‘Every Woman Wants to Know What Came out of Her Body’: Grief Experiences of Women After Stillbirth in Nigeria

Stillbirth commonly affects women in Nigeria, but their experiences of grief following stillbirth is under explored. This study aimed to describe Nigerian women’s experiences of grief after stillbirth. Face-to-face, semi-structured interviews were conducted with 20 women in Nigeria who experienced stillbirth. The results from the thematic analysis suggest that mothers had an unmet need to see their stillborn baby, and they experienced communication challenges such as being blindsided/misled about the baby during their interactions with health personnel. The participants experienced emotional and psychological reactions to grief that manifested in the form of emotional pain, sadness, blame and shock, but having a sense of gratitude helped them cope. The findings of this study highlight gaps in bereavement care and suggest the need for basic bereavement training for health personnel.

The Virulence of Grief in the Pandemic: Bereavement Overload During COVID

The COVID-19 pandemic brought about bereavement overload as a risk factor for complicated grief. Bereavement overload (BO) describes individuals’ reactions to losses transpiring in a quick succession, without the time and opportunity for coping [9]. It can occur during catastrophic events and impact everyone experiencing the loss. With the high death toll from COVID-19, many people have lost multiple loved ones followed by an abbreviated grieving process due to the nature of the pandemic. This can have psychosocial impact on survivors for years. One of the evolving roles of Palliative Care within and after the pandemic should be to recognize those suffering from BO. Obtaining loss histories may identify those at risk of pathologic grief to provide preventive bereavement care. We present three cases encountered in our health system during the COVID-19 pandemic amongst a family member, a patient, and a healthcare provider. In each case the Palliative Care Team worked closely with these individuals to identify COVID-associated BO and helped them reconcile their unresolved grief to be able to move forward. These cases reflect only a fraction of those who experienced loss during the pandemic, but they illustrate how grief can be complicated by the pandemic for everyone involved. Palliative Care will have a crucial role moving forward, in treating the pandemic of complicated grief within the pandemic to adapt to the needs of all survivors, as we realize the effects of COVID will last long after its virulence has waned.

Preliminary findings on the experiences of care for parents who suffered perinatal bereavement during the COVID-19 pandemic

Background The COVID-19 pandemic poses an unprecedented risk to the global population. Maternity care in the UK was subject to many iterations of guidance on how best to reconfigure services to keep women, their families and babies, and healthcare professionals safe. Parents who experience a pregnancy loss or perinatal death require particular care and support. PUDDLES is an international collaboration investigating the experiences of recently bereaved parents who suffered a late miscarriage, stillbirth, or neonatal death during the global COVID-19 pandemic, in seven countries. In this study, we aim to present early findings from qualitative work undertaken with recently bereaved parents in the United Kingdom about how access to healthcare and support services was negotiated during the pandemic. Methods In-depth semi-structured interviews were undertaken with parents (N = 24) who had suffered a late miscarriage (n = 5; all mothers), stillbirth (n = 16; 13 mothers, 1 father, 1 joint interview involving both parents), or neonatal death (n = 3; all mothers). Data were analysed using a template analysis with the aim of investigating bereaved parents’ access to services, care, and networks of support, during the pandemic after their bereavement. Results All parents had experience of utilising reconfigured maternity and/or neonatal, and bereavement care services during the pandemic. The themes utilised in the template analysis were: 1) The Shock & Confusion Associated with Necessary Restrictions to Daily Life; 2) Fragmented Care and Far Away Families; 3) Keeping Safe by Staying Away; and 4) Impersonal Care and Support Through a Screen. Results suggest access to maternity, neonatal, and bereavement care services were all significantly reduced, and parents’ experiences were notably affected by service reconfigurations. Conclusions Our findings, whilst preliminary, are important to document now, to help inform care and service provision as the pandemic continues and to provide learning for ongoing and future health system shocks. We draw conclusions on how to enable development of safe and appropriate services during this pandemic and any future health crises, to best support parents who experience a pregnancy loss or whose babies die.

Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement

Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.

Exploring the Social Networks of Women Bereaved by Stillbirth: A Descriptive Qualitative Study

The loss of a baby to stillbirth is a traumatic experience and can lead to secondary losses, such as the loss of social relationships. In Nigeria, stillbirths are a common public health problem. However, limited attention has been given to the social ramifications of stillbirths. This study describes the social networks of women who have experienced a stillbirth and the factors influencing their social networks. Interviews and social network diagrams were used to collect data from 20 women about their social networks before and after stillbirth. Findings suggest that the experience of shame, unmet expectation of support, and a lack of trust led to relationship changes after stillbirth. Most participants met bereavement needs with their existing social networks before stillbirth, but many participants also experienced relationship losses (even among family networks). Information from social network analysis can reveal the risks and strengths inherent in social networks, which can be helpful for the provision of tailored/personalized bereavement care.

Patient awareness of palliative care: systematic review

BackgroundOne of the barriers to the integration of palliative care within the process of patient care and treatment is the lack of awareness of patients about palliative care. In order to develop efficient resources to improve patient awareness, comprehensive information is required to determine the specific aspects of palliative care where a paucity of evidence on patient awareness exists. This review aims to synthesise evidence from previous studies in order to provide a comprehensive information set about the current state of patient awareness of palliative care.MethodsIn this systematic literature review, PubMed, Scopus, Web of Science, ProQuest, Magiran, Scientific Information Database(SID) and Islamic Science Citation (ISC) were searched to identify articles published between 2000 and 2021 that considered patients’ awareness of palliative care.ResultsOf the 5347 articles found, 22 studies were retained after quality evaluation; three full-text articles were excluded. Nineteen articles are included in this review. More than half of the patients did not have any information about palliative care or hospice care. Some patients accurately defined hospice care and palliative care; other patients had misunderstandings about palliative care. Patients had limited information about pastoral care, social care and bereavement care. Patients’ awareness about individuals or centres providing palliative care or hospice care was limited. Video presentation and distribution of information at the community level indicated that this method would be beneficial in increasing the awareness.ConclusionThe review points to the need for patient education programmes and interventional studies to increase patients’ awareness.