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Ethical issues in ethnographic research with older adults living with cognitively impairing conditions: challenges and solutions

Datum
24. Novem­ber Novem­ber 2021 

EASA Age and Gen­er­a­tions net­work (AGENET) Worskhop: Eth­i­cal issues in ethno­graph­ic research with old­er adults liv­ing with cog­ni­tive­ly impair­ing con­di­tions: chal­lenges and solu­tions. 24th Novem­ber (Wednes­day) 16.00 CET/15.00 GMT/10.00 ET, on Zoom.


EASA Age and Gen­er­a­tions net­work (AGENET) Worskhop:

Eth­i­cal issues in ethno­graph­ic research with old­er adults liv­ing with cog­ni­tive­ly impair­ing con­di­tions: chal­lenges and solutions

In prepa­ra­tion for our work­shop on eth­i­cal chal­lenges and solu­tions in ethno­graph­ic research involv­ing old­er adults liv­ing with cog­ni­tive impair­ment, we are invit­ing researchers to sub­mit a 300–400 words descrip­tion of a con­crete eth­i­cal chal­lenge they have encoun­tered dur­ing their own ethno­graph­ic work with this pop­u­la­tion. Select­ed sub­mis­sions will be dis­cussed in a sup­port­ive and col­lab­o­ra­tive peer envi­ron­ment dur­ing the AGENET work­shop on 24th Novem­ber (Wednes­day) 16.00 CET/15.00 GMT/10.00 ET, on Zoom. The work­shop is part of the EASA AGENET Slow Online Con­fer­ence 2021 (pro­gramme to be announced soon!), as well as the AGENET’s larg­er ini­tia­tive launched to sup­port researchers in address­ing eth­i­cal issues they encounter dur­ing ethno­graph­ic work with cog­ni­tive­ly impaired peo­ple, in Europe and beyond.

Sub­mis­sions and inquiries to Cristi­na Dou­glas (r01crd17@abdn.ac.uk) and Bar­bara Pieta (pieta@eth.mpg.de), no lat­er than 5th November.

For more details on the work­shop and sub­mis­sion for­mat, please see below.

on 24th Novem­ber (Wednes­day) 16.00 CET/15.00 GMT/10.00 ET, on Zoom. 
 
 Back­ground and aims

Fol­low­ing a pan­el con­vened dur­ing EASA 2020 that addressed eth­i­cal chal­lenges and solu­tions in ethno­graph­ic research with old­er adults who live with a cog­ni­tive­ly impair­ing con­di­tion (e.g., demen­tia; neu­ro­di­ver­gent con­di­tions), we are organ­is­ing a work­shop on the same top­ic. The aim of this work­shop is to iden­ti­fy and dis­cuss poten­tial eth­i­cal issues that may emerge from such work at any of its stages: pri­or to start­ing field­work; dur­ing field­work; or when writ­ing. Some of these issues can be (but, of course, they aren’t lim­it­ed to): of an organ­i­sa­tion­al nature (e.g., ethics governance/obtaining ethics approvals/sponsorship and what an ethics committee/board may expect from an appli­ca­tion; no organ­i­sa­tion­al ethics review); of legal nature (e.g., legal reg­u­la­tions that restrict the recruit­ment of adults with­out capac­i­ty con­sent); of prac­ti­cal nature (e.g., nego­ti­at­ing terms with gate­keep­ers) etc. We want to learn how nation­al, polit­i­cal, organ­i­sa­tion­al, cul­tur­al etc. con­texts can shape ethics when doing research with old­er peo­ple who live with a cog­ni­tive­ly impair­ing con­di­tion, how these may shape an ethnog­ra­phy – but also how, ide­al­ly, we can use the anthropology’s strength of being con­duct­ed in diverse con­texts to help us reimag­ine ethics and use it as a means of address­ing social justice.

We intend to cre­ate a repos­i­to­ry of case stud­ies of eth­i­cal issues and how they have been addressed. This can be used in the future as a source of inspi­ra­tion and help for fel­low anthropologists/anyone using ethno­graph­ic meth­ods with old­er adults liv­ing with a cog­ni­tive­ly impair­ing con­di­tion. This repos­i­to­ry is part of EASA Age and Gen­er­a­tions Net­work larg­er ini­tia­tive of cre­at­ing a sup­port group and a (dig­i­tal) plat­form for address­ing eth­i­cal issues in research con­duct­ed with cog­ni­tive­ly impaired people.

Work­shop Format

The work­shop will take place online dur­ing the Age and Gen­er­a­tions Net­work Slow Online Con­fer­ence on 24th Novem­ber, Wednes­day, 16.00 CET/ 15.00 GMT/ 10.00 ET. The work­shop will be free and open to all pre-reg­is­tered par­tic­i­pants. Dur­ing the work­shop, we will work in 4–5 break­out groups (depend­ing on the num­ber of atten­dants). Each group will dis­cuss a real sit­u­a­tion that cre­at­ed an eth­i­cal issue and how you would have addressed it. In the sec­ond part of the work­shop, we will reunite in the main room and dis­cuss these in dia­logue with the researcher who pro­posed the situation/ethical issue and their solu­tion. More instruc­tions about the for­mat will be sent with the descrip­tion of the sit­u­a­tions pro­posed for dis­cus­sion, pri­or to workshop.

Dura­tion: approx. 2 hours, includ­ing intro­duc­tion and breaks (45 min­utes break­out groups dis­cus­sion; 50 min­utes whole group discussion).

Call for sub­mis­sions- what we are look­ing for:

We are look­ing for short descrip­tions of sit­u­a­tions that cre­at­ed an eth­i­cal issue which did not nec­es­sar­i­ly have a straight­for­ward solu­tion (could have been addressed in more than just one way). This can be from any stage of your research (pri­or; dur­ing; after field­work). This should be a real sit­u­a­tion that arose dur­ing your research and required a prac­ti­cal, con­crete solu­tion. Please describe this in 300–400 words. When writ­ing your pro­pos­al, please think of the fol­low­ing aspects that may help the work­shop par­tic­i­pants when discussing:

  • In what coun­try is your research organ­i­sa­tion? Are there any reg­u­la­to­ry ethics, both in terms of review and legal frameworks?
  • Where does your research take place? (e.g., coun­try; care home/community/hospice etc.) Were there any reg­u­la­to­ry ethics oth­er than your host research organ­i­sa­tion coun­try that you had to follow?
  • If the eth­i­cal issue arose in a research project that you have con­duct­ed more than 5 years ago, please con­sid­er to spec­i­fy this. We ask this because the reg­u­la­to­ry envi­ron­ment that shapes ethics is in con­stant change and can influ­ence mas­sive­ly what kind of eth­i­cal issues may arise.
  • Be as con­crete and detailed as pos­si­ble about the sit­u­a­tion. Please con­sid­er to add details about the nature of the issue, how/where did it arise etc.
  • Do not include in the pro­pos­al how you have addressed the issue, but please be pre­pared to dis­cuss this after we reunite in the main room. It is impor­tant to under­stand what your solu­tion was and how/if addi­tion­al solu­tions would have been viable.
  • Please make sure you don’t include in your pro­pos­al any iden­ti­fy­ing infor­ma­tion (e.g., name of care homes or organisations).

Please send your pro­pos­al no lat­er than 5th Novem­ber. We will let you know the out­come no lat­er than 10th Novem­ber. 

The pres­ence of the authors of sub­mit­ted case stud­ies will enhance our col­lec­tive learn­ing process dur­ing the work­shop. Thus, the authors’ open par­tic­i­pa­tion is warm­ly encour­aged.  How­ev­er, we will also accept sub­mis­sions from researchers who wish that their names are not identified.

About AGENET

The Age and Gen­er­a­tions Net­work (AGENET) is part of the Euro­pean Asso­ci­a­tion of Social Anthro­pol­o­gists (EASA). We bring togeth­er social anthro­pol­o­gists inter­est­ed in life-course per­spec­tives, mul­ti­/in­ter-gen­er­a­tional rela­tion­ships, late-life and/or oth­er life phas­es. More infor­ma­tion on the net­work and how to join: https://www.easaonline.org/networks/agenet/

Many thanks and we very much look­ing for­ward to meet­ing you all at the AgeNet workshop!

Cristi­na Dou­glas (Uni­ver­si­ty of Aberdeen), Maria Ves­peri (New Col­lege of Flori­da), Matthew Lar­iv­iere (Bris­tol Uni­ver­si­ty, AGENET Con­venor), Bar­bara Pieta (Max Planck Insti­tute for Social Anthro­pol­o­gy, AGENET Convenor)