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While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs...
Context in source publication
Context 1
... note, there were no studies we could find that assessed parental bereavement in LMICs after the death of a child due to cancer. A summary of the papers is found in Table 1 and a map of the low-and middle-income countries where these studies were performed is found in Figure 1. Common themes from the review include: positive community support, as opposed to stigmatization and blame, can improve the bereavement experience. ...
Citations
... population respectively, due to various causes such as traffic accidents, birth defects, cancer, suicide and homicides (CDC, 2023). Because of the psychological, social and physical health impacts of parental bereavement, several different interventions, such as pharmacotherapy, psychotherapy and counseling have been studied to support bereaved individuals (McNeil et al., 2020). World Health Organization (WHO) defines palliative care as the prevention and relief of suffering of adult and pediatric patients and their families facing the problems associated with life-threatening illness (WHO, 2018). ...
Introduction: The management of parent's and family's bereavement, before, during and after the death of a child is a great challenge for health care professionals (HCPs).
Aim: The purpose of this study was to investigate bereavement in pediatric nursing before, during and after the death of a child.
Method: A systematic literature review was performed in PubMed, Scopus, and Open Archives for the years 2013-2023. PRISMA methodology was followed for selection of the articles and PICOS method for the inclusion criteria of an article in the study.
Results: Therapeutic relationship between HCPs and parents/families is reported as moderate to high. Parents mention several factors that negatively affect this relationship, such as lack of strategic assessment for the needs of the bereaved, lack of bereavement care provision usually after death and non-systematic bereavement care provision. Parents agree that follow-up parent meetings after child's death are helpful and physicians seem more comfortable discussing child's death. Parents report several needs related to grief management, caregiving, relationships with HCPs and decision-making.
Conclusions: Effective communication among parents and HCPs, meaningful contact between HCPs, and the care and support of parents before and after the death of the child are done by HCPs. It is important for the farewell process parents learn how to take care of their child, essentially recreating the parenting role, with HCPs directing the entire process of caring. After death, supportive relationship lets parents grieve, trying not to remain in prolonged grief, empowering them emotionally to create outlets, moving on in their lives with respect and dignity.
... This is a significant gap as almost 98% of the global need for palliative care for children resides in LMICs. 37 Our research aimed to address the following question: What programs, services, initiatives, resources, or interventions are offered in hospital settings in LMICs to support bereaved parents after the death of a child (0−18 years old)? Therefore, we performed a systematic review to describe evidence of institutional programs or interventions offered to parents in LMICs after their child died. ...
... This is largely due to the fact that those offering support, also assume the role of counselling and providing a safe space for the bereaved family to express their grief and also share some memories of the late one (a process noted as debriefing) [12,13] . Thus, we say African communities understand the transformative power of collective mourning, recognizing that by coming together, individuals can find solace, share memories, and collectively honour the life of the deceased [8,14,15] . ...
Background information: Bereavement enhances adolescent’s chances of suffering from psychosocial problems globally and adolescents in the Southern African Development Community (SADC) are not an exception. Due to the mourning condition, some of the adolescents become susceptible to multiple mental disorders, stigmatization and social rejection leading to maladaptive coping mechanisms such as substance abuse. Purpose: This study aimed to synthesize the existing literature on the psychological challenges faced by adolescents during bereavement in SADC. Methods: We opted for a scoping review due to its ability to rapidly map the existing literature sourced from international databases (JSTOR, and PubMed), local databases (Sabinet African Journal) and performed hand-search using Google Scholar. We made use of operators and techniques such as Boolean operators, truncations and MeSH terms. The inclusion of the study was limited to adolescents aged 10–26 years within SADC, primary studies (qualitative, quantitative and mixed methods) and a 10-year projection of studies conducted from 2013 to 2023 in SADC. Results: The findings of the study revealed that adolescents in SADC experience feelings of hopelessness, low self-esteem, anger, grief overload, suicidal thoughts, shock and confusion as a result of bereavement. They are also battling with poor academic performance and abuse due to being socially stigmatized and rejected. To cope with this ordeal, some of the adolescents’ resort to dropping out of school, social isolation and substance abuse. Conclusions and recommendations: Our research has revealed that bereavement in adolescents is closely linked with psychological challenges. In addition to psychological distress, our research has unveiled profound social challenges faced by bereaved adolescents. Adolescents frequently encounter the risk of abuse within their families and experience financial hardships following the loss of loved ones. Thus, recommends a constructive active plan for offering support services to bereaved adolescents and, the adoption and promotion of bereavement programs within families, communities and social welfare centres to address risk factors of maladaptive coping.
... These findings highlight the importance of seeking and listening to community and client experiences of quality care, in this case experiences of perinatal death. Quality care is important throughout the childbearing continuum, including during times of perinatal death, and there is a need for greater recognition and investment in perinatal death support services for parents in LMICs [75,76], along with efforts to improve care seeking and health service access to avoid preventable perinatal deaths. A systematic review of parents' experiences of stillbirth in LMICs found that a lack of recognition of stillbirth contributes to parental experiences of stigmatisation, blame, devaluation, and loss of social status [76]. ...
Background
Quality maternal and newborn care is essential for improving the health of mothers and babies. Low- and middle-income countries, such as Papua New Guinea (PNG), face many barriers to achieving quality care for all. Efforts to improve the quality of maternal and newborn care must involve community in the design, implementation, and evaluation of initiatives to ensure that interventions are appropriate and relevant for the target community. We aimed to describe community members’ perspectives and experiences of maternal and newborn care, and their ideas for improvement in one province, East New Britain, in PNG.
Methods
We undertook a qualitative descriptive study in partnership with and alongside five local health facilities, health care workers and community members, using a Partnership Defined Quality Approach. We conducted ten focus group discussions with 68 community members (identified through church, market and other community-based groups) in East New Britain PNG to explore perspectives and experiences of maternal and newborn care, identify enablers and barriers to quality care and interventions to improve care. Discussions were transcribed verbatim. A mixed inductive and deductive analysis was conducted including application of the World Health Organisation (WHO) Quality Maternal and Newborn Care framework.
Results
Using the WHO framework, we present the findings in accordance with the five experience of care domains. We found that the community reported multiple challenges in accessing care and facilities were described as under-staffed and under resourced. Community members emphasised the importance of good communication and competent, caring and respectful healthcare workers. Both women and men expressed a strong desire for companionship during labor and birth. Several changes were suggested by the community that could immediately improve the quality of care.
Conclusions
Community perspectives and experiences are critical for informing effective and sustainable interventions to improve the quality of maternal and newborn care and increasing facility-based births in PNG. A greater understanding of the care experience as a key component of quality care is needed and any quality improvement initiatives must include the user experience as a key outcome measure.
... Further, although certain types of grief reactions and symptoms have been consistently found across different cultures, including difficulties accepting the loss, losing interest in relationships, and feeling dazed and stunned (Xiu et al., 2016;McNeil et al., 2020), differences and variations in symptom expression may exist across cultures. In fact, diagnostic criteria for PGD were mostly based on knowledge of Western grieving populations Boelen et al., 2010;Newson et al., 2011;Schaal et al., 2014), and though yearning or longing for the deceased may be found across cultures He et al., 2014;Li and Prigerson, 2016;Xiu et al., 2016), there may be other culturally-specific symptoms of grief that are not currently included in PGD criteria sets (Killikelly et al., 2018). ...
The death of a loved one – bereavement – is a universal experience that marks the human mental health condition. Grief – the cognitive, emotional, and behavioral responses to bereavement – is thus experienced by virtually everyone at some point in life, while mourning is a process through which grievers come to term with the loss envisioning life without the deceased. Although distress subsides over time among most bereaved individuals, a minority will develop a condition recently identified as Prolonged Grief Disorder (PGD). The present review provides a global perspective on bereavement, grief reactions, and PGD. Although the loss of a loved one and grief reactions are in general experienced consistently across different cultures, differences and variations in their expression may exist across cultures. Especially within specific populations that may be more at risk for PGD, possibly due to risk factors associated with the mechanisms of loss (e.g., refugees, migrants, and conflict survivors). The diagnostic criteria for PGD are mostly based on Western grieving populations and cultural adaptations of PGD treatments are limited. Therefore, cross-cultural development and validation of PGD screening/assessment is critical to support future research of grief reactions and PGD, especially in non-Western contexts, and concerning the potential future global changes and challenges that appear to have a major impact on PGD. More transcultural research on PGD is needed to contextualize and will lead to culture-bound symptom identification of PGD, and the adaptation of current treatment protocols, which may ultimately improve health at the individual level, and health care systems.
... Whilst children with disability living in low-and middle income countries have been the subject of previous reviews, these have focused solely on either rehabilitation 78,80,81 or palliative care. 24,82 The integration of rehabilitation and palliative care approaches to relieve serious health-related suffering, is an emerging paradigm which has not been explored to date in the paediatric context. Concentrating on serious health-related suffering has enabled a mapping of factors that contribute to the challenging lived experiences of these children and their families. ...
Background
In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care.
Aim
To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation.
Design
Scoping review methodology.
Data sources
A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990–2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist.
Results
Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident.
Conclusion
Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.
... In this study, extra-role sympathy referred to actions beyond the call of duty taken by nurses during parents' bereavement for their child. McNeil et al. noted that bereavement support for parents after the death of their child was an essential component of quality palliative care (27). Also, Koch and Jones found that quality palliative care addresses the mourning needs and emotional support of parents (28). ...
Background:
Children with cancer, who are at the end-of-life and facing death, need access to palliative care services, and nurses play an important role in providing these services.
Aims:
To explore the palliative care strategies of Iranian nurses for children dying from cancer.
Methods:
This was a qualitative study with conventional content analysis. Participants were 8 nurses, 1 social worker, 1 psychologist, 2 children, and 4 mothers from the Paediatric Oncology Unit in Semnan, Islamic Republic of Iran, who had experience in palliative care for children with cancer. Data were collected from individuals using in-depth, unstructured and semi-structured interviews and analysed using the Graneheim and Lundman approach. Data rigour increased with credibility, dependability, transferability, and confirmability criteria.
Results:
Data analysis led to the emergence of the concept of "perceived compassion". This theme was derived from the 2 main categories of "feeling the shadow of death on the child" and "comforting accompaniment". Feeling the shadow of death on the child included the subcategories of "pre-death arrangements" and "an opportunity to continue interactions". Comforting accompaniment was derived from 3 subcategories: "preparing to announce the child's death", "extra-role sympathy" and " post-death interactions".
Conclusion:
Perceived compassion was the main strategy used by Iranian nurses to provide palliative care to children dying from cancer.
... 9,13,[15][16][17][18] In response, this is now accepted as good practice in many countries. [19][20][21] This marks a significant change. Previously, spending time with the child was strongly discouraged, with the belief that this supported breaking of ties, 22 and 'recovery' from the loss. ...
... Finally, whilst a range of ethnic, religious and cultural backgrounds were represented in the study, our sample size was too small to explore their possible impacts on experiences of using cooling facilities. We know very little generally about how these factors impact parental bereavement experiences 19,42 and is clearly something which should be prioritised in future research. ...
Background
Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children’s hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled ‘bedrooms’; cooling blankets/mattresses) to slow deterioration.
Aim
To explore parents’ experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes.
Methods
Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment.
Results
Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents’ engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child’s death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself.
Conclusions
As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.
... Additionally, those who received palliative care were less likely to have interventionfocused care, and more likely to have opportunities for EOL communication and advance preparation [4,6]. For parents too, it is becoming increasingly clear that palliative care support is instrumental in preparing for their child's EOL, reducing levels of parental distress and long-term parental grief [20,21]. Taken together, palliative care can play a beneficial role for all parties involved in terms of course of treatment, maximizing QoL, and coping with loss. ...
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.
... Falade (2019), highlights multiple and potentially competing sources of cultural authority in African societies, where high levels of individual commitment to Christianity or Islam co-exist with adherence to traditional rituals and are equally, if not more influential than science [18]. Close family relationships provided important and consistent sources of support to many parents, the primary reliance on relatives or close friends for emotional support after stillbirth is common across other low and high-income settings [19][20][21][22]. In Kenya and Uganda, material and financial support from families was often also required. ...
Background
Stillbirth is an extremely traumatic and distressing experience for parents, with profound and long-lasting negative impacts. Cultural beliefs and practices surrounding death vary considerably across different contexts and groups, and are a key influence on individual experiences, impacting grief, adjustment, and support needs. Few studies have explored cultural influences surrounding stillbirth in an African context. This study explored the influence of cultural beliefs and practices on the experiences of bereaved parents and health workers after stillbirth in urban and rural settings in Kenya and Uganda.
Methods
A qualitative descriptive study design was employed. Face to face interviews were conducted with parents ( N = 134) who experienced a stillbirth (≤ 1 year) and health workers ( N = 61) at five facilities in Uganda and Kenya. Interviews were conducted in English or the participants’ local language, audio-recorded and transcribed verbatim. Analysis was conducted using descriptive thematic analysis.
Results
Commonalities in cultural beliefs and practices existed across the two countries. Three main themes were identified: 1) Gathering round, describes the collective support parents received from family and friends after stillbirth. 2) ‘It is against our custom’ addresses cultural constraints and prohibitions impacting parents’ behaviour and coping in the immediate aftermath of the baby’s death. 3) ‘ Maybe it’s God’s plan or witchcraft’ summarises spiritual, supernatural, and social beliefs surrounding the causes of stillbirth.
Conclusions
Kinship and social support helped parents to cope with the loss and grief. However, other practices and beliefs surrounding stillbirth were sometimes a source of stress, fear, stigma and anxiety especially to the women. Conforming to cultural practices meant that parents were prevented from: holding and seeing their baby, openly discussing the death, memory-making and attending the burial. The conflict between addressing their own needs and complying with community norms hindered parents’ grief and adjustment. There is an urgent need to develop culturally sensitive community programmes geared towards demystifying stillbirths and providing an avenue for parents to grieve in their own way.
