Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review

Abstract

Background and Objective: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack of knowledge and negative attitudes and beliefs toward pediatric palliative care are often cited among these barriers. This narrative review aims to summarize the existing literature regarding knowledge, attitudes and beliefs toward pediatric palliative care among healthcare professionals, parents and communities.Methods: Four databases were searched: Medline, EMBASE, PsychINFO, and Cumulative Index to Nursing and Allied Health Literature Complete. The search strategy combined Medical Subject Headings, terms and keywords using Boolean operators to retrieve references addressing each concept of interest within the English literature. The initial search was conducted in August 2020 and updated in August 2021. No date limits were set. Two independent authors screened the retrieved papers for eligibility.

Atuação frente ao paciente pediátrico em cuidados paliativos

“…Os resultados destacam a importância de aumentar o conhecimento sobre o significado e o conteúdo do PPC entre os profissionais de saúde, a fim de manter a qualidade de vida de todas as crianças com condições limitantes ou com risco de vida ao longo de sua trajetória de doença. Saad et al (2022) As perspectivas dos profissionais de saúde foram mais exploradas em comparação com as amostras de pais e da comunidade. Os relatórios descrevem a confusão entre cuidados paliativos pediátricos e cuidados de fim de vida.…”

Knowledge, attitudes and beliefs about paediatric palliative care

“…Similarly, wider community knowledge and understanding of paediatric palliative care was also often limited even when there was awareness or familiarity with the concept. However, and importantly Saad et al (9), found across multiple studies across professional, parent and community samples, when individuals are provided accurate information about paediatric palliative care, their attitudes towards it become more positive.…”

“…Despite improvements to access and provision of paediatric palliative care services, particularly in higherincome countries, there are still significant barriers to access and integration globally (4-6). One significant barrier that remains, even when logistical, financial, and operational barriers are addressed is how palliative care is understood by health and social care professionals and families (7)(8)(9).…”

“…In this narrative review, Saad et al (9) retrieved 60 articles that explored knowledge, attitudes and beliefs toward paediatric palliative care among healthcare professionals, parents and communities. The review highlights disparities in knowledge and understanding of both what paediatric palliative care is broadly and also what that means in terms of the approach to care.…”

“So good; so late”: the strange love-hate relationship with paediatric palliative care

“…Beyond structural limitations like policy, resource and training, barriers to early integration of PPC to benefit from evidenced-proven outcomes persist, interestingly, within internal stakeholders. In this issue of the journal, Saad and colleagues reviewed extant literature to report cognitive and psychological factors that perpetuate this anomaly (3). Depending on whether the reader is already a convert, findings will uncover or deepen individual appreciation of entrenched ignorance and misconceptions among professionals, beneficiaries, and wider community.…”