skills of care
  • Coping-enhancement – learning ways to manage the challenges of terminal illness.

Training and education programs described in the literature are distinct programs or a component of palliative care or end-of-life care. Information or training can be presented in a variety of formats and in a variety of settings [1-5,7,15] which can make evaluation and comparison difficult. Carers may wish to participate in education or training sessions but may not be able to due to many reasons. [1,3] Home telehealth, e-learning and information and communication technology (ICT) might allow more carers to access training and education but these may require training in the use of the technology and may not be a medium of choice for older people. [7,10,11] Availability of offline support may help to retain carer interest and engagement with online education.

Quality Statement

The included systematic reviews are of variable quality and include research of variable methodological design and rigour. Research in this area is growing in quality and quantity [5] but very little focuses its attention on palliative care for older people.

Page updated 27 May 2021
 

  • References

  • About PubMed Search - Family / Carers

  • About PubMed Search - Community

  1. Farquhar M, Penfold C, Walter FM, Kuhn I, Benson J. What are the key elements of educational interventions for lay carers of patients with advanced disease? A systematic literature search and narrative review of structural components, processes and modes of delivery. J Pain Symptom Manage. 2016 Jul;52(1):117-130.e27. Epub 2013 Apr 23.
  2. Nevis I. Educational intervention in End-of-Life Care: An evidence-based analysis. Ont Health Technol Assess Ser. 2014 Dec 1;14(17):1-30. eCollection 2014.
  3. Reigada C, Pais-Ribeiro JL, Novellas A. Educational programs for family caregivers in palliative care: A literature review. J Palliat Care Med. 2014 Nov 8;4(5):195.
  4. Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011 jun 15;(6):CD007617.
  5. Harding R, List S, Epiphaniou E, Jones H. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med. 2012 Jan;26(1):7-22. Epub 2011 Jul 7.
  6. Mazanec P, Prince-Paul M. Integrating palliative care into active cancer treatment. Semin Oncol Nurs. 2014 Nov;30(4):203-11.
  7. Chi NC, Demiris G, Lewis FM, Walker AJ, Langer SL. Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review. Am J Hosp Palliat Care. 2016 Nov;33(9):894-908. doi: 10.1177/1049909115593938. Epub 2015 Jul 7.
  8. Corn M, Gustafson DH, Harris LM, Kutner JS, McFarren AE, Shad AT. Survey of consumer informatics for palliation and hospice care. Am J Prev Med. 2011 May;40(5 Suppl 2):S173-8.
  9. Hansberry DR, Agarwal N, John ES, John AM, Agarwal P, Reynolds JC, et al. Evaluation of internet-based patient education materials from internal medicine subspecialty organizations: will patients understand them? Intern Emerg Med. 2017 Jan 30. [Epub ahead of print]
  10. Klimova B, Valis M, Kuca K, Masopust J. E-learning as valuable caregivers' support for people with dementia - A systematic review. BMC Health Serv Res. 2019 Nov 1;19(1):781. doi: 10.1186/s12913-019-4641-9.
  11. Lucero RJ, Fehlberg EA, Patel AGM, Bjarnardottir RI, Williams R, Lee K, et al. The effects of information and communication technologies on informal caregivers of persons living with dementia: A systematic review. Alzheimers Dement (N Y). 2018 Dec 31;5:1-12. doi: 10.1016/j.trci.2018.11.003.
  12. Carers Australia. Who is a Carer? [Internet]. 2020 [cited 2021 May 25]. 
  13. Carer Gateway. About carers [Internet]. 2017 [cited 2021 May 25]. 
  14. CareSearch. Carers [Internet]. 2017 [updated 2017 Jan 18; cited 2021 May 25].
  15. Horey D, Street AF, O'Connor M, Peters L, Lee SF. Training and supportive programs for palliative care volunteers in community settings. Cochrane Database Syst Rev. 2015 Jul 20;(7):CD009500.

 

Definition

Health Education that increases the awareness and favourably influences the attitudes and knowledge relating to the improvement of health on a personal or community basis. (Source: MeSh thesaurus)

Search string

("Patient Education as Topic"[Mesh] OR "Health Education"[Majr] OR "Health Promotion"[Majr] OR educational intervention*[ti] OR health promotion[ti] OR ((instruction*[ti] OR learn*[ti] OR teach*[ti] OR education*[ti] OR psychoeducation [ti] OR train*[ti] OR short course*[ti] OR resource*[ti] OR leaflet*[ti] OR pamphlet* [ti] OR mooc*[ti] OR literacy[ti] OR literate[ti] OR inform*[ti] OR knowledge[ti] OR social media[ti] OR Website*[ti] OR Twitter[ti] OR podcast*[ti] OR smartphone*[ti] OR youTube[ti] OR blog*[ti] OR whatsapp[ti] OR facebook[ti] OR mobile device*[ti] OR posters[ti] OR poster[ti] OR text messag*[ti] OR electronic messag*[ti] OR Information dissemination [majr] OR information literacy[majr] OR information seeking behaviour[majr]) AND (famil*[ti] OR patient*[ti] OR carer*[ti] OR care giver*[ti] OR caregiver*[ti] OR careworker*[ti] OR care worker*[ti] OR laycarer*[ti] OR caregivers[majr]))) AND  
 

 

Definition

Health Education that increases the awareness and favorably influences the attitudes and knowledge relating to the improvement of health on a personal or community basis. (Source: MeSh thesaurus) Search

Search string

("Health+Education"[Majr]+OR+"Health+Promotion"[Majr]+OR+educational+intervention*[ti]+OR+health+promotion[ti]+OR+instruction*[ti]+OR+learn*[ti]+OR+teach*[ti]+OR+education*[ti]+OR+psychoeducation[ti]+OR+train*[ti]+OR+short+course*[ti]+OR+leaflet*[ti]+OR+pamphlet*[ti]+OR+mooc*[ti]+OR+literacy[ti]+OR+literate[ti]+OR+informed[ti]+OR+knowledge[ti]+OR+social+media[ti]+OR+Website*[ti]+OR+Twitter[ti]+OR+podcast*[ti]+OR+smartphone*[ti]+OR+youTube[ti]+OR+blog*[ti]+OR+whatsapp[ti]+OR+facebook[ti]+OR+mobile+device*[ti]+OR+posters[ti]+OR+poster[ti]+OR+text+messag*[ti]+OR+forum*[ti]+OR+outreach*[ti]OR+electronic+messag*[ti]+OR+Information+dissemination[majr]+OR+information+literacy[majr]+OR+information+seeking+behaviour[majr])