Subject(s)
Identification, Psychological , Patients , Physicians , Risk Reduction Behavior , Humans , United StatesSubject(s)
Love , Patients/psychology , Resilience, Psychological , Anecdotes as Topic , Carcinoma, Small Cell , Humans , United StatesSubject(s)
Patients/psychology , Physician-Patient Relations , Humans , Patients/classification , United StatesABSTRACT
OBJECTIVE: To elicit bereaved multiple-birth parents' perceptions regarding support, disposition decisions, attachment to surviving multiples, discharge, and later coping. STUDY DESIGN: Narrative email survey of 70 bereaved parents with quantitative and qualitative analysis. RESULTS: Bereaved parents of multiples find neonatal hospitalization stressful. Not all caregivers acknowledged loss, although most parents would welcome brief loss discussions during survivors' hospitalization. Half of respondents felt social workers could help coordinate support or mental health care. Most participants recalled hospital support for loss, but only 43% recalled support for neonatal hospitalization. Respondents praised peer support and written materials. Parents felt ambivalent about disposition for deceased babies while comultiples were ill; most made prompt arrangements. Attachment to survivors was difficult for half. Breastfeeding and discharge planning were important, and 31% had difficulty coping at home. CONCLUSIONS: Caregivers must communicate better with bereaved multiple-birth parents, whose desires for support, loss discussions, disposition, and discharge vary considerably.
Subject(s)
Adaptation, Psychological , Bereavement , Hospitalization , Multiple Birth Offspring , Parents/psychology , Patient Discharge , Breast Feeding , Caregivers , Female , Funeral Rites , Humans , Infant, Newborn , Male , Parent-Child Relations , Personnel, Hospital , Social Support , Social WorkABSTRACT
OBJECTIVE: This study assessed the experiences of bereaved parents of multiples with resuscitation and life-support discussions, the death process, and conversations with health-care professionals about death. STUDY DESIGN: In all, 71 bereaved parents of multiples recruited from Internet support groups completed a narrative e-mail survey assessing many facets of bereavement. Numeric data were analyzed using simple quantitative analysis, with a grounded theory approach used for qualitative data. RESULTS: Most decisions were collaborative, with occasional directive comments. Some decisions were made during crises. Occasionally, parents initiated life-support discussions. Multidisciplinary meetings occurred with 30%, but were desired by more parents. A total of 18% of parents encountered criticism of choices. Most parents attended resuscitation, and found meaning in holding their dying children. Many desire privacy, availability of symptom management, and family or clergy involvement. Photographs of multiples together are valued. Parents offered many suggestions for compassionate death notification, which most felt should occur in person if parents are not present for the death. Respondents valued clear, prompt discussion of the cause of death, and clinician availability for later review of clinical events or decisions. CONCLUSIONS: Multiple-birth parents' choices resemble those of singleton parents at the end of an infant's life.
Subject(s)
Attitude to Death , Life Support Care/methods , Multiple Birth Offspring , Professional-Family Relations , Bereavement , Communication , Data Collection , Decision Making , Female , Humans , Infant, Newborn , Intensive Care Units, Neonatal , Male , Surveys and QuestionnairesABSTRACT
Grief after the death of some or all multiples differs from mourning for a singleton loss in many important respects. A review of the unique features of grief for a multiple birth loss is followed by practical suggestions for empathic care. Cherished mementos and photos, and disposition options for deceased children are discussed. Counselling needs of parents and siblings are detailed, and management options for many complex pregnancy and infant loss scenarios are presented. The abundant resources listed will help caregivers and families better cope with one of the most difficult complications of plural parenthood.
Subject(s)
Bereavement , Fetal Death , Multiple Birth Offspring , Pregnancy, Multiple , Directories as Topic , Female , Humans , Pregnancy , Professional-Family Relations , Voluntary Health AgenciesABSTRACT
Cultural beliefs about the nature of multiples appear in the mourning practices of many civilizations. Ethnographic literature suggests common themes that echo modern concepts. Many societies viewed twins as fragile, likely to die without preferential or meticulously equal treatment. A shared soul between twins is a common tenet, and the death of one is often felt to herald the other's prompt demise. The close relationship between multiples influences funerary rites. Honor, fear and mysticism are often evident in rituals. Twin infanticide was widely practiced, yet mourning customs were still observed. Many peoples recognize the special status of multiples and their families after one, two or more die.
Subject(s)
Attitude to Death , Bereavement , Cultural Characteristics , Twins/psychology , Funeral Rites , Humans , Infant, Newborn , Infanticide , ReligionABSTRACT
We invited bereaved twins, parents of twins and carers to describe some of their personal experiences. We are grateful to all of them for their brave candour. We gave extra space to Kathy's story about the impacts of the loss of her own twin because it vividly illustrates the profound connections twinship can generate. Similarly we thought the cruelly long and complex saga of the life and death of Maxine's twins could help understanding of the distressing repercussions that often attend the low birth weight and prematurity that are so common amongst multiple births.
