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Volunteers’ experiences of providing bereavement care to parents following the diagnosis of a fatal fetal anomaly

The term fatal fetal anomaly is a condition that will likely lead to the death of the fetus within utero or within the neonatal period (28 days of life) despite active treatment. While this definition is generally accepted, there is no universally agreed definition of what constitutes a fatal fetal anomaly, nor is there a list of conditions that belong to this term. This definition does not however adequately describe many of the conditions associated with this term as known survivors are linked to many of these conditions.

Losing a baby can evoke a strong emotional response, impacting on both the physical and mental wellbeing of parents. In a time of intense emotional distress and grief, parents require various levels of support (Bereavement Care Standards Group, 2016). Health and social care professionals may recommend voluntary organisations to parents, while many parents themselves turn to voluntary organisations for ongoing support. Voluntary organisations are defined as all forms of activity that is undertaken of a person’s choice with no financial gain for volunteering.

Voluntary organisations have long played a significant role in health and social care in responding to the unmet needs of both individuals and policy worldwide. In Ireland, there has been an overreliance on voluntary organisations to provide peer support to bereaved parents (Enjolras et al. 2018). However, little is known about the experiences of volunteers offering peer support to parents who experience a fatal fetal anomaly diagnosis.

Research study
A study was conducted to explore volunteers’ experiences of supporting families following a fatal fetal anomaly diagnosis in the Republic of Ireland, using a qualitative interpretive descriptive approach.

A qualitative interpretive descriptive approach facilitated the researcher to delve into volunteers’ experiences of supporting parents who receive a diagnosis of a fatal fetal anomaly at a time where termination of pregnancy for a fatal fetal anomaly is being provided for, for the first time. This inductive approach described by Thorne represents a co-constructive truth, it moves beyond the level of description of the phenomenon and articulates a meaning of and explanation for these experiences, generating implications for practice and application of these (Thorne, 2016; Thorne et al., 2004).

Purposive sampling was used to recruit volunteers to participate in this study (n=17). Face-to-face interviews were conducted and transcribed verbatim. A thematic analysis was utilised to examine the pattern of meaning of volunteers’ experiences of supporting parents who experience a fatal fetal anomaly diagnosis.

Research study results

5 themes were identified:

  1. Motivation for altruistic acts.
  2. Being challenged.
  3. Value of education and training.
  4. Supporting volunteers to support others.
  5. It is not a sprint, it is a marathon.

Summary of findings based on these 5 key themes
15 participants had a personal experience of pregnancy loss or perinatal death, with 11 of these due to a fatal fetal anomaly. Of the two remaining participants, one had a family experience of a fatal fetal anomaly and the other had a friend who experienced a pregnancy loss.

Nearly all of the participants who experienced a pregnancy loss or perinatal death described having  negative healthcare experiences (Power et al., 2021). Despite this, they all found positives within their care, usually an encounter with a healthcare professional who provided support. It was these personal experiences that influenced them to volunteer to ‘spare somebody else the intensity of certain parts of the experience’ that they could by sharing their own experience.

Motives for volunteering
Volunteers’ own experiences of support from voluntary organisations influenced them in becoming a volunteer. Those who felt well supported by their voluntary organisation wanted to give back and continue the support they received and therefore chose to volunteer with that organisation. Those who experienced support that was inadequate or unhelpful wanted to ensure this would not happen to others and so either stayed with that organisation to assist with improvements or sought another voluntary organisation to volunteer with.

Continuing bonds motivated volunteers to engage in peer-to-peer support as it was an opportunity for them to ‘reconnect’ with their baby that died, to carry on their legacy and gave a sense of purpose to their trauma and loss.

They also shared their need to be ready and comfortable in their own grief before supporting others. Some associated being ready with a period of time, while some felt it was volunteering that assisted them with being ready and a few referring to having other children that enabled them to provide the peer-to-peer support.

Challenges associated with volunteering
Participants shared the difficulties and challenges they experienced as a result of volunteering. The majority of participants reported being emotionally challenged in their peer support role, finding it challenging to ‘separate’ themselves from the parents’ pain or reliving their own personal experience of the death of their baby.

14 of the 17 participants spoke about the need for non-judgmental care to those who had a termination of pregnancy for a fatal fetal anomaly diagnosis, sharing that it was the “same loss” and “same grief,”. They shared challenges experienced following the introduction of termination of pregnancy for a fatal fetal anomaly diagnosis services. These included being ‘busier; with a ‘lot more referrals’. This resulted in participants feeling they had ‘stretched resources’.

For some of the participants, challenges were related to the restrictive nature of the legislation, creating a “divide” which they felt excluded those with a diagnosis of a non-fatal but severe fetal anomaly. They felt, those whose baby would not live due to a severe fetal anomaly, but not deemed fatal as death may not occur prior to the 28 days, were being excluded as they had to continue to travel for a termination of pregnancy. Participants shared the challenge of trying to support parents, who with the same diagnosis, were treated differently and the lack of standardised care within the health service. Furthermore, many participants felt they had insufficient knowledge on termination of pregnancy for fatal fetal anomaly or specifically the termination of pregnancy service in the Republic of Ireland, to support parents with the correct information.

Identified needs associated with volunteering
All participants identified the importance of education/training and that ‘there is always learning’, with nearly half identifying the need for further training. Participants acknowledged that while they were offering peer-to-peer support, as a parent, and could listen and share their own experiences, ongoing education and training was required to keep their ‘standards up’.

Additionally, volunteers expressed their need to be supported in their voluntary role. They suggested the need to collaborate with health and social care professionals and other voluntary organisations. This was to ensure parents throughout the Republic of Ireland were being adequately and competently supported following a diagnosis of a fatal fetal anomaly.

Volunteers identified the need for self-care and that it was self-care activities, and support from their families and colleagues within the Organisation that assisted them to continue their volunteering role. Despite their approach to self-care and support received from family, friends, and other volunteers, some volunteers did emphasise that they would welcome formal counselling.

Key Messages

  1. Challenges of providing peer support to bereaved parents: While most of the volunteers reported feeling comfortable in their peer support role, they faced challenges. These included the emotional challenge of supporting parents who experienced a pregnancy with a fatal fetal anomaly, organisational challenges, and the change in service following the implementation of termination of pregnancy for fatal fetal anomaly for the first time in the Republic of Ireland.
  2. Value of education, training and collaboration: All participants shared their need to be knowledgeable, with half of the volunteers requesting further education to ensure they are delivering a good standard of care and support. Volunteers’ knowledge and practice are required to be of optimal quality and reflect that of the changing needs of parents dealing with a fatal fetal anomaly diagnosis. This is of particular importance as they are required to manage highly emotive situations while balancing their own wellbeing (Fisher et al., 2014).
    In addition to maintaining accurate knowledge and skills to support parents with a fatal fetal anomaly diagnosis, they expressed the importance of collaborative work with both health and social care professionals and other voluntary organisations to ensure they are adequately supporting parents who experience a pregnancy diagnosed with a fatal fetal anomaly.
  3. Volunteers need for self-care and support: Self-care, self-care activities, and support from their families and colleagues within the voluntary organisation is required for volunteers to continue their volunteering role. Some volunteers reported that they would welcome formal counselling to assist and support them as a volunteer.

Volunteers play a key role in filling gaps in health and social care provision and policy, responding to the bereavement care needs of parents (Department of Health and Children, 2010). However, their knowledge and practice need to reflect that of best practice to respond to the ever-changing needs of bereaved parents. Therefore, they should be given educational opportunities and provided with information on how to access services to manage their own health and assist others in doing so. Further research to measure parental outcomes of receiving peer support would also be of benefit.

Volunteers require various emotional and physical supports to continue in their voluntary role. Our findings illustrate the need for collaborative working between health and social care professionals and volunteers to assist them in supporting parents who experience a fatal fetal anomaly diagnosis. Furthermore, it suggests the need for voluntary organisations to collaborate with each other to promote the delivery of accurate information and continuity of care to all parents who require peer-to-peer support. Being supported in their role and sharing the workload would assist them in their own self-care and therefore facilitate wellbeing while acting as a Volunteer.

Power S, O’Donoghue K, Meaney S. Experiences of Volunteers Supporting Parents Following a Fatal Fetal Anomaly Diagnosis. Qualitative Health Research. 2021;31(5):835-846. ‘Experiences of Volunteers Supporting Parents Following a Fatal Fetal Anomaly Diagnosis’ (Accessed May 12 2021: https://doi.org/10.1177/1049732320987834)

Bereavement Care Standards Development Group. (2016). National standards for bereavement care following pregnancy loss and perinatal death. Health Service Executive. (Accessed May 16th 2021: https://www.hse.ie/eng/services/list/3/maternity/bereavement-care/national-standards-for-bereavement-care-following-pregnancy-loss-and-perinatal-death.pdf)

Department of Health and Children (2010) ‘Palliative care for children with life limiting conditions in Ireland – A National Policy’. Department of Health and Children, Dublin.

Enjolras, B., Salamon, L. M., Henrik Sivesind, K. & Zimmer, A. The Third Sector as a Renewable Resource for Europe. (Springer, 2018). doi:10.1007/978-3-319-71473-8

Fisher, E. B., Coufal, M. M., Parada, H., Robinette, J. B., Tang, P. Y., Urlaub, D. M., Castillo, C., Guzman-Corrales, L. M., Hino, S., Hunter, J., Katz, A. W., Symes, Y. R., Worley, H. P., & Xu, C. (2014). Peer support in health care and prevention: Cultural, organizational, and dissemination issues. Annual Review of Public Health, 35, 363–383. (Accessed May 12 2021: https://doi.org/10.1146/annurev-publhealth-032013-182450)

Power, S. , O’Donoghue, K. and Meaney, S. (2021) ‘Experiences of volunteers supporting parents following a fatal fetal anomaly diagnosis in Ireland’, Qualitative Health Research, 1(5), pp. 835–846. (Accessed May 28th 2021: https://doi.org/10.1177/1049732320987834)

Thorne, S. (2016). Interpretive Description: Qualitative Research for Applied Practice (2nd ed.). Routledge.

Thorne, S., Kirkham, S. R., & O’Flynn-Magee, K. (2004). The Analytic Challenge in Interpretive Description. International Journal of Qualitative Methods, 3(1), 1–11. (Accessed May 25th 2021: https://doi.org/10.1177/160940690400300101)