<i>Internet Social Support for Parents: The State of Science</i>

Schärer, K

doi:10.1111/j.1744-6171.2005.00007.x

Cited by 52 publications

(43 citation statements)

References 80 publications

(90 reference statements)

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“…In many cases, these individuals lack an understanding of the child’s diagnosis and resulting challenges. For emotional understanding and resources, parents have indicated that they prefer to connect with other parents of CSHCN who live in their geographic area and who have a child with the same or a similar diagnosis [6,7]. …”

Section: Introductionmentioning

confidence: 99%

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

et al. 2016

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BackgroundWhen parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them.ObjectiveThe purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents.MethodsA scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN.ResultsThe literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States.ConclusionsParents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.

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Section: Introductionmentioning

confidence: 99%

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

et al. 2016

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“…A third important factor is peer-support, which was found to reduce parenting stress in parents of chronically ill children [24,25] and to reduce the number of parent–child conflicts concerning diabetes in families of a child with T1D [15]. Peer support is also related to better coping in parents of a chronically ill child [25,26].…”

Section: Introductionmentioning

confidence: 99%

“…Peer support is also related to better coping in parents of a chronically ill child [25,26]. It is suggested that healthcare professionals should be actively involved in organizing peer contact [15,27], for example by facilitating peer support groups [15] or by appointing mentor-peers [24].…”

Section: Introductionmentioning

confidence: 99%

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The Sugarsquare study: protocol of a multicenter randomized controlled trial concerning a web-based patient portal for parents of a child with type 1 diabetes

2014

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BackgroundType 1 diabetes demands a complicated disease self-management by child and parents. The overwhelming task of combining every day parenting tasks with demands of taking care of a child with diabetes can have a profound impact on parents, often resulting in increased parenting stress. Tailored disease information, easy accessible communication with healthcare professionals and peer support are found to support parents to adequately cope with the disease and the disease self-management in everyday life. Internet can help facilitate these important factors in usual pediatric diabetes care. Therefore, we will develop a web-based patient portal in addition to usual pediatric diabetes care and subsequently evaluate its efficacy and feasibility. The web-based patient portal, called Sugarsquare, provides online disease information, and facilitates online parent-professional communication and online peer support. We hypothesize that parenting stress in parents of a child with type 1 diabetes will decrease by using Sugarsquare and that Sugarsquare will be feasible in this population.Methods/DesignWe will test the hypotheses using a multicenter randomized controlled trial. Eligible participants are parents of a child with type 1 diabetes under the age of 13. Parents are excluded when they have no access to the internet at home or limited comprehension of the Dutch language. Participants are recruited offline from seven clinics in the Netherlands. Participants are randomly allocated to an intervention and a control group. The intervention group will receive access to the intervention during the twelve-month study-period; the control group will receive access in the last six months of the study-period. Self-reported parenting stress is the primary outcome in the present study. Data will be gathered at baseline (T0) and at six (T1) and twelve (T2) months following baseline, using online questionnaires. User statistics will be gathered throughout the twelve-month study-period for feasibility.DiscussionDependent on its feasibility and efficacy, the intervention will be implemented into usual pediatric diabetes care. Strengths and limitations of the study are discussed.Trial registrationNTR3643 (Dutch Trial Register)

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“…She concluded that parents will utilize Internet-based communications 12 and that in general there is great potential for electronic communication to meet the needs of parents seeking additional support mechanisms. 13 In fact, successful Internet support systems have been implemented for a variety of populations and health states, including maternity and parenting, 14-19 cancer, 20 diabetes, 21 mental health, 22 CKD, 10 and HIV. 23 Despite the positive outcomes reported in these studies, in each of these online systems the assessed outcomes were either an assessment of support, or an assessment of satisfaction without formal assessment of usability.…”

Section: Introductionmentioning

confidence: 99%

Changing Needs for Information and Support in an Online System for Parents of Children With Kidney Disease

Pinsk

Nicholas

2017

Can J Kidney Health Dis

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Background:Pediatric chronic kidney disease is psychologically, financially, and physically demanding on parents providing care. Parents often feel isolated because of the rarity of the condition, and geographic isolation often compounds this perception in Canada. Many parents seek assistance online for both information and social support.Objective:This study examines an online portal, titled “Ability Online,” which was designed to provide support and information to a diverse group of parents using chat facilities, bulletin boards, and e-mail. Specifically, we sought to identify how the technologies offered in this system related to the support and information seeking needs for parents. Secondary aims of determining possible reasons for attrition over time were explored as well.Design:Mixed methodology sequential exploratory design using the qualitative methodology of descriptive interpretation.Setting:Telephone interviews.Patients:Twenty parents of pediatric patients with chronic kidney disease from four Canadian centers who engaged in an online social support system “Ability Online.”Measurements:Interview transcripts generated from 20 taped phone conversations were reviewed from parents who engaged in the online system, and the themes derived from these transcripts served to generate semistructured interview questions that focused on their use of, and perceived benefit from, this technology for social support. Follow-up telephone interviews were then conducted with a 6-person subset of the original group in an effort to further define the impact of technology on their experience. This same smaller cohort provided data on social supports, caregiver satisfaction, and caregiver stress.Results:Many parents experience a progression through which their needs for knowledge and support change over time. Specifically, parents describe a transition from pure information seeking, to seeking parental interaction, mutual support and collaboration, and ultimately to advocacy. Parents described how technology could be used to address those needs.Limitations:Our cohort was slightly more educated and representative of more urban populations than published data reflecting the population of North American pediatric patients living with kidney disease.Conclusions:Our data suggest themes of technology use influencing the goals of online support seeking. While our findings are preliminary, further study may inform Web designers to identify the changing needs of participants in designing such online support networks, and minimize the reasons that participants fail to adopt, or terminate their online experiences.

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Internet Social Support for Parents: The State of Science

Abstract: Electronic forms of social support have the potential to meet the identified needs of parents for more social support.

Cited by 52 publications

References 80 publications

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

The Sugarsquare study: protocol of a multicenter randomized controlled trial concerning a web-based patient portal for parents of a child with type 1 diabetes

Changing Needs for Information and Support in an Online System for Parents of Children With Kidney Disease

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