Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Caton, Sue; Koivunen, Emma-Reetta; Allison, Callum

doi:10.1177/1744629519874214

Cited by 10 publications

(7 citation statements)

References 58 publications

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“…Carers in other studies have made similar comments around this format ( Blom et al, 2015 ; Dam et al, 2017 ). Community hesitancy around privacy online is present in other peer support research, where users discuss the importance of maintaining their anonymity ( Caton et al, 2019 ; Chan et al, 2016 ; Hanna & Gough, 2018 ). In addition to privacy concerns, carers in the literature perceive online designs as lacking trust, quality control, and targeted information ( Gibson et al, 2017 ).…”

Section: Resultsmentioning

confidence: 99%

Supports and interventions for carers of a person with depressive or anxiety symptomology: A systematic review

et al. 2022

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An increasing body of research attests to the capacity of evidence-based interventions to improve outcomes for informal carers. A review of suitable supports and interventions for carers of a person with depressive or anxiety symptomology is timely. This systematic review explores intervention suitability evidence for this carer group. Searches for relevant primary studies were conducted in six databases across a 15-year timeframe (October 2004–October 2019). Studies were assessed and compared narratively and thematically. Qualitative themes were synthesised with quantitative studies to explore the extent to which carer preferences were embedded in interventions. The initial literature search produced 13,183 studies. Six studies—three randomised controlled trials (RCTs) and three mixed-method studies—were included following a double-blinded screening process, a review of reference lists and risk of bias assessment. Included studies contributed either intervention efficacy or acceptability evidence. The synthesis of qualitative themes with quantitative studies found that carer-specific needs and targeted psychoeducation were featured in interventions from all six quantitative studies. Current evidence for appropriate supports and interventions for this carer group is limited. The review uncovers a lack of interventions for carers of a person with anxiety symptomology and limited intervention suitability evidence for carers of a person with depressive symptomology. More research is needed to explore the needs and preferences of this carer group, and how best to support them.

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Section: Resultsmentioning

confidence: 99%

Supports and interventions for carers of a person with depressive or anxiety symptomology: A systematic review

et al. 2022

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“…The majority of the participants in this study frequently searched for information on the internet, similar to other parents from around the world, and used it to understand their child's disease (Alsem et al, 2017). In addition, the internet was used to form emotional bonds with parents of children with similar diseases and to obtain information on various treatments and activities for children through parental communities (Caton et al, 2019; Nicholl et al, 2017). Parents were less satisfied with the results from an internet search, and they preferred information received from parent communities.…”

Section: Discussionmentioning

confidence: 99%

Accessibility of social services and ICT‐based services for children with disabilities and their families

Rim

Shin

Jeon

2023

Child & Family Social Work

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Children with disabilities and their families are often socially isolated. To integrate them into society, it is important to improve their access to services and encourage families to participate in society. It is effective to incorporate information and communication technology in providing information access and care services for children with disabilities and their families. Therefore, this study explores parental satisfaction with and demand for information and communication technology‐based care services for children with disabilities. This study used an explanatory sequential mixed method design. A total of 99 parents of children enrolled in two schools for special education or rehabilitation hospital participated in the study. Data were collected from parents through either a questionnaire survey or interviews. The study was conducted from 5 November to 5 December 2018. More than 50% of the participants found it inconvenient to search for services and reported below‐average satisfaction because of a lack of information and the results being inappropriate, abstract, difficult to understand, insufficient and scattered. More than 70% of the participants were dissatisfied with the services because of their high cost and the limited frequency of use. Participants expressed a need for information and communication technology‐based services to address these issues, including services to help the child's development, with low eligibility requirements and easy access to treatment that can enhance networks and services. Parents had high care burdens and difficulties accessing services for their children, which highlights the need for alternative services.

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“…Evidence shows that families who received education around future planning and supports are more likely to engage in creating LTC plans (Burke et al, 2018). And while a general internet search for LTC generates multiple potential resources, a systematic review of internet use among family caregivers of people with intellectual or developmental disabilities found that (1) caregivers find the volume of information on the internet overwhelming; (2) internet‐based searches are challenging and time‐consuming to identify relevant information; and (3) misinformation or negativity is problematic (Caton et al, 2019). Consequently, integrated and curated LTC planning tools, such as The Arc's Center for Future Planning (The Arc's Center for Future Planning, n.d.) and University of Northwestern's Plan Your Lifespan (Lindquist et al, 2017; Ramirez‐Zohfeld et al, 2021), are valuable.…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, few evidence‐based interventions exist to support LTC planning specifically for people with intellectual or developmental disabilities and/or their caregivers: a 2020 systematic review found only four high‐quality studies assessing approaches to future care planning for adults with intellectual or developmental disabilities and their family caregivers (Brennan et al, 2020). For most families, usual care consists of families navigating disability social services websites independently (Caton et al, 2019; Hostetter & Klein, 2018; McLean et al, 2021), being introduced to LTC services as part of transition planning of a graduating student's individualised education plan (Grigal et al, 2011; Powers et al, 2005; Shogren & Plotner, 2012), or being referred to case management services through a health system or agency. Although case management programs may lead to enhanced planning for the future and increased access to services (Bigby et al, 2002), these approaches are limited by accessibility.…”

Section: Introductionmentioning

confidence: 99%

Identifying key components of a web‐based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities

Chicas

Steinway

Chen

et al. 2022

Research Intellect Disabil

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Background: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. Methods: We conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions. Participants also answered questions on demographic characteristics and functional status.Results: NVivo qualitative analysis software was used to analyse focus groups using a grounded theory approach. Caregivers identified web tool accessibility and topics such as finances, housing, and government benefits as critical. Caregivers also described desired features for a LTC planning tool.Conclusions: This study identified desired characteristics of web-based LTC planning tools and ways in which existing web-based interventions might be adapted or enhanced.

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Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Cited by 10 publications

References 58 publications

Supports and interventions for carers of a person with depressive or anxiety symptomology: A systematic review

Supports and interventions for carers of a person with depressive or anxiety symptomology: A systematic review

Accessibility of social services and ICT‐based services for children with disabilities and their families

Identifying key components of a web‐based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities

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