Serious Illness Conversations in Pediatrics: A Case Review

Breemen, Camara van; Johnston, Jennifer J.; Carwana, Matthew; Louie, Peter K.K.

doi:10.3390/children7080102

Cited by 15 publications

(29 citation statements)

References 24 publications

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“…In current research and practice in the field of PPC, there is a growing interest in strategies to anticipate the future in an adequate way [ 26 ]. Tools are developed to support families and HCPs in anticipating the future by ACP [ 27 , 28 ]. Our study reveals some key points that show why implementation of ACP and other strategies to anticipate the future need ongoing attention.…”

Section: Discussionmentioning

confidence: 99%

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

et al. 2020

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Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations. Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known:• Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New:• Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job.• Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.

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Section: Discussionmentioning

confidence: 99%

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

et al. 2020

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“…Twenty-one articles were original empirical studies reporting outcome data, including six trials [ 31 , 32 , 33 , 34 , 35 , 36 ], six observational studies [ 37 , 38 , 39 , 40 , 41 , 42 ], four qualitative studies [ 11 , 43 , 44 , 45 ], and five studies that used mixed methods (observational and qualitative study design) [ 46 , 47 , 48 , 49 , 50 ]. Ten articles described a tool or intervention without reporting any empirical data [ 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 ]. Most studies ( n = 24) were conducted and published in the USA [ 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 46 , 47 , 48 , 49 , 51 , 52 , 53 , 56 <...…”

Section: Resultsmentioning

confidence: 99%

“…Ten articles described a tool or intervention without reporting any empirical data [ 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 ]. Most studies ( n = 24) were conducted and published in the USA [ 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 46 , 47 , 48 , 49 , 51 , 52 , 53 , 56 , 58 , 59 , 60 ], five were published and conducted in the UK [ 44 , 45 , 50 , 54 , 55 ], one was published and conducted in the Netherlands [ 11 ], and one was published and conducted in Canada [ 57 ].…”

Section: Resultsmentioning

confidence: 99%

“…Table 7 presents an overview of the characteristics of the 18 pACP tools. Most interventions focused on conversations with children and their parents or surrogates as a key element of ACP [ 11 , 31 , 33 , 34 , 35 , 36 , 37 , 39 , 42 , 43 , 44 , 45 , 46 , 47 , 50 , 52 , 53 , 54 , 55 , 57 , 58 , 60 ]. Seven articles were only concerned with patients [ 40 , 48 , 49 , 51 , 56 , 59 ].…”

Section: Resultsmentioning

confidence: 99%

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Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review

et al. 2022

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Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systematic review was aimed to evaluate the age appropriateness of pACP interventions by assessing their characteristics, content, and evidence. CINAHL, Embase and MEDLINE were searched from 1 January 1998 to 31 August 2020 in order to identify peer-reviewed articles containing strategies and tools to facilitate pACP in both children (0–18 years) with life-limiting conditions and their families. An assessment of quality was performed using Cochrane tools and COREQ. The full protocol is available as PROSPERO CRD42020152243. Thirty-one articles describing 18 unique pACP tools were included. Most tools were developed for adolescents and young adults. In most cases, the interventions tried to assess the child’s and family’s preferences concerning their current and future hopes, wishes, and goals of the care. This was aimed to enhance communication about these preferences between children, their families, and health-care providers and to improve engagement in pACP. The relevance of an age-appropriate approach was mentioned in most articles, but this was mainly implicit. Seven articles implemented age-appropriate elements. Six factors influencing age appropriateness were identified. Tools to support pACP integrated age-appropriate elements to a very limited extent. They mainly focused on adolescents. The involvement of children of all ages may need a more comprehensive approach.

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“…[ 9 , 10 ] There is also a paediatric adaptation of the guide by the name of SICG-peds to use it for communication with caregivers of children. [ 11 , 12 ] There are other tools available as well that could assist in communication and shared decision making. [ 13 ] However, considering how diverse the Indian population is and how cultural factors affect decision-making and communication these tools may require major modifications to be made fit for use for the Indian population.…”

Section: Introductionmentioning

confidence: 99%

Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method

Srivastava

2022

IJPC

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Research in Parental Perspectives are pivotal in gaining understanding of parents’ experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this article is to understand the contribution of previous research on parental perspectives in pediatric palliative care through a systematic review of literature. Nine articles that met the inclusion criteria were accessed and seven key themes emerged; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective. This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: spiritual, financial, psychological, cultural and social.

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Serious Illness Conversations in Pediatrics: A Case Review

Cited by 15 publications

References 24 publications

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review

Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method

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