Extended Family Support for Parents Faced with Life-Support Decisions for Extremely Premature Infants

Kavanaugh, Karen; Nantais-Smith, Leanne M.; Savage, Teresa A.; Schim, Stephanie Myers; Natarajan, Girija

doi:10.1891/0730-0832.33.5.255

Cited by 8 publications

(9 citation statements)

References 29 publications

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“…Although, at least in principle, medical ethic and discourse have embraced autonomous choice, most parents actually prefer some level of shared or collaborative decision making. They want to be able to talk with healthcare providers and make a decision with them [ 71 , 72 , 85 , 86 , 87 , 88 ].…”

Section: What Providers Can Domentioning

confidence: 99%

Supporting Parent Caregivers of Children with Life-Limiting Illness

Koch

Jones

2018

Children

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The well-being of parents is essential to the well-being of children with life-limiting illness. Parents are vulnerable to a range of negative financial, physical, and psychosocial issues due to caregiving tasks and other stressors related to the illness of their child. Pediatric palliative care practitioners provide good care to children by supporting their parents in decision-making and difficult conversations, by managing pain and other symptoms in the ill child, and by addressing parent and family needs for care coordination, respite, bereavement, and social and emotional support. No matter the design or setting of a pediatric palliative care team, practitioners can seek to provide for parent needs by referral or intervention by the care team.

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Section: What Providers Can Domentioning

confidence: 99%

Supporting Parent Caregivers of Children with Life-Limiting Illness

Koch

Jones

2018

Children

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“…The literature search revealed 15,159 deduplicated records, from which 17 papers were selected for inclusion in this review. Most of the studies were conducted in the United States (n = 12) [20][21][22][23][24][25][26][27][28][29][30][31] and the others came from Canada (n = 2), 32,33 Switzerland (n = 1), 34 Norway (n = 1) 35 and the Netherlands (n = 1). 14 An overview of the characteristics of all included studies can be found in Table S1.…”

Section: Discussionmentioning

confidence: 99%

A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth

Boer

Vries

Berken³

et al. 2023

Acta Paediatrica

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Parents need to be involved in prenatal decisions about neonatal treatment if their baby is likely to be born extremely premature -in the so-called grey zone, which is between 22 and 26 weeks of gestation, depending on time, country and culture. [1][2][3] The two treatment options in this grey zone are intensive care and comfort care.Intensive care treatment comes with great uncertainty regarding the outcome: some infants will not survive, some will go through life with one or more disabilities, and others will grow up without any problems. 4 As decisions in the grey zone are value laden, 5 a shared decisionmaking approach is recommended. [6][7][8][9] This involves mutual recognition of the need for a decision, followed by a discussion of the treatment options with their pros and cons, as well as an exploration of the parental values to be incorporated. 10,11 This exploration, known as values clarification, will allow treatment decisions to be aligned with personal goals and circumstances. 12 When a prenatal

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“…Therefore, the notion that collectivist cultures promote collective identity, stability, obligations and group decisions is questionable as there is evidence of the inability of families to hold things together when having social discourse at the dinner table; and Roopnarine and Hossain (2013) noted that a number of homes in Africa are built on nuclear orientation rather than extended families. Also, most collectivist homes in Africa, decisions are not made in collective rather the head of the family is the decision-maker (Kavanaugh et al, 2014). …”

Section: Individualism/collectivism:-mentioning

confidence: 99%