Dr. Katie Boone MBT MD MScCH FRCPC – Canuck Place Children’s Hospice Dr. Boone is a hospital paediatrician and palliative medicine specialist with an interest in medical education. Her clinical interests are in complex symptom management, care for children with medical complexity, and family-centered care.
von der Hude, K., & Garten, L. (2022). Psychosocial Support within the Context of Perinatal Palliative Care: The “SORROWFUL” Model. Children (Basel), 10(1).
Perinatal death presents unique challenges in paediatric palliative medicine. The care of parents and children spans multiple providers including prenatal, obstetrical, paediatric subspecialty, neonatal, and palliative care, thereby making coordination difficult. Parents also face unique grief experiences due to disrupted parent-child bonding, limited parental identity as parents, and lack of shared experience as other family members may not have met the child. Perinatal care providers are well-situated to provide bereavement support to families as they often care for parents before, during, and after birth, and may be the only other people to meet the deceased child.
The article ‘Psychosocial support within the context of perinatal palliative care: The ‘SORROWFUL’ model’ (2022) by Von der Hude & Garten presents a model for psychosocial bereavement support in the context of perinatal palliative care. It is based upon Kerstin Lammer’s ‘TRAUER’ model but has been adapted to the specific needs of bereaved parents in the perinatal period. It also includes the extensive experience of the perinatal palliative care team at Charite Universitatsmedizin Berlin as well as input from the ‘PaluTiN Group’, a German national expert panel for perinatal grief counselling.
The model offers guidance to those who provide individual support to bereaved families. It uses the acronym ‘SORROWFUL’ as a guide. It highlights important elements of perinatal bereavement that can be discussed and reframed along the continuum of bereavement care. The model offers strategies for ensuring the care provided supports the parent’s individual grief process. Although it was created in Germany, it is not specific to any culture, or religion. It includes broad topics central to bereavement care but is presented through the lens of perinatal grief.
The ‘SORROWFUL’ model is both evidence-based and, more importantly, the culmination of extensive experience in perinatal grief support. There is broad content within the model, but it is distilled and scaffolded onto 9 key ideas. The simplicity of the model allows clinicians with less experience in grief support or perinatal care to expand their knowledge and fall back on a simple framework when providing support. It encompasses key elements of bereavement care but is framed using issues specific to perinatal loss.
It appears that the target audience are providers of individual perinatal bereavement support. However, the model could be more broadly applicable to anyone providing care to children with serious illness in the perinatal period. Given the complexity of care for this population, every provider has a role to play in supporting families in their grief. This model provides a shared mental model that can allow clinicians to provide support along the continuum from prenatal to palliative care. Training would, therefore, be useful at all levels of perinatal care. Clinicians may not provide the full scope of the model but may provide a piece of bereavement care and can envision how their support fits into the broader grief experience of the families they care for.
This article brings to mind a clinical case I encountered recently. The patient was a pregnant mother carrying a child with trisomy 18. She described how she innately wanted to bond with her baby but was afraid to become emotionally invested since he would likely die before or soon after birth. She was hopeful she would get to meet her baby but was also terrified about what that experience might be like. She had decided not to tell her extended family about the baby’s prognosis both to protect them and because she felt ashamed. She also felt isolated from her husband as he didn’t understand what she was experiencing.
She was connected with the pediatric palliative care team during her pregnancy by her high risk obstetrician. Meeting during her weekly OB visits, we spoke about her baby as an unborn person and wondered aloud about what he might be experiencing. We provided opportunities for them to connect further through 3D ultrasound, belly molds, and prints and photos after he was born. We also provided advice on supporting her relationship with her husband and extended family. Over time, she appeared more relaxed and comfortable speaking about her baby. She felt increased connection with her family and husband, as she shared her experience with them, and they all had an opportunity to bond with their baby. Sadly, her baby died in utero and she was not able to meet him as she had hoped. However, she was able to share experiences with him and her family despite this. She delivered him with the support of her obstetrician and labour nurses. Despite her fears, she had the opportunity to spend some time with him after he was born, supported both by our team and her nurses. She was followed by our bereavement program throughout her pregnancy, and they continued to follow her after his death.
Many of the themes presented in this article are represented in this clinical case. The limited parental bonding and identity, sense of failure, desire to protect others, and social isolation. It also highlights how bereavement care, provided by multiple clinicians along the patient’s journey, can support some of these issues and help to prevent complicated grief. The model presented in this article has the capacity to change clinical practice and support clinicians in providing care to this unique population.
View the 2023 Issue #03 Citation List in Library