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Table 3 Psychosocial information needs of family caregivers of children with RDs on item level

From: The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey

 

M (SD)

n (%) 4/5a

Mdn (IQR)

Navigating the health care system

Information about benefits within the framework of the “federal participation act” [Bundesteilhabegesetz]

4.48 (1.00)

125 (83.9)

5 (4–5)

Information about special rehabilitation measures (e.g., parent–child measures, rehabilitation measures specifically for children with disabilities)

4.49 (0.91)

131 (87.9)

5 (4–5)

Information about support options without a confirmed diagnosis (e.g., contact points for children with unclear diagnoses)

3.23 (1.61)

4.77 (0.60) b

73 (49.0)

12 (92.3) b

3 (1–5)

5 (5–5) b

Psychosocial (i.e., mental, emotional, social) strain in the family

Information about how I can cope with emotional strains (e.g., fear, sadness, anger, loneliness) in connection with the disease of the child

4.11 (1.04)

114 (76.5)

4 (4–5)

Information about possible emotional reactions of siblings due to the disease of the child (e.g., fear, sadness, anger, loneliness)

3.90 (1.44)

4.45 (0.94) c

106 (71.1)

77 (86.5) c

5 (3–5)

5 (4–5) c

Information about how to support the social inclusion of the child

4.07 (1.08)

106 (71.1)

4 (3–5)

Strengthen yourself to be strong for others

Information about how I can prevent mental illness

3.42 (1.31)

76 (51.0)

4 (2–5)

Information about how I can strengthen siblings

3.67 (1.50)

4.25 (1.00) c

100 (67.1)

77 (86.5) c

4 (3–5)

4 (4–5) c

Information about how I can combine work and caring for the child

3.57 (1.48)

87 (58.4)

4 (2.5–5)

Further support offerings

Information about support options in everyday life

4.07 (1.16)

110 (73.8)

4 (3–5)

Information about regular care options for the child

3.83 (1.33)

96 (64.4)

4 (3–5)

Information about local points of contact

3.85 (1.32)

96 (64.4)

4 (3–5)

  1. RD rare disease. N = 149. The table shows a selection (based on the highest ratings per domain) of the 43 items used to assess psychosocial information needs. Items were distributed over the four displayed domains (17;11;8;7 items respectively from top to bottom) with answer options ranging from 1 (no information needed) to 5 (in-depth information needed). A complete list of the items can be found in [Additional file 3]. The median and interquartile ranges are reported in addition to average ratings, due to the non-normality of ratings. Some item scores are additionally reported for sub-samples, as the content assumedly only impacts these defined subgroups
  2. a number (percentage) of ‘4’ or ‘5’ ratings for the respective item. only caregivers with children without a confirmed diagnosis, N = 13. only caregivers with healthy siblings in the household, N = 89