Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents

Fornieles, Mercedes Plaza; Barbero, Patricia García-Marcos; Miñarro, A. Galera; Barbieri, Giorgio; Bellavia, Noemi; Cortés, María del Mar Bermúdez; Mingorance, Álvaro Navarro

doi:10.1016/j.anpede.2019.07.007

Cited by 3 publications

(9 citation statements)

References 16 publications

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“…The 18 studies were conducted in seven countries: USA ( n = 9) 25 , 27 – 29 , 35 , 36 , 38 – 40 ; Japan ( n = 2) 22 , 24 ; Switzerland ( n = 2) 32 , 33 ; Germany ( n = 2) 30 , 31 ; Canada ( n = 1) 37 ; South Korea ( n = 1) 26 and Spain ( n = 1). 34 Twelve of the studies involved children’s hospitals: paediatric oncology ± haematology departments ( n = 5) 23 , 24 , 26 , 28 , 31 ; paediatric cardiology centres ( n = 2) 39 , 40 ; paediatric intensive care units ( n = 2) 25 , 38 ; medical centres/hospitals ( n = 2) 27 , 30 ; or mixed hospital environments ( n = 1). 34 The remaining six studies involved hospital and community settings (e.g.…”

Section: Resultsmentioning

confidence: 99%

“… 34 Twelve of the studies involved children’s hospitals: paediatric oncology ± haematology departments ( n = 5) 23 , 24 , 26 , 28 , 31 ; paediatric cardiology centres ( n = 2) 39 , 40 ; paediatric intensive care units ( n = 2) 25 , 38 ; medical centres/hospitals ( n = 2) 27 , 30 ; or mixed hospital environments ( n = 1). 34 The remaining six studies involved hospital and community settings (e.g. home care).…”

Section: Resultsmentioning

confidence: 99%

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Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools

et al. 2022

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Background: The circumstances and care provided at the end of a child’s life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. Aim: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. Design: Scoping review was conducted following the Arksey and O’Malley methodological framework. Data sources: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000–June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the ‘dying’ phase of illness (defined as the last month of life). Results: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as ‘proxy’ assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. Conclusions: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools

et al. 2022

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“…Referral to palliative care facilitated emotional support to children and their families [74,118,[124][125][126][127]. Emotional support to families extended beyond the child's death into the bereavement phase [126,127]. Support from palliative care enabled families to have realistic hope.…”

Section: Outcomes Of Palliative Care Referral In Paediatric Oncologymentioning

confidence: 99%

“…Referral to palliative care in paediatric cancer settings improved communication between families and health care providers [74,75,119,[125][126][127][128][129][130][131][132]. Involvement of the palliative care team enabled early assessment [133]; facilitated initiation of family meetings during the child's clinical deterioration [128] and assisted oncologists in prognostic discussions [74].…”

Section: Outcomes Of Palliative Care Referral In Paediatric Oncologymentioning

confidence: 99%

“…They valued the support they got in terms of managing finances and assistance to manage the child's needs at home [48]. Palliative care referral improved family satisfaction of care [114,119,127]. Involving a palliative care team facilitated discharge planning, hospice utilisation, and home-based care [75,145].…”

Section: Outcomes Of Palliative Care Referral In Paediatric Oncologymentioning

confidence: 99%

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Palliative Care in Paediatric Oncology: an Update

2022

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Purpose of this Review The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology. Recent Findings Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources. Summary Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.

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Presuppositions, cost–benefit, collaboration, and competency impacts palliative care referral in paediatric oncology: a qualitative study

2022

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Background Although a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral. Methods Twenty-two paediatric oncologists and haematologists were purposively recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using the critical realist paradigm. Results Four themes were generated. 1) Oncologists expressed concern about the competency of palliative care teams. Palliative care often symbolised therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, and knowledge of oncology and paediatrics. 2) Making a palliative care referral was associated with stigma, navigating illness-related factors, negative family attitudes and limited resources, impeding palliative care referral. 3) There were benefits to palliative care referral, including symptom management and psychosocial support for patients. However, some could see interactions with the palliative care team as interference hindering future referrals. 4) Suggested strategies for developing an integrated palliative care model include evident collaboration between oncology and palliative care, early referral, rebranding palliative care as symptom control and an accessible, knowledgeable, and proactive palliative care team. Conclusion Presuppositions about palliative care, the task of making a referral, and its cost-benefits influenced referral behaviour. Early association with an efficient rebranded palliative care team might enhance integration.

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Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents

Cited by 3 publications

References 16 publications

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools

Palliative Care in Paediatric Oncology: an Update

Presuppositions, cost–benefit, collaboration, and competency impacts palliative care referral in paediatric oncology: a qualitative study

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