Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study

Abstract

This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

“…The testimonies corroborate with Australian and Brazilian authors, who affirm that the diagnosis caused fear when they were faced with the disease. [9][10] When the diagnosis of the child's disease occurs during pregnancy or in the neonatal period, mothers may present feelings of guilt regarding the malformation, generating stress in a period of physiological and psychosocial changes, in which the mother's imagination lies in the perception of a "perfect"child, according to the following reports: [ It was noted that most of the caregivers were diagnosed with the child's diagnosis of CKD during pregnancy due to a congenital malformation of the urinary tract, which can cause the mother to feel guilty and carry the guilt for the rest of her life.…”

Carers’ Experiences of End‐of‐Life Care: A Scoping Review and Application of Personal Construct Psychology

“…This literature found that carers were often unprepared when finding themselves in situations where they must assist with activities of daily living, manage medication, and provide physical care and transportation, amongst other practical tasks (Funk et al, ; Stajduhar et al, ; Williams & McCorkle, ). The time commitment involved in providing end‐of‐life care had other practical challenges associated, such as an impaired ability to maintain existing social connections, employment, or recreational activities (Beng et al, ; Collins et al, ). Similarly, providing end‐of‐life care had significant financial impacts for some carers (Lewis, ; Stajduhar et al, ).…”

“…Carers were found to experience burnout as a result of their practical caring responsibilities, and also related to grieving processes as care recipients declined in health (Beng et al, 2013). Increased levels of anxiety, depression, and psychological distress were also reported amongst end-of-life carers, to the extent that negative psychological outcomes could be more significant amongst carers than their dying family members or friends (Beng et al, 2013;Collins et al, 2016;Linderholm & Friedrichsen, 2010;Melin-Johansson, Henoch, Strang, & Browall, 2012;Stajduhar et al, 2010;Totman et al, 2015;Williams & McCorkle, 2011). Those who cared for a dying family member at home were also found to be at risk of experiencing significant loneliness and isolation.…”

“…Those who cared for a dying family member at home were also found to be at risk of experiencing significant loneliness and isolation. This isolation was underscored by the Carers' experiences of end-of-life care loss of previous social lives, and was a function of the consuming nature of providing care at end-of-life (Collins et al, 2016).…”

Paediatric palliative care and intellectual disability—A unique context

“…For respite ("short break" care), or end-of-life care, some families wish to be in a hospice or other homelike environment where there is more constant support from healthcare professionals (Collins et al, 2016;Smith, Graham, & Herbert, 2016). One recent study by Lindley, Colman, and Meadows (2017) found that intellectual disability in children was negatively related to hospice enrolment/utilization and length of stay, although more common when children had additional comorbidities.…”