OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.
PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.
RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).
CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
BACKGROUND: Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear.
AIM: This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes.
METHODS: Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed.
RESULTS: Parents rated their general health close to good, physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer/stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds.
CONCLUSION: Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC.
This article deals with the issue of perceived social support among 40 bereaved parents who have lost a child in a terrorist attack in Israel. The aim is to gain a better understanding of the nature and quality of the formal and informal support that the parents received. The parents were interviewed using semistructured in-depth interviews. The content analysis revealed that alongside the positive aspects, the parents also emphasized the negative side of the encounter with the social environment. The positive aspects included feeling of appreciation for the assistance in the coping process. The negative aspects included a sense of abandonment and distress. The dialectic nature of the domain, together with a recognition of its importance, points to the need to reconcile between the desire on the part of the social environment to assist the bereaved parent on one hand and ways to implement it on the other hand.
Despite the increasing number of people being bereaved by suicide, little is understood concerning the experiences of those bereaved by suicide as they struggle to make sense of a loved one’s death. The current study explored the experiences of four mothers who had been bereaved by suicide and the role of support groups in the meaning-making process following bereavement by suicide. Participants were interviewed and transcribed interviews were then analysed from an interpretative phenomenological perspective. Four main themes were identified: Continuing role of the mother; A never-ending quest; Finding sanctuary; and Rising up from the ashes. These themes relate to a range of emotions following bereavement by suicide, the meaning-making process, the social context and the role of the support group. Clinical implications are discussed in relation to these findings.
Child loss is the most traumatic loss a parent can experience, increasing their risk of negative outcomes such as complicated grief. Unexpected loss in the unfamiliar environment of the Emergency Department (ED) significantly increases this risk. Despite this knowledge, research on child loss in the context of the ED is scarce. An interpretive description qualitative research study was performed with eight parents (five mothers and three fathers) to examine their experience of unexpectedly losing a child in the pediatric ED. Data collection included interviews, demographic questionnaires, and field notes. Data were analyzed using a constant comparative method and revealed four main themes: “grief as waves,” “being the good parent,” “coping through the waves of grief,” and “the new normal.” Improving understanding around child loss and implementing stronger support for parents, through communication, advocacy, and physical presence while in the ED, could greatly reduce parents’ risk of negative outcomes.
BACKGROUND: Pregnancy and infant loss has a pervasive impact on families, health systems, and communities. During and after loss, compassionate, individualized, and skilled support from professionals and organizations is important, but often lacking. Historically, little has been known about how families in Ontario access existing care and supports around the time of their loss and their experiences of receiving such care.
METHODS: An online cross-sectional survey, including both closed-ended multiple choice questions and one open-ended question, was completed by 596 people in Ontario, Canada relating to their experiences of care and support following pregnancy loss and infant death. Quantitative data were analyzed descriptively using frequency distributions. Responses to the one open-ended question were thematically analyzed using a qualitative inductive approach.
RESULTS: The majority of families told us that around the time of their loss, they felt they were not adequately informed, supported and cared for by healthcare professionals, and that their healthcare provider lacked the skills needed to care for them. Almost half of respondents reported experiencing stigma from providers, exacerbating their experience of loss. Positive encounters with care providers were marked by timely, individualized, and compassionate care. Families indicated that improvements in care could be made by providing information and explanations, discharge and follow-up instructions, and through discussions about available supports.
CONCLUSIONS: Healthcare professionals can make a positive difference in how loss is experienced and in overall well-being by recognizing the impact of the loss, minimizing uncertainty and isolation, and by thoughtfully working within physical environments often not designed for the experience of loss. Ongoing supports are needed and should be tailored to parents' changing needs. Prioritizing access to specialized education for professionals providing services and care to this population may help to reduce the stigma experienced by bereaved families.
OBJECTIVE: To report on research conducted on men's experiences of grief and loss following stillbirth and neonatal death in high-income, Western countries.
DESIGN: This review was guided by the following research questions: 1. The impact of perinatal death for men 2. The meaning of the loss for a father's sense of identity 3. The extent to which men were able to express grief while supporting their partners and, 4. how men's experience of grief was mediated by the support and care received by health professionals.
DATA SOURCES: We searched the following databases: Medline; PsychINFO; CINAHL to identify relevant articles published from the year 2000 onwards. The searches were run between 1/04/2018 and 8/4/2018.
REVIEW METHODS: A scoping review was conducted of nursing, psychological, medical and social science databases using these key words: fathers' grief, men's grief, perinatal loss and death, stillbirth and neonatal death.
RESULTS: Studies indicated that men reported less intense and enduring levels of psychological outcomes than women but were more likely to engage in avoidance and coping behaviours such as increased alcohol consumption. Men felt that their role was primarily as a 'supportive partner' and that they were overlooked by health professionals.
CONCLUSIONS: Further research is needed on men's experience of grief following perinatal death, especially on their physical and mental well-being.
IMPACT: This review addressed the problem of the lack of knowledge around paternal needs following perinatal death and highlighted areas which researchers could usefully investigate with the eventual aim of improving care for fathers.