Translation and cultural adaptation of the iSupport for caregivers (WHO) in Brazil

Presenting / Lead author: Deborah Oliveira | oliveira.deborah@unifesp.br | @DrDebs_Oliveira

Co-authors: Alessandro Ferrari Jacinto; Aline Cristina Martins Gratao; Ana Carolina Ottaviani; Camila Rafael Ferreira; Diana Quirino Monteiro; Elizabeth Joan Barham; Fabiana de Souza
Orlandi; Keila Cristianne Trindade da Cruz; Larissa Correa; Marisa Zazzeta; Sofia Cristina Iost Pavarini

Table 1. Characteristics of participants - Table 2. Characteristics of participants – healthcare

Background and aim family carers (n=24) professionals (n=24) Results
• Most people with dementia are living in low- and middle-income Characteristics n (%) • Overall, all participants had positive views of the iSupport material and found the material clearly
Characteristics n (%)
countries and are being cared for at home by their families. written and culturally relevant (see speech balloons and examples below).
Sex Age (years) Mean (SD) = 34.1(8.9)
• Public health initiatives to support family carers are still scarce. 20 – 39 18 (75%) • Researchers, translators, carers, and professionals helped refine the text to make it clearer and
Female 24 (100%)
40 – 59 6 (25.0%) more tuned to the Brazilian context.
• We aimed to translate and culturally adapt the iSupport Age
programme from World Health Organization (WHO) for use by Sex   • A few changes were suggested with regards to terminology and examples given in the modules to
Range 25-72 Female 17 (70.8%)
carers of people with dementia in Brazil. better fit the Brazilian culture and health systems, and links to relevant web pages of the Brazilian
x
Mean (SD) 52.9 (16.2) Ethnicity   Alzheimer Association were included.
20 to 39 2 (8.3%) White 13 (54.2%)
• Although further information could be added, the existing material was seen as sufficient.
x 40 to 59 10 (41.7%) Black 5 (20.8%)
x
Methods x ≥60 12 (50.0%) Others 4 (25.0%)
Background training  Examples of suggestions and comments from participants
• The translation of the programme from English to Brazilian Ethnicity
Family carers Professionals
Portuguese was conducted by a professional translator. White 13 (54.2%) Nursing 7 (18.4%)
Module 2: ‘Improve behavioural issues’ Module 1: ‘Dementia is a disease’ was changed to ‘Dementia is a syndrome’
Black 4 (16.7%) Occupational therapist 5 (13.2%) - ‘Slow down issues’ (caused by brain diseases...)
• The translated content was discussed and checked for Nursing assistant 3 (7.9%)
relevance, clarity and accuracy by a multidisciplinary team of Mixed-race 6 (25%) Module 4: ‘Belt’ - ‘Elastic or Velcro’ Module 1: Remove the sentence: “In some countries or areas it is not possible to
Indigenous 1 (4.2%) Physiotherapist 3 (7.9%) visit a medical doctor, or it is very expensive. If you think [person] may have
researchers in Brazil. Nutritionist 2 (5.3%) Module 5: Mother vs. Mother-in-law: we
do not usually call our mothers-in-law dementia, you can use this program iSupport to help you.”
• 16 focus groups (n=48) were conducted with family carers of Others 8 (33.3%) ‘mother’ in Brazil. Module 4: Add the sentence: “consult a professional in the field, such as a
people with dementia (n=24) and health care (n=24) Length of time (years) working nutritionist.”
professionals (Tables 1 and 2) in Sao Carlos-SP, Brasilia-DF Past carer for mother with dementia in the area (n=22) 
and Sao Lourenco-MG (see map). I’ve read everything with attention. I loved ≤1 5 (20.8%)
Member/Volunteer of the 2 to 5 8 (33.3%) Examples of suggestions for content inclusion
• Discussions aimed to explore whether the content of the the content. I travelled back in time […] I
≥6 9 (37.5%) Family carers Professionals
translated version of iSupport was both clear and relevant to visited all the modules [of iSupport]. Alzheimer’s Association Legal aspects / Advanced care planning (respecting wishes) Ageing and cognition / Ageism
Surely, if I had had this great resource I loved the material! Surely this Trained on dementia and/or
the needs of carers of people with dementia in Brazil. care for older people Encouraging the use support groups Abuse against older people
when everything [caregiving/dementia] will be well used [by carers]
• Representatives of the Brazilian Ministry of Health and Yes 16 (66.7%) End-of-life and dying / How to handle finances / More information on bathing (e.g.
started, I would have acted very differently and will meet our objectives. Practical tips about the day-to-day care
Alzheimer’s Associations also contributed to this. embarrassment, aggression, etc.)
in many situations back then. This will also stimulate the Place of work (n=23)  
Homecare agencies 8 (33.3%) Urinary and respiratory systems / Handling bedbound individuals (correct posture to Ways to prevent dysphagia (e.g.
Congratulations to you [researcher] and creation of further resources avoid harm) / Oral care and care with dentures positioning, diet)
your team for such beautiful work and my [in the future] […] Many Care homes 7 (29.2%)
Medical routine: preventing illnesses, routine exams, when to go to the ER, possible Briefly mention something about enteral
eternal gratitude for allowing me to share congratulations! Hospital 4 (16.6%) accidents such as falls, etc) feeding
my experiences. Therapeutic centre 3 (12.5%) Complications: symptoms & prevention (UTIs, pneumonia, etc.)
Academia 1 (4.2%) Vaccination / Falls prevention and physical activity

Webpages
Conclusion
iSupport webpages: : www.isupportforcaregivers.org | https://www.isupportparacuidadores.ufscar.br/ • The translation and cultural adaptation of iSupport included inputs from four categories of participants and showed that
the programme was considered easy to understand and culturally relevant for carers of people with dementia in Brazil.
• The next step will be to pilot the translated and culturally adapted programme with carers in Brazil to establish its
Funding agencies: Partner institutions: efficacy and usability.