Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa

Table 4 Recommendations table: grief

No.	Recommendation	Strength of recommendation	Key references*
R1	See R1 in Table 2 above	↑↑	[8, 9, 11,12,13,14,15,16,17,18,19] → [9, 10]
R52	Psychosocial support for parents is necessary to address the special kind of trauma unique to parents of a child with EB	↑↑	[59]
R53	Provide a strong system of support for individuals throughout the dying process and beyond	↑↑	→ [9]
R54	Health care providers should offer ongoing bereavement support following a death	↑↑	→ [9]
R55	Allow health care providers to attend funerals of their patients if allowed by the family	GPP	[47]

Recommendations are based on the results of the literature review. In addition, other recommendations relating to palliative care were added during the process of guideline development from expert consensus, and the experience of the guideline development group. The recommendations in this table are not arranged according to outcome; rather they appear sequentially and are grouped in accordance with the clinical questions. If a recommendation fit within multiple subheadings or within multiple clinical questions, it was listed in each. Recommendation strength was strongly influenced by expert panel decision-making, which accounts for observable gaps between evidence levels and recommendation strength. The evidence level is very low for all recommendations. For the strength of recommendation ratings see Table 1. EB, epidermolysis bullosa; GPP, good practice point; G-tube, gastrostomy feeding tube; JEB, junctional epidermolysis bullosa; IDT, interdisciplinary team; QoL, quality-of-life; RDEB, recessive dystrophic epidermolysis bullosa; SCC, squamous cell carcinoma. *Right-pointing arrows ( →) denote a guideline document

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