‘Living together with dementia’ – Conceptual validation of training programme for family caregivers: Innovative practice

Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carme

doi:10.1177/1471301218762565

Cited by 6 publications

(3 citation statements)

References 8 publications

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“…Consequently, support provision to informal dementia caregivers is either absent or depends on scattered initiatives. In Portugal, there are some good examples of such initiatives, but those usually rely on short and hardly renewable funded projects (Figueiredo et al., 2012; Paúl et al., 2019; Sousa et al., 2018).…”

Section: Introductionmentioning

confidence: 99%

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal

et al. 2020

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Background: Informal caregivers of people with dementia often struggle with several stressors, and their mental and physical health can be negatively affected by providing care. iSupport is an online self-help programme designed by the World Health Organization to provide education, skills training, and support to those caregivers. Purpose: This paper describes the development of an adapted version of iSupport to the Portuguese culture. We present the adaptation process, methods used and results for the country-specific version. Methods: The adaptation of iSupport was operationalised in five steps: needs assessment; content translation by an authorised translator and technical accuracy check by health professionals; cultural adaptation; independent appraisal of contents by an expert panel; and fidelity check by programme authors. Results: Findings indicated the adjustments needed in the original iSupport contents. Overall, 323 text excerpts were proposed to adaptation, comprising semantic and conceptual equivalence of expressions, and adjustments to cultural habits, customs, traditions, local resources, and practices. The expert panel identified the need to reformulate definitions, designations, recommendations, and case studies to fine-tune the original contents to local knowledge and practices. Most adaptations were considered to be in line with the core concepts of the original programme. Conclusions: iSupport is an innovative tool capturing the attention of several organisations around the world interested in translating, adapting, and using the programme. This paper is the first describing the methodological approach for culturally adapting iSupport, constituting an essential resource for those aiming to replicate the process or culturally adapting evidence-based interventions. Tailoring iSupport to the Portuguese context was critical to accommodate the cultural experiences of the target group as well as the knowledge, theoretical approaches, and practices of local professionals. The European-Portuguese version of iSupport introduces the adjustments needed to implement a useful new intervention programme aimed at minimising the psychological distress of Portuguese caregivers.

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Section: Introductionmentioning

confidence: 99%

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal

et al. 2020

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“…The programme 'Living Together With Dementia' is a psychoeducational approach to empower caregivers of people with dementia at an early or moderate stage living at home. This programme and all its characteristics were built and validated in a conceptual fashion by means of a focus group integrative literature review and a Delphi study (7)(8)(9). A randomised controlled trial protocol was developed (10) to address its experimental validation, after which a short-term efficacy study took place.…”

Section: Introductionmentioning

confidence: 99%

‘Living Together With Dementia’: preliminary results of a training programme for family caregivers

Sousa¹,

Sequeira

Ferré‐Grau

et al. 2020

Scandinavian Caring Sciences

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Living Together With Dementia': preliminary results of a training programme for family caregivers The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home-'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.

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“…The programme "Living Together With Dementia" is a psychoeducational approach to empower caregivers of home-dwelling people with early or moderate stage dementia. The entire programme was built and validated within a conceptual framework using a focus group, integrative literature review, and a Delphi study (Sousa et al, 2018(Sousa et al, , 2016a(Sousa et al, , 2016b. A randomised controlled trial protocol was developed to address its experimental validation, after which a short-term efficacy study took place (Sousa et al, 2020).…”

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confidence: 99%

“Living Together with Dementia”—A psychoeducational group programme for family caregivers

Sousa

Sequeira

Ferré-Grau

et al. 2022

Perspect Psychiatric Care

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Purpose: To evaluate the effectiveness of the psychoeducational programme "Living together with dementia" applied to a group of family caregivers of people with dementia. Design and Methods:A quasi-experimental study with pretest and posttest and a 4-month follow-up. Fifteen family caregivers of people with dementia were recruited in a community care unit in northern Portugal.Results: A positive and statistically significant impact on these caregivers' burden was found.Practice Implications: The programme could be an important mechanism to train family caregivers of home-dwelling people with dementia.

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‘Living together with dementia’ – Conceptual validation of training programme for family caregivers: Innovative practice

Cited by 6 publications

References 8 publications

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal

‘Living Together With Dementia’: preliminary results of a training programme for family caregivers

“Living Together with Dementia”—A psychoeducational group programme for family caregivers

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