Could Helping Parents Achieve Being a Good Parent to My Very Ill - - PowerPoint PPT Presentation

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: 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

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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

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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.

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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

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‘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%)

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Model of Pediatric Quality of Life at End of Life: Dual Focus on the Dying Child and the Family

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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.’

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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.

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Even first time parents:

Have a clear internal definition of what it means to be ‘a good parent to my seriously ill child’.

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Validation Steps: ‘Being a Good Parent to My Seriously Ill Child’

1 descriptive confirmatory study

• f 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

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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

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Clinician Strategies that Help Parents Achieve Their Definition

Clinician Strategy Percent of Parents Reporting Concluding All That Can Be Done is Being Done 64 Sensing Staff Respecting Me and My Decision 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)

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Emerging Construct (NR015831)

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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’

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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 well- being 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