Paediatric palliative care: a review of needs, obstacles and the future

Williams-Reade, Jacqueline; Lamson, Angela L.; Knight, Sharon M.; White, Marilyn Domas; Ballard, Sharon M.; Desai, Priti P.

doi:10.1111/jonm.12095

Cited by 18 publications

(17 citation statements)

References 59 publications

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“…6 The main reported barriers in paediatric palliative care as experienced by healthcare providers are communication, the uncertainty of the prognosis, time constraints and lack of education. [7][8][9][10][11] Studies on barriers experienced by parents show that communication is a major barrier for them. [12][13][14][15][16][17] Other frequently mentioned barriers are a lack of care for the family 12 13 and bereavement care.…”

Section: Introductionmentioning

confidence: 99%

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands

et al. 2020

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ObjectiveTo identify barriers, as perceived by parents, to good care for children with life-threatening conditions.DesignIn a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.SettingThe Netherlands.Participants64 parents of 44 children.ResultsParents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.ConclusionsThe barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.

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Section: Introductionmentioning

confidence: 99%

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands

et al. 2020

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“…The PaPaS promotes greater clarity and effective handover for everyone involved, particularly at care transitions. This can lead to important outcomes like alignment of expectations No (2) between stakeholders, and critically, optimal case management. Ultimately, the child and family living with lifeshortening illness is flagged in a timely manner to receive palliative care based on needs rather than prognosis, in spite of challenges posed by disease diversity and uncertain trajectories, through a process of screening that is both robust and informational, yet with cost-containing implications.…”

Section: Resultsmentioning

confidence: 99%

“…Author details 1 HCA Hospice Care, 705 Serangoon Road, #03-01 Block A @ Kwong Wai Shiu Hospital, Singapore 328127, Singapore. 2 Ministry of Health Holdings, Singapore, Singapore.…”

Section: Appendixmentioning

confidence: 99%

“…As part of a growing movement to improve the care of seriously-ill children, Paediatric Palliative Care (PPC) services around the world face a myriad of challenges. Other than securing sustainable funding [1,2], efforts to promote service access, both in the patient community and among healthcare providers, have been described [3][4][5]. In addition, at service transition after a referral to PPC has been made, good communication between healthcare professionals is critical [6], not only for access, but also continuity of care and patient safety [7].…”

Section: Introductionmentioning

confidence: 99%

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Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)

Chong¹,

Soo

Yeo³

et al. 2020

BMC Palliat Care

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Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. Conclusion:The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.

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“…While this is true of adult services, the situation in pediatric palliative care services is different. [ 16 ] Another study found that 68% of volunteers were involved in counselling and volunteers in 42% of organizations belonged to mental health profession. [ 14 ] In a randomized controlled trial, senior volunteers were useful in delivering a reminiscence and creative activity intervention.…”

Section: Introductionmentioning

confidence: 99%

Continuing professional development for volunteers working in palliative care in a tertiary care cancer institute in India: A cross-sectional observational study of educational needs

Deodhar¹,

Muckaden²

2015

Indian J Palliat Care

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Context:Training programs for volunteers prior to their working in palliative care are well-established in India. However, few studies report on continuing professional development programs for this group.Aims:To conduct a preliminary assessment of educational needs of volunteers working in palliative care for developing a structured formal continuing professional development program for this group.Settings and Design:Cross-sectional observational study conducted in the Department of Palliative Medicine of a tertiary care cancer institute in India.Materials and Methods:Participant volunteers completed a questionnaire, noting previous training, years of experience, and a comprehensive list of topics for inclusion in this program, rated in order of importance according to them.Statistical Analysis Used:Descriptive statistics for overall data and Chi-square tests for categorical variables for group comparisons were applied using Statistical Package for Social Sciences version 18.Results:Fourteen out of 17 volunteers completed the questionnaire, seven having 5–10-years experience in working in palliative care. A need for continuing professional development program was felt by all participants. Communication skills, more for children and elderly specific issues were given highest priority. Spiritual-existential aspects and self-care were rated lower in importance than psychological, physical, and social aspects in palliative care. More experienced volunteers (>5 years of experience) felt the need for self-care as a topic in the program than those with less (<5-years experience) (P < 0.05).Conclusions:Understanding palliative care volunteers’ educational needs is essential for developing a structured formal continuing professional development program and should include self-care as a significant component.

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Paediatric palliative care: a review of needs, obstacles and the future

Abstract: Nursing management plays a crucial role in addressing the clinical, operational and financial needs and concerns that are grounded in paediatric palliative care literature.

Cited by 18 publications

References 59 publications

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands

Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)

Continuing professional development for volunteers working in palliative care in a tertiary care cancer institute in India: A cross-sectional observational study of educational needs

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