Dataset Information

Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review.

ABSTRACT:

Background

Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support, usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding of platforms that are most frequently used or preferred among parents and caregivers of children with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation to these tools.

Objective

We aimed to (1) identify prominent digital platforms used by parents or caregivers of children with disabilities; (2) explore the theoretical contexts and reasons for digital platform use, as well as the experiences made with using these platforms reported in the included studies; and (3) identify any privacy and ethical concerns emerging in the available literature in relation to the use of these platforms.

Methods

We conducted a scoping review of 5 academic databases of English-language articles published within the last 10 years for diseases with childhood onset disability and self-help or parent/caregiver-led digital platforms.

Results

We identified 17 papers in which digital platforms used by parents of affected children predominantly included social media elements but also search engines, health-related apps, and medical websites. Information retrieval and social support were the main reasons for their utilization. Nearly all studies were exploratory and applied either quantitative, qualitative, or mixed methods. The main ethical concerns for digital platform users included hampered access due to language barriers, privacy issues, and perceived suboptimal advice (eg, due to missing empathy of medical professionals). Older and non-college-educated individuals and ethnic minorities appeared less likely to access information online.

Conclusions

This review showed that limited scientifically sound knowledge exists on digital platform use and needs in the context of disabling conditions in children, as the evidence consists mostly of exploratory studies. We could highlight that affected families seek information and support from digital platforms, as health care systems seem to be insufficient for satisfying knowledge and support needs through traditional channels.

SUBMITTER: Gruebner O

PROVIDER: S-EPMC9768636 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review.

Gruebner Oliver O van Haasteren Afua A Hug Anna A Elayan Suzanne S Sykora Martin M Albanese Emiliano E Naslund John J Wolf Markus M Fadda Marta M von Rhein Michael M

Journal of medical Internet research 20221206 12

<h4>Background</h4>Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digi ...[more]

PMID: 36472896

Similar Datasets

Project description:IntroductionEvidence shows that parents of children with intellectual disabilities experience high levels of stress, emotional challenges and higher levels of depression. Despite these challenges, support for parents has tended to be peripheral in healthcare services of children. There is a lack of research attention given to support programmes for parents of children with intellectual disabilities despite the importance of parenting for the optimal development of children with intellectual disabilities.Methods and analysisThis review will follow the Joanna Briggs Institute scoping review methods manual. The search for relevant studies will be in Medline (EbscoHost), PsychARTICLES, PubMed, CINHAL, Academic Search Complete and SAePublications. Reference mining of full review studies will be conducted. A three-step search strategy will be used, including the use of information management software to manage the search results and to remove duplications. An independent reviewer will extract data using a data extraction tool. Furthermore, another reviewer will screen the included articles in conjunction with the results of the scoping review. The data extracted will be presented in a tabular format with a narrative summary related to the key findings.Ethics and disseminationThis scoping review has received ethical approval (BM20/4/26). A summary of the findings of the study will be published in a peer-reviewed journal. This scoping review will contribute to a better understanding of the support programmes available to parents of children with intellectual disabilities. This could be the first step in highlighting the gaps and future directions for the development and implementation of support programmes for parents of children with intellectual disabilities.Registration detailsMarais JE, Wegner L, Mthembu T. Support programs for parents of children with intellectual disabilities: a scoping review [Internet].OSF; 2021. Available from:https://osf.io/en6cs/.

Project description:IntroductionDespite evidence that illustrates the unmet healthcare needs of older adults, there is limited research examining their help-seeking behaviour, of which direct intervention can improve patient outcomes. Research in this area conducted with a focus on ethnic minority older adults is also needed, as their help-seeking behaviours may be influenced by various cultural factors. This scoping review aims to explore the global literature on the factors associated with help-seeking behaviours of older adults and how cultural values and backgrounds may impact ethnic minority older adults' help-seeking behaviours in different ways.Methods and analysisThe scoping review process will be guided by the methodology framework of Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocols Extension for Scoping Reviews guidelines. The following electronic databases will be systematically searched from January 2005 onwards: MEDLINE/PubMed, Web of Science, PsycINFO, CINAHL and Scopus. Studies of various designs and methodologies consisting of older adults aged 65 years or older, who are exhibiting help-seeking behaviours for the purpose of remedying a physical or mental health challenge, will be considered for inclusion. Two reviewers will screen full texts and chart data. The results of this scoping review will be summarised quantitatively through numerical counts and qualitatively through a narrative synthesis.Ethics and disseminationAs this is a scoping review of published literature, ethics approval is not required. Results will be disseminated through publication in a peer-reviewed journal.DiscussionThis scoping review will synthesise the current literature related to the help-seeking behaviours of older adults and ethnic minority older adults. It will identify current gaps in research and potential ways to move forward in developing or implementing strategies that support the various health needs of the diverse older adult population.RegistrationThis scoping review protocol has been registered with the Open Science Framework (https://osf.io/69kmx).

Project description:BackgroundMany children with mental health problems do not receive professional help. Despite the frequent use of digital health interventions (DHIs) such as websites or web-based service navigation platforms, their effects on parents' mental health literacy, help seeking, or uptake of professional services are unclear.ObjectiveThis study aims to provide a systematic review and narrative synthesis to describe whether DHIs improve the aforementioned parental outcomes.MethodsDatabases, including CINAHL, Embase, MEDLINE OVID, PsycINFO, and PubMed (2000-2020), were accessed. Studies were included if they evaluated quantitative changes in mental health literacy, help seeking, or the uptake of services by parents of children with mental health problems. Theoretical frameworks, sample sizes, participant demographics, recruitment, interventions, DHI use, results, and health economic measures were used for data extraction.ResultsOf the 11,379 search results, 5 (0.04%) studies met the inclusion criteria. One randomized controlled trial found the reduced uptake of services after using a DHI coupled with a telephone coach for a child's behavioral problem. Of 3 studies, 2 (66.7%) found statistically significant improvement in mental health literacy for attention-deficit/hyperactivity disorder but had no control group. One study found nonsignificant improvement in mental health literacy and help-seeking attitudes toward anxiety and depression compared with those in active controls. All studies were rated as having a high or serious risk of bias. Search results were affected because of a single reviewer screening articles, overall low-quality studies, and a lack of consistent nomenclature.ConclusionsThere is no high-quality evidence that DHIs can improve parents' mental health literacy, help seeking, or uptake of services. More research is needed to evaluate DHIs by using rigorous study designs and consistent measures.Trial registrationPROSPERO International Prospective Register of Systematic Reviews CRD42020130074; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020130074.

Project description:BackgroundIndividuals with marginalised social characteristics (e.g. by race/ethnicity, gender, body weight) report experiencing eating disorder (ED) symptoms but do not proportionally access treatment. There may be unique factors experienced by individuals with multiple marginalised social characteristics which are not included in our current understanding of help-seeking for EDs. The present review sought to examine the extent of evidence exploring help-seeking and service utilisation for (EDs) by people with more than one marginalised social characteristic or identity. MAIN: A systematic scoping review was conducted in accordance with the Joanna Briggs Institute guidelines for scoping reviews. Four databases (PsycINFO, PubMED, Embase, Medline) were searched for papers explicitly examining help-seeking or service utilisation for people with more than one marginalised social characteristic or identity (e.g. race/ethnicity, sexual orientation, weight status). Included studies underwent qualitative synthesis employing an existing model of help-seeking adapted for this review. The most common ED investigated was binge eating disorder (BED) and the most frequently reported marginalised characteristics were overweight/obesity and race/ethnicity. Other intersectional characteristics identified included socioeconomic status (SES), gender, and sexual orientation. People with marginalised social identities such as race/ethnicity or gender were more likely to seek help for BED when they also experienced a higher BMI. There was consensus across studies included in this review that help-seeking rates are low for people with an ED.ConclusionMental health literacy and cultural beliefs about help-seeking are important factors affecting the experiences of people with intersectional identities and this may impact their likelihood to seek help. Results suggest that future studies should consider the interaction between social characteristics and identities in their analyses of outcomes in EDs as this is an emerging area of research, extension of our findings is also needed. The protocol for this review is registered via PROSPERO number CRD42024525849.

Project description:BackgroundVulvodynia is a poorly understood chronic pain condition characterized by persistent and unexplained pain in the vulva. Given the intimate nature of the pain, partners may play an important role in promoting self-management and help-seeking behaviours among women with vulvodynia.ObjectivesThe current study aimed to explore the role of partner support in pain experiences and help-seeking behaviours among women with vulvodynia.DesignA qualitative interpretive design was used.MethodsTen women with vulvodynia (M age = 37.9 years) were interviewed using a semi-structured non-directive topic guide. Data were analysed using reflexive thematic analysis.ResultsThree themes around help-seeking experiences were constructed from the data: (1) 'It's Been a Battle' - Failed by the Healthcare System; (2) 'It's Just the Vulva' - Dismissed by Healthcare Professionals; and (3) 'I Diagnosed Myself' - The Patient Becomes the Expert. Participants described negative help-seeking experiences characterized by long delays to diagnosis, lack of awareness and understanding from healthcare professionals, minimization of symptoms, and having to advocate for and demand care. A further three themes pertaining to partner support were also developed: (1) 'That Person to Listen to You' - Source of Emotional Support; (2) 'Why Don't You Try This?' - Finding Solutions Together; and (3) 'He Forgets that it's Still There' - Vulvodynia is a Foreign Concept. Partners provided emotional support and showed empathy and understanding, and practical support by accompanying women to medical appointments and help with pain management. However, participants felt partners' understanding of vulvodynia was limited and that this impacted their relationships.ConclusionsFindings highlight a lack of continuity of care and multidisciplinary approach to treatment, with help-seeking experiences being mainly negative in this sample. Increasing public awareness of vulvodynia and improving healthcare access is crucial to improving physical and psychological outcomes for this group. Partners can play an important role in supporting people with vulvodynia; however, other outlets of support should be further explored.

Dataset Information

Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review.

Background

Objective

Methods

Results

Conclusions

Publications

Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets