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Journal of Pediatric Oncology Nursing logoLink to Journal of Pediatric Oncology Nursing
. 2018 Aug 31;35(6):399–405. doi: 10.1177/1043454218795091

Social Media Use Among Parents and Caregivers of Children With Cancer

Elizabeth S Nagelhout 1, Lauri A Linder 1, Tara Austin 2, Bridget Grahmann Parsons 3, Brantley Scott 4, Emmie Gardner 5, Holly Spraker-Perlman 6, Anupam Verma 5, Mark N Fluchel 5, Yelena P Wu 1,
PMCID: PMC6734526  PMID: 30168367

Abstract

Social media as an effective source of information and support among parents and other caregivers of children with cancer has not been explored. The purpose of this cross-sectional study was to describe caregivers’ reasons for using social media, social media sites used, and predictors of social media usage. This study sample included 215 caregivers (96% parents) of children with cancer receiving cancer-related care at a tertiary children’s hospital in the Intermountain West. Most of caregivers (74%) reported using social media in relation to their child’s cancer and reported using social media to provide and receive support and information about their child’s diagnosis or treatment. Our findings suggest that social media could be a delivery platform for future interventions seeking to meet the informational and emotional needs of caregivers of children with cancer. An awareness of how parents and caregivers of children receiving cancer-related treatment use social media can help nurses understand their ongoing informational and emotional needs. Nurses can also support parents and caregivers in selecting reputable sources of support that are accessible via social media.

Keywords: social media, caregivers, parents, childhood cancer

Introduction

Caregivers (e.g., parents or guardians) of children with cancer are faced with the challenge of navigating logistical issues and medical decisions related to their child’s medical care, while simultaneously managing psychosocial distress throughout the process. Numerous studies demonstrate that caregivers report stress, anxiety, and lower quality of life throughout children’s cancer diagnosis, treatment, and remission (Best, Streisand, Catania, & Kazak, 2001; Boman, Lindahl, & Björk, 2003; Dockerty, Williams, McGee, & Skegg, 2000; Rodriguez et al., 2011; Salvador, Crespo, Martins, Santos, & Canavarro, 2015; Sklenarova et al., 2015; Vrijmoet-Wiersma et al., 2008). Increasing access to social support could help caregivers effectively manage their stress and other needs. For example, caregivers of children with cancer have expressed need for emotional (e.g., coping) and informational (e.g., prognosis, financial information) support (Adams, Boulton, & Watson, 2009; Eysenbach, Powell, Englesakis, Rizo, & Stern, 2004; Kerr, Harrison, Medves, Tranmer, & Fitch, 2007; Love et al., 2012).

Prior studies have highlighted a range of unmet emotional and informational needs expressed by caregivers of children with cancer (Adams et al., 2009; Eysenbach et al., 2004; Love et al., 2012). However, social media, defined as a web-based platform for the exchange of user-generated content, which is used by nearly two thirds of American adults, has not been previously explored as a potential source of information and emotional support for this caregiver population (Kaplan & Haenlein, 2010; Perrin, 2015). Studies of adolescents with cancer and other chronic illnesses have suggested that social media can facilitate peer support and information exchange (Eysenbach et al., 2004; Love et al., 2012). Caregivers of children with cancer may also benefit from peer support via social media. For example, caregivers could use social media sites to connect with other families to exchange information about cancer treatment experiences, to provide and receive emotional support, or to participate in online support groups. In order to understand whether social media could be a useful source of support to meet the needs of caregivers of children with cancer, it is necessary to first understand caregiver’s usage and preferences for social media sites. The aim of the current study was to describe social media usage among caregivers of children with cancer.

Method

Design

This study used a cross-sectional design to explore caregivers’ social media usage. We used an investigator-developed questionnaire with caregivers of children with cancer to describe their preferred social media sites, reasons for social media use, and predictors of social media sites used (e.g., caregiver age and gender) related to a child’s cancer experience.

Setting

Participants were recruited through Primary Children’s Hospital in Salt Lake City, Utah. This Children’s Oncology Group–affiliated hospital serves as the main pediatric tertiary care hospital for the Intermountain West, which also includes Utah, as well as parts of Idaho, Wyoming, Nevada, Colorado, Arizona, and Montana. The hospital’s Cancer Transplant Center treats around 300 children and adolescents with cancer each year, including 150 newly diagnosed patients.

Participants

Caregivers were eligible to participate in the current study if they were at least 18 years of age, able to speak and read English, and were the parent, legal guardian, or identified as the primary caregiver of a child who received cancer-related treatment at least once between 2012 and 2014.

Procedure

All procedures were approved by the University of Utah Institutional Review Board. A waiver of documentation of informed consent was granted. A cover letter was included with questionnaires and explained that completing and returning the questionnaire implied informed consent. Data were collected between January and May 2015. Eligible participants were recruited using two methods. First, eligible participants were mailed a cover letter describing the study and a copy of the study questionnaire. Second, potentially eligible patients were approached for recruitment at scheduled clinic appointments. A total of 254 caregivers were mailed a letter and/or were approached at an appointment, and 215 completed the questionnaire (response rate = 84.6%).

Materials and Measures

Participants were asked to complete a self-reported questionnaire assessing demographic information, information about the child’s cancer (type, year of diagnosis), child’s current treatment status (e.g., receiving disease directed therapy, off therapy), child’s relapse status, and the caregiver participant’s use of social media related to the child’s cancer. Investigator-developed questions targeting participant’s social media use assessed the types of social media sites used, reasons for using social media, and length of time spent using social media sites (e.g., number of hours per day). Questions were close-ended but participants were allowed to choose multiple responses to describe reasons for using social media.

Data Management and Analysis

Analyses were conducted using STATA 14.1. Descriptive statistics (frequencies, means, standard deviations) summarized demographic characteristics and social media use. Chi-square analyses explored associations between demographic/illness factors (e.g., caregiver gender, child’s treatment status), reasons for social media use, and social media site preferences. Logistic regression explored whether caregiver age, caregiver gender, or child’s treatment status predicted social media site preferences and reasons for using social media.

Results

Participant Characteristics

The vast majority of participants (96%) reported being the biological parent of a child with cancer. Forty-one percent of children were receiving disease-directed therapy and 50% were currently off therapy. On average, children were 2.2 years (standard deviation [SD] = 1.8; range 0-12 years) from their initial cancer diagnosis. Caregiver and patient demographic characteristics are presented in Table 1.

Table 1.

Caregiver and Child Demographic Characteristics (N = 215) and Child Cancer Characteristics.

Demographic Characteristic n (%) unless otherwise noted
Caregiver
Age (years)
 18-24 2 (<1.0)
 25-29 18 (8.5)
 30-39 103 (48.6)
 40-49 72 (33.9)
 50+ 17 (8.1)
Gender
 Male 31 (14.5)
 Female 183 (85.5)
Race
 White 197 (91.6)
 Native American 1 (<1.0)
 Asian 5 (2.3)
 Native Hawaiian, Pacific Islander 1 (<1.0)
 Hispanic/Latino 13 (6.1)
 Black or African American 1 (<1.0)
Highest level of education
 Less than high school 1 (<1.0)
 Some high school 5 (2.3)
 High school or equivalent 28 (13.1)
 Some college, no degree 62 (28.9)
 Two-year degree 27 (12.6)
 College graduate 70 (32.7)
 Graduate school 21 (9.8)
Annual household income
 <$25,000 25 (11.7)
 $25,000-49,999 42 (19.6)
 $50,000-74,999 48 (22.4)
 $75,000-99,999 42 (19.6)
 $100,000-149,999 34 (15.9)
 ⩾$150,000 23 (10.8)
Marital status
 Married 184 (85.9)
 Divorced 8 (3.7)
 Single 7 (3.3)
 Single, living with partner 7 (3.3)
 Separated 5 (2.3)
 Widowed 3 (1.4)
Number of children living at home
 0-1 33 (15.7)
 2-3 102 (48.3)
 4-5 64 (30.3)
 6+ 12 (5.7)
Caregiver’s relationship to child
 Biological parent 204 (94.9)
 Adoptive parent 3 (1.4)
 Foster parent 1 (<1.0)
 Grandparent 3 (1.4)
 Caretaking relative 1 (<1.0)
 Legal guardian 3 (1.4)
Child
Gender
 Male 129 (60.3)
 Female 85 (39.7)
Years since child’s cancer diagnosis M (SD) 2.2 (24)
Cancer diagnosis type
 Leukemia/lymphoma 109 (50.7)
 Solid tumor 88 (40.9)
 Other 18 (8.4)
Treatment status
 Receiving disease directed therapy 90 (41.9)
 Off therapy 108 (50.2)
 Deceased 2 (0.93)
 Not specified 15 (6.9)
Relapse status
 Yes 10 (4.6)
 No 205 (95.4)
Current age, years M (SD) 9.1 (5.1)

Caregiver Use of Social Media

Caregivers reported using social media for personal use (96%) and use related to their child’s cancer (74%). Of the 4% who reported not using social media sites, common reasons for nonuse included preferring other methods of socializing (67%), concerns about privacy (33%), and limited time (33%). Social media sites used by caregivers are presented in Figure 1. Facebook was the most common social media site used by caregivers for personal use (91%) and in relation to their child’s cancer (80%). The most common cancer-specific internet sites were Make-a-Wish Foundation (58%), a local pediatric cancer Facebook group (35%), and HopeKids (29%). Caregivers reported spending an average of 1.3 hours (SD = 1.1) a day using social media.

Figure 1.

Figure 1.

Social media sites used by caregivers.

Reasons for Cancer-Related Social Media Use

Figure 2 presents caregivers’ reasons for using social media. In relation to their child’s cancer, caregivers commonly reported using social media to gain satisfaction from providing support to others (80%), to connect with other families (68%), to give support to others (68%), and to receive support from others (68%). Fifty percent of caregivers reported using social media in relation to their child’s cancer to both receive and provide information.

Figure 2.

Figure 2.

Caregivers’ reasons for using social media.

Demographic and Illness Predictors of Social Media Sites Used

Caregiver age significantly predicted the types of social media sites used. Specifically, caregivers aged 40 to 49 years and those older than 50 years were less likely to use Facebook compared with caregivers aged 30 to 39 years (odds ratio [OR] = 0.46, 95% confidence interval [CI] = [0.24, 0.90], p = .02 and OR = 0.23, 95% CI = [0.08, 0.69], p = .008, respectively). Conversely, younger caregivers aged 24 to 29 years and 30 to 39 years were less likely to use cancer-specific websites than caregivers older than 50 years (OR = 0.22, 95% CI = [0.05, 0.96], p = .04; OR = 0.27, 95% CI = [0.09, 0.80], p = .02). Caregiver age was not a predictor of caregiver’s endorsement of reasons for social media use. There was no association between caregiver gender or child’s treatment status and reasons for social media use or preferences for sites used.

Discussion

The current study is among the first to describe social media use among caregivers of children with cancer, including in relation to their child’s cancer experience. Within our study sample, social media was used by most caregivers of children with cancer for personal use (96%) and in relation to their child’s cancer (74%). Caregivers reported using a range of social media sites and reported a variety of reasons they use social media.

In relation to their child’s cancer, the most commonly cited reasons for caregivers was to gain satisfaction from providing support, to connect with other families, and to provide and receive support. These findings emphasized caregiver’s use of social media in terms of support related to their child’s cancer and raised the possibility that caregivers in this population continue to have unmet emotional needs. Although previous literature has not evaluated social media as a means for social support for caregivers of individuals with cancer, use of social media has been effective at increasing perceived social support and reducing distress patients with cancer and survivors (Attai et al., 2015; Fogel, Albert, Schnabel, Ditkoff, & Neugut, 2002; Gibson et al., 2016; Hong, Peña-Purcell, & Ory, 2012; Klemm et al., 2003; Maher et al., 2014).

The use of social media among caregivers could be an effective way to increase social support and reduce stress and anxiety associated with a child’s cancer diagnosis and treatment. Additionally, our results suggest that social media–based interventions should potentially be tailored to caregivers of different ages. Because caregivers older than 40 years were less likely to report using Facebook, cancer-specific websites with interactive components could be a useful platform for reaching these caregivers. At the same time, social media–based interventions need to be responsive to emerging social media platforms and changes in the general demographics of individuals using each type of platform.

Another commonly cited reason for social media use in relation to their child’s cancer in the current study was to provide and receive information from other cancer families and garner practical tools or knowledge to help with their child’s cancer treatment. This finding highlights the opportunity that social media provides for bidirectional exchange of information, which could help address caregivers’ informational and emotional needs (Adams et al., 2009; Eysenbach et al., 2004; Love et al., 2012; Solomon, Wagner, & Goes, 2012). Social media provides a more interactive platform for information exchange, which contrasts traditional means of information provision which are one directional (e.g., informational brochures, websites containing information alone). This interactive platform can then be balanced with the desire for privacy by some caregivers.

The current study has a few limitations worth noting. First, this study used a cross-sectional study design and, therefore, only captured caregivers’ use of social media sites at one time point. The study relied on self-report from questionnaires to gain an understanding of social media use and reasons for using social media. Although the study largely reflected the racial and ethnic composition of the geographic area served, the sample had limited racial/ethnic diversity, which could reduce the generalizability of the study results. Because the questionnaire was in English, the social media use of non–English-speaking caregivers was not assessed. Finally, the majority of the participants were female caregivers, so the data may not reflect the opinions of male caregivers.

Implications for Practice and Future Research

Although attention has been given to workplace-related use of social media by health care professionals (Boyce, Davis, Gerdy, & Pool, 2011), less effort has been made to support frontline staff, including nurses, in guiding families to social media–based resources. An awareness of parents’ and caregivers’ rationale for social media use can help nurses understand caregivers’ ongoing informational and emotional needs. Nurses and other pediatric oncology clinicians can also support parents and caregivers in selecting reputable sources of information support that are accessible via social media.

Results of this study support the notion that social media could be a potential platform for delivering information or interventions to caregivers of children with cancer. Because most caregivers are already using social media and it can be accessed from home or other locations and on their own time, social media–based interventions may be an innovative and convenient way to provide information and support that caregivers may need. Developing social media–based interventions could help provide caregivers with accurate cancer information to reduce misinformation found online and create a space in which caregivers can have positive interactions with other families who have a child with cancer. Social media–based interventions also have the potential for harmful online interactions; this should be minimized and monitored if incorporated into practice (Keith & Steinberg, 2017). The utilization and popularity of social media among caregivers of children with cancer as a way to exchange information and support presents a unique opportunity for the development of social media–based interventions. However, future interventions that are delivered via social media should consider caregiver privacy concerns (Keith & Steinberg, 2017). Future research could evaluate whether the use of social media is a helpful tool in improving feelings of perceived support among caregivers and whether it can be an effective delivery method for coping and stress management interventions to reduce caregiver distress.

The use of different study design methodologies would also be helpful. For example, a longitudinal, repeated measures design may be better to understand caregivers’ use of social media over time. Inclusion of larger, more diverse samples would aid better understanding of social media usage as would inclusion of non–English-speaking groups. Additionally, collecting qualitative data from caregivers (e.g., through focus groups) may also add to this knowledge by allowing deeper examination of caregivers’ reasons for using social media and actual information exchanged.

Acknowledgments

We acknowledge Paul Colte, Sara Turner, and Andrew Wilson for their assistance with questionnaire development.

Author Biographies

Elizabeth S. Nagelhout, MPH, a graduate research assistant and doctoral student in the Department of Family and Preventive Medicine at the University of Utah. Her background is in public health and her current research interests include familial melanoma and geographic differences in cancer outcomes.

Lauri A. Linder, PhD, APRN, CPON, holds a joint appointment as an associate professor at the University of Utah College of Nursing and as a Pediatric Oncology Clinical Nurse Specialist at Primary Children’s Hospital. Her research interests include supportive care and symptom management for children, adolescents, and young adults with cancer with attention to novel uses of technology to support patients in communicating their experiences.

Tara Austin, BA, BM, is a doctoral student in the clinical psychology program at Brigham Young University. Her background is in psychology.

Bridget Grahmann Parsons, MSPH, is a research study coordinator at Huntsman Cancer Institute. Her background is in public health and her current research interests include childhood cancers and familial melanoma.

Brantley Scott, MStat, works at the Utah Department of Health in the Office of Healthcare Statistics.

Emmie Gardner, MSW, LCSW, is the palliative care services director at Intermountain Healthcare. Her research interests include clinical care efforts that will enhance quality of life for patients with serious and chronic illness, regardless of age.

Holly Spraker-Perlman, MD, MS, is a pediatric oncologist and palliative care physician at St. Jude Children’s Research Hospital in Memphis, TN. She clinically specializes in pediatric palliative oncology and pediatric sarcomas. Her research interests include adolescent and young adult oncology (AYA), physician communication, and patient and family decision making.

Anupam Verma, MD, is an assistant professor and physician in the Division of Pediatric Hematology and Oncology at the University of Utah, an investigator at the Huntsman Cancer Institute (HCI), and a member of the Experimental Therapeutics program. As a researcher, Verma is involved in developing and conducting early phase clinical trials for children with leukemia and lymphomas. Her research focus is novel target drug development to advance cures for pediatric cancer.

Mark N. Fluchel, MD, is an associate professor of Pediatrics in the Division of Pediatric Hematology and Oncology at the University of Utah and Primary Children’s Hospital. His clinical interests include the treatment of all pediatric cancers, with a focus on leukemias, embryonal tumors of childhood and the histiocytic disorders. His research interests include the identification of disparities and barriers to care for pediatric oncology patients as well as the development of interventions designed to improve the care delivered to pediatric oncology patients from underserved communities.

Yelena P. Wu, PhD, is a pediatric and clinical child psychologist. She is an assistant professor in the Department of Dermatology, an Investigator at the Huntsman Cancer Institute, and a member of the Cancer Control and Population Sciences Program at Huntsman Cancer Institute. The overall goal of her research is to improve children’s health outcomes by promoting self-management and disease management.

Footnotes

Authors’ Note: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Primary Children’s Hospital Foundation, the Huntsman Cancer Foundation, and the National Cancer Institute of the National Institutes of Health K07CA196985.

ORCID iDs: Elizabeth S. Nagelhout Inline graphic https://orcid.org/0000-0001-9983-7975

Lauri Linder Inline graphic https://orcid.org/0000-0003-2638-4164

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