It’s more than just lubrication of the skin: parents’ experiences of caring for a child with ichthyosis

Figures & data

Table 1. The participants.

Participant number	Mother (M)/father (F)	Age group of the child	Mild/Severe ichthyosis
1	Mother	0–15	Severe
2	Mother	16–30	Mild
3	Mother	16–30	Severe
4	Father	0–15	Severe
5	Mother	0–15	Mild
6	Mother	0–15	Mild
7	Mother	0–15	Mild
8	Mother	0–15	Severe
9	Father	0–15	Mild
10	Father	0–15	Severe
11	Father	0–15	Severe
12	Father	0–15	Severe
13	Mother	0–15	Severe
14	Mother	16–30	Severe
15/16	Mother and father	0–15	Severe
17	Mother	16–30	Severe
18	Mother	16–30	Mild
19	Father	0–15	Mild

Table 2. Main themes and subthemes.

Main themes	Subthemes
Parents’ and others’ reactions to the child’s difference	There is something wrong with my baby Perceived stigma
Experiences with healthcare services	Lack of knowledge among healthcare professionals and allied caretakers Lack of guidance and holistic follow-up Hampered communication with healthcare professionals
It’s all about skin care	Touching the skin Lubrication and exfoliation Itching and pain Extensive planning Financial and time burdens
Impact on relationships	Closeness and emotional attachment Lack of privacy Siblings and family planning Hampered communication with partners