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

TY - JOUR

T1 - The psychosocial situation of families caring for children with rare diseases during the COVID‑19 pandemic: results of a cross‑sectional online survey

AU - Rihm, Lydia

AU - Dreier, Mareike

AU - Rezvani, Farhad

AU - Wiegand-Grefe, Silke

AU - Dirmaier, Jörg

PY - 2022/12/26

Y1 - 2022/12/26

N2 - Background:The COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highlyvulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregiversdeserves more attention, both in research and practice. The current study explores the distress level of caregivers ofchildren with RDs, their psychosocial information needs, and caregiver-reported health-related quality of life (HRQoL)of children with RDs in times of the COVID-19 pandemic.Methods:Data from a cross-sectional online survey conducted within the German CARE-FAM-NET project (childrenaffected by rare diseases and their families-network) between March and August 2020 were examined. The study sampleincluded 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographicand disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents;scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and caregiver-reported HRQoL of thechildren with RDs (DISABKIDS Chronic Generic Measure, short-form; scale 0–100). Using descriptive statistics, we analyzedthe psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysisto investigate interrelations.Results:The distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4).Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) werefrequent. Caregivers reported a wide range of psychosocial information needs. In about half of the children (49.5%),caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to parent-reportednorm data of children with severe clinical conditions. Distress correlated positively with psychosocial informationneeds (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = − 0.46).Conclusions:This study indicates a high psychosocial burden on family caregivers of children with RDs during theearly COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocialinformation needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight theongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.

AB - Background:The COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highlyvulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregiversdeserves more attention, both in research and practice. The current study explores the distress level of caregivers ofchildren with RDs, their psychosocial information needs, and caregiver-reported health-related quality of life (HRQoL)of children with RDs in times of the COVID-19 pandemic.Methods:Data from a cross-sectional online survey conducted within the German CARE-FAM-NET project (childrenaffected by rare diseases and their families-network) between March and August 2020 were examined. The study sampleincluded 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographicand disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents;scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and caregiver-reported HRQoL of thechildren with RDs (DISABKIDS Chronic Generic Measure, short-form; scale 0–100). Using descriptive statistics, we analyzedthe psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysisto investigate interrelations.Results:The distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4).Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) werefrequent. Caregivers reported a wide range of psychosocial information needs. In about half of the children (49.5%),caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to parent-reportednorm data of children with severe clinical conditions. Distress correlated positively with psychosocial informationneeds (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = − 0.46).Conclusions:This study indicates a high psychosocial burden on family caregivers of children with RDs during theearly COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocialinformation needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight theongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.

U2 - 10.1186/s13023-022-02595-0

DO - 10.1186/s13023-022-02595-0

M3 - SCORING: Journal article

VL - 17

SP - 449

JO - ORPHANET J RARE DIS

JF - ORPHANET J RARE DIS

SN - 1750-1172

IS - 1

M1 - 449

ER -