Exploring the Experiences of Mothers with VLBW Infants

Introduction: The Importance of Mother’s Own Milk and the Hidden Pressure

For infants born with very low birth weight (VLBW), defined as less than 1500 grams, mother’s own milk (MOM) is not just food; it’s a lifeline. Packed with vital nutrients and antibodies specifically tailored to their fragile needs, MOM provides unparalleled protection against infections and complications, promoting optimal growth and development. However, the journey of providing MOM for VLBW infants is often fraught with challenges. Unlike mothers of term infants who can directly breastfeed, mothers of VLBW babies typically rely on pumping to express their milk due to the infant’s physiological immaturity. This dependence on pumping, coupled with the impact of preterm birth on milk production and the emotional rollercoaster associated with having a baby in the Neonatal Intensive Care Unit (NICU), creates a unique set of hurdles for these mothers.

Existing research highlights several factors influencing milk supply and breastfeeding success in mothers of preterm infants, including maternal age, education, previous breastfeeding experience, and access to lactation support. However, one crucial aspect often remains hidden: the pressure to provide milk. This pressure can stem from both internal and external sources, creating an additional layer of stress for mothers already navigating the complexities of the NICU environment. Internal pressure arises from the mother’s own expectations and desire to provide the best for her baby, fueled by the knowledge of the immense benefits of MOM. External pressure can come from healthcare professionals, family members, and even society at large, often perpetuating the notion that breastfeeding is the only acceptable way to nourish a child.

While some studies have explored the pressure to breastfeed among mothers of term infants, little is known about its specific impact on mothers of VLBW babies. This study aims to address this gap by investigating the prevalence and nature of pressure to provide milk among this vulnerable population. We explore mothers’ perceptions of pressure, both internal and external, and examine its relationship with various factors, including milk volume, parental stress, and previous pumping experience. Furthermore, we delve into qualitative data to gain a deeper understanding of the mothers’ lived experiences and the emotional impact of pressure to provide milk.

By shedding light on this often overlooked aspect of the NICU journey, this study aims to inform healthcare providers, policymakers, and support systems about the unique challenges faced by mothers of VLBW infants. Ultimately, our goal is to contribute to a more compassionate and supportive environment that empowers mothers to make informed feeding choices and promotes the well-being of both mother and child.

Methods: Delving into Mothers’ Experiences

To investigate the complexities of pressure to provide milk among mothers of VLBW infants, we employed a multifaceted approach combining quantitative and qualitative data collection methods. This allowed us to capture both the prevalence and the nuanced experiences of pressure in this population.

Study Design and Participants

Our study utilized a retrospective, cross-sectional survey design. Data was collected anonymously as part of the larger Neo-MILK project, a comprehensive initiative aimed at understanding and improving lactation support for mothers of preterm infants in Germany. We partnered with four major statutory health insurance companies to identify and recruit eligible participants. The inclusion criteria were mothers whose infants were born with a birth weight below 1500 grams (VLBW) and were between 6 and 24 months old at the time of data collection. This age range was chosen to minimize the risk of re-traumatization, allowing mothers sufficient time to process their NICU experience while still ensuring accurate recall of events.

A total of 1,894 mothers meeting the criteria were contacted by their respective health insurance companies and invited to participate in the study. After data cleaning to exclude incorrectly contacted mothers and those who did not initiate lactation, we analyzed responses from 518 mothers, representing a final response rate of 27.3%.

Survey Instrument: Measuring Pressure, Stress, and Influencing Factors

The survey instrument comprised a combination of validated scales and self-developed items to assess pressure to provide milk, parental stress, and other relevant factors.

  • Pressure to Provide Milk: Since no validated tool existed to specifically measure pressure to provide milk, we developed two single-item measures to capture the internal and external dimensions of this pressure. Mothers were asked to indicate their level of agreement with the following statements using a six-point Likert scale:
    • “During the time in the NICU, I pressured myself because I wanted to provide milk for my infant.” (Internal Pressure)
    • “During the time in the NICU, I felt pressured from outside to provide milk for my child.” (External Pressure)
  • Parental Stress: To evaluate the level of stress experienced by mothers due to the altered parental role in the NICU, we utilized the validated German version of the Parental Stressor Scale: Neonatal Intensive Care Unit (PSS:NICU_German/2scale). Specifically, we employed the parental role alteration subscale, which consists of six items rated on a five-point Likert scale. Higher scores on this subscale indicate greater stress levels related to the limitations in providing care for their infant.
  • Additional Variables: To explore potential associations with pressure to provide milk, we collected data on the following variables:
    • Previous experience with pumping: Yes/No.
    • Milk volume 14 days postpartum: Categorized as under 300ml/day, 301-500ml/day, 501-700ml/day, 701-800ml/day, and over 800ml/day. This timeframe was chosen as it has been identified as a reliable predictor of sufficient lactation.
    • Maternal educational level: Categorized according to the German school qualification system.
    • Maternal age: Continuous variable.
    • Availability of donor milk at the hospital: Yes/No/Don’t know.

Qualitative Data Collection and Analysis

To enrich our understanding of mothers’ experiences, the survey included an open-ended question inviting them to share any additional thoughts or feelings. These written comments were analyzed using inductive content analysis, a qualitative method that involves identifying recurring themes and patterns within the data. Two researchers independently coded the comments and then collaborated to develop a final set of categories and subcategories representing the key issues expressed by the mothers.

Data Analysis: Unveiling Patterns and Relationships

Quantitative data were analyzed using Stata 16 statistical software. Descriptive statistics were used to summarize sample characteristics and the prevalence of pressure to provide milk. Bivariate tests, including Spearman’s rho and Pearson’s chi2, were conducted to examine the correlations between pressure to provide milk and other variables such as milk volume, parental stress, previous pumping experience, maternal education, age, and donor milk availability.

The qualitative data analysis focused on identifying and interpreting the main themes related to pressure and stress experienced by mothers in their efforts to provide milk for their VLBW infants. Quotes from the comments were used to illustrate these themes and provide deeper insights into the quantitative findings.

Results: Unveiling the Prevalence and Complexity of Pressure to Provide Milk

Our analysis revealed a compelling picture of the challenges and pressures faced by mothers of VLBW infants in their quest to provide breast milk.

Quantitative Findings: Prevalence and Correlations

  • Pressure to Provide Milk: A significant majority (over 70%) of mothers reported experiencing internal pressure to provide milk for their infants. This indicates a strong personal desire and sense of responsibility to offer their babies the benefits of MOM, often despite the difficulties they encounter. In contrast, external pressure was less prevalent, with 34% of mothers reporting feeling pressure from others to provide milk.
  • Interplay of Internal and External Pressures: Interestingly, our analysis showed a positive correlation between internal and external pressure, suggesting that mothers who put pressure on themselves may also be more susceptible to feeling pressure from external sources.
  • Milk Volume and Pressure: Both internal and external pressure were positively correlated with higher milk volume at 14 days postpartum. This suggests that mothers who produced more milk may have experienced greater pressure, possibly due to a perceived expectation to maintain or increase their supply.
  • Parental Stress and Pressure: Higher scores on the PSS:NICU parental role alteration subscale, indicating greater stress related to the limitations in caring for their infants, were associated with higher levels of both internal and external pressure. This highlights the emotional toll of the NICU experience and its potential contribution to feelings of pressure surrounding milk provision.
  • Previous Pumping Experience and Internal Pressure: Mothers who had prior experience with pumping reported significantly less internal pressure to provide milk compared to those without prior experience. This suggests that familiarity with pumping and its challenges may lead to more realistic expectations and self-compassion, reducing the internal pressure mothers place on themselves.
  • Education and Parental Stress: A higher maternal educational level was associated with lower parental stress scores. This finding aligns with previous research suggesting that higher education may provide mothers with greater access to resources and coping mechanisms, mitigating the stress associated with the NICU experience.
  • Donor Milk and External Pressure: The availability of donor milk at the hospital was significantly associated with lower levels of external pressure to provide milk. This suggests that having the option of donor milk may alleviate some of the pressure mothers feel from healthcare providers or others who emphasize the importance of human milk.

Qualitative Findings: Mothers’ Voices and Experiences

The qualitative analysis of mothers’ written comments provided rich insights into the emotional dimensions of pressure to provide milk, complementing and expanding upon the quantitative findings.

  • Internal Pressure and Stress: Several mothers described feeling overwhelmed by the responsibility and pressure to produce enough milk, often leading to feelings of guilt and inadequacy when their supply fell short of expectations. The importance of MOM for their babies’ health was a recurring theme, further amplifying the internal pressure they experienced.
  • Impact of Previous Experience: Consistent with the quantitative results, some mothers with previous breastfeeding or pumping experience mentioned feeling less pressure with their VLBW infants, attributing this to a more realistic understanding of the challenges and a greater acceptance of their bodies’ capabilities.
  • External Pressure and Stress: Mothers who felt pressured by hospital staff often described feeling judged or coerced into breastfeeding or pumping, even when they expressed a desire to formula feed or faced difficulties with lactation. Others mentioned feeling societal pressure to breastfeed, highlighting the pervasive cultural expectations surrounding infant feeding.

Overall, the results paint a complex picture of the pressures surrounding milk provision for mothers of VLBW infants. Internal pressure emerges as a dominant theme, often intertwined with parental stress and influenced by factors such as milk supply and previous pumping experience. External pressure, although less prevalent, can also significantly impact mothers’ emotional well-being and feeding choices.

Discussion: Understanding the Implications of Pressure to Provide Milk

Our findings provide valuable insights into the complex issue of pressure to provide milk among mothers of VLBW infants and its potential impact on their well-being and breastfeeding experiences.

Internal Pressure as a Dominant Force:

The high prevalence of self-imposed pressure to provide milk aligns with recent studies on term mothers, suggesting that this phenomenon extends beyond the specific challenges of the NICU environment. Mothers of VLBW infants are acutely aware of the benefits of MOM for their vulnerable babies and may feel a heightened sense of responsibility to provide it, regardless of the difficulties they face. This internal pressure can become a significant source of stress, especially when mothers struggle with milk supply or experience physical and emotional challenges related to pumping.

The Interplay of Pressure, Milk Supply, and Parental Stress:

Our results highlight the interconnectedness of pressure to provide milk, milk volume, and parental stress. While we did not find a direct correlation between milk volume and parental stress, the association of both factors with pressure suggests a potential mediating role. It is plausible that pressure to provide milk, stemming from both internal and external sources, acts as an additional stressor that can negatively impact milk supply, further exacerbating mothers’ feelings of inadequacy and anxiety. This creates a vicious cycle that can hinder breastfeeding success and contribute to negative emotional experiences.

Previous Experience as a Protective Factor:

The finding that previous pumping or breastfeeding experience is associated with lower internal pressure suggests that familiarity with the process can foster realistic expectations and self-compassion. Mothers who have previously navigated the challenges of lactation may be better equipped to cope with fluctuations in milk supply and less likely to blame themselves for perceived shortcomings.

The Role of Donor Milk in Alleviating Pressure:

Although the availability of donor milk in Germany is still limited, our results suggest that it has the potential to reduce external pressure on mothers. Knowing that their babies can receive the benefits of human milk, even if they are unable to produce enough themselves, may alleviate some of the pressure mothers feel from healthcare providers and others who emphasize the importance of breastfeeding. This is particularly relevant in cases where mothers experience significant challenges with lactation or choose not to breastfeed for personal reasons.

Strengths and Limitations: Contextualizing the Findings

This study offers valuable contributions to the understanding of pressure to provide milk among mothers of VLBW infants. The combined use of quantitative and qualitative data provides a comprehensive perspective on the prevalence, nature, and emotional impact of this pressure. The large sample size enhances the generalizability of the findings.

However, several limitations should be acknowledged. The retrospective design may be susceptible to recall bias, particularly regarding mothers’ memories of milk volume and stress levels during their time in the NICU. The self-developed single-item measures of pressure to provide milk, while capturing the core dimensions of the construct, may not fully encompass the nuances of this complex phenomenon. Similarly, the use of a single subscale from the PSS:NICU may not fully capture the multifaceted nature of parental stress in the NICU environment.

Moving Forward: Implications for Research and Practice

Our findings underscore the need for further research on pressure to provide milk and its impact on mothers of VLBW infants. Future studies should employ validated instruments to measure pressure, explore its long-term effects on maternal mental health and infant feeding outcomes, and investigate the effectiveness of interventions aimed at mitigating pressure and supporting mothers in their feeding choices.

Healthcare providers should be mindful of the pressure mothers may feel and offer sensitive, non-judgmental support that empowers them to make informed decisions about feeding their babies. Promoting awareness and access to donor milk, where available, can provide mothers with an alternative option and alleviate some of the pressure associated with exclusive breastfeeding.

Ultimately, creating a supportive environment that acknowledges the complexities of breastfeeding for mothers of VLBW infants and respects their individual choices is crucial for promoting their well-being and ensuring the best possible outcomes for both mother and child.

Conclusion: Towards a More Supportive Environment for Mothers of VLBW Infants

The journey of providing breast milk for a very low birth weight (VLBW) infant is fraught with challenges, both physical and emotional. Our study has illuminated the significant role that pressure to provide milk plays in this experience, highlighting its impact on maternal stress levels and breastfeeding outcomes. We found that a substantial majority of mothers of VLBW infants experience internal pressure to provide milk, driven by their deep desire to give their vulnerable babies the best possible start in life. This internal pressure is often compounded by external pressures from healthcare providers, family members, and societal expectations surrounding breastfeeding.

Our findings underscore the need for a more nuanced and compassionate approach to supporting mothers of VLBW infants in their feeding choices. Healthcare providers play a critical role in creating a non-judgmental environment where mothers feel empowered to discuss their concerns and make informed decisions without fear of criticism or coercion. Recognizing the potential negative impact of pressure on milk supply and maternal well-being, providers should offer individualized support that takes into account each mother’s unique circumstances and preferences.

Furthermore, expanding awareness and access to donor human milk can provide an invaluable option for mothers who are unable to produce sufficient milk or choose not to breastfeed. Knowing that their babies can still receive the benefits of human milk, even if it is not their own, can alleviate a significant amount of pressure and stress for these mothers.

Future research efforts should focus on developing and validating comprehensive tools to assess pressure to provide milk, encompassing its various dimensions and sources. Investigating the long-term effects of pressure on maternal mental health and infant feeding outcomes is also crucial for informing effective support strategies. Additionally, exploring the role of interventions such as peer support groups and lactation counseling in mitigating pressure and promoting positive breastfeeding experiences is essential.

By acknowledging the complexities of breastfeeding for mothers of VLBW infants and addressing the issue of pressure to provide milk, we can create a more supportive environment that prioritizes the well-being of both mother and child. Ultimately, the goal is to empower mothers to make informed feeding choices that align with their individual circumstances and promote a positive and fulfilling breastfeeding experience, free from unnecessary pressure and stress.

Schwab, I., Dresbach, T., Ohnhäuser, T., Horenkamp-Sonntag, D., Scholten, N., & Neo-MILK. (2024). Pressure to provide milk among mothers of very low birth weight infants: An explorative study. BMC Pregnancy and Childbirth, 24(1), 134. https://doi.org/10.1186/s12884-024-06315-3

We will be happy to hear your thoughts

Leave a reply

Djeemakart
Logo
Register New Account
Compare items
  • Total (0)
Compare
0
Shopping cart