Margaret Shandor Miles, RN, Ph.D., FAAN

Profiles in Nursing

Margaret Shandor Miles, RN, Ph.D., FAAN

Fragile infants and their parents

By Elizabeth Hanink, RN, BSN, PHN
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Margaret Miles became a nurse in the mid-1950s, an era when now-familiar practices like open heart surgery and chemotherapy were new and risky. That experience left her with an abiding interest not only in the psychosocial needs of hospitalized and critically ill children, but also in the stress and bereavement of parents coping with the illness or death of a child.

Miles’ work in those areas has had lasting impact. In the ‘80s, she developed two clinical tools, the Parental Stressor Scale (PSS): Pediatric Intensive Care Unit (first published in 1989) and PSS: Neonatal Intensive Care Unit (first published in 1993), both of which are now used internationally.

Her pamphlet, “Grief of Parents When a Child Dies,” is still distributed by Compassionate Friends more than 30 years after she wrote it.

Her Career Path

Miles began her nursing career as a staff nurse in the emergency department of her alma mater, Pittsburgh’s Mercy Hospital. Early on, she decided to continue her education and shift her focus to pediatrics, which would become the center point of her long career.

After earning her BSN from Boston College, Miles entered the master’s in pediatric nursing program at the University of Pittsburgh. She became the first CNS at Children’s Hospital of D.C. in Washington, D.C., and then moved to Missouri, where she continued to practice as a CNS while pursuing her doctorate in counseling psychology from the University of Missouri-Kansas City.

After completing her Ph.D., Miles became a professor at the University of Kansas and later in the School of Nursing of the University of North Carolina at Chapel Hill, of which she is now a professor emeritus.

Challenging Parenting

Miles’ list of research and publications is extensive. Highlights include a longitudinal study sponsored by the National Institute of Nursing Research that focused on the experience of parenting medically fragile infants and prematurely born children.

 Another study, sponsored by the National Institute for Mental Health, focused on the mental and physical health of mothers with infants who were seropositive for HIV.  Both studies led to nursing support interventions, the first focusing on African-American women in rural areas with premature infants and the second on helping African-American women with HIV improve their self-care.

Miles is currently researching African-American grandmothers rearing grandchildren.

Lessons from Patients

Miles says that many of the most important and meaningful lessons of her career have come not through the framework of a research project, but through what her patients have taught her.

She speaks movingly about how a patient dying of breast cancer showed her how providing a simple back rub could help the patient open up about her life and anticipated death, subjects the patient had previously avoided mentioning.

Miles also recalls a young, dying child who had been almost mute with anxiety, but responded to Miles’ use of puppets. The little girl was finally able to express her concern about how her beloved mother would cope after she was gone. Miles was able to reassure the child that her mother would be cared for and helped by the same people who were caring for the child.

When Miles relates these stories, it’s easy to recognize the compassion and dedication that have shaped her work and career. Her recognition in October 2013 as a “Living Legend” of the American Academy of Nursing is well-deserved.  

Unspeakable Grief

In her seminal work, “Grief of Parents When a Child Dies,” Miles advises parents to let their emotions flow rather than waiting for a “correct time” to express them.

Common feelings include:

•  Guilt: Parents blame themselves for something they did, or did not do.
•  Anger: Lashing out at themselves, their spouse or the medical staff.
•  Fear: A sense of dread that more bad things will happen, often leading to overprotectiveness of other children.
•  Depression: Feeling down, tired, worthless or sad.

As time passes, resolution and recovery occur. The pain decreases in intensity, but is not forgotten.

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