WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC.
Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in Palliative Medicine– EAPC members can access a FREE copy from the EAPC website.
Bert Quintiens introduces the background to the longer article selected as ‘Editor’s Choice’ in the March 2022 issue of Palliative Medicine. Bert is a Doctoral Researcher at the End-Of-Life Care research group in Belgium. His research revolves around a process and outcome evaluation of Belgium’s first Compassionate Community initiatives.
It is increasingly recognised that as well as health services, the public need to get involved to positively influence the health and wellbeing of all people with serious illnesses, their carers, relatives, friends and neighbours. Compassionate Communities is a term which is used to propose a possible answer to achieve this by initiating social initiatives that work together with the public in actions around serious illness, death, dying and bereavement.
Almost three years ago, I was recruited by the End-of-Life Care research group as a doctoral student to research the development and implementation of Belgium’s first Compassionate Community experiments. After submerging myself into literature, as any fresh doctoral student would do, I found a number of articles on Compassionate Communities but was left wondering what their commonalities and differences are. I believed this information could prove useful to developers worldwide, including ourselves at the End-Of-Life Care research group in Belgium, and thus the need for a more systematic review was evident to me and my supervisors.
In our review we screened the relevant peer reviewed literature and identified 22 individual Compassionate Communities. As well as scientific papers, we decided to include information from websites, documents sent by the authors and books. This proved a useful and necessary strategy in that it provided us with insight into specific actions, which are often underreported in the main article itself, such as the extensive documentation on the To Absent Friends festival in Scotland describing its activities and reach.1 Although the first Compassionate Community emerged in Kerala, India, we found most Compassionate Communities to be located in Europe and South-America and in high- or middle-income countries. This may be due to our review restriction of only looking at literature in English or the underfunding of research in low-income countries.
Where sickness and death were once part of everyday life in the developed world, we now see that the public in many countries are estranged from them, and professionalised care is the norm for people facing the end of life. This is why Compassionate Communities put emphasis on creating visibility around the end of life to facilitate the reintegration process of sickness and death and to normalise its existence in society. This is often done by engaging with the general public through different ways, such as adapting or developing end of life policies (influencing policy), using crowd funding for activities relating to death and dying as a means to raise awareness (informing the public), educating family members on basic care for their loved ones (education) or events with prisoners (targeting underserved groups).
We found that only a minority of the Compassionate Community initiatives were evaluated and that the reported results, and what was evaluated, varied greatly. Nonetheless, results are usually in favour of the initiative and, for instance, conclude that people’s social networks increased as a result of their involvement.3,4 This finding is important since people’s social contacts can support them in times of need. If someone is facing an illness and they are helped with basic tasks, such as their neighbours doing their food shopping, this may help prevent an admission to a healthcare institution.
Because of the emotionally loaded topics Compassionate Communities broach, a range of non-traditional data collection techniques seem valuable to capture emotions, feelings of connectedness or friendship. Photovoice, a technique where a person takes pictures around a certain topic and connects this to their personal story, can be one such powerful method to make these more tangible.
Our review suggests shortcomings of existing research on Compassionate Communities. However, we hope it nonetheless inspires developers worldwide and motivates future researchers to add a scientific foundation to the enthusiasm for the compassionate community movement.
READ THE FULL ARTICLE IN PALLIATIVE MEDICINE
This post relates to the longer article ‘Area-Based Compassionate Communities: A systematic integrative review of existing initiatives worldwide’ by Bert Quintiens, Louise D’Eer, Luc Deliens, Lieve Van den Block, Kenneth Chambaere, Liesbeth De Donder, Joachim Cohen and Tinne Smets. Issue published: Palliative Medicine 2022, Vol. 36(3) 422–442.
1. Patterson RM, Peacock RJ, Hazelwood MA. To Absent Friends, a people’s festival of storytelling and remembrance. Bereave Care. 2017 Sep 2;36(3):119–26.
2. Sallnow L, Kumar S, Numpeli M. Home-based palliative care in Kerala, India: the Neighbourhood Network in Palliative Care. Prog Palliat Care. 2010 Feb;18(1):14–7.
3. Abel J, Kingston H, Scally A, Hartnoll J, Hannam G, Thomson-Moore A, et al. Reducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities. Br J Gen Pract. 2018 Nov;68(676):e803–10.
4. Librada Flores SL, Molina EH, Osuna JB, Vargas RM, Vicuña MN. All with You: a new method for developing compassionate communities—experiences in Spain and Latin-America. Ann Palliat Med. 2018 Apr;7(S2):S15–31.
Links and resources
- The EAPC Reference Group on Public Health and Palliative Care have a special EAPC blog series on public health. Read the blogs here
- The End-Of-Life Care research group is hosting the 7th Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’ in Bruges, Belgium, 20 to 23 September 2022. The conference brings together leading innovators, researchers, practitioners, policy makers, representatives of civic society in the public health palliative care approach. Find out more here
- The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.
- Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
- Follow Palliative Medicine on Twitter @palliativemedj
About the author
Bert Quintiens is a researcher at the Vrije Universiteit Brussel and Ghent University and has a background in nursing and clinical trials. If you wish to follow the CAPACITY research trial (developing capacity in palliative care across society) on Twitter, follow @CAPACITY_sbo
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