Could Helping Parents Achieve Being a Good Parent to My Very Ill Child be Effective Bereavement Care? Pamela S. Hinds, PhD, RN, FAAN The William and Joanne Conway Chair in Nursing Research Director, Department of Nursing Research and Quality Outcomes Professor, The George Washington University Washington, DC
Children s National Health System Division of Nursing, Department of Nursing Research and Quality Outcomes, Center for Cancer and Immunology, Center for Translational Science, the Pediatric Palliative and End-of-Life Care and Research Special Interest Group, and the Department of Pediatrics, the George Washington University
Objectives Define the construct that parents have named being a good parent to my seriously ill child in treatment decision making studies Identify behaviors of health care professionals that positively influence the likelihood of a parent achieving his/her internal definition of being a good parent to my seriously ill child
Objectives Contexualize this research program within the significant end-of-life research questions being addressed through the leadership of the NINR
Treasured Colleagues Tennessee: Jami Gattuso, RN, MSN Linda Oakes, RN, MSN Judy Hicks, MSW DK Srivastava, PhD Michele Pritchard, PhD, RN Nancy West, RN, MSN Wayne Furman, MD Justin Baker, MD JoAnn Harper, FNP Brent Powell, MDiv Lisa Anderson, Mdiv California: Sheri Spunt, MD Washington, DC Mia Waldron, Med, MSN Tessie October, MD Kathy Kelly, PhD, RN Susan Keller Cheryl Reggio, RN Shana Jacobs,MD Vanessa Madrigal, MD Debbie LaFond, DNP, PNP Suzanne Feetham, PhD, RN, FAAN North Carolina Kathy Knafl, PhD, FAAN Pennsylvania: Scott Mauer, MD Chris Feudtner, MD, PhD
End-of-Life Care Decisions: Why do they matter? Because it is our best chance to provide preventive care to the family: 1/4 to 1/3 of parents of the 50,000 affected nuclear families report significant marital distress >1/3 of siblings report adjustment problems Parents of deceased children are significantly more likely to die younger, leave employment or experience a first psychiatric hospitalization than parents who have never lost a child Allow families a chance to prepare and potentially diminish regret
Clinician Access to the Dying Child and the Family Majority of children and adolescents die in health care facilities Majority of surviving families do not have access to bereavement care Clinicians in health care facilities need to be offering low burden, low cost, sensitive and effective interventions that contribute to the well-being of bereaved survivors.
End-of-Life Decision Making Studies: Why We Do Them As clinicians, we believed we did not do well by families making end-of-life decisions AND As clinicians and clinical investigators, we believed that end-of-life decision making was exquisitely important to do well for all involved
Deciding as a good parent would Deciding as a good parent would Avoiding negative outcomes Being helped by my faith Nothing more to do Still trying for cure or longer life Wanting time left to be good Wanting to help others Deciding as my child prefers Trusting Staff & Being Supported by Them 4 descriptive qualitative pediatric end-of-life treatment decision making studies in oncology Most commonly named factor influencing parental decision making (84%)
Model of Pediatric Quality of Life at End of Life: Dual Focus on the Dying Child and the Family
What is being a good parent to my seriously ill child? Please share with me your definition of being a good parent for your child at this point in your child s life.
Defining the concept of Being a good parent to my seriously ill child The good parent is adequately knowledgeable about the child s medical situation to make informed and unselfish decisions, advocates for the child with staff, has sufficient strength to remain at the child s side no matter how difficult the circumstances, provides the basics of food, shelter, clothing and positive health, teaches the child to make good choices, to respect and have sympathy for others, and to know a Greater Being to be certain that the ill child knows he or she is loved by the parent.
Even first time parents: Have a clear internal definition of what it means to be a good parent to my seriously ill child.
Validation Steps: Being a Good Parent to My Seriously Ill Child 1 descriptive confirmatory study of the definition and ranking its characteristics involving parents (n=42) in the PICU Differences in rankings by couple vs. single mom; no difference by race Funded by KL2 award to T. October 1 descriptive confirmatory study (n=200 parents) in critical care units at one urban pediatric hospital Most highly ranked characteristic: Making sure my child feels loved Funded by an R01 awarded to JC Feudtner
Feasibility and Acceptability of Soliciting and Using the Good Parent Definition in Real Time Longitudinal design T1 T2 T3 T4 T5 Screen and consent Parent Interview Staff Interview Staff Feedback 10 items Parent Feedback 10 items 3 items
Parent Acceptability, Feasibility and Satisfaction 18.5% of eligible parents declined to participate no parents withdrew; n0 parents indicated harm by participating All parents indicated satisfaction on all 10-items with the decision process and with study participation (agree/disagree) at the time of the baseline interview and at the follow-up interview 39 of 48 indicated positive reactions 1 of 48 indicated timing was difficult 9 indicated speaking of being a good parent helped them to realize that they had achieved their definition
Clinician Strategies that Help Parents Achieve Their Definition Clinician Strategy Concluding All That Can Be Done is Being Done Sensing Staff Respecting Me and My Decision Percent of Parents Reporting 64 33 Staff Comforting Me and My Child 27 Staff Knowing our Needs 27 Being Pleasant 22 Coordinating Care Transitions 13 Asking about our Faith 13 Giving us the Facts 11 Not Quitting on Us 13 Telling Us We Are Good Parents 10 Not Forgetting Us When We Leave 6
Conceptual Model Changes and the Current Study (NR015831)
Emerging Construct (NR015831) Preventative Care At End of Life
Tension with End-of-Life Decision Making in Pediatrics Being a Good Parent to My Seriously Ill Child Being a Good Ill Child/patient Being a Good Doctor to my Seriously ill Patient Being a Good Nurse to my Seriously ill Patient
Concept Definitions Being a Good Child during illness: seeking to cooperate respectfully with others (most especially family), though recognizing how difficult this can be and being considerate so to relieve the burden of the illness and its treatment on family even while recognizing that the illness situation is serious and may require helping family to prepare for his or her death. Being a Good Patient during illness: a willingness to do as clinically requested and being committed to trying to be adherent to the recommended care while trying to maintain a positive outlook as part of looking out for the wellbeing of self and others such as clinicians, family and friends.
National Institute of Nursing Research Office of End-of-Life and Palliative Care Research Dr. Jeri L. Miller Dr. Karen Kehl Dr. Lynn Adams PAR-14-294: Arts-Based Approaches in Palliative Care for Symptom Management (R01) Support mechanistic clinical studies to increase understanding of arts-based approaches in palliative care for symptom management PA-16-188/187: Mechanisms, Models, Measurement, and Management in Pain Research (R01/R21)
The Good Parent,The Good Child Better Family Well-Being