Project Title: Co-Designing a Bereaved Parents Breastmilk Donor and Support Program: Bridging the Gap
Project Title: Co-Designing a Bereaved Parents Breastmilk Donor and Support Program: Bridging the Gap
Principal Supervisor: Dr Patricia Nicholson, Associate Professor of Nursing, HDR Director
School of Nursing and Midwifery, Faculty of Health, Deakin University
Associate Supervisor: Dr. Rebecca Thornton, Senior Lecturer in Nursing School of Nursing and Midwifery, Faculty of Health, Deakin University
External Co-Supervisor: Dr. Katherine Carroll, School of Sociology, Research School of Social Sciences, Australian National University
Primary Objective:
The primary aim of the project is to co-design and pilot a Bereaved Parents Breastmilk Donor and Support Program, hereon referred to as the Breastmilk Donor Program, that addresses the unique needs and experiences of grieving mothers and families who choose to donate breast milk. Recognising critical gaps in support and healthcare provision, the proposed initiative aims to offer bereaved mothers and families an opportunity to contribute to the well-being of infants in need of nutritional support while also receiving emotional support during their grieving process.
Background:
The loss of an infant is an emotionally devastating experience for families, particularly for bereaved mothers (Warr, 2019). Coping with grief and finding meaningful ways to honour their child's memory can be an arduous journey. This program recognises that while breastmilk is essential for infant nutrition, it also holds immense significance for bereaved parents in their grief journey. By centering the bereaved parents and their emotional well-being, the program aims to provide a supportive environment where they can find solace, healing, and a sense of purpose through the act of donation.
Every day, eight babies do not survive, which is attributed to either a stillbirth or neonatal complications (Australian Institute of Health and Welfare, 2023). This statistic underscores a significant national health and economic challenge that affects families. Despite these statistics and the psychological impact, support for these families is lacking, with no Breastmilk Donor program currently available to address the needs of those affected (Gribbin, 2024).
Beyond emotional healing, the program aims to instil a profound sense of purpose in bereaved parents. By contributing to the well-being of other infants through breastmilk donations, these parents experience empowerment amidst their grief (Oreg, 2019; Fernndez-Medina et al, 2022; Paraszczuk et al, 2022). This sense of contribution goes beyond the mere act of donation; it signifies a powerful affirmation of life and resilience in the face of loss.
Breastmilk is universally recognised for its health benefits and pivotal role in bolstering the developing immune systems of infants (Horta & Victora, 2013; Lessen & Kavanagh, 2015). This natural source of nourishment is replete with essential nutrients and antibodies that confer robust protection to newborns (Lessen & Kavanagh, 2015). However, factors such as maternal illness, insufficient milk production, or the health conditions of the infant render breastfeeding an unattainable goal for some families (Martin, Ling & Blackburn, 2016).
The situation becomes even more complex and emotionally charged when considering bereaved mothers who have suffered the loss of an infant. They face a unique set of challenges, navigating a path through grief that is often isolating and emotionally overwhelming (Warr, 2019; Noble-Carr et al, 2023; Fernndez-Medina et al, 2022), which is often marked by the absence of specific support systems tailored to their distinct needs (Layne, 2014; Noble-Carr, Carroll & Waldby, 2021). While valuable, existing milk donation programs lack the additional support bereaved mothers and their families require during this challenging time (Carroll et al, 2020; Paraszczuk et al, 2022).
The act of donating breastmilk to nourish and nurture other infants in need of nutritional support serves as a powerful and emotionally restorative gesture. This act of altruism offers bereaved mothers a unique opportunity to find solace and purpose within their grief journey (Layne, 2014; Oreg, 2019; Paraszczuk et al, 2022). Numerous studies, including the work of Layne (2014) and Oreg (2019), have underscored the importance of meaningful activities in coping with loss and facilitating healing. Donating breastmilk, coupled with emotional support, becomes a potent catalyst for healing in the lives of bereaved mothers and families (Fernndez-Medina et al, 2022; Paraszczuk et al, 2022).
The Breastmilk Donor Program endeavours to fill a gap in the support system for bereaved mothers and their families (Sweeney et al, 2020). By providing emotional support, opportunities for healing, peer connections, and a pathway for meaningful contribution, it seeks to empower these mothers as they navigate the challenging terrain of grief. Simultaneously, it enhances the prospects of improved health and well-being for infants in need of nutritional support (Warr,2019; Fernndez-Medina et al, 2022). Creating a supportive network is a vital aspect of the Breastmilk Donor Program, enabling bereaved mothers and families to connect with others who have experienced similar losses as researched by Waldby et al., 2022
Recognising these critical gaps in support and healthcare provision, the proposed initiative aims to offer bereaved mothers and families an opportunity to contribute to the well-being of infants with nutritional needs while also receiving emotional support during their grieving process.
Research Questions:
What is the feasibility and acceptability of a Bereaved Breastmilk Donor and Support Program?
How can the co-design methodology be optimised to effectively address sensitive topics, particularly in the context of bereavement support programs?
What do bereaved parents perceive as an ideal bereavement donor program?
How can the insights from bereaved parents inform the development and implementation of effective support initiatives?
What are the key barriers and facilitators in establishing a Bereaved donor program, as perceived by bereaved parents, healthcare professionals, and stakeholders?
Proposed Methodology
Phases of Research Proposal
Phase 1 - Scoping Review
The need for a scoping review emerges from the intricate landscape of breastmilk donation, particularly concerning bereaved mothers. Despite the acknowledged significance of breastmilk in infant nutrition and immune development (Horta & Victora, 2013), research focusing on the experiences of bereaved families is notably scarce (Fernndez-Medina et al., 2022). Existing studies predominantly concentrate on standard donation programs, probing into the benefits and operational aspects across diverse contexts. This review aims to delve into these experiences, shedding light on potential improvements for fostering support and inclusivity within breastmilk donation endeavours.
By synthesising available literature and methodologies, a scoping review will offer insight into the emotional, logistical, and ethical dimensions of bereaved parents' involvement in breastmilk donation programs. Furthermore, the review seeks to identify best practices and areas requiring refinement within breastmilk donation initiatives, particularly concerning bereaved parents. Such insights are instrumental in optimising support services, refining program efficacy, and advancing inclusivity.
In the initial phase of the research project, a thorough scoping review will be conducted encompassing existing literature and programs related to bereaved mothers and breastmilk donation. This review will adhere to the methodology outlined by Arksey and O'Malley (2005) and follow the systematic approach described by Munn et al. (2018). The primary objective is to pinpoint gaps and constraints within the current research landscape and available support frameworks, especially concerning bereaved mothers and families.
The review aims to provide valuable insights and recommendations for optimising program effectiveness and promoting the well-being of bereaved mothers and their families by employing a comprehensive methodology and integrating multiple approaches.
Primary Objectives of the Scoping Review:
Objective 1: Compiling Existing Literature and Programs
The primary objective is to compile, analyse, and assess the existing literature and programs related to bereaved mothers and families and their involvement in breastmilk donation and associated support.
Objective 2: Mapping the Current Evidence
Concurrently, the current evidence of support services accessible to bereaved mothers and their families will be mapped. This encompasses not only emotional support but also access to donated breastmilk programs, recognising their interdependence in the context of bereavement.
Objective 3: Identifying Research Gaps
The scoping review is a diagnostic tool to identify potential gaps and limitations in the current literature and existing programs. These identified gaps will guide subsequent research phases, including the development of the Bereaved Mothers Breastmilk Donor and Support Program.
Objective 4: Exploring Codesign and Participatory Methodologies with Bereaved Parents
An additional objective of the scoping review is to explore codesign and participatory methodologies specifically tailored to engaging bereaved parents in healthcare interventions. This objective aims to identify successful strategies, challenges, and ethical considerations associated with involving bereaved parents in designing and developing healthcare programs, such as the Bereaved Donor Program. By examining the literature on codesign and participatory approaches, including the application in bereavement contexts, this objective seeks to inform the methodological framework for engaging bereaved parents as active partners in shaping supportive interventions.
Ensuring Methodological Rigour and Transparency:
To maintain the highest standards of rigour and transparency during the scoping review process, adherence to established guidelines, such as those outlined in the Joanna Briggs Institute Reviewer's Manual, will be followed (Tricco et al., 2018). These guidelines will serve as the framework for a systematic search of multiple databases, including reputable sources such as PubMed and PsycINFO, as well as relevant grey literature sources. The search strategy will be meticulously crafted, utilising keywords associated with bereaved mothers, breastmilk donation, infant loss, and support services.
Phase 2 - Co-design of a Bereaved Parents Breastmilk Donor and Support Program:
Co-design is an inclusive methodology encompassing collaboration that integrates end-users and stakeholders into designing and developing healthcare interventions (Bate & Robert, 2007; Donetto et al, 2015), including bereaved mothers and their families, healthcare professionals such as obstetricians, midwives, neonatologists, nurses, lactation consultants, social workers, pastoral care providers, grief counsellors and program administrators. This approach will leverage their collective expertise and experiences to create a program to address the identified gaps.
A co-design approach is particularly vital in healthcare research, focusing on improving patient-centred care and addressing complex issues that necessitate multidimensional solutions (Donetto et al, 2015). In the context of bereaved mothers and the Breastmilk Donor and Support Program, co-design ensures that the program is not a one-size-fits-all solution but a tailored and effective intervention unique to the needs of bereaved mothers and their families.
The program's development will be influenced by insights gathered from the scoping review, which will be instrumental in shaping this co-design process. This inclusive approach draws from Arnstein's (1969) ladder of citizen participation, recognising the importance of meaningful involvement and partnership in decision-making processes.
To initiate this research endeavour, the heartfelt positivity methodology, as proposed by Pentinnen (2013), will be integrated into this phase of the project. This methodology consciously fosters positivity within academic research practices, emphasising emotional reflexivity to discern and assimilate collaborators' emotional journeys. It particularly focuses on collaborators beyond the immediate research team, engaging them at different junctures of bereavement research (Pentinnen, 2013).
The IAP2 Spectrum of Public Participation (2018) is also reflected in the methodology, emphasising the importance of creating opportunities for stakeholders to actively contribute and co-create solutions. This spectrum acknowledges varying levels of engagement, from inform to empower, which aligns with the aims of the project of empowering stakeholders, especially bereaved families, in shaping the program's objectives and scope.
The outcomes from this approach underscore the often-overlooked emotions of collaborators engaged in bereavement research, offering significant insights into enabling bereaved mothers' participation in related research or donation programs (Carroll, 2018). Key learnings underscore the potential for collaborators themselves to be bereaved parents, underscoring the ongoing necessity of integrating bereaved parents into research endeavours and expanding emotional reflexivity principles to encompass research collaborators navigating emotionally charged subjects (Pentinnen, 2013; Carroll, 2018).
Empathy is at the core of co-design, as it involves end-users in the design process, fostering a compassionate and supportive program (Sanders & Stappers, 2008). Placing these end-users at the heart of the design process also renders the program more user-friendly and pertinent to their needs (Bate & Robert, 2007).
Engaging diverse stakeholders in the design process is a fundamental aspect of the Breastmilk Donor Program. This approach ensures that various perspectives are considered, leading to a more comprehensive and effective program (Bate & Robert, 2007; Donetto et al, 2015). The involvement of a range of stakeholders allows for a holistic approach that considers both the end-user experiences and the practical aspects of program implementation (Sanders & Stappers, 2008).
Diverse stakeholder engagement also plays a crucial role in identifying potential barriers and facilitators for program acceptance and feasibility (O'Brien et al., 2014; Donetto et al, 2015). Each stakeholder group brings a unique perspective that can help shape the program's design and objectives. In particular, including bereaved mothers and families who have experienced infant loss is essential to ensuring that the program genuinely addresses their unique needs and challenges (Bate & Robert, 2007; Donetto et al, 2015).
Following stakeholder engagement, the next step is to define the objectives and scope of the program based on the input received from stakeholders. It's crucial to outline the program's goals for feasibility, inclusivity, emotional support and access to donated breastmilk. Co-design workshops or sessions are then organised, where bereaved mothers, healthcare professionals, and researchers collaborate to brainstorm and design the program.
The participatory metholodology process, which is instrumental in fostering collaboration among stakeholders, involves active engagement and input from diverse stakeholders. This process enables them to work together effectively to generate innovative ideas and co-create solutions that cater to the specific needs of bereaved mothers and their families within the Breastmilk Donor Program (Donetto et al., 2015). By leveraging the collective expertise, experiences and perspectives of these stakeholders, participatory design ensures that the program design is holistic, inclusive, and responsive to the complex challenges faced by bereaved mothers in donating breastmilk or participating in related support programs. The emphasis on collaboration and co-creation, as highlighted by Donetto et al. (2015), ensures that the resulting program is not only innovative but also tailored to address the unique needs and preferences of its intended beneficiaries.
The ideas generated in the co-design workshops are used to develop prototypes or mock-ups of program components. These components may include support materials, eligibility criteria, emotional support mechanisms, and pathways for donating breastmilk. The prototypes are shared with stakeholders, and their feedback is gathered. An iterative process is employed to refine the program based on the feedback received, ensuring that it aligns with the needs and preferences of bereaved mothers.
The next research phase will involve a small group of bereaved mothers participating in a pilot version of the program to assess its feasibility and effectiveness. This phase will also include engaging clinical champions to ensure the program reaches the intended participants. Clinical champions play a vital role in ensuring that women are provided with program information before suppression medication is offered. Continuous feedback is gathered during the pilot phase to identify areas for improvement (Donetto et al, 2015).
Following the pilot testing phase, an evaluation will be conducted to assess the pilot program's outcomes. This evaluation examines its impact on emotional well-being, accessibility to donated breastmilk, and inclusivity. The program is adjusted based on the pilot results and stakeholder input, fine-tuning it for broader implementation (Donetto et al, 2015).
Based on the findings and insights obtained from the program's development and pilot testing phases, a comprehensive Breastmilk Donor Program will be designed for implementation. This formalisation process will involve refining the program based on the feedback received during pilot testing, ensuring its alignment with best practices and evidence-based interventions in supporting bereaved mothers and their families (Donetto et al., 2015).
The outcomes of the study will be shared through a multifaceted dissemination strategy encompassing academic publications, conference presentations, and collaborative engagements with pertinent stakeholders, aligning with the thesis by publication approach Academic publications will serve as platforms to detail research findings, methodologies, and critical insights, contributing significantly to the existing knowledge on bereavement support and infant health (Donetto et al., 2015; Noble-Carr et al., 2023; Fernndez-Medina et al., 2022). Furthermore, conference presentations will facilitate engagement with professionals, policymakers, and advocacy groups, fostering knowledge exchange and potentially influencing the adoption of evidence-based practices. Collaborative efforts with stakeholders, such as healthcare institutions and support organisations, will ensure that the impact of the research extends beyond academia to benefit bereaved families directly, while also aiming to inform state and federal public policy, healthcare programs, and support agencies for broader systemic improvements.
The co-design of the Bereaved Parents Breastmilk Donor and Support Program integrates my extensive experience and connections within the healthcare industry, particularly through my role as Nurse Unit Manager at Mercy Health Breastmilk Bank. In this capacity, I have developed strong clinical and policy networks at both state and national levels, allowing for meaningful collaboration and impactful contributions to healthcare initiatives.
Drawing from my background in nursing and postgraduate studies in Neonatal Intensive Care, I have actively engaged with various stakeholders, including obstetricians, midwives, neonatologists, nurses, lactation consultants, social workers, pastoral care providers, grief counsellors, and program administrators. These connections have facilitated a comprehensive understanding of the needs and challenges faced by bereaved families, shaping my approach to co-designing tailored interventions.
My involvement in research projects and coordination of trials at esteemed institutions like Mercy Hospital for Women and Royal Women's Hospital has equipped me with valuable insights into evidence-based practices and policy implications within the healthcare landscape. These experiences have strengthened my ability to navigate complex issues and collaborate effectively with diverse stakeholders to improve patient-centred care and address systemic challenges.
Through my participation in conferences, presentations, and engagement with industry experts, I have contributed to discussions on nursing care, milk banking, healthcare innovation, and bereavement support. These interactions have not only expanded my professional network but also enhanced my advocacy for inclusive and empathetic healthcare solutions.
By leveraging my clinical expertise, policy connections, and collaborative networks, I am committed to co-designing a Bereaved Donor Program that is informed by evidence, responsive to stakeholder needs, and aligned with industry and policy standards. This approach ensures that the program's development and implementation are grounded in practical insights and strategic partnerships, ultimately benefiting bereaved families on a broader scale.
Timeline of PhD
Ethical Considerations
Ethical considerations play a pivotal role in guiding the co-design process, particularly concerning the sensitive nature of the program and the emotional experiences of bereaved mothers and families. During the project ethical guidelines will be meticulously established, ensuring they align with regulatory requirements and ethical principles such as respect for autonomy, beneficence, non-maleficence, and justice (Beauchamp & Childress, 2019). Informed consent protocols will be developed and implemented to ensure that all participants, including bereaved mothers, healthcare professionals, and support organisations, clearly understand their roles, rights, and responsibilities within the co-design process. Privacy and confidentiality measures will be rigorously upheld to safeguard participant data and sensitive information. Additionally, emotional support resources will be readily available to assist and guide participants who may experience distress or emotional challenges during discussions or activities related to their experiences (Bate & Robert, 2007; Holloway & Freshwater, 2019). The ethical framework established during this phase, with insights from Beauchamp & Childress (2019), will serve as a cornerstone during the co-design process, emphasising ethical conduct, transparency, and participant well-being throughout the program's development and implementation.
Institutional Fit:
Assessing institutional fit throughout months 24 to 30, is essential to ensure that the program aligns with collaborating institutions and organisations' mission, values, priorities, and resources. This will involve comprehensive institutional compatibility and integration evaluations.
Supervisory Fit:
Supervisory fit encompasses the clarity, support, and guidance supervisors and mentors provide within the co-design team. Clear lines of communication and feedback mechanisms will be established to facilitate regular check-ins, progress assessments, and collaborative decision-making.
Resources:
The budget for this research proposal will include expenses related to stakeholder engagement, workshops, prototyping, program development, ethical considerations, program evaluation, scoping review, and pilot program implementation.
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