Dr Niraj Mistry is a third year Neonatology resident at SickKids Hospital who has over the last two years explored doctor and patient use of social media and recently presented on how social media can support families in their bonding with baby, team communication with families and family to family sharing. Neonatology 2.0: medicine meets MySpace is the most detailed review of web 2.0 impacts on families in hospital that I have seen. Beside showing evidence for family supports, the many slides demystifies technologies like Facebook for senior medical staff who may not use these technologies.
After recently presenting this review at the NICU Family Care Committee, Dr Nistry sat in on our meeting and we were excited and surprised by his imprompto decision to join the staff-family group to help impliment new e-communication strategies with families. I have quoted liberally from this presentation below as the full PDF is over 15 Mb and 84 slides. Dr Mistry's contact information is placed at the end of this entry should you wish to get the presentation.
Neonatology 2.0 begins with a literature review to answer 2 questions:
(a) What are the needs of parents who have infants in the NICU?
(b) What behaviors support parents with an infant in the NICU?
Six Primary Needs of Parents in the NICU:A literature review to assess how NICU parent use of information sources changed depending on their infants illness trajectory looked at 78 articles from 1990 to March 2008 to conclude:
(a) Accurate information and inclusion in the infant’s care and decision making
(b) Vigilant watching-over and protecting the infant
(c) Contact with the infant
(d) Being positively perceived by the nursery staff
(e) Individualized care
(f) Reassurance and a therapeutic relationship with the nursing staff
Four Supportive Behaviours To Meet These Needs:
(a) Emotional Support
(b) Parent Empowerment
(c) A welcoming environment with supportive unit policies
(d) Parent education with an opportunity to practice new skills through guided participation
Information & Communication Needs
• Most important needs are information and communication, which stem from a need to get control over the situation, inducing an active search for information
• Information seeking is a way of engaging in the care of their infant
• Knowledge supports the adaptation and coping process
• However, many parents hope to meet their information needs from the HCPs, many studies conclude that their needs are not met (eg. high time demands)
• Parents use other information sources to meet their information needs
Learning Curve
• Changing pattern in information use
• Learn the specific needs and responses of their child
• Complicated medical terminology becomes more ‘‘common’’ language, even for parents without post-school formal education
• Empowering parents to become more active participants
Adapted Information Strategies
• Having mastered the medical language, receive more extensive
explanations from the NICU staff
• Develop strategies and learn along the hospitalization time how to
best obtain information eg. being present during rounds and identify
who to approach for the best information
Communication styles
• One-way -> Two-way
• Asymmetrical -> Symmetrical
The placing of a webcam for viewing the new borne is seen as successful in promoting maternal bonding where parents are separated:
• Improves postpartum recuperation
• Decreases maternal anxiety/depression
• Improved reassurance
• Increased opportunities for family discussion
• Created a sense of involvement
• Fostered family tranquility
Webcams such as the Angel Eye webcam featured help anxious parents separated from their newborns and help reduce abuse:
• Premature and sick babies face a higher risk for child
abuse and pediatric depressive disorders vs. healthy
• Abuse is thought to stem from the failure to establish a
maternal-infant bond in the sensitive postpartum period
• Webcams allows remote viewing of NICU, enabling a
parent to be “virtually” present, which can reduce
parental anxiety and promote bonding
The presentation then reviewed several studies on Baby CareLink, one of the first parent and staff portals, which concluded that "families from populations that are considered vulnerable, have poorer health outcomes and consequently have more to gain, will use and benefit from collaborative
tools that keep them informed and involved in the care of their children" and another study that found:
• ...parents reported better communication, higher levels of satisfaction with care and tended to take their children home earlier
• Internet portals will be used by both Medicaid and non-Medicaid parents with children in NICUs to meet educational needs
• Suggests an unmet need with substantial clinical benefits if such collaborative technology could be widely deployed
The second half of the 84 slide presentation looked at the proliferation of social media and focuses on the explosion of Facebook groups, including many SickKids groups. The positives are seen to be:
• Efficient method to keep friends and family up dated with patient’s health and progress
• Receive encouragement and support
• Share personal experiences and disseminate beliefs
• Express gratitude towards providers and institution
The negatives are:
• Persistence: Ownership of information and data mining
• Searchability & Replicability
• Invisible audience & Disinhibition
• High levels of self disclosure
This section included graphic pictures of intubated and wired babies and concern about the appropriateness of families posting such images (Dr Mistry relayed that some parents on a SickKids facebook group asked other parents to take certain pictures down and they did).
Neonatology 2.0 concludes:
While gains in healthcare knowledge and medical technologies
have improved health outcomes, the effective use of information
technology holds the potential to further enhance care and meet the
information, communication and collaboration needs of our families
• Better outcomes, lower costs, and higher patient and provider
satisfaction will be the likely result
• Social Media are used regularly by patients, their families and
healthcare professionals and are here to stay
• There are many benefits to using Social Media to communicate, but
also inherent risks, that may not be as easily perceived
• Thus, we must be vigilant in reinforcing ethical principals and must
educate our patients and families to protect them from these risks
• We must also be mindful of our role as professionals and our responsibility to maintain appropriate boundaries
