The views of carers, people living with dementia and healthcare practitioners about the value of online information and peer support

White, Caroline; Wolverson, Emma; Dunn, Rosie; Zafeiridi, Evi

doi:10.1332/239788220x15934528490504

Cited by 4 publications

(5 citation statements)

References 53 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Participants in Boots et al's (2017) study made limited use of an online carers' forum, and were constrained by feelings of disloyalty in sharing information about their partners and a wish to avoid others' accounts of 'misery'; a reluctance to hear about other people's problems has been documented elsewhere (Davies et al, 2019;McKechnie et al, 2014;Stokes et al, 2014). Although not evident here, some people with dementia have also highlighted the need for separate spaces away from carers 'ranting' (Rodriquez, 2013;White et al, 2020). Further exploration of the optimal balance between shared and separate resources or spaces is therefore required.…”

Section: Discussionmentioning

confidence: 87%

“…Early research with users highlighted the importance of diverse content, in which issues such as dementia and caring were considered alongside 'lighter' material (White et al, 2020); therefore, both formal and informal content was created. Some participants expressed preferences for serious or lighter material; however, many appreciated the range and balance of content:…”

Section: Providing Content Which Is Balanced In Tonementioning

confidence: 99%

“…Although older people (including many people with dementia and carers) are often identified as digitally excluded, internet use among older adults is increasing (Hunsaker & Hargittai, 2018). There is greater diversity in individuals' experiences of using digital technologies than is often acknowledged; many have experience of using these for work or leisure, others are keen to learn new skills and recognise the importance of engaging with new technologies (Allen et al, 2020;Betts et al, 2019;White et al, 2020). This is evidenced in people with dementia and carers' use of online fora, social media and blogs to share their experiences, advice and information, create new support networks, raise awareness and engage in dementia activism (Hammar et al, 2021;Kannaley et al, 2019;McKechnie et al, 2014;McLennon et al, 2019;Rodriquez, 2013;Talbot 2020).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs

et al. 2021

Self Cite

View full text Add to dashboard Cite

Background: Current policy emphasises the role of digital technologies in facilitating the management of long-term conditions. While digital resources have been developed for carers, there has been little attention to their development for people with dementia. The Caregiverspro-MMD website was developed as a joint resource for people with dementia and carers, delivering access to information, informal content, games and peer support. Research Design and Methods: This study explored the experiences of dyads consisting of people with dementia and carers of using the website. Interviews and focus groups were conducted with 43 participants. Findings: Thematic analysis identified 10 subthemes grouped under three superordinate themes which highlight participants’ experiences of and responses to the website functions; important aspects of the website design and delivery; and barriers to use. Discussion: Findings highlight the value of a credible information source which negated the need for arduous online searches, the pleasure associated with playing games and interacting with others online. However, participants were reluctant to share personal information online, preferring to create ‘informal content’ which celebrated everyday life, and were reluctant to ‘friend’ people online who they had not met in person. The importance of training and support to use the website was highlighted. Health problems, lack of interest or difficulties using technology, and time were all identified as barriers to use.

show abstract

Section: Discussionmentioning

confidence: 87%

Section: Providing Content Which Is Balanced In Tonementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs

et al. 2021

Self Cite

View full text Add to dashboard Cite

show abstract

“…These challenges included, but were not limited to, caregiving demands, especially for those in the workforce, technical issues, and program design. In contrast to previous studies, our review did not identify caregivers’ concerns about the privacy and confidentiality of their information [ 54 , 55 ]. We found that although caregivers, especially those living in remote areas, perceived web-based psychoeducation programs as flexible, caregiving demands precluded many working caregivers from participating.…”

Section: Discussionmentioning

confidence: 99%

The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis

Yu¹,

Xiao²,

Ullah³

et al. 2023

JMIR Aging

View full text Add to dashboard Cite

Background Informal caregivers of people living with dementia experience a higher level of physical and mental stress compared with other types of caregivers. Psychoeducation programs are viewed as beneficial for building caregivers’ knowledge and skills and for decreasing caregiver stress. Objective This review aimed to synthesize the experiences and perceptions of informal caregivers of people with dementia when participating in web-based psychoeducation programs and the factors that enable and impede informal caregivers’ engagement in web-based psychoeducation programs. Methods This review followed the Joanna Briggs Institute protocol of systematic review and meta-aggregation of qualitative studies. We searched 4 English databases, 4 Chinese databases, and 1 Arabic database in July 2021. Results A total of 9 studies written in English were included in this review. From these studies, 87 findings were extracted and grouped into 20 categories. These categories were further synthesized into 5 findings: web-based learning as an empowering experience, peer support, satisfactory and unsatisfactory program content, satisfactory and unsatisfactory technical design, and challenges encountered in web-based learning. Conclusions High-quality and carefully designed web-based psychoeducation programs offered positive experiences for informal caregivers of people living with dementia. To meet broader caregiver education and support needs, program developers should consider information quality and relevancy, the support offered, individual needs, flexibility in delivery, and connectedness between peers and program facilitators.

show abstract

“…This is an important group who could be expected to be among the most frequent, often daily, visitors to care homes. While the diversity of internet use among older people should be acknowledged (White et al, 2020b), older people appear to be among those especially at risk of digital exclusion (Nguyen et al, 2021;Seifert et al, 2021), and may therefore experience particular difficulties in adopting online communication and staying in touch if unable to visit. However, they may also need to be able to maintain contact remotely at times, for example, during periods of ill health or if transport is unavailable.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Caring from a distance: carers’ experiences of keeping in touch with care home residents during COVID-19 closures

White

Whitfield

Wolverson

et al. 2024

International Journal of Care and Caring

Self Cite

View full text Add to dashboard Cite

In response to COVID-19, many care homes closed to visitors and new ways for carers and residents to stay in touch were tried. This UK study employed an online survey to explore carer experiences of staying in touch from a distance. The research highlighted: the importance of ongoing connections (through visits and remotely); diverse approaches to maintaining contact; and concerns about safeguarding and well-being. Findings underscore the importance of developing personalised approaches to staying in touch during future care home closures and for those who require an ongoing approach to remote contact due to distance, illness or additional caring responsibilities.

show abstract

The views of carers, people living with dementia and healthcare practitioners about the value of online information and peer support

Cited by 4 publications

References 53 publications

The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs

The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs

The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis

Caring from a distance: carers’ experiences of keeping in touch with care home residents during COVID-19 closures

Contact Info

Product

Resources

About