The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Chin, Wei Ling Audrey; Jaaniste, Tiina; Trethewie, Susan

doi:10.3390/children5070097

Cited by 17 publications

(16 citation statements)

References 65 publications

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“…Our results points out the negative impact of the child hospitalization on the siblings, but also their ability to develop some adaptation strategies. A recent review shows, however, the considerable variation in the adjustment and functioning of healthy siblings ( 49 ). Although research on siblings' experiences and long-term outcomes remains limited ( 50 ), it is an area that captured the attention of researchers ( 51 ).…”

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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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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“…The concept of resilience is generally regarded as the ability to maintain functionality despite significant adversities that have the potential to disrupt the normal processes in life (Chin et al, 2018; Masten, 2001). It is the process by which individuals are able to seek out health‐promoting or sustaining resources such as external support systems or internal coping strategies (Garmezy et al, 1984).…”

Section: Introductionmentioning

confidence: 99%

Living with a child who has a life‐limiting condition: The functioning of well‐siblings and parents

Jaaniste

Cuganesan

Chin

et al. 2021

Child

Self Cite

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Background: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning. Methods: Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family.Results: The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's < .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's < .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's < .126, all p's > .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's > .318, p's < .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = À.369, p < .05) and anxiety symptoms (r = À.473, p < .01) but not stress scores (r = À.074, p = .644). Conclusion:Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported wellsibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.

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“…To better meet the increasing needs on PPC, the number of relevant research papers is increasing, focusing on different topics, such as suffering relief of the children [ 9 ], improving the quality of life of the whole family [ 10 , 11 ], and the therapy of neoplasms [ 12 ]. Besides, the scope of studies on PPC has also been greatly extended from the children， parents [ 13 ], and children’s siblings [ 14 ] to the whole family [ 15 ].…”

Section: Introductionmentioning

confidence: 99%

Focuses and trends of the studies on pediatric palliative care：A bibliometric analysis from 2004 to 2018

Zhang

2021

International Journal of Nursing Sciences

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Objectives To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Methods Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis methods, including co-word analysis, biclustering analysis, and strategic diagram analysis. The included papers were divided into three groups based on the publication time, including 2004–2008, 2009–2013, and 2014–2018. Results A total of 1132 papers were published between 2004 and 2018, and there were 293 papers published between 2004 and 2008, 396 between 2009 and 2013, and 443 between 2014 and 2018. There were 42 high-frequency MeSH terms/MeSH subheadings in papers published between 2004 and 2018, including 12 between 2004 and 2008, 13 between 2009 and 2013, and 17 between 2014 and 2018. Conclusion Studies on PPC were making progress, with the increasing number, expanding scope, and uneven global distribution. Integration palliative care into pediatrics, cancer treatments in pediatric oncology, education methods on PPC, and establishment of professional teams were the major themes during 2004–2008, then the themes changed into establishing interventions to enhance the quality of life of the patients and parents, building professional-family relationship, and investigating attitude of health personnel in PPC during 2009–2013 and subsequently turned into communication skills, end-of-life decision making, and guidelines making on PPC during 2014–2018. Underdeveloped and protential themes including effective approaches to deal with the ethical dilemmas, training programs on communication skills, family support and guideline making are worth studying in the future.

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The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Cited by 17 publications

References 65 publications

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

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

Living with a child who has a life‐limiting condition: The functioning of well‐siblings and parents

Focuses and trends of the studies on pediatric palliative care：A bibliometric analysis from 2004 to 2018

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