Bereavement Committee retreat

The work of SickKids Bereavement Committee was shared at a June 29 retreat. The Bereavement committee has since the summer of 2009 reviewed all procedures relating to death at SickKids Hospital. The need, as identified by the committee, is for a hospital wide culture of support for healthy grieving, palliation and end-of-life care. Thanks to parents Mitch Blum and Catherine Fenton for working with a dozen or so staff over almost a year to review palliative and bereavement policy and procedures, hospital education, resource development, clinical practice and research. Margaret Keatings hopes to publish recommendations of the Bereavement Committee by September 2010.

NICU family care committee works on communication and parent to parent support

Three subcommittees have started on the NICU Family Care Committee to explore parent peer support, technologies and use of walls and space. The technology group met over a conference call and will work on proposals to setup webcams on isoletes so parents can see their children when they are not in the NICU and offering email communication with some doctors (happens informally now) to understand the type of questions asked and the benefit of this additional communication tool. We are also building a website to share projects, resources and generally expand the visibility of the advisory group. The parent peer support group also had their first meeting to share examples of successful programs, principally in other Canadian NICU settings.

2010 Patient Safety Symposium: Furthering Parent Involvement in Patient Safety

June 10th I spoke with parents Denise Clayton and Jane Ford at the 6th Annual Patient Safety Symposium about expanding parent participation in patient safety. I was asked to join the Partners in Patient Safety Committee which has an outstanding record of joint staff and parent work on safety initiatives. One of my particular interests is the Required Organizational Practise of Accreditation Canada related to "Client and Family Role In Safety" (see page 9 of the ROP document), specifically, that "Staff uses written and verbal approaches to inform and educate clients about their role in promoting safety".

CFAN Winnipeg workshop 2010

I will attend the annual Canadian Family Advisory Network Workshop on October 17 in Winnipeg and am very honored that CFAN member Ruth Hartanto invited me to speak during "Sydney's Talk", named after her daughter Sydney. I earlier linked to Ruth's beautiful sharing of Sydney's life and death in the Globe and Mail in April. This year's CFAN workshop theme is "Branding and Blogs: the power of using media tools in family centred care", which is most topical. This workshop will be an incredible opportunity to meet and share ideas with veteran parents working with staff in hospitals across Canada.

2010 Sasha Bella Fund awards: CCCU nurse Elena Nikolsky and social worker Ruta Niedra

In April, two recipients were selected by peers and myself for Sasha Bella Fund awards for exemplary family-centered practice in the Labatt Family Heart Centre. On May 11 at the yearly Nursing Excellence Awards, CCCU nurse Elena Nikolsky received the Sasha Bella Award for Excellence in Family Centered Care for extending her clinical nursing practice to a Registered Nurses Association of Ontario research fellowship focused on parent supports in the ICU, specifically nurse sensitivity to the diversity of family coping styles. On June 10, as part of the Dr. Beverley Antle Legacy of Hope Award Ceremony, social worker Ruta Niedra was chosen to receive the first Sasha Bella Fund award given to an allied professional for Excellence in Family Centered Interprofessional Care. Ruta has served families and supported and mentored staff at SickKids for almost 25 years in a very special way, as attested to by an unprecedented nine letters of supports (see extracts). Currently on Cardiac Transplant, Ruta was instrumental in setting up the Labatt Family Heart Centre weekly parent coffee hour and a first LFHC Family Education Day held in 2009.

Neonatology 2.0, Medicine Meets Myspace - Dr Niraj Mistry

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) 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

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:

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

e-Patient Connections (U.S) and Education Day for Healthcare Communicators (Toronto)

A new seven minute video summing up the 2009 e-Patient Connections Conference is a fast paced intro to patients engaging other patients and health care providers, in this case face to face, but typically from their computers using social media and blogs to present their personal stories and points of view and articulated needs while they conduct research, chat and network.

"KruResearch — March 24, 2010 — A health care revolution is underway. But it's not being driven by a breakthrough drug or policies coming out of Washington, DC. It's being led by empowered patients who are seeking information, sharing data, and selecting their own treatments more than ever before. At e-Patient Connections, a diverse community of health communicators and marketers gathered to explore innovative ways to reach and engage today's digital health consumers."

KruResearch Youtube channel has more videos from the 2009 conference.

The Toronto Academic Health Science Network's Education Day for Healthcare Communicators held on April 30, 2010 featured health care professional communicators including Lee Aase, manager of Syndication and Social Media for Mayo Clinic's patient, family and staff blog and medical and scientific news blog and Louise Kinross, communications manager at Bloorview Kids Rehab and producer of BLOOM, a magazine on parenting children with disabilities that includes a blog, website and monthly e-newsletter.

SickKids paediatric resident Niraj Mistry presented Web 2.0 at Work: Building Healthy Hospital Policy, a collaboration with Shelley Romoff of Public Affairs, Arlette Lefebvre of Psychiatry and Janice Campbell of Quality and Risk Management.