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 Preventative Care at End of Life
Treasured Colleagues Tennessee: Washington, DC Mia Waldron, Med, MSN Jami Gattuso, RN, MSN Tessie October, MD Linda Oakes, RN, MSN Kathy Kelly, PhD, RN Judy Hicks, MSW Susan Keller DK Srivastava, PhD Cheryl Reggio, RN Michele Pritchard, PhD, RN Shana Jacobs,MD Nancy West, RN, MSN Vanessa Madrigal, MD Wayne Furman, MD Debbie LaFond, DNP, PNP Justin Baker, MD Suzanne Feetham, PhD, RN, FAAN JoAnn Harper, FNP North Carolina Brent Powell, MDiv Kathy Knafl, PhD, FAAN Lisa Anderson, Mdiv Pennsylvania: California: Scott Mauer, MD Sheri Spunt, MD Chris Feudtner, MD, PhD Preventative Care at End of Life
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 Preventative Care at End of Life
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. Preventative Care at End of Life
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 Preventative Care at End of Life
‘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%) Preventative Care at End of Life
Model of Pediatric Quality of Life at End of Life: Dual Focus on the Dying Child and the Family Preventative Care at End of Life
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.’ Preventative Care at End of 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. Preventative Care at End of Life
Even first time parents: Have a clear internal definition of what it means to be ‘a good parent to my seriously ill child’. Preventative Care at End of Life
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 Preventative Care at End of Life
Feasibility and Acceptability of Soliciting and Using the ‘Good Parent’ Definition in Real Time • Longitudinal design T 2 T 3 T 4 T 5 T 1 Parent Staff Screen Staff Feedback Parent Feedback and Interview 10 items Interview 10 items consent 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 Preventative Care at End of Life
Clinician Strategies that Help Parents Achieve Their Definition Clinician Strategy Percent of Parents Reporting Concluding All That Can Be Done is Being 64 Done Sensing Staff Respecting Me and My 33 Decision 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) Preventative Care at End of Life
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’ Preventative Care at End of Life
Concept Definitions Being a Good Child during Being a Good Patient during illness: illness: seeking to cooperate respectfully a willingness to do as clinically with others (most especially requested and being committed family), though recognizing how to trying to be adherent to the difficult this can be and being recommended care while trying considerate so to relieve the to maintain a positive outlook as burden of the illness and its part of looking out for the well- treatment on family even while being of self and others such as recognizing that the illness clinicians, family and friends. situation is serious and may require helping family to prepare for his or her death.
National Institute of Nursing Research Office of End-of-Life and Palliative Care PAR-14-294: Arts-Based Approaches in Research Palliative Care for Symptom Management (R01) • Support mechanistic clinical studies to • Dr. Jeri L. Miller increase understanding of arts-based • Dr. Karen Kehl approaches in palliative care for • Dr. Lynn Adams 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
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