A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
child; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Funkquist EL; Lindquist A; Edner A
Journal of Perinatal & Neonatal Nursing
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</a>
Spirituality among parents of children with cancer at AUBMC
spiritual care; semi structured interview; caregiver; cancer center; childhood cancer; health care personnel; powerlessness; genetic transcription; conference abstract; human; child; female; male; clinical article; palliative therapy; religion; fear; Lebanon; social needs
Doumit MA; Majdalani M; Saab R; Rahi A
Cancer Nursing
2016
<a href="http://doi.org/10.1097/NCC.0000000000000441" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000441</a>
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>