Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review

“…After deduplication, the titles, and abstracts of 6066 unique citations were screened for eligibility according to the inclusion criteria. Altogether, the full text of 175 citations were evaluated, which resulted in 21 studies [ 18 – 38 ] that were eligible for review (Fig. 1 ).…”

“…The included studies originated from Europe (n = 16) [ 18 , 20 , 22 , 24 – 26 , 28 – 33 , 35 – 38 ], North America (n = 2) [ 27 , 34 ], Australia (n = 1) [ 19 ], Africa (n = 1) [ 21 ], and Asia (n = 1) [ 23 ]. Thirteen studies were qualitative and took the form of interview studies [ 19 – 23 , 26 – 29 , 34 , 35 , 37 , 38 ]. Seven studies were quantitative and presented survey data [ 18 , 24 , 30 – 33 , 36 ], and study had a mixed methods approach [ 25 ].…”

“…Seven studies were quantitative and presented survey data [ 18 , 24 , 30 – 33 , 36 ], and study had a mixed methods approach [ 25 ]. Physicians (n = 333), including pediatricians [ 22 , 24 , 25 , 30 , 35 , 37 , 38 ], were the largest participant group, followed by nurses (n = 219) [ 18 , 19 , 21 – 23 , 27 – 29 , 34 – 38 ]. Some studies involved other healthcare personnel, such as counsellors, assistant nurses, occupational therapists, physiotherapists, dietitians [ 22 , 35 , 37 ], paramedics, psychosocial professionals, and other professionals [ 31 , 35 , 37 , 38 ], and home-based care workers [ 21 ].…”

“…Physicians (n = 333), including pediatricians [ 22 , 24 , 25 , 30 , 35 , 37 , 38 ], were the largest participant group, followed by nurses (n = 219) [ 18 , 19 , 21 – 23 , 27 – 29 , 34 – 38 ]. Some studies involved other healthcare personnel, such as counsellors, assistant nurses, occupational therapists, physiotherapists, dietitians [ 22 , 35 , 37 ], paramedics, psychosocial professionals, and other professionals [ 31 , 35 , 37 , 38 ], and home-based care workers [ 21 ]. Two studies presented participants as external stakeholders, in-patient hospital staff, and hospice at home teams [ 20 ] or as allied health clinicians [ 19 ].…”

“…Sometimes healthcare personnel did not know the child before the first home visit [ 29 ]. To ensure that the care they provided met the needs of the child and family at home and to make decision-making a shared responsibility between healthcare personnel and parents, healthcare personnel stressed the need to build a trusting relationship with the child and their family [ 18 , 19 , 22 , 23 , 25 , 26 , 28 , 29 , 34 , 35 , 37 , 38 ]. Healthcare personnel found that establishing a trusting relationship made families feel safe and protected and had the potential to alleviate the burdens experienced as their children’s illnesses progressed [ 22 , 23 , 25 , 26 , 35 , 37 ].…”