Risk and Resilience Factors Related to Parental Bereavement Following the Death of a Child with a Life-Limiting Condition

Jaaniste, Tiina; Coombs, Sandra; Donnelly, Theresa; Kelk, Norm; Beston, Danielle

doi:10.3390/children4110096

Cited by 35 publications

(33 citation statements)

References 141 publications

(187 reference statements)

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“…In fact, PPC is recommended to commence at diagnosis of a life-threatening disease, to continue through the trajectory of the illness, and does not equal end-of-life care (but certainly includes it). PPC services extend beyond the child’s death to the family during bereavement [ 20 ]. Earlier recognition by both physicians and parents that the child had no realistic chance of cure led to a stronger emphasis on treatment to lessen suffering and integrate PPC in pediatric cancer patients [ 21 ].…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

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Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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“…Sources typically refer to the experience of grief or the grieving process, although there is some ambiguity in the literature as to whether grief is itself an emotion, or instead refers to a collection of other psychological and physical experiences that combine together into a more holistic experience of grief. Jaaniste et al (2017) which not only include the acute period of distress that is sometimes experienced following the death of a family member or friend, but can also refer to a more prolonged challenge that can persist for multiple months or years.…”

Section: Challenges Of Bereavementmentioning

confidence: 99%

“…In the case of bereavement, for example, the study by Jaaniste et al (2017) identifies four factors that may influence the success of a transition: loss stressors, intra-personal factors, inter-personal factors, and appraisal/coping factors. Loss stressors are defined as the particular circumstances of bereavement that may make a transition more difficult, such as whether or not the death was expected, or whether an individual had the opportunity to say goodbye; intra-personal factors are defined as stable factors intrinsic to an individual, such as personality, age, and history of mental and physical health; inter-personal factors are defined as stable factors external to the individual, such as social and family support, socio-economic status, and the wider family environment; and appraisal/coping factors are defined as the cognitive processes in an individual that are modifiable, and include both risk factors such as rumination 503 and resilience mechanisms such as positive emotions, meaning-making, psychological flexibility, and the ability to cope pro-actively.…”

Section: Individuals Within Comparator Groups Experience Different Chmentioning

confidence: 99%

Understanding resilience as it affects the transition from the UK Armed Forces to civilian life

Cox¹,

Grand-Clement²,

Galai³

et al. 2018

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For more information on this publication, visit www.rand.org/t/rr2436Published by the RAND Corporation, Santa Monica, Calif., and Cambridge, UK RAND Europe is a not-for-profit research organisation that helps to improve policy and decision making through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors. Limited Print and Electronic Distribution RightsThis document and trademark(s) contained herein are protected by law. This representation of RAND intellectual property is provided for noncommercial use only. Unauthorized posting of this publication online is prohibited. Permission is given to duplicate this document for personal use only, as long as it is unaltered and complete. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial use. For information on reprint and linking permissions, please visit www.rand.org/pubs/permissions.html. Support PrefaceThis report is the third deliverable of a six-month study commissioned by the Forces in Mind Trust (FiMT), which assesses the evidence relating to resilience and transition for UK Service leavers. This document presents the findings of a literature review which comprised three approaches: a systematic review of academic literature, a Rapid Evidence Assessment (REA) of academic and grey literature, and a scoping review of ongoing research in this domain.In this report, the study team provides an overview of how the links between 'resilience' and 'transition' are conceptualised in the literature reviewed. It then explores existing approaches to categorising Service leavers, before identifying a range of challenges that can affect Service leavers and a number of comparator groups. Finally, a series of recommendations are outlined for research, policy and service provision.RAND Europe is an independent, not-for-profit policy research organisation that aims to improve policy and decision making in the public interest through research and analysis. RAND Europe's clients include European governments, institutions, non-governmental organisations and other organisations with a need for rigorous, independent, multidisciplinary analysis. Foreword by the Forces in Mind TrustWhilst most of those leaving the UK Armed Forces go on to lead successful civilian lives, there are unfortunately a minority who are negatively affected by the challenges faced during transition. To help those who struggle, we must first understand why they do, and why the majority do not. Resilience is a concept which has come up time and again in relation to successful transition and which featured strongly in the 2016 FiMT Life Transitions consultation. It is because of this regularity, and a lack of robust evidence to support it, that FiMT decided to commission RAND Europe to undertake this review.Transition is not a straightforward process: it is an individual experience and Service leavers can face unique challenges. Resilience is a common and beneficial characteristic...

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“…The experiences during the child's illness and the final stage of life affect the reactions and outcomes of parental grief in the long term (Jaaniste et al, 2017). In the context of life-limiting conditions, the parental grieving process can begin before the child's death, soon after receiving the diagnosis or prognosis (Jaaniste et al, 2017). In addition, the demand for long-term care and treatment contributes to parents' experiencing months or years of suffering before the child's death.…”

Section: Introductionmentioning

confidence: 99%

The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis

Polita

Montigny

Neris

et al. 2020

J Pediatr Oncol Nurs

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This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents’ life and caused identity crisis and loss of life’s purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child’s death.

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Risk and Resilience Factors Related to Parental Bereavement Following the Death of a Child with a Life-Limiting Condition

Cited by 35 publications

References 141 publications

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Understanding resilience as it affects the transition from the UK Armed Forces to civilian life

The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis

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