2. Enfª Prof Dra Nancy Moules
Professora Titular
Faculdade de Enfermagem
Universidade de Calgary- Canadá
3. What is a Family?
“A family is a group of individuals who are bound by
strong emotional ties, a sense of belonging, and a
passion for being involved in one another’s lives.”
Wright & Leahey, 2009, p. 50
4. What is Patient- and
Family-Centered Care?
“Patient- and family-centered care is an approach to
the planning, delivery, and evaluation of health care
that is grounded in mutually beneficial partnerships
among health care providers, patients, and families. It
redefines the relationships in health care.”
IPFCC, 2010
5.
6. Core Concepts of
Patient- and Family-Centered Care
Respect and Dignity
Information Sharing
Participation
Collaboration
8. 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.”
IPFCC, 2010
9. Participation
“Patients and families are encouraged and supported
in participating in care and decision-making at the
level they choose.”
IPFCC, 2010
10. Collaboration
“Patients and families are also included on an
institution-wide basis. Health care leaders collaborate
with patients and families 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.”
IPFCC, 2010
11. Family-Centered Care: The Beginning
1960s with consumer-led and family support movements
Head Start Program
Family Support Movement
1970s Family Support Movement grows
Family Resource Centres
Parent to Parent programs – focus on children with special
needs
1980s groundwork has been laid for genuine revolution in
healthcare
13. Family-Centered Care & Health
Care Reform
1990s documented research findings supporting new
policy and reforms
Family-Centred Care was evolving in pediatrics
Parallel movements were occurring in adult health
The Planetree Model of Care
Patient-Centred Care
Relationship-Centred Care
The Collaborative Family Healthcare
The Eden Alternative
14. Institute for Patient- and Family-
Centered Care (IPFCC)
Founded in 1992 by a group of health professionals
and parents who had been leaders in the family-
centred care movement of the 1980s
Focus:
Strengthening family/professional collaboration
Changing care in hospitals
Improving healthcare facility design
Transforming medical education
Advising on health policy
15. Patients & Families’ Focus
Experience of Care
• Information
• Respect/Listening
• Involvement
• Emotional Support
16. Health Care Professionals’ Focus
Technical Aspects of Care
• Clinical Expertise
• Technical Skill
• Competence
• Technology
17.
18. What do Patients and Families
want?
6 key attributes
Education and Shared Knowledge
Involvement of Family and Friends
Collaboration and Team Management
Sensitivity to Non-Medical and Spiritual Dimensions of
Care
Respect for Patient Needs and Preferences
Free Flow and Accessibility of Information
Shaller, 2007
“ Conceptual Model of Patient-Family Centred Care”
Wright, L. M.,& Leahey, M. (2009 ). Nurses and families: A guide to family assessment and intervention (5 th Edition) . Philadelphia: F. A. Davis Company. “ Families are big, small, extended, nuclear, multi-generational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks, as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire for mutual support … A family is a culture unto itself, with different values and unique ways of realizing its dream; together, our families become the source of our rich cultural heritage and spiritual diversity… Our families create neighborhoods, communities, states, and nations.” – Task Force on Young Children and Families, New Mexico Legislature (as cited in Johnson, 2000).
Institute for Patient and Family Centered Care Patient- and family-centred practitioners recognize the vital role that families play in ensuring the health and well-being of infants, children, adolescents, and family members of all ages. They acknowledge that emotional, social, and developmental support are integral components of health care. They promote the health and well-being of individuals and families and restore dignity and control to them. Patient- and family-centred care is an approach to health care that shapes policies, programs, facility design, and staff day-to-day interactions. It leads to better health outcomes and wiser allocation of resources, and greater patient and family satisfaction. “ In family-centered care […] patients and families are treated with respect and dignity. Communication and relationships are important aspects of the care process. Information is shared openly and candidly. Patients and families have opportunities to participate in care and decision making in ways they choose. Connections to natural sources of support and peer support are facilitated. Finally, patients and families participate in policy and program planning, implementation, and evaluation.” (Johnson, 2000, p. 138)
IPFCC, 2010
Johnson, 2000 (the history as outlined by Johnson is comprehensive, but primarily focused on the USA) 1960s In 1962, President Kennedy outlined rights of consumers of health care and education (rights to safety, information, choice, input) this led to the development of the Head Start Program in the USA (similar programs exist in Canada) to support and meet the educational needs of children, specifically those living in poverty and those with special needs Community programs and family support programs were beginning to emerge, bringing parenting education and peer support programs to communities The Family Support Movement was primarily focused on supporting and educating parents in order for them to care best for their children at home My story 1970s Family Support Movement grows as Family Resource Centres begin to develop in communities to support families in their parenting roles; establishment of Parent to Parent programs focused on supporting families with children with special needs (community-based organizations that provided relationship-based, volunteer, peer support to families) Families with children with special needs are a huge driving force to pushing the Family Centred Care Model forward. The advancement of technology has children surviving into childhood and beyond when, only a few years before, they would not have survived past the first few days of life. Families looking for support at home (as opposed to permanently living in hospitals) and in the community to care for these very special children. 1980s In the early 1985, the Maternal and Child Health Bureau funded a survey through the Federation for Children with Special Needs to ascertain the degree to which parents were involved in planning services for their special needs children revealed few jurisdictions involved parents created legislative change in the USA and the “Education of the Handicapped Act” was amended in 1986 to include the “importance of collaborating with families in maximizing the health and development of these young children and coordinating services across all agencies in accordance with families’ goals and priorities” (p. 141)
Turnbull & Summers (1987, p. 12) captured the enormity of the change taking place in health care: “ Copernicus came along and made a startling reversal — he put the sun in the center of the universe, rather than the earth. […] Visualize the concept: the family is the center of the universe, and the service delivery system is one of the many planets revolving around it. Do you see the difference? Do you recognize the revolutionary change in perspective? …This is not a semantic exercise — such a revolution leads us to a new set of assumptions and a new vista of options for service.” (as cited in Johnson, 2000, p. 142 as I couldn’t access the original source).
Johnson, 2000 Investigators beginning to document confidence and empowerment they experienced by parents who were included in their child’s care (Dunst & Trivette, 1996; Dunst, 1997) Evidence of the effectiveness of family-centred care approaches—reduced use of emergency departments and fewer re-admissions (documenting cost-effective approaches) (Forsythe, 1998; Solberg, 1996; Talbert-May, 1995) Planetree model for patient centered care…non profit organization that was founded in 1978 by Angelica Thieriot after a hospital experience. Care model focuses on “healing and nurturing body, mind and spirit”. “A patient centered, holistic approach to empower patients and families through exchange of information and partnerships with caregivers” Patient Centered: 7 dimensions: respect for patient values, preferences and needs; coordination of care; information and education; physical comfort; emotional support, involvement to family and friends and continuity and transition Relationship-Centered care: interaction is central…community is central Collaborative early 1990s view patient, family, community and provider as equally important. Eden Alternative : approach for elder care in long term care facilities; emphasizes patient’s’ active participation
(The Canadian spelling is “family centred care”, but the title of the institute is the USA spelling) From Johnson, 2000
Shaller, 2007
Health care professionals tend to focus on the Technical Aspects of Care Shaller, 2007
Dale Shaller, Shaller Consulting October 2007 Systematically reviewed 9 models/frameworks to uncover 6 key attributes of patient-centred care Education and shared knowledge • Involvement of family and friends • Collaboration and team management • Sensitivity to nonmedical and spiritual dimensions of care • Respect for patient needs and preferences • Free flow and accessibility of information
FCC is not intended for care to be directed by families, but care plans made through collaboration between health care professionals and patients/families FCC is not intended for families to care for their loved ones without the support of health care professionals. Health care professionals should also be caring for/supporting the family of the patient.
References Johnson, B. H. (2000). Family-centered care: Four decades of Progress. Families, Systems & Health, 18 (2), 137-156. Shaller, D. (2007). Patient-centered care: What does it take? The Commonwealth Fund, October, 74. (publication number 1067) Wright, L. M.,& Leahey, M. (2009 ). Nurses and families: A guide to family assessment and intervention (5 th edition) . Philadelphia: F. A. Davis Company.
