Parents' Online Portrayals of Pediatric Treatment and Research Options (original) (raw)
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How Parents of Children with Cancer Seek Information Through Online Communities: A Netnography Study
The Journal of Pediatric Research, 2019
Pediatric cancers are increasing daily across the world (1). Pediatric cancer, which may occur in all ages of childhood, is a chronic disease requiring high-risk decisions depending on diagnosis and treatment (2). Therefore, it causes physical, psychological, social, and economic changes in the lives of both children and parents (1-5). Although parents receive supportive information and information about treatment from health professionals, they also seek more information from other sources about the cancer process (6). In today's modern world, the Internet has become a new information source for parents of children with cancer. Online communities also provide parents of children with cancer with an opportunity to create and use online social networks in order to gain information and support from people with similar experiences (7). Health-focused online communities are defined as online platforms in which patients and families, who suffer
Parents’ views on information in childhood cancer care
European Journal of Oncology Nursing, 2011
The aim of the study is to highlight parents' views on information in childhood cancer care. A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child's illness. If the parents' needs were fulfilled, they were better equipped to handle the illness of their child, which is totally dependant on how the matter of information is dealt with. Information is a complex and demanding issue for the persons involved and the families' views were divergent in this area. Sometimes they seemed to obtain the information successfully and sometimes there were great problems in this respect. Therefore their preferences must be considered. There has to be an improvement from the aspects of what, when and how information is provided. The major findings of this study indicate that the families need better support and more distinct instructions to be able to cope with the situation.
Journal of Empirical Research on Human Research Ethics
Knowing why parents decide to consent or dissent to participation of their child in pediatric clinical research is essential to further the ethical debate concerning pediatric research. We performed this qualitative focus group study with 16 parents from the Dutch general public to explore their perspectives on decisions to participate in pediatric clinical research. Group discussion revealed the following: Parents conflate clinical research and clinical care, they do not grasp the trajectory of pediatric drug development, their protectiveness matches current research guidelines, and benefit for their child is the most important factor in their decision. Research professionals should be aware of the knowledge gap of parents, the pitfalls of jargon, and unintended false expectations.
The Journal of pediatrics, 2017
To explore parental attitudes regarding the return and disclosure of research findings in pediatric cancer trials over time. Two surveys were set up to evaluate the stability of parental attitudes. One survey was carried out among 581 parents whose child was diagnosed recently (response rate, 53.5%). A second, population-based survey was set up with a time interval of 4 years between first cancer diagnosis and survey in which 1465 parents were included (response rate, 55.1%). Almost all surveyed parents stated a parental right to receive aggregate research results. Fifty-five percent of the parents who recently participated in trials and 62% of those asked after a multiyear time interval thought that disclosure of individual findings is in any case necessary (P = .0034). The respondents wanted to restrict the duty to disclose study results to the child according to their notion of the child's well-being, composed of child's maturity, impairment of the parent-child relationsh...
Information seeking behaviors of parents whose children have life‐threatening illnesses
Pediatric Blood & Cancer, 2010
ObjectivesFor children with life‐threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e‐health literacy of Internet‐users.Study DesignCross‐sectional, telephone survey of 129 parents whose children are in a pediatric palliative care program in Florida.ResultsFour out of five parents report that they use the Internet, and 64% of Internet‐users use it daily. Parents who never use the Internet, versus parents who do use the Internet, are predominately Hispanic (50%) and have less than a high school education (64%) (P ≤ 0.023). Internet‐users have high levels of e‐health literacy; however, they are not confident or are unsure about the quality of information on the Internet. Not having graduated from high school was associated with a decrease in e‐health literacy and using the Internet as the primary information source (vs. doctor as primary source) was associated with an increase...
Cancer Nursing, 2015
Background-Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. Objective-This study examined the feasibility of using Facebook ads to recruit parent caregivers of children and teens with cancer. We also explored the feasibility of web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. Methods-Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. Results-The advertising campaign generated 3,897,981 impressions which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for web-based and electronic research methods. Participant survey responses are reported. Conclusion-Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. Implications for Practice-Web-based methods (e.g., Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families. More than 11,500 children are diagnosed with cancer each year in the United States. 1 Despite medical advances, an estimated 1,350 children younger than 15 years old will die from cancer in 2014. 1 Research is crucial to improve the lives of children living with and dying from life-threatening conditions such as cancer, but recruitment challenges serve as
BMC Medical Informatics and Decision Making, 2012
Background: The quantum increases in home Internet access and available online health information with limited control over information quality highlight the necessity of exploring decision making processes in accessing and using online information, specifically in relation to children who do not make their health decisions. The aim of this study was to understand the processes explaining parents' decisions to use online health information for child health care. Methods: Parents (N = 391) completed an initial questionnaire assessing the theory of planned behaviour constructs of attitude, subjective norm, and perceived behavioural control, as well as perceived risk, group norm, and additional demographic factors. Two months later, 187 parents completed a follow-up questionnaire assessing their decisions to use online information for their child's health care, specifically to 1) diagnose and/or treat their child's suspected medical condition/illness and 2) increase understanding about a diagnosis or treatment recommended by a health professional.
Online information as support to the families of children and adolescents with chronic disease
Revista gaucha de enfermagem, 2017
To describe the use of online information as support to families of children and adolescents with chronic disease. This is an integrative review conducted in August 2015, with an online search in the following databases: PubMed, Biblioteca Virtual em Saúde, Cumulative Index to Nursing & Allied Health Literature, and Science Direct. Twelve studies were selected from the 293 studies found in the databases. After analysis, the following two categories emerged: Potentialities of the use of online information by families of children and adolescents with chronic disease, and Weaknesses of the use of online information by families of children and adolescents with chronic disease. The internet offers a wide range of information that helps families manage the care of children and adolescents with chronic diseases, but it also has characteristics that need to be analysed.
Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment
Journal of Pediatric Oncology Nursing, 2019
Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children’s diagnoses and treatment, the family’s quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell....