Giving PPD a Voice to be Measured: Designing a New Instrument for Detecting Postpartum Depression

Giving PPD a Voice to be Measured: Designing a New Instrument for Detecting Postpartum Depression

by Amanda Gorham

My son was born two years ago.  I was sleep deprived and terrified of my new role as a mom.  I didn’t smile, I didn’t talk to my baby much—I felt like I was spending all my time with a stranger.  Every night around four-thirty I would sob uncontrollably with no apparent cause. At my six-week follow up appointment with my Obstetrician, I was handed a questionnaire and given a few minutes to quickly fill it out before the doctor was ready to see me.  For the first time in my life, I cheated on a test.

The Edinburgh Postpartum Depression Scale (5) is the most widely used screening tool for postpartum mood disorders.  With 10 Likert-type items that require self-reflection, careful reading, and acute decisiveness (to choose between each item’s unique set of four response options), I could barely stammer though.  I would not let myself be a bad mom, be labeled as “crazy”, or be judged by everyone around me. I answered each question in whatever way I knew I had to so that I could get out of there without any questions being raise.

Just shy of two years after my son was born, I gave birth to my daughter.  She slept well, smiled non-stop and was just the embodiment of joy. I was waking up at two o’clock in the morning to feed her and then throwing in some laundry and washing some dishes before going back to sleep, waking up just a few hours later to be an exceptional mom to both my toddler son and my infant daughter.  I was navigating nap routines, bottles, and dirty diapers like it was my soul purpose in life. Everything was perfect. But then, one day during the fifth week postpartum, I woke up a different woman. It was sudden and surprising. I was seeing red, I was struggling to breathe, and I was seeing things in my mind that made me feel like a monster.  When I just about crawled into my six-week follow up appointment, I received the questionnaire from the nurse and I cheated. Again. But this time I was so desperate for help that I answered however I knew I had to so that I could get the care I so badly needed.

I have spent every single day of the past few months battling intense postpartum depression and I have spent every single day trying to rationalize why medical professionals are choosing to use a screening instrument that measures, from my experience, whether a woman wants to be treated for postpartum depression and not whether a woman needs to be treated for postpartum depression.  I begin by describing my personal experience because this is what motivates me to want to change the way we are measuring postpartum mood disorders.  I am so deeply dissatisfied with the diagnosis process and cannot imagine my own daughter experiencing this deep struggle.

As I began investigating the EPDS and the construct of postpartum depression, it didn’t take very long to find a whole host of studies challenging the validity of the scale across cultures and socioeconomic statuses (2).  My search for an alternative scale for measuring this construct, with sound psychometric qualities, was fruitless.  Some studies have found that low income and ethnic minority women experience depression at a far higher rate than other women and the EPDS has been shown to miss many of the women in these groups.  In fact, this disparity has been found to exist across all populations to varying extents (1; 2; 6; 7).  Recent studies have reported that about 14% of women in the US suffer from PPD (2; 4; 8; 9; 10; 12;15), while, in some cases, somewhere between 28% and 56% of minority low income women experience PPD (2; 3; 13; 14; 16).

What is most important to note here is that these statistics are artifacts of a broken screening system.  We know that 14% of women are diagnosed with PPD, but we also know, from studies like that of Hearn et al. (1998), that up to 50% of cases go undetected.  In some instances, women are deliberately lying because, like me, they don’t want to be judged, and in other cases they have specific issues with the scale.

The EPDS was developed in Scotland in 1987 and includes phrases that are specific to that vernacular.  Phrases like “Things have been getting on top of me,” are not common to the English language spoken in the United States and have caused women require clarification (2) in a setting where that clarification is not necessarily provided.  Items that include ambiguous phrases, such as “I feel guilty for no good reason” or “I blame myself unnecessarily” require women to try and objectify what constitutes a good reason and what exactly would necessitate blame.  Women are required to respond to each of the ten items on the EPDS by choosing one of four response options. These options are unique to each item, meaning women are required to make forty decisions (10 items, 4 response options each) in a typically short timeframe.  The Checklist for the Presence of Depressive Symptoms Adapted from the DSM IV by Ben-David et al. (2017) lists, as an indicator of clinical depression, “Reduction in the woman’s ability to think, concentrate, or make simple decisions almost every day.”  This juxtaposition strikes me as inappropriate and in need of attention, along with the other issues discussed.

When postpartum depression goes undetected, as it does quite frequently, it can have profound effects on the mother and the infant, both immediate and long-term.  Maternal suicide, infanticide, psychiatric break, feelings of detachment, neglect of the baby, maltreatment of the baby, and increased rates of psychological issues for the baby later in life are all possible outcomes of untreated postpartum depression (2).

Some of the issues around PPD are societal.  As such, women who suffer from PPD are often left to suffer in silence, for fear of being seen as an unfit mother.  Other issues are systematic and are able to be improved. The health care system had adopted a flawed tool for screening, likely because no other tool exists.  The logical remedy for this is to create a better scale. This is my charge.

Amanda Gorham is the researcher and writer behind Mom Like Me.  As a PhD student, at the University of Massachusetts and a mom who experienced postpartum depression (PPD) after giving birth to both of her children, Amanda is connecting with moms from across the United States to inform the development of an improved screening tool for detecting postpartum depression in new moms.  Along with the developing the screening tool, she hopes to use a selection of the shared stories to write a book, Mom Like Me, for all of the moms struggling with postpartum depression so that they might find solitude in knowing that there are moms out there just like them, and they are thriving. To follow the research (and Amanda’s personal story of PPD), visit findamomlikeme.com and follow @findamomlikeme on instagram.

References.

  1. Anderson, C., Robins, C., Greeno, C., Cahalane, H., Copeland, V., & Andrews, R. (2006). Why   lower income mothers do not engage with the formal mental health care system: perceived barriers to care. Qualitative Health Research, 16(7), 926-943.
  1. Ben-David, V., Jonson-Reid, M., Tomkins, R. (2017). Addressing the Missing Part of Evidence-  based Practice: The importance of respecting clinical judgement in the process of adopting a new screening tool for postpartum depression, Issues in Mental Health Nursing, 38(12), 1137-1147.
  1. Chaudron, L.H., Szilagyi, P.G., Tang, W., Anson, E., Talbot, N.L., Wadkins, H.I., … Wisner,   L.K. (2010). Accuracy of depression screening tools for identifying postpartum depression among urban mothers. Pediatrics, 125(3), 609-617.
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  1. Tandon, S. D., Cluxton-Keller, F., Leis, J., Huynh-Nhu, L., & Perry, D.F. (2012). A comparison of three screening tools to identify perinatal depression among low-income African American women. Journal of Affective Disorders, 136, 155-162.

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