Paediatric palliative care and intellectual disability—A unique context

Abstract

A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

“…The 12 included studies were published between 2007–2020 [ 22 , 34 ] and their characteristics are presented in Table 1 . Nine studies were from the United Kingdom [ 21 , 22 , 23 , 24 , 34 , 35 , 36 , 37 , 38 ] two studies from Canada [ 39 , 40 ] and one from Australia [ 41 ]. Three studies combined a literature review with expert opinion and reflections and/or contributions from relevant stakeholders [ 38 , 40 , 41 ].…”

End of life and people with intellectual disability

“…Duc, Herbert, and Heussler's () paper describes the challenges of providing paediatric palliative care to children with intellectual disability. To our knowledge, this is one of the few available publications examining children's palliative care, and we know of just one recent empirical research study (Lindley, Colman, & Meadows, ).…”

“…Grief is a normal experience in the presence of dying and death; however, little is known about either disenfranchised grief or complicated grief by people with intellectual disability. Gray and Kim's (2017) Duc, Herbert, and Heussler's (2017) paper describes the challenges of providing paediatric palliative care to children with intellectual disability. To our knowledge, this is one of the few available publications examining children's palliative care, and we know of just one recent empirical research study (Lindley, Colman, & Meadows, 2017).…”

The palliative care difficulty levels of the nursing students during clinical practices

“…It is estimated that there are around 8 million children who require special palliative care 10 . Unlike adults, children are better able to endure and tend to live longer with chronic diseases, meaning that they may need palliative care for a longer period 10,11 . Therefore, it is important to start and maintain palliative care in the diagnosis stage and to ensure its continuity to secure the physical and emotional well‐being of children, increase their quality of life, and support their families’ symptom management 12–14 …”

“…10 Unlike adults, children are better able to endure and tend to live longer with chronic diseases, meaning that they may need palliative care for a longer period. 10,11 Therefore, it is important to start and maintain palliative care in the diagnosis stage and to ensure its continuity to secure the physical and emotional well-being of children, increase their quality of life, and support their families' symptom management. [12][13][14] As palliative care is offered using a multidisciplinary team approach, nurses play an active role in providing the patients and their Perspect Psychiatr Care.…”