A poster on the wall can remind staff of family centred care core concepts: respect, dignity, information sharing, participation and collaboration. But there’s nothing like a mom telling her daughter’s story to make those concepts come to life for health care professionals. The Stollery Children’s Hospital Family Talks program has facilitated 50 presentations in the past three years, featuring moms and dads co-presenting with staff or physicians.
Family Talks at the Stollery is one example of a Family Faculty program. Many other Canadian pediatric health centres also engage families to present: London Health Sciences Children’s Hospital and SickKids Hospital in Toronto both have family presentations at nursing orientation. London also has Family Faculty at Grand Rounds and at open staff forums. B.C. Children’s Hospital has family representatives speak at committee meetings, NICU Education Days, PICU Staff Orientation, pediatric conferences and brown bag Family Centred Care Education and Ethics sessions.
Regularly providing forums to share patient and family stories is a sign of commitment to family centred care. Planetree, an American patient-centred organization, suggests that hospitals commit to “routinely share patient, family and staff stories (positive and negative) with staff and the community, as well as information about suggestions that have been implemented.”
Telling stories reminds us of our humanity in this beautiful broken world. ~Terry Tempest Williams
Family Talks is a formalized program where families present their perspective of the hospital experience to inspire, motivate and educate staff and physicians. They remind clinicians about the critical component of humanity in pediatric healthcare.
Karen Klak is a family representative and lead of the Family Talks Working Group. She’s spoken a dozen times over the past two years about family centred care and specifically about her experience at the Stollery Children’s Hospital with her daughter Haley. Haley faced several medical challenges throughout her life – a tumor on her optic nerve as a toddler, a stroke at age eight and, finally, a tumor on her brain stem. She was a recipient of care at the Stollery for years and spent the majority of the last eight months of her life living at the hospital before passing away at age 11 in 2008.
Karen initially became a Family Talks speaker because she wanted to take the heart-breaking experience her family had with Haley and make something good come out of it.
“I want people to know that it is not only OK to talk about the death of a child, it is vitally important that we do. And to remember that a dying patient is actually a living patient until the moment she takes her last breath,” shares Karen.
Families speak to areas that are important and familiar to them. For Karen, it is palliative care and bereavement, and for others, it is disclosing diagnosis, ethical issues or the waiting room experience. They express their wisdom through stories, not data, so having a balance of research and anecdotal information is often essential to ensure acceptance of the information provided.
Scotty Jackson is a father of twins who were born premature and has co-presented twice with Neonatologist Dr. Juzer Tybekhan about Kangaroo Care. “It is important to balance the qualitative information given by families with the quantitative information from the medical staff,” explains Scotty, “and putting the two together is what makes it effective.”
Dr. Tybekhan concurs: “If you are simply relaying information or giving the latest research, not much will be retained, but having a parent there talking about why something works is what gets taken away.”
Dr. Tybekhan was Scotty’s twins’ Neonatologist, so he and Scotty know each other well. Other presentations occur with organizers who don’t necessarily know the family speakers, but a relationship is built during the preparation of the presentation. The Radiologists at Diagnostic Imaging put their trust in a family speaker when they asked for a Family Talks presentation at Radiology Grand Rounds. Karen Klak was the chosen speaker because her daughter Haley was followed regularly through Diagnostic Imaging (DI) during her life.
Dr. Ravi Bhargava, Site Lead, Radiology, at the Stollery Children’s Hospital initiated the presentation. “To me, family presentations are about quality assurance,” says Dr. Bhargava. “We have preconceived ideas that we are doing things right, but what we do is centred on patients. We need to have a feedback loop to have the full picture.”
Dr. Bhargava invited his entire staff to the session, and the 70 audience members included technologists, front desk receptionists, secretaries and porters in addition to nurses and Radiologists.
“I can explain what parents and kids are going through to staff, but it is different if they hear it from a mom or dad. Karen spoke from her heart about what was good and what could be improved,” Dr. Bhargava says. “The audience sat transfixed and spellbound.”
Karen felt honoured to speak to the group, as “it was only in preparing my presentation that I fully realized that Haley would not have been with us as long as she was without the work of the DI team. They had a tremendous impact on our family.”
Karen talked about the little things that make such a difference to patients and their families. “I relayed a story about Haley being embarrassed to be teased by a nurse about her underwear when she was wearing a gown that was open at the back, which made a normally compliant child a reluctant patient. We asked that Haley be double-gowned to avoid embarrassment the next time,” says Karen.
A few weeks after the presentation, Karen ran into a DI technician who let her know that all patients in the Pediatric Fluoroscopy Room are now automatically double-gowned. “Because I shared that story, a change was made immediately. When I heard that, it hit me that what we do by sharing can initiate change – and this was such a simple thing for staff to do,” says Karen.
Dr. Bhargava has seen evidence of change as well, “Staff are greeting parents differently, they are not afraid to go out to the waiting room to explain why there is a long wait time and they are making themselves available for follow-up questions.” He sees future opportunities to include families in the preparation of content for a DI website for families and in teaching simulations for residents. His own greatest lesson came from a photograph Karen shared of Haley when she was healthy. “We only see children when they are sick. I was so struck by that photo of Haley when she wasn’t ill. It really hit it home for me.”
For each presentation, Family Talks draws on an ever-expanding group of family speakers with a wide range of hospital experiences. Extensive preparation is involved, as family representatives meet with their co-presenting physicians and staff to prepare a cohesive presentation – one that unites clinical reality with the family story. The preparatory stage focuses on identifying key points and take-away messages for specific audiences.
For each presentation, speakers are carefully chosen using a list of criteria, and a Family Talks Working Group member then works closely with them to build a presentation. Family speakers are encouraged to share positive aspects of their experience first before delving into more constructive feedback. Any negative stories are encouraged to be framed as, “here is what happened, and here’s how I wish it could have been handled better.”
Evaluations are completed by audiences following each presentation. Comments confirm the value of Family Talks:
• It’s an awesome reminder how everything we do, big or small, can make a huge difference. (Nursing orientation participant);
• Having the data presented, followed by real life examples … was the perfect combination. (Physician);
• It is easy for us to view our work as common, forgetting what it is like for the parents. (Pediatric Resident);
• Hearing her speak changed the way I practice medicine (Pediatrician).
While Family Talks presentations serve as communication vehicles to deliver family centred care messages, they also have a deeper purpose for the speakers themselves. “Each time I speak, I am reminded of the impact that Haley had on the lives of so many, and she can continue to have an impact as long as I have the courage to share her story,” concludes Karen.
Ten Practical Tips – Creating a Family Faculty Program
1. Develop a pool of family speakers who have diverse experiences to build sustainability and avoid speaker burn-out.
2. Use a database to track speaking engagements, and details about the speakers’ interests and experience.
3. Document criteria to screen speakers for families who use their own personal experiences constructively, and can see beyond their own story.
4. Gather clear ‘key messages’ and objectives from the organizers, so audiences get the right take-away messages.
5. Using collaborative speaking (‘sharing the podium’) models family centred care. Families can present the ‘story’ side of the topic, and staff or physician co-presenters can present the research and best practice elements.
6. Create opportunities for co-presenters to meet ahead of time to prepare and form or solidify a relationship.
7. Encourage the sharing of anecdotes that illustrate the points of family centred care, rather than long, chronological stories.
8. Support speakers to be successful. Share logistics of the venue, public speaking tips, have support to create PowerPoints, arrange to greet speakers and schedule a debrief with them after the presentation.
9. Ask organizers to consider how they will be thanking the speakers, and express public recognition in newsletters or other modes of external communication.
10. Have evaluation mechanisms in place for all presentations, and share feedback with speakers in a constructive manner.