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Education - Community, Family, Carers - Synthesis

Introduction

Family and friends play a pivotal role in enabling an older person with a life-limiting illness to continue to live at home. Most carers are unprepared for their caring role and in order to provide optimum care to their loved one, they depend on adequate information, education and support to enhance knowledge, build skills and protect their own health and coping abilities. [1,2] 

Quality Statement

The included systematic reviews relate to interventions and education for people with advanced disease (particularly cancer) or people receiving palliative care and their carers. [1-10] Many reviews do not specifically relate to education of older carers or of carers in the context of community aged care. [1-3,6,7,9,10] Four reviews focussed on dementia. [5,11-13] The proportion of older people in the study population was only sometimes reported. The reviews are of variable quality and include research of variable quality and methodological rigour. One lower-level paper was included for context. [14]

Many of the reviews note that the diversity of the interventions and the way they were evaluated make it difficult to draw conclusions with confidence and to be able to generalise the findings. [1-3,6,8-10] Many of the studies suffer from small sample size and attrition because of the inevitable trajectory of palliative care and advanced disease. [1-3,6,8-10] 

Many papers review studies with a variety of methodologies: randomised-control trials (RCTs), comparative trails or quasi-experimental studies. Only one review pooled data in a meta-analysis. [8] One Cochrane review investigating training and support for palliative care volunteers in community settings noted the absence of any studies using control comparisons (control groups or control sites). [7] One paper [10] reviewed and discussed the merits of different study designs relating to carers or people receiving palliative care. The authors propose two study designs as ways to allow the enhanced recruitment and feasibility without compromising the validity of the results.

Evidence Synthesis

Interventions for carers and people in advanced disease, cancer, and palliative care

Chi et al. [1] reviewed behavioural and educational interventions to support carers looking after people with a terminal illness. Although this study did not set out to investigate care for or by older people, the majority of the research was related to carers aged 55-61 years, many looking after people with advanced dementia. This review focussed on educational interventions, psycho-educational (education plus counselling and support) interventions and cognitive behavioural therapy. All showed a positive effect on the carers’ knowledge, attitudes, and coping skills.

Candy et al. [3] and Harding et al. [2] investigated the ways that informal carers can be supported. Harding et al. [2] updated previous research and noted that there was an increase in quality and quantity of research in this area. These reviews plus that of Chi et al. [1] included many of the same studies. The systematic review by Candy et al. [3] is of high-quality and concluded that interventions for the carer helped in the short-term to cope with the caring role. The variability in type and delivery of programs and the small scale of the research, limited the conclusions that could be drawn and the generalisation of the results. 

Farquhar et al. [6] reviewed the key elements of the educational interventions available for carers looking after people with advanced disease (most often cancer). Most were conducted by health professional(s) with the majority of these delivered face-to-face and to individuals (rather than to groups), and most included an element of problem-solving. Half the interventions (24 of 49) were targeted at the person and their carers/family members; the others were targeted specifically at the person or family members only. All used written materials (flipcharts, brochures), some used audio-visual materials (slideshow, pre-recorded video, CD-ROM, DVD, audio tapes. Most programs covered multiple topics and were run as a series and were targeted to the person receiving care and their carers rather than just carers. Some of the studies recorded the reasons why people do not participate or continue with the education sessions and this may be useful in planning education sessions.

Nevis [8] in a high-quality systematic review concluded that educational interventions for carers and the person they care for significantly improved carer quality of life and the person’s  symptom control. This review was the only one to included meta-analysis of the data.

Education – building knowledge

Information may be readily available particularly for those who are computer-literate, but it is often difficult for people to easily access and recognise trustworthy information. [4] It is often difficult to find information which is appropriate to a person’s needs and disposition. [4] Information available online should be written in simple language so that it can be understood by the majority of people and at their varying health literacy levels. [14] Older people may require extra help in accessing online information.

Klimova et al. [11] investigated e-learning for informal caregivers of older people with dementia (although not specific to palliative care). eLearning was associated with improved confidence, a reduction in perceived stress and increased empathy and understanding. Lucero et al. 2019 examined the value of information and communication technology (ICT) interventions (telephone, computer, and video) for caregivers who support people with dementia. [12] Strong evidence supported the positive impact of standalone telephone interventions or in conjunction with other ICT interventions on depression, burden and anxiety. However, this study highlighted the limited evidence for diverse population subgroups and was not specific to older people or people with palliative care needs.

Access to education

Carers may wish to participate in education or training sessions but may not be able to due to many reasons associated with the demands of caring such as lack of respite care, living in remote locations, or reluctance to join a group. [6,9,13] Home telehealth, e-learning and ICT may allow more carers to access training and education. [1] However, these technologies may require user training and may not be a medium of choice for older people. [11,12] Online learning that is carer led, with limited offline support, has been shown to have high attrition rates. [5]

Evidence Gaps

  • The short-term and long-term effects of providing end-of-life care as an older person is not well understood.
  • It is unclear as to whether carers feel able and confident to refuse the role of a carer.
  • The contribution of death literacy to the community’s capacity to care is, as yet untested.
  • What simple tools or short questionnaires are useful in evaluating a carer’s health literacy? Will these easily help the access to appropriate information or education?
  • To what extent are online or blended education resources used by older people? Can these be produced to particularly help older carers or older people in palliative care?
  • Is there sufficient understanding of the cost and benefits of delivering education to carers / older carers?
  • Can telehealth play an important role in supporting older carers or people caring for older people? Telehealth may allow easier access to information and education resources at a low cost but does this suit older carers?
  • Partially randomised patient-preference trials’ and ‘fast-track’ RCTs were suggested by Schildmann and Higginson [10] as alternative study designs (to ‘classic’ RCTs) to maintain validity whilst enhancing recruitment and generalisability of results. Their feasibility and usefulness could be used to evaluate the effectiveness of carer interventions for older people.
  • There is a lack of evidence on how to improve QoL in home care provision.

Page updated 31 May 2021

  • References

  1. 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. Epub 2015 Jul 7.
  2. 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.
  3. 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.
  4. 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.
  5. Cunningham N, Cowie J, Watchman K, Methven K. Understanding the training and education needs of homecare workers supporting people with dementia and cancer: A systematic review of reviews. Dementia (London). 2020 Nov;19(8):2780-2803. doi: 10.1177/1471301219859781. Epub 2019 Jul 4.
  6. 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;52(1):117-30.e27.
  7. 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.
  8. 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.
  9. Reigada C, Pais-Ribeiro JL, Novellas A. Educational programs for family caregivers in palliative care: A literature review. J Palliat Care Med. 2014;4:195.
  10. Schildmann EK, Higginson IJ. Evaluating psycho-educational interventions for informal carers of patients receiving cancer care or palliative care: strengths and limitations of different study designs. Palliat Med. 2011 Jun;25(4):345-56. Epub 2011 Jan 12.
  11. 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.
  12. Lucero RJ, Fehlberg EA, Patel AGM, Bjarnardottir RI, Williams R, Lee K, Ansell M, Bakken S, Luchsinger JA, Mittelman M. 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. 
  13. Egan KJ, Pinto-Bruno ÁC, Bighelli I, Berg-Weger M, van Straten A, Albanese E, Pot AM. Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review. J Am Med Dir Assoc. 2018 Mar;19(3):200-206.e1. doi: 10.1016/j.jamda.2017.10.023. Epub 2018 Jan 4.
  14. 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 Jun;12(4):535-543.