Table 1.
Author | Study Design | Sample | Aspects Assessed | Assessment Tools | Main Results |
---|---|---|---|---|---|
Messmer Uccelli et al., 2013 [24] | Cross-sectional observational study | 15 couples with a child with MS and 29 couples with healthy children Diagnosis of MS ≤16 years of age |
How couples raising a child with MS handle family crises and individual distress in comparison to couples with healthy children |
|
Parents of children with MS felt less confident and satisfied in their parenting compared to control parents. Even though they showed higher parental depression levels than the control group, these scores were still within the normal range. Limited MS knowledge was associated with poorer relationship satisfaction and communication quality, impacting overall parental competence |
Marrie et al., 2020 [35] | Population-based, retrospective matched cohort study |
156 mothers of children with MS (MS-mothers) and 624 mothers of children with no hospital or physical claims for demyelinating diseases (non-MS-mothers) Diagnosis of MS ≤18 years of age |
The occurrence of physical and mental health conditions and the frequency of healthcare utilization in MS-mothers in comparison to non-MS-mothers | None | MS-mothers tended to utilize mental health services more frequently both before and after their child’s MS diagnosis compared to non-MS-mothers |
O’ Mahony et al., 2019 [28] | Prospective cohort study | 58 MS and 178 monoADS patients and their parents Patients ≤ 16 years of age |
The impact of chronic illness on children diagnosed with MS and their families in contrast to those with monoADS, examining their health-related quality of life and their perception of family functioning |
|
Parents of children with MS experienced lower HRQoL and poorer family functioning compared to parents of children with monoADS. Parents of MS-affected children reported more emotional dysfunction, increased worry, poorer communication, and reduced family functioning, regardless of clinical disease activity |
O’ Mahony et al., 2022 [25] | Prospective cohort study | 65 MS and 142 monoADS parent–child dyads Patients aged <18 years |
The role of parental HRQoL as a mediator between the MS diagnosis and the HRQoL of affected children |
|
Parental HRQoL played a mediating role between the MS diagnosis and the HRQoL of affected children |
O’ Mahony et al., 2023 [36] | Prospective cohort study | 65 MS and 142 monoADS parent–child dyads Patients aged <18 years |
The potential roles of a family health condition and low socioeconomic position on the relationship between an MS diagnosis in childhood and parental HRQoL |
|
Parents of children with MS, facing another family health condition or a low socioeconomic position, were at a heightened risk for experiencing low HRQoL |
Schwartz et al., 2018 [37] | Cross-sectional study | 66 youth with MS and 66 parents Patients’ age at enrollment between 10 and 18 years |
The prevalence and risk factors for poor adherence in pediatric MS |
|
Parental involvement in administering therapies was linked to better treatment adherence in pediatric MS, particularly beneficial for adolescents struggling in school and feeling less confident in managing their condition |
Duffy et al., 2021 [38] | Cross-sectional study | 97 parents of children and adolescents with MS | The decision-making experience among parents of children who have received or were receiving medication for their MS | Survey items | Parental satisfaction was positively associated with having a high level of control over the process, being content with communication, and feeling supported by the healthcare provider |
MS, multiple sclerosis; MWS, Maternal Worry Scale; F-COPES, Family Crisis Oriented Personal Evaluation scales; PSOC, Parenting Sense of Competence; HADS, Hospital Anxiety and Depression Scale; MSKQ, Multiple Sclerosis Knowledge Questionnaire; monoADS, monophasic acquired demyelinating syndromes; PedsQL, Pediatric Quality of Live Inventory; HRQoL, health-related quality of life; BSMSS, Barratt Simplified Measure of Social Status; MMAS, Morisky Adherence Measure; MSTAQ, Multiple Sclerosis Treatment Adherence Questionnaire; MSSE, Multiple Sclerosis Self-Efficacy Scale; and PWB, Ryff Scales of Psychological Well-Being.