Dr Barbara Blackie

Third QPEM Conference 11-13th of January 2019

Patient and Family Centered Care of Children in the Emergency Department

I do not have any relevant financial relationship with commercial interest to disclose

DISCLOSURE

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At the end of the presentation, the attendee will be able to:

Learning Objectives

Discuss the importance of involving family and patient in all care provided in the ED

Describe the challenges faced with implementing in a multicultural environment

Family Centered Care

• Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider(s)

• An approach to the planning, delivery and evaluation of health care that is grounded in mutually beneficial partnerships among patients, families and health care partners

Matern Child Health J. 2012 Feb; 16(2): 297–305

https://www.edwinno.com/edwinno-publications/my-writings/family-quotes

Family Centered Care is….

• Recognizing that the family is the constant in a child's life, while the service systems and personnel within those systems fluctuate

• Facilitating child/family/professional collaboration at all levels of service

• Sharing with the family, on a continuing basis and in a supportive manner, the best information regarding their child's health care

• Understanding and incorporating the developmental needs of infants, children, adolescents, and their families in health care delivery

• Recognizing family strengths and individuality and respecting different methods of coping

http://www.sickkids.ca/Nursing/Education-and-learning

Family Centered Care is….

• Recognizing and honouring diversity, strengths and individuality within and across all families, including racial, spiritual, social, economic, educational and geographical diversity

• Encouraging and facilitating family-to-family support and networking

• Implementing comprehensive policies and programs that provide support to meet the diverse health care needs of families

• Designing accessible service systems that are flexible, sensitive, and responsive to family-identified health care needs

http://www.sickkids.ca/Nursing/Education-and-learning

Family Centered Care

• FCC is considered the standard of pediatric health care by many clinical practices,

hospitals, and health care groups

• Despite widespread endorsement, FCC continues to be insufficiently implemented into

clinical practice

https://thenounproject.com/term/confusion/123633/Matern Child Health J. 2012 Feb; 16(2): 297–305

• Patient- and family-centered

care is working "with"

patients and families, rather

than just doing "to" or "for"

them

Family Centered Care

Picture Title

http://www.ipfcc.org/about/pfcc.html

https://www.augustahealth.org

Core Concepts

Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices; patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care

Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful; patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making

http://www.ipfcc.org/about/pfcc.html

Core Concepts

Participation. Patients and families are encouraged and

supported in participating in care and decision-making at

the level they choose

Collaboration. Patients, families, health care practitioners,

and health care leaders collaborate in policy and program

development, implementation and evaluation; in research;

in facility design; and in professional education, as well as

in the delivery of care

http://www.ipfcc.org/about/pfcc.html

Advantages

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Greater adherence to care plans

Improved patient and family satisfaction

Lower health care costs

Improved staff job satisfaction

• A child diagnosed with a brain tumour• The doctors scared me with their talk of possible

death. My final exams were due but they dıd not even let me finish the semester

• I was never provided with any information about the disease. Everyone was very worried how I would pay rather than my happiness

• The doctor never talked with me before the surgery; it was just pay and go. The nurses never smiled and never asked me how I was doing before the surgery

• After the surgery I lost the ability to hold my eyelids. I was not able to see or walk in balance. During my stay, nurses tied me up in bed so it was easier to control me

• The doctor was never there. He never called or emailed after the surgery

• This is my story: They ruined my life

What is wrong with this story?

https://www.istockphoto.com/photo/praying-for-sick-teenager-gm499210079-39459694

• Ask patients how they would like to be addressed; introduce yourself

• Be attentive to patients needs during their visit, be welcoming and genuine in your interactions

• Use language they can understand and avoid medical speak

• Listen without interruption; HEAR what they say and don’t say

• Don’t dismiss anything that patients and families tell you

• “Hi, I am XXX, and will be your nurse/doctor/physio today”

• “What concerns do you have about your child today”

• “Please ask any questions you might have, and if I can’t answer them, I will find someone who can”

• Use opportunities to provide small snippits of education, reassurance, encouragement

• NEVER be rude or dissmissive

Patients and Families Should be Treated with Respect

• Use decision aids• Mutually agree on treatment goals• Develop a shared agenda• Promote self management, family

supported management• Don’t separate families from patients,

eliminate visiting hours• Show them what you have documented,

show them test results, Xrays

• “We have an information packet/pamphlet on this illness, I can give you to read and then answer any questions you have”

• “Is this what you had hoped to find out from your visit today?”

• “This is the treatment plan, what can we do to help make sure this happens? Do you have some help at home for this? Do you understand all that we have told you?”

• “Let me get a better chair, one that reclines so you can rest too”

• “The Xray is completed, would you like to see the image and I can explain what we have found?”

Patients and Families Should be Partners in all Aspects of Their Care

• Include families in institutional committees

• Involve families in process redesign, celebrations, events in your center

• Illicit family feedback and allow them to make suggestions on improvement

• Provide opportunities for families to contribute to patient education material

• “The ED is making some renovations, how do you think we can improve?”

• “We are revising our handout/pamphlets, would you be interested in reading some of them and providing us with feedback on how useful they are, or on what is missing as a parent?”

• “we have established a quick survey on this tablet, about your visit here, would you be interested in helping us improve by taking just a couple of minutes to complete?”

Patients and Families Should Contribute to the Development and Improvement of Health Care Systems

• Have trainees shadow families through their health care visits

• Include patients and families in teaching• Include patients and families in assessing

trainees• Conduct patient centered bedside rounds

• “The nursing students (paramedics/medical students/residents/fellows) working here today: would you be able to comment on their provision of care, so we can provide them with feedback on how to improve?”

• “We have XXX students working here today, we would like to ask you after your visit what you thought about them so we can help them become better practitioners. Would that be ok?”

Patients and Families Should be Partners in the Education of Health Care Professionals

What TO do

Principle: Staff respects and supports a family’s desire to participate in the care of their child at the level they choose or are able.

"During a procedure that required inserting an IV into our son's head, a nurse noticed how difficult it was for me to watch and be there. I felt as though in order to be a 'good mother,' I needed to stay in the Procedure Room with Jonathan.The nurse told me I could leave for a few minutes until the IV was in, and then I could return to hold and comfort my son.

I could not have left without her encouragement, but it actually was the best thing for me and for Jonathan, and I thank her to this day for recognizing my pain and my limitation."

— Grace Kane (https://www.chop.edu/stories/family-centered-care-our-families-words)

What TO do

Principle: Staff make a difference by providing compassion and support to children, adolescents and their families in healthcare delivery."There was a unit clerk on the PICU who would bring a smile to my daughter's face each morning by greeting her through the intercom, saying, 'Good morning Jennifer. I hope you have a good day today!'— Tracy Board"Many behind-the-scenes staff have had such an impact on my daughter’s experiences at CHOP. My daughter’s phlebotomist, Edam, has worked with her over the years during monthly lab draws to ease anxiety and alleviate stress. She is always very upbeat and has a unique way of distracting her.And Alma, the cashier in the cafeteria, always asks for my daughter and she makes a fuss over her when she sees her."— Jennifer Loftus

https://www.chop.edu/stories/family-centered-care-our-families-words

What TO do

When the patient’s voice is heard“During another hospitalization, we had a very different experience upon admission to a local, regional hospital that had a very patient-centered culture firmly in place. We thought that his original spine infection was recurring. The floor nurse greeted us and asked how often I thought I would be there. I told her that I would be “moving in” with him.Imagine how surprised I was when she said, “Then we will put him in a double room so that you will have your own bed and can get sleep at night also.”

I was accustomed to sleeping on straight back chairs in other hospitals. Next, she let us know that his medical chart was available to us at the nursing station and we were free to take it to his room to review it. Furthermore, she would answer any questions, and make any notations or any additions that we had. We were equal members of his health care team!”

What TO do

When the patient’s and family perspective is sought AND heardA 6 year old with a fractured radius and ulna presented to the ED; the family were provided with education on what the injury meant, were shown the xray, a discussion was had on how to correct it using procedural sedation in the ED; dad had many worriesThe child’s pain was managed throughout the visit, consistent with a PainFree ED; the child had an IV inserted, was sedated and the fracture reduced and casted effectively with no distress on the child’s partThe father elected to stay in the room while everything took place, and was included in the process by holding the child’s hand until he went to sleep, was told what was happening as the procedure took place, and was right by his child as he awoke

When the family left, he said he had never seen anything like it, and wanted all of his children to come and be seen by the doctors and nurses in the ED; even if nothing was wrong!!

Personal experience, Sidra ED

Questions?