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Internet-based health resources can support informal caregivers who are caring for children or adolescents with health care needs. However, few studies discriminate informal caregivers’ needs from those of their care recipients or those of people caring for adults.
This study reviews the literature of health-related Internet use among informal caregivers of children and adolescents.
A total of 17 studies were selected from literature searches conducted in 6 electronic databases: PubMed, Cochrane, CINAHL, PsycINFO, ERIC, and EMBASE. All databases searches were limited to articles published in the years 2004 to 2014 in peer-reviewed publications. Search terms consisted of “health-related Internet use,” “eHealth,” “Internet use for health-related purpose(s),” “Web-based resource(s),” and “online resources,” combined with informal caregiver (or “parents”) of “child,” “adolescent,” “student,” “youth,” and “teen.” The age range of the children receiving care was limited to younger than 22 years. Their informal caregivers were defined as persons (parents) who provided unpaid care or assistance to a child or an adolescent with health problems.
Among 17 empirical studies, the majority of informal caregivers of children with medical issues were the parents. Quantitative studies (14/17, 77%) reported prevalence and predictors of health-related Internet use, while mixed-methods and qualitative studies (3/17, 24%) investigated informal caregiver perceptions of helpful health-related Internet use and barriers of use. The prevalence of health-related Internet use varied (11%-90%) dependent upon how health-related Internet use was operationalized and measured. Disease-specific information was used for decision making about treatment, while social support via virtual communities and email were used for informal caregiver emotional needs. A digital divide of Internet access was identified in lower educated minorities. Most studies had methodological challenges resulting from convenience sampling, cross-sectional surveys, lack of theoretical frameworks, or no clear definitions of health-related Internet use.
This study provides an important understanding of how family members use Internet-based information and support systems during child caregiving. Healthcare providers and policy makers should integrate family needs into their current practices and policies. Further rigorous research is required to design efficient and effective nursing interventions.
The Internet continues to play an increasingly important role in our everyday lives, particularly regarding the delivery of health care services and interventions. Health-related Internet use is defined as any activity involving Internet-based information and resources for improving health and well-being [
Childhood and adolescence are critical periods with unique developmental and health care needs [
Considering these critical changes, informal caregivers also have unique needs while caring for ill children and adolescents. Informal caregivers have a responsibility to optimize the healthy development of their children as part of the parenting process [
Unique needs in the disease and caregiving trajectories may be met using the benefits of Internet-based health care service and resources. It is important to know how Internet-based health care services and resources have been used and what their perceived benefits and barriers are. To our knowledge, there have been no systematic reviews conducted to discriminate informal caregiver needs from those of their care recipients or from those caring for adults. Our integrative review on this topic proposed to synthesize the current understanding and state of the art regarding health-related Internet use by informal caregivers of children and adolescents with health care needs in order to identify better ways to help them. The aims of this integrative review were to (1) explore how Internet-based health care services and resources have been used by informal caregivers of children with health care needs; (2) identify the perceived benefits and barriers in health-related Internet use; and (3) examine the conceptual and methodological issues of the previous studies on this topic.
This integrative review was based on a comprehensive approach of a literature search [
For this integrative literature review, an initial literature search was conducted from July 2014 to September 2014 and an additional search was conducted in July 2015. The first search in 2014 did not specify the types of informal caregivers who took care of sick children. After we analyzed the first 14 studies chosen, it was found that most of informal caregivers related to this age group of care recipients were parents. The authors chose to conduct additional searches specifying parent(s) who are primarily responsible for child care.
Initially, we searched for studies published from 2009 to 2014, very few studies met this strict time period. Thus, we decided to expand the publication period to the years 2004 to 2014. A total of 6 computerized databases were searched: PubMed, the
The initial set of search terms consisted of “health-related Internet use,” “eHealth,” “Internet use for health-related purpose(s),” “Web-based resource(s),” and “online resources,” combined with “caregiver” of “child,” “adolescent,” “student,” “youth,” and “teen.” For the second search, “caregiver” was replaced with “parent(s).” Titles, abstracts, and full texts were selected by applying the following inclusion and exclusion criteria. If the article was a systematic review, Cochrane review, literature review, or expert opinion, we used it as background information and examined its references but did not include it in the analysis. The first search results consisted of 470 records of which 14 studies were selected for the review. The second set of search results consisted of 591 records of which 3 studies were added for the review (see
PRISMA flow diagram outlining the search and review process.
Inclusion criteria were as follows:
Children with health care needs receiving informal care were limited to ages younger than 22 years because of discrepancies in legal age among different countries
Primary study participants recognized themselves as informal caregivers (or parents) of children with health care needs
Informal caregivers (or parents) were limited to ages 21 years or older
Studies could include no interventional Internet use in order to examine phenomenological usage in a natural setting without investigator manipulation
Studies were observational studies to examine user-initiated Internet use
Studies were written in English or Korean
Exclusion criteria were as follows:
Study participants were mixed with other populations aged 20 years or younger
Care recipients were mixed with other age groups aged 22 years or older
Ages of recipients or informal caregivers (or parents) were not specified or reported
Study participants were trained or professional health care providers (eg, physicians, nurses, or medical or nursing students)
Intervention modality was combined with other non–Web-based technologies (eg, telephone)
Studies using the Internet as a modality for survey, recruitment, or searching for relevant literature only focused on quality assurance of specific websites
Studies were grey literature including dissertations, conference proceedings, papers or abstracts, or editorials
One author (HK) initially evaluated titles and abstracts by applying potential eligibility criteria to exclude articles that did not investigate Internet use in informal caregivers (or parents) of children with health care needs. Two authors (HK and EP) fully reviewed the selected articles after developing definite eligible criterion and had a satisfying level of agreement over 95% regarding final selection of the articles. Two authors (HK and EP) entered data from selected articles into an analysis table, and an outside validator (AS) with a Master of Library and Information Management degree examined the articles and edited the table entries for accuracy (99% verification). To answer research questions 1 and 2, the coding scheme was developed based on our study purposes and Eysenbach’s framework [
Of 17 studies, 7 were conducted in the United States. In the selected studies, children experienced a wide range of medical needs including (1) hearing loss [
The selected studies had limitations in representing diverse populations including relationships to children, gender, race and ethnicity, insurance status, employment, education level, and the regions where informal caregivers live. The majority of studies were limited to parents or legal guardians (14/17, 82%); the remaining studies were of relatives as caregivers (3/17, 18%). The majority of participants were female, usually mothers [
The definition, prevalence, purpose, and detailed types of general and health-related Internet use are summarized in
General Internet use was defined based on access to the Internet via computer, cell phone, or other mobile handheld device [
The prevalence of health-related Internet use varied (11%-90%) depending upon how it was operationalized and measured. Only one study used a comprehensive definition of health-related Internet use based strictly on Eysenbach's framework [
The most prevalent purpose for health-related Internet use was seeking information regarding child health care needs; 15% to 90% of caregivers knew how to find health-related information on behalf of care recipients [
Informal caregivers were not confident in their ability to appraise health-related information found on the Internet or distinguish the quality of information and support from health care providers. According to Knapp and colleagues [
Informal caregivers used the Internet for communicating with their health care providers or peers [
As a communication method with their health care providers, the informal caregivers wanted to receive information via an electronic newsletter about current disease trends (77%), discharge instructions (66.0%), and educational content about common illnesses (73%) [
The Internet was also commonly used by informal caregivers for obtaining emotional and social support [
The Internet was also commonly used by informal caregivers to educate themselves about obtaining care for themselves and their care recipients simultaneously [
None of the studies investigated any purchases of medical products or medications via online shopping.
There was evidence that a higher education level in informal caregivers was associated with more frequent use of the Internet related to health [
Caregiving-specific factors of health-related Internet use included (1) a strong intention to understand children's health information [
Informal caregivers stated that it was easy to find helpful information regardless of the time and their location. Information helped informal caregivers understand a child’s medical condition [
There were several barriers that informal caregivers encountered using the Internet for health-related purposes. The quality of websites was a main barrier [
Most studies did not clearly define health-related Internet use. Using or accessing the Internet to find health-related information was the common operational definition. However, researchers did not provide the rationales for why they defined health-related Internet use based on the access to use Internet [
All 17 studies were cross-sectional. The most frequently used study designs were quantitative (13/17, 77%) and prospective (16/17, 94%). Descriptive (8/17, 47%), correlational (9/17, 53%), qualitative (2/17, 12%) [
Convenience sampling was the most common. Only 4 studies used more rigorous systematic sampling methods based on probability such as random selection [
Almost all studies used surveys; one conducted unstructured interviews individually or as part of a focus group [
The gold standard instruments regarding health-related Internet use were the Health Information National Trends Survey questionnaire [
Most of the types of data analyses were descriptive: univariate analyses (chi-square, student
This integrative literature review provides an important understanding of how informal caregivers of children with health care needs used Internet-based information and support systems. In spite of variability, health-related Internet use among informal caregivers of children is similar to that of caregivers of adults [
A digital divide exists for racial and ethnic minorities and those with low education and limited Internet access. Consistent with previous study findings, the predictive values of education levels were well represented [
Information is the key driving force behind increasing health-related Internet use. This is consistent with Internet use among informal caregivers of adult populations [
Support through online communication and community is the second driving force of health-related Internet use among informal caregivers of children with health care needs. Informal caregivers' emotional stress has been shown as a need variable that facilitates their use of resources [
Our study found that health-related Internet use is highly prevalent and that caregivers need better guidance identifying quality information sources. Our study assists clinicians and researchers who want to provide information and communication technology (ICT)-based interventions for improving the quality of care for informal caregivers and their care recipients. First, information should be evidence-based and written at a sixth grade level or lower to include informal caregivers with low levels of education [
This study has several limitations. Although it adhered to the systematic review process, there might be potential errors and biases. Although clear inclusion and exclusion criteria were set up and a systematic review process was conducted, there is a possibility that reviewers might have missed appropriate studies in the search process. Multiple authors conducted the coding process independently and the results were compared, but potential biases of the authors might have influenced the review process. In addition, while two authors evaluated the quality of studies based on the guidelines of the US Department of Human Services Agency for Healthcare Research and Quality, there was still subjectivity in evaluating the studies.
Further research should overcome critical methodological limitations. First, the definition of health-related Internet use should be more clearly operationalized and stated. Consistent use of definitions and measures will allow us to compare prevalence across studies. Second, further studies should use probability sampling to increase generalizability of findings. Low response rates should be addressed to reduce self-selection bias. Third, there is an ongoing need to develop and use reliable and valid instruments to capture more comprehensive behaviors of health-related Internet use. Self-report bias is inevitable in survey studies, thus objective measures used for a long-term follow up would be helpful to conclude causality. Fourth, theory-based studies are required to explain the complexity of health-related Internet use. Last, more rigorous statistical analyses are required. For example, for studies recruiting participants from multiple sites, the heterogeneous characteristics of sites should be controlled as confounding variables. Further studies should consider institutional-level variables affecting characteristics of study participants from different sites.
In spite of its limitations, this study provides important information for health care providers and policy makers to integrate the need of informal caregiver who take care of their children and adolescents when developing Internet-based interventions and services. There is sufficient evidence that health-related Internet use is highly prevalent, and there are increasing needs for better use of the Internet among informal caregivers. The findings of this review also reveal gaps in the literature, which could direct further research. In addition, the information provided in this study provides important implications in designing intervention programs for the target population.
Summary of characteristics of informal caregivers and care recipients from 17 studies.
Summary of prevalence and characteristics of health-related Internet use.
Methodological evaluation of study quality.
Modified guideline of Agency for Healthcare Research and Quality criteria.
Cumulative Index of Nursing and Allied Health Literature
Education Resources Information Center
information and communication technology
None declared.