‘You can’t just put somebody in a situation with no armour’. An ethnographic exploration of the training and support needs of homecare workers caring for people living with dementia

Leverton, Monica; Burton, Alexandra; Beresford‐Dent, Jules; Rapaport, Penny; Manthorpe, Jill; Mansour, Hassan; Ceballos, Stefanny Guerra; Downs, Murna; Samus, Quincy M.; Dow, Briony; Lord, Kathryn; Cooper, Claudia

doi:10.1177/14713012211023676

Cited by 20 publications

(31 citation statements)

References 40 publications

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“…This confirm previous findings among care workers from ethnic minority groups in Australia where the lack of dementia education and training, and the negative impact of this situation on their practice and emotional wellbeing (Nichols et al, 2015). Care workers who provide home-based care for clients with dementia usually work in isolation and have to deal with complex care activities with less support from their peers and management (Leverton et al, 2021; Xiao, Harrington, et al, 2021). There is a lack of research evidence on effectiveness (Cooper et al, 2017), especially evidence related to care workers from ethnic minority groups who may have unique learning needs and preferences.…”

Section: Discussionmentioning

confidence: 99%

Cultural adaptation of World Health Organization iSupport for Dementia program for Chinese-Australian caregivers

Xiao

Zhou

et al. 2022

Dementia

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Background Home-based dementia care is common in the Chinese-Australian community. However, dementia education programs for Chinese-Australians in the language of their choice are scarce. The World Health Organization has developed iSupport for Dementia, an online education program for informal caregivers. Cultural adaptation of the program for Chinese-Australian caregivers is an opportunity to address this gap in caregiver support. Aim The aims of the study were (1) to understand stakeholders’ perspectives on the cultural and linguistic appropriateness of the Chinese iSupport for Dementia content and design and (2) to explore factors affecting the future implementation of the Chinese iSupport program in Australia. Methods A qualitative descriptive design was applied to address the aims of the study. Focus group discussions with Chinese-Australian caregivers and community aged care workers were conducted to collect data. Thematic analysis was used to analyse data. Results In total, six focus groups were conducted with 18 Chinese-Australian caregivers and 17 care workers. Six themes were identified and described as follows: (1) appropriateness of the Chinese iSupport content; (2) acceptability of the online Chinese iSupport design; (3) motivations to engage in the iSupport program; (4) desire to interact with peers and professional facilitators; (5) concerns about program accessibility; and (6) the need to extend the iSupport program to care workers. Conclusions Engagement with Chinese-Australian caregivers and care workers will inform further revisions of the Chinese iSupport program contents to ensure the program is culturally congruent to Chinese-Australian caregivers. Factors affecting the implementation of the program identified in the study will be considered in the intervention phase of the program.

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Section: Discussionmentioning

confidence: 99%

Cultural adaptation of World Health Organization iSupport for Dementia program for Chinese-Australian caregivers

Xiao

Zhou

et al. 2022

Dementia

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“…A particular challenge is to develop implementable and sustainable training models, in a setting where staff turnover is high, funding‐limited, time‐pressured (Leverton, 2020 ; Leverton et al., 2021 ) and workloads heavy (Su et al., 2021 ). Participants reflected on how these barriers could be overcome with greater organisational support, for example, through the allocation of protected time for training by employers.…”

Section: Discussionmentioning

confidence: 99%

“…The intervention focuses on peer learning and sharing of experiences, acknowledging and drawing on the homecare workers’ different experiences, and levels of training. We co‐designed the NIDUS‐professional training and support intervention in workshops, with people living with dementia, family carers, homecare workers and managers and health practitioners, using existing interventions (Kales et al., 2015 ; Livingston et al., 2019 ; Low et al., 2015 ; Polacsek et al., 2020 ), our ethnographic studies (Leverton, 2020 ; Leverton et al, 2021 ) and lived experience of co‐designers.…”

Section: Methodsmentioning

confidence: 99%

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS‐professional dementia training intervention for homecare workers during the Covid‐19 pandemic

Kelleher

Lord

Duffy

et al. 2022

Health Social Care Comm

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Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co‐designed, 6‐session dementia training intervention for homecare workers (NIDUS‐professional) was acceptable and feasible. Facilitated training sessions were delivered over 3 months, followed by 3, monthly implementation meetings to embed changes in practice. Two trained and supervised facilitators without clinical qualifications delivered the intervention via group video‐calls during Oct 2020–March 2021 to a group of seven homecare workers from one agency in England. Participants provided qualitative feedback 3‐ and 6‐months post intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Adherence to the intervention and fidelity of delivery were high, indicating that it was acceptable and feasible to deliver in practice. Thirty of a possible 42 (71.4%) group sessions were attended. In our thematic analysis we report one over‐arching theme: ‘ Having time and space to reflect is a rare opportunity’ . Within this we identified four subthemes (Having time to reflect is a rare opportunity; Reflecting with peers enhances learning; Reflection and perspective taking can improve care; Recognising skills and building confidence) through which we explored how participants valued the intervention to discuss their work and learn new skills. Attendance was lower for the implementation sessions, perhaps reflecting participants’ lack of clarity about their purpose. We used our findings to consider how we can maintain positive impacts of the manualised sessions, so that these are translated into tangible, scalable benefits for people living with dementia and the homecare workforce. A randomised feasibility trial is underway.

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“…This initial meeting was planned to allow separate discussions and expression of contrasting views between these stakeholder groups, but both groups stated a preference for a shared location at this meeting, so we did not repeat this arrangement. Workshops drew on observational findings from an earlier stage of the NIDUS programme ( Leverton, 2020 ), existing interventions ( Kales, 2015 ; Livingston et al, 2019a ; Low et al, 2015 ; Polacsek et al, 2020 ) and group members’ expertise. The NIDUS-professional intervention was finalised in September 2020 for delivery in our pilot trial.…”

Section: Methodsmentioning

confidence: 99%

Co-designing complex interventions with people living with dementia and their supporters

et al. 2021

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Background and objectives We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). Research design and methods Over October 2019–March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. Results Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. Discussion and implications We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.

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‘You can’t just put somebody in a situation with no armour’. An ethnographic exploration of the training and support needs of homecare workers caring for people living with dementia

Cited by 20 publications

References 40 publications

Cultural adaptation of World Health Organization iSupport for Dementia program for Chinese-Australian caregivers

Cultural adaptation of World Health Organization iSupport for Dementia program for Chinese-Australian caregivers

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS‐professional dementia training intervention for homecare workers during the Covid‐19 pandemic

Co-designing complex interventions with people living with dementia and their supporters

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