Parental Decision-Making in the Pediatric Intensive Care Unit: An Integrative Review

Wool, Jesse; Irving, Sharon Y.; Meghani, Salimah H.; Ulrich, Connie M.

doi:10.1177/1074840720975869

Cited by 7 publications

(4 citation statements)

References 45 publications

(110 reference statements)

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“… 3 Our review found that end-of-life decisions affected parents emotionally, causing guilt and regret, even though they were not responsible for the final decision. These feelings of guilt have previously been reported 16 , 17 in relation to parents’ reflections on the role they were expected to play for their infants. 18 Feelings of guilt and regret have also been reported to effect parents’ decision-making and their ability to cope with the consequences.…”

Section: Discussionsupporting

confidence: 58%

“… 18 Feelings of guilt and regret have also been reported to effect parents’ decision-making and their ability to cope with the consequences. 17 When parents make decisions for their infant, they have to balance the best interests of their infant and their own emotional burden. 3 Thus, inappropriate moral responsibility can be avoided by acknowledging the parents’ willingness to take responsibility.…”

Section: Discussionmentioning

confidence: 99%

“…12 Overall, the ideal decisionmaking process has been highlighted as a collaboration between parents and professionals, 14 which involves shared responsibility. 1 Previous studies have mainly found that parents' participation in decision-making during hospitalization was a shared decision-making process, 2,15,16 during situations such as serious illnesses 17 and endof-life decisions. 18 Parents have said they felt responsible for decisions 19 and wanted to take part in decisions that they regarded as part of their normal parental role.…”

Section: Introductionmentioning

confidence: 99%

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Shared responsibility for decision-making in NICU: A scoping review

et al. 2023

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Background Shared responsibility is an essential part of family-centred care and it characterizes the relationship between parents and healthcare professionals. Despite this, little is known about their shared responsibility for decision-making in neonatal intensive care units. Aim The aim of this scoping review was to identify previous studies on the subject and to summarize the knowledge that has been published so far. Method The review was conducted using electronic searches in the CINAHL, PubMed, Scopus and PsycINFO databases and manual searches of the reference lists of the selected papers. The searches were limited to peer-reviewed papers that had been published in English from 2010 to September 2021. The data were selected based on inclusion and exclusion criteria and the findings were inductively summarized. We identified eight papers that met the inclusion criteria. Ethical considerations: The scoping review was conducted according to good scientific practice by respecting authorship and reporting the study processes accurately, honestly and transparently. Results The results showed that shared responsibility for decision-making was based on the parents’ intentions, but the degree to which they were willing to take responsibility varied. The facilitating and inhibiting factors for shared responsibility for decision-making were related to the communication between parents and professionals. The impact was related to the parents’ emotions. Conclusion It is essential that parents and professionals negotiate how both parties will contribute to their shared responsibility for decision-making. This will enable them to reach a mutual understanding of what is in the infants’ best interests and to mitigate the emotional burden of decisions in neonatal intensive care units. More research is needed to clarify the concept of shared responsibility for decision-making in this intensive care context.

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Section: Discussionsupporting

confidence: 58%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Shared responsibility for decision-making in NICU: A scoping review

et al. 2023

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“…These results are in conflict with the fundamental values of family-centered care, where families should be considered as true partners in care of their child and fully empowered to be able to make informed decisions ( 28 , 37 ). To achieve this, parents' individual needs of information and communication need to be considered ( 38 ), parents should be allowed to participate in their child's care as desired ( 39 ), and be informed and invited to participate in shared decision-making ( 40 ). Our study also highlight what caused the loss of a trusting relationship between participants and HCPs, and what facilitated it.…”

Section: Discussionmentioning

confidence: 99%

Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study

Grandjean

Ullmann²,

Marston

et al. 2021

Front. Pediatr.

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PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.

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Psychosocial outcomes in mothers and fathers of chronic critically ill children: a national prospective longitudinal study

Grandjean,

Rahmaty,

Perez

et al. 2024

Intensive Care Med. Paediatr. Neonatal

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Purpose Hospitalization of a child in PICU affects the psychological health and functioning of their family. In case of prolonged or repeated hospitalizations, sources of stress and family needs evolve, which leads to new challenges for families. To date, little is known about changes in the health of chronic critically ill (CCI) children’s family. We aimed to identify and compare psychosocial outcomes of mothers and fathers of CCI children overtime and the associated factors of better family functioning. Methods This national prospective longitudinal study was conducted in eight paediatric intensive care units in Switzerland. Outcome measures included perceived stress, PICU sources of stress, and family functioning using validated standard questionnaires. Family members with a CCI child completed self-reported questionnaires during PICU hospitalization, at discharge and 1 month later. Results A total of 199 mothers and fathers were included. Our results show high levels of stress experienced by parents throughout and after the hospitalization. Sources of stress are mainly related to child appearance and emotional responses and parental role alteration. Family functioning is low throughout the hospitalization and significantly decreased after 30 days of hospitalization (p = 0.002). Mothers experience higher physical and emotional family dysfunction than fathers after PICU discharge (p = 0.05). Family dysfunction is associated with pre-existing low child’s quality of life. Conclusion Our study highlights the importance of reducing the negative impact of PICU stay on parents’ psychosocial outcomes, through early emotional parental support, and appropriate response to their individual needs throughout and after PICU hospitalization.

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Parental Decision-Making in the Pediatric Intensive Care Unit: An Integrative Review

Cited by 7 publications

References 45 publications

Shared responsibility for decision-making in NICU: A scoping review

Shared responsibility for decision-making in NICU: A scoping review

Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study

Psychosocial outcomes in mothers and fathers of chronic critically ill children: a national prospective longitudinal study

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