‘It’s Too nice’: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia

Thu Ha Dang; Antonia Thodis; Nalika Ulapane; Josefine Antoniades; Mary Gurgone; Tuan Nguyen; Andrew Gilbert; Nilmini Wickramasinghe; Mathew Varghese; Santosh Loganathan; Joanne Enticott; Duncan Mortimer; Briony Dow; Claudia Cooper; Lily Dongxia Xiao; Bianca Brijnath

doi:10.1080/07317115.2023.2254296

‘It’s Too nice’: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia

Thu Ha Dang, Antonia Thodis, Nalika Ulapane, Josefine Antoniades, Mary Gurgone, Tuan Nguyen, Andrew Gilbert, Nilmini Wickramasinghe, Mathew Varghese, Santosh Loganathan, Joanne Enticott, Duncan Mortimer, Briony Dow, Claudia Cooper, Lily Dongxia Xiao, Bianca Brijnath

College of Nursing and Health Sciences

Research output: Contribution to journal › Article › peer-review

2 Citations (Scopus)

Abstract

OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers’ and service providers’ views on adapting the World Health Organization’s iSupport Lite messages to meet their needs.

METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis.

RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound “too easy”. They wanted messages to dispel notions of carers as “superheroes”, demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources.

CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research.

CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.

Original language	English
Number of pages	14
Journal	Clinical Gerontologist
Early online date	11 Sept 2023
DOIs	https://doi.org/10.1080/07317115.2023.2254296
Publication status	E-pub ahead of print - 11 Sept 2023

Keywords

Australia
carers
cultural adaptation
dementia
digital health
ethnically diverse

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Dang, T. H., Thodis, A., Ulapane, N., Antoniades, J., Gurgone, M., Nguyen, T., Gilbert, A., Wickramasinghe, N., Varghese, M., Loganathan, S., Enticott, J., Mortimer, D., Dow, B., Cooper, C., Xiao, L. D., & Brijnath, B. (2023). ‘It’s Too nice’: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia. Clinical Gerontologist. Advance online publication. https://doi.org/10.1080/07317115.2023.2254296

@article{1ef7b39a1e23459db0f7e87412a3e3e1,

title = "{\textquoteleft}It{\textquoteright}s Too nice{\textquoteright}: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia",

abstract = "OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers{\textquoteright} and service providers{\textquoteright} views on adapting the World Health Organization{\textquoteright}s iSupport Lite messages to meet their needs. METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound “too easy”. They wanted messages to dispel notions of carers as “superheroes”, demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.",

keywords = "Australia, carers, cultural adaptation, dementia, digital health, ethnically diverse",

author = "Dang, {Thu Ha} and Antonia Thodis and Nalika Ulapane and Josefine Antoniades and Mary Gurgone and Tuan Nguyen and Andrew Gilbert and Nilmini Wickramasinghe and Mathew Varghese and Santosh Loganathan and Joanne Enticott and Duncan Mortimer and Briony Dow and Claudia Cooper and Xiao, {Lily Dongxia} and Bianca Brijnath",

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doi = "10.1080/07317115.2023.2254296",

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Dang, TH, Thodis, A, Ulapane, N, Antoniades, J, Gurgone, M, Nguyen, T, Gilbert, A, Wickramasinghe, N, Varghese, M, Loganathan, S, Enticott, J, Mortimer, D, Dow, B, Cooper, C, Xiao, LD & Brijnath, B 2023, '‘It’s Too nice’: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia', Clinical Gerontologist. https://doi.org/10.1080/07317115.2023.2254296

TY - JOUR

T1 - ‘It’s Too nice’

T2 - Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia

AU - Dang, Thu Ha

AU - Thodis, Antonia

AU - Ulapane, Nalika

AU - Antoniades, Josefine

AU - Gurgone, Mary

AU - Nguyen, Tuan

AU - Gilbert, Andrew

AU - Wickramasinghe, Nilmini

AU - Varghese, Mathew

AU - Loganathan, Santosh

AU - Enticott, Joanne

AU - Mortimer, Duncan

AU - Dow, Briony

AU - Cooper, Claudia

AU - Xiao, Lily Dongxia

AU - Brijnath, Bianca

PY - 2023/9/11

Y1 - 2023/9/11

N2 - OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers’ and service providers’ views on adapting the World Health Organization’s iSupport Lite messages to meet their needs. METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound “too easy”. They wanted messages to dispel notions of carers as “superheroes”, demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.

AB - OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers’ and service providers’ views on adapting the World Health Organization’s iSupport Lite messages to meet their needs. METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound “too easy”. They wanted messages to dispel notions of carers as “superheroes”, demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.

KW - Australia

KW - carers

KW - cultural adaptation

KW - dementia

KW - digital health

KW - ethnically diverse

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U2 - 10.1080/07317115.2023.2254296

DO - 10.1080/07317115.2023.2254296

M3 - Article

AN - SCOPUS:85170680214

SN - 0731-7115

JO - Clinical Gerontologist

JF - Clinical Gerontologist

ER -

‘It’s Too nice’: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia

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