STRENGTHENING HUMAN MILK BANKING: A Resource Toolkit for Establishing & Integrating Human Milk Bank Programs A Counseling Guide for Engaging Bereaved Mothers 7 Starting every life with mothers’ milk STRENGTHENING HUMAN MILK BANKING: A Resource Toolkit for Establishing & Integrating Human Milk Bank Programs 0. A Global Implementation Framework 1. An Assessment Tool for Determining Facility Readiness 2. Establishing Quality Assurance: a. A Workshop for Developing a Hazard Analysis Critical Control Points Plan—Trainee Workbook b. A Workshop for Developing a Hazard Analysis Critical Control Points Plan—Trainer Guide c. A Guide for Creating Operational Standards d. An Audit Template 3. A Guide for Conducting Monitoring & Evaluation 4. A Training Curriculum Template for Hospital and Human Bank Staff 5. A Guide for Track and Trace Documentation 6. A Guide for Developing a Communications Strategy 7. A Counseling Guide for Engaging Bereaved Mothers This toolkit was developed as a comprehensive set of templates, standards, and tools to guide critical steps for establishing human milk banking as an integrated component within breastfeeding support and neonatal care, with in-depth focus on readiness, quality assurance, operations, auditing, training, monitoring and evaluation, and communications. These resources are freely available, globally accessible, and should be adapted to the local context to maximize effectiveness. PHOTOS: Cover (left to right): Northwest Mothers Milk Bank; PATH/ Andrew Berends; Laerdal Global Health; Back cover (left to right): United States Breastfeeding Committee; Mothers’ Milk Bank Austin, Texas; Northwest Mothers Milk Bank. COPYRIGHT PATH CONTACT: Kiersten Israel-Ballard, DrPH Associate Director, Maternal, Newborn, and Child Health and Nutrition [email protected]; [email protected]. 1.206.285.3500 Suggested citation: PATH. Strengthening Human Milk Banking: A Resource Toolkit for Establishing and Integrating Human Milk Banks--A Counseling Guide for Engaging Bereaved Mothers. Seattle, Washington, USA: PATH; 2019. Copyright © 2019, PATH. All rights reserved. The material in this document may be freely used for educational or noncommercial purposes, provided that the material is accompanied by acknowledgement line. 2 STRENGTHENING HUMAN MILK BANKING ACKNOWLEDGEMENTS PATH gratefully acknowledges the human milk bank technical experts, nutritionists and lactation advocates, microbiologists, neonatologists and clinical staff, regulatory and policy officials, and food scientists from around the world who contributed to the conceptualization and creation of this toolkit, and ensured that the information presented is inclusive and representative of human milk bank programs globally. For this Counseling Guide for Engaging Bereaved Mothers, we would also like to specifically thank the technical assistance consultants who contributed to this work, especially Alessandra DeMarchis; Tanya Cassidy; Gillian Weaver; and graduate student interns, Virginia Alcalde and Madison Rivas; and Laura Meyer (PATH). This work would not have been possible without the generous financial support from the Family Larsson-Rosenquist Foundation for embracing PATH’s vision around the development of globally accessible resources and standards to save newborn lives— Strengthening Human Milk Banking: A Resource Toolkit for Establishing and Integrating Human Milk Banks. Technical leadership for the conceptualization and development of this toolkit was provided by Kiersten Israel-Ballard and Kimberly Mansen in PATH’s Maternal, Newborn, and Child Health and Nutrition Program. We recognize the collaboration, dedication and innovation in global leadership from the PATH newborn nutrition and human milk banking teams (and numerous partners) around the world that have contributed towards informing the development and appropriateness of these tools—India: Ruchika Sachdeva, Praveen Kandasamy; Kenya: Angela Kithua, Rosemarie Muganda; United States: Cyril Engmann, Laura Meyer; Vietnam: Nga Nguyen Quynh, Nga Nguyen Tuyet. 3 A COUNSELING GUIDE FOR ENGAGING BEREAVED MOTHERS This David Kracov sculpture hangs in the Northwest Mothers Milk Bank lobby (Portland, Oregon, USA) and gives honor to the mothers who have generously donate their breast milk after the loss of an infant. Photo: Northwest Mothers Milk Bank 4 STRENGTHENING HUMAN MILK BANKING Contents Photo: Northwest Mothers Milk Bank OBJECTIVES OF THIS GUIDE 6 ABOUT THIS GUIDE 6 HOW TO USE THIS GUIDE 7 SECTION 1: BEREAVEMENT AND GRIEF: AN OVERVIEW 8 What is bereavement? 8 What is grief? 8 What to expect at onset of bereavement 9 How to help parents begin the grieving process 10 SECTION 2: THE ROLE OF THE HEALTH CARE WORKER DURING BEREAVEMENT 10 Empathy and sensitivity 10 Time and space 10 Practical help 11 Communication 11 Continuing support 11 SECTION 3: HOW TO PROVIDE LACTATION SUPPORT DURING BEREAVEMENT 12 SECTION 4: HELPING A MOTHER WITH HER OPTIONS IN LACTATION DURING BEREAVEMENT 14 Guidance on how to counsel a bereaved mother after the loss of an infant 14 Guidance on how to counsel a mother after she has made a decision about what to do with her milk supply 16 SECTION 5: SUPPORTING MOTHERS IN THEIR DECISION 18 SECTION 6: HEALTH CARE WORKERS PRACTICING SELF-CARE 18 ADDITIONAL RESOURCES 19 Bereavement resources 19 General lactation support resources 19 REFERENCES 20 5 OBJECTIVES OF ABOUT THIS GUIDE THIS GUIDE This guide is intended for health care workers who work Use of this guide will enable with bereaved mothers and families dealing with perinatal healthcare workers to: loss. This may include nurses, lactation consultants, 4 Understand the grief physicians, registered dietitians, midwives, bereavement process for mothers counselors, human milk bank workers, among other health who have lost an professionals. infant. 4 Understand the role The purpose of this guide is to help health care workers of the health care appropriately and sensitively discuss lactation options for worker in providing bereaved mothers. appropriate and sensitive support to bereaved mothers. 4 Provide accurate information to bereaved mothers on the lactation process during bereavement. 4 Counsel mothers in a sensitive and comprehensive manner regarding the options for donating human milk during the bereavement process. Photo: PATH/Gabe Bienczcki STRENGTHENING HUMAN MILK BANKING Photo: PATH/Andrew Berends HOW TO USE THIS GUIDE This guide serves as a quick reference for what health care workers can expect from bereaved mothers and families after losing their baby and how to provide lactation support for bereaved mothers. SEE TOOL #4 Strengthening Human Milk Banking: A Resource Toolkit for Establishing and Integrating Human Milk Bank Programs—A Training Curriculum Template for Hospital and Human Milk Bank Staff: Appendix 3. Supplemental Module: Bereavement and Lactation Support for a customizable training course for teaching hospital and human milk bank staff. 7 A COUNSELING GUIDE FOR ENGAGING BEREAVED MOTHERS SECTION 1: BEREAVEMENT AND GRIEF: AN OVERVIEW What is bereavement? 4 Bereavement is the state and experience of loss after a loved one has died. 4 The loss of a baby can occur at any stage of pregnancy, or any time after birth. 4 Figures 1 and 2 illustrate the five types of infant loss at different points during pregnancy and after birth. Figure 1. Perinatal loss during pregnancy. 1st Trimester 2nd Trimester 3rd Trimester WEEKS through 12 weeks through 27 weeks through 40 weeks 40 1 12 20 27 Early Miscarriage Late Miscarriage Still Birth Figure 2. Loss after birth. Birth 1st Week 2nd Week 3rd Week 4th Week 1 Year DAYS 1 7 14 21 28 365 Neonatal death Infant death What is grief? A basic understanding of grief will help you best care for bereaved mothers and their families. Grief is a natural and normal response to loss and a means of healing after a loss.1 Everyone experiences grief differently.2,3 Perinatal loss is a high-risk factor for individuals to develop complicated grief.2,4 Acute symptoms of grief after perinatal death will likely decrease within the first year. Complete recovery from grief after perinatal death can take several years.5 Individuals may not necessarily “recover” from grief but develop a new way to live.3 There are many different theories to explain how individuals grieve. Grief after perinatal loss can be more complicated than other types of grief, since parents often have no or very limited time with the child and because the “natural order of life” is disrupted when a child dies before the parent.4 There is no correct way to grieve; mothers, fathers, and other family members may grieve very differently.6,7 8 STRENGTHENING HUMAN MILK BANKING THE SIX “R’S” OF MOURNING IN PERINATAL BEREAVEMENT (ADAPTED)4,8 Avoidance phase: Individual avoids recognizing the loss. This can be complicated by societal resistance to recognize the existence and death of the baby. Confrontation phase: Parents must fully experience the pain of this event by reacting, recollecting, re- experiencing and relinquishing, but this is especially difficult in the case of perinatal loss. Parents can have difficulty reacting to being separated from the child, especially because the child can be seen as an extension of themselves. There can be problems recollecting and re-experiencing the relationship with the infant because parents do not have many memories or experiences with the child. Difficulty relinquishing attachments to the child can emerge because this also means relinquishing connections to parenthood. Accommodation phase: This