Patient and Family

Centered Care in Pediatric

Pulmonary Center Settings
Gretchen Cunningham
Taylor Gonzalez
Kaitlin Hoban
Kate Leventry
Sonnie Mayewski
Suzanne Stern-Brant
Skylar Sularz
Patient and Family Centered Care
Core Concepts

1. 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.

2. 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.

3. Participation
Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.

4. Collaboration
Patients, families, health care practitioners, and leaders collaborate in policy and program development, implementation, and
evaluation; in health care facility design; and in professional education, as well as in the delivery of care.
Dignity and Respect
Things that were done well:
1. When dealing with Native populations, cultural perspectives
and values are considered: expanding our understanding of
the family to include Clan and larger community structures,
the role of indigenous healers, and respect for cultural
boundaries (UNM Cystic Fibrosis Center).
2. When entering clinical notes, we are required to list at least
one example of client/family self-efficacy. We utilize the
Social Work professions strength-based approach to guide
our view of each patient and family. This insures a positive
perspective regardless of a patients or familys level of
ability (UNM Cystic Fibrosis Center).
3. We use a strengths-based approach and not only connect
families with resources but help them best use their existing
resources (University of Florida).
Things that could be improved:
1. Reframe our interpretation of noncompliance, focusing on
inherent adolescent developmental risk factors and finding
creative ways to support client and family self-efficacy as a
protective factor. (UNM Cystic Fibrosis Center)
2. Evaluate the vocabulary we use with families in order to
sound less judgemental and more supportive, replacing
words like noncompliance with those such as
nonadherence (University of Florida).
3. Avoid using abbreviations or terminology that the families
may not be aware of. It is Important to thoroughly explain
what you are trying to communicate to make the family feel
confident in their childs care (UAB CF Center).
Information Sharing
Things that were done well:
1. Utilize an electronic recording system to address patient and
family questions and concerns promptly.
2. In response to family feedback at Seattle Childrens, nursing
shift handoff has moved to the bedside so that families can be
more aware of information and the plan for their child as well as
contribute their input.
3. Health Facts For You: As a follow up to therapies,
medications, and equipment that families/patients are exposed
to during admission or in outpatient clinics, documents specific
to what was discussed are broken down and provided as a
resource for families going home (American Family Childrens
Hospital).
4. If a family chooses to register for MyChart, they are able to
view their childs medical records and send messages directly to
the physician (University of Florida).
Things that could be improved:
1. At UAB many of our clinics are overbooked. When the clinics
are overbooked this does not allow adequate time to effectively
communicate with families. This is also something that can be
improved on at the American Family Childrens Hospital.
2. At Seattle Childrens Neurology clinic, there is a lot of lag time
between when procedures are done (such as an MRI or EEG)
and when the patients and family get an opportunity to learn
the results which often causes anxiety and worry.
3. Staff knowledge and utilization of interpreter services
(American Family Childrens Hospital).
Participation
Things that were done well:
1. UAB Cystic Fibrosis team includes families in pre - visit planning
by calling to identify the families concerns or questions prior to
the office visit
2. We have recently started an online support group, where
caregivers can interact with each other as well as ask questions
regarding their childs care (University of Florida).
Things that could be improved:
1. Decrease judgment placed on parents for minimally
participating at clinic visits.
2. At Seattle Childrens there is no standard for asking patients
and families how involved they want to be in their care and
decision making.
3. Place a higher value on self-determination and provide as much
education as possible while encouraging patients and their
families to make their own choices (University of Florida).
4. Facilitate a smoother transition as patients approach the age of
18 and start legally making their own medical decisions
(University of Florida).
Collaboration
Things that were done well:
1. Seattle Childrens Hospital has a Family-Centered Care
Program. Anyone can request a consult from family
ambassadors for a project or planning committee.
2. For our patients with complex healthcare needs, it is common
to have a care conference at specific times during admission
which include the family and the entire healthcare team to
touch base regarding ongoing care coordination and to make
sure that the patients and familys goals/needs are being met.
(American Family Childrens Hospital)
3. At UAB a few of the doctors brought parents to present with
them at our weekly PPC classes. Involving the families in our
PPC education has helped reinforce Family Centered Care in
our training.
4. The topics of discussion in video chat support groups/webinars
(which included parents, physicians, and social work trainees)
were chosen and led by the parents (University of Florida).
Things that could be improved:
1. When issues regarding hospital policies are up for discussion,
families could be directly involved in the conversation or
offered surveys about their feelings on the issue (University of
Florida).
2. When transitioning patients from Pediatric to Adult Clinics,
better and continued communication between team members
is needed. Best practice suggests that successful transitions
require the support of family members, trusted pediatric
providers and lesser known adult providers, working as a team.
UNM Cystic Fibrosis Center