Table 7.
Narrative synthesis of included records on the HRQoL of caregivers for individuals with OI
| domain | N | Findings | Records |
|---|---|---|---|
| Psychological wellbeing | 12 | The OI diagnosis may affect the mental health of caregivers negatively. Parents of children with OI scored significantly lower in domains assessing mental health in studies that used validated tools | [48–50, 104, 290, 294, 307–312] |
| Internal support | 10 | Parents mentioned that having a child with OI may affect intrafamilial relationships and help from close family may be limited due to safety concerns of parents | [48–50, 54, 290, 294, 308–310, 313] |
| External support | 8 | Caregivers mentioned that more reliable and safe respite care opportunities for children with OI are important to facilitate caregivers’ wellbeing. Levels of institutional support received by families were higher if children were diagnosed with a more severe OI type | [48, 50, 308–311, 313, 314] |
| Caregiver environment | 7 | Caregivers of children with OI may experience a decrease in their household income, higher rates of absenteeism, significant medical care expenses for their child and may have to relocate to accommodate medical and safety needs | [48, 50, 54, 60, 307–310] |
| Relationships with friends | 5 | Parents noted that they may experience isolation from their social circle due to safety concerns for their child and a lack of understanding for the condition from outside parties | [307, 308, 310–312] |
| Care experience | 5 | Important elements of providing care to children with OI include coordinating medical care, assisting with ADLs and transfers, research of best care practices, advocacy, and adaptation of the home environment to be safer for children with OI | [48, 54, 310, 311, 313, 315] |
| Physical wellbeing | 4 | Findings are conflicting in the included records. Some parents reported experiencing recurring health issues after their child’s diagnosis | [307–310] |
| Perception of OI | 4 | In the included records, engagement with healthcare providers was affected by caregivers’ negative perception of their children's OI diagnosis | [49, 309, 310] |
ADLs Activities of daily living, HRQoL Health-related quality of life, OI Osteogenesis imperfecta