Table 1.
code | Researcher, year of publication | Title | Country and study design | Research population/ sample size | Findings | Quality of evidence |
---|---|---|---|---|---|---|
1 | Abdullah MM, et al. (2021) [28] |
Are parental depressive symptoms related to the sleep quality and physical activity of their children with developmental disabilities? |
USA, prospective study | 147 parents of children with developmental disabilities | Parents of children with above-average sleep problems had about twice the odds of depression, and parents of children with above-average exercise problems had about one-and-a-half times the odds. | V |
2 | Balbo N & Bolano D.(2024) [30] | Child disability as a family issue: a study on mothers’ and fathers’ health in Italy. | Italy, cross sectional study | 13 000 mothers and fathers (7000 families) of disabled children | Compared to parents of a healthy child, parents of a child with a disability report lower levels of general and mental health and well-being. | V |
3 | Bilsin E, et al. (2014) [33] | A review of the relationship between the needs of mothers who have hearing impairment children and their state-trait anxiety levels | Turkey, cross-sectional study | 87mothers who have hearing impairment children | The anxiety level of mothers with hearing impaired children increased negatively as their needs increased. | V |
4 | Björquist E, etal(2016) [38] | Parents’ Experiences of Health and Needs When Supporting Their Adolescents with Cerebral Palsy During Transition to Adulthood. | Sweden, qualitative study | 15 mothers and fathers to 10 adolescents with CP aged 17–18 years | Parents’ experiences are illustrated by the main theme “Friction blisters, chafing and healing during transition”. Five sub-themes described parents’ concerns, worries about what was to come, needs for support, coping strategies, and experiences of togetherness, in addition to grief and stress in life | III |
5 | Bourke-Taylor HM, et al. (2022) [21] | Fathers of children with a disability: health, work, and family life issues | Australia, mixed-methods study | 33 fathers in families raising children with disabilities | Fathers reported high levels of symptoms of depression (58%), anxiety (37%), and stress (61%). Fathers reported low participation in health-promoting activities less than weekly: planning health activities (58%); exercising alone (26%); social activities (3%); taking time to relax (16%). 64% were in full-time employment, although work was reported to be a challenge because of family responsibilities. Although service interactions were low and delegated to mothers, fathers described direct care of their children. | III |
6 | Brekke I & Alecu A. (2023) [31] | The health of mothers caring for a child with a disability: a longitudinal study | Norway, longitudinal study | Mothers and their children without disability, n = 1,574,328 Mild disability, n = 6,343 Complex disability, n = 14,229 | Mothers of children with disabilities are more likely than mothers of children without disabilities to be diagnosed with musculoskeletal conditions, depression, anxiety, insomnia, and migraine. The differences between the two groups of mothers diminish after adjustment for child, mother, and family characteristics, but remain significant for musculoskeletal disorders, depression, anxiety, and sleep disorders, although the absolute differences are modest. | V |
7 | Caicedo C. (2014) [27] | Families with special needs children: family health, functioning, and care burden | South Florida, USA, longitudinal study | 84 parents of children with special health care needs | Parents woke with physical fatigue, unable to do their favorite activities and with little energy to do housework or socialize. Cognitive problems with remembering and concentrating on tasks, worrying about the child’s medicines, therapies and side effects, and worrying about the child’s future and the effect of the child’s condition on other family members. Socially, they found it difficult to talk to others, including doctors and nurses, and felt isolated and that people did not understand their family situation. | V |
8 | Chen C, etal(2023) [23] | Parents of children with disability: Mental health outcomes and utilization of mental health services | Australia, Longitudinal Study | 4935 children with disability and their parents | At all child ages, parents of children with disabilities had a higher prevalence of mental health problems than parents of children without disabilities. Parents of disabled children aged 12 to 17 years had significantly higher mental health service utilization and costs than parents of nondisabled children (2-year cost differential=$86.37, 95% CI ($15.67-$157.07)). Among parents of children aged 4–11 years, however, these differences were not observed. | V |
9 | Coughlin MB& Sethares KA, (2017) [29] | Chronic Sorrow in Parents of Children with a Chronic Illness or Disability: An Integrative Literature Review | USA, integrative review | 19 studies from a literature search | Compared to fathers, mothers experience more intense chronic sorrow. Strong triggers for the resurgence of chronic sorrow are health crises and developmental milestones. | III |
10 | DiGiacomo M, et al. (2017) [25] | Experiences and needs of carers of Aboriginal children with a disability: a qualitative study | Australia, qualitative study | 16 mothers and 3 grandmothers of Aboriginal children aged zero-eight with disability | They described their experiences, including the challenges and enablers of care provision and access, the impact on their health and welfare, and the related economic and noneconomic costs of care. For lone caregivers, financial strain and social isolation were particularly prominent. | III |
11 | Gilson KM, et al. (2018) [24] | Supporting the mental health of mothers of children with a disability: Health professional perceptions of need, role, and challenges | Australia, qualitative study | 13 health professionals working with families of a child with a disability | Professionals were aware of mothers’ need for mental health support, but were not always clear about their roles and responsibilities in support of maternal mental health. Providers also struggled to respond to mothers’ mental health problems, were not always aware of the best strategies to promote mothers’ mental health, and encountered barriers that could be overcome with training and systemic change. | III |
12 | Gilson KM, et al. (2018) [22] | Mental health care needs and preferences for mothers of children with a disability | Australia, cross-sectional study | 294 mothers of children with a disability. | High rates of self-reported clinically significant depression (44%), anxiety (42%), and suicidality (22%) in the past 12 months were reported. High to very high levels of psychological distress were reported by nearly half (48%) of mothers. Only 58% of mothers attempted to access professional support, even though 75% felt they needed it. The main barriers to seeking help were caregiving responsibilities that made scheduling appointments difficult (45%) and not perceiving the mental health problem to be serious enough to require help (36%). Individual counseling was the most preferred type of support (66%). This was followed by professionally guided relaxation (49%) and mental health education (47%). | III |
13 | Hagerman TK, et al. (2022) [26] | The Mental and Physical Health of Mothers of Children with Special Health Care Needs in the United States | USA, National Survey |
102,341 children ages 0–17 including 23,280 CSHCN. |
Compared with non-CSHCN, moms of children with special health care needs were twice as likely to have poor mental and physical health (mental 10.3% versus 4.0%, p < 0.001; physical 11.9% versus 5.0%, p < 0.001). In regression models, an increase in the number of special health care needs and the severity of activity limitations were associated with significantly higher odds of poor maternal health. | V |
14 | Joung WJ. (2023) [41] | Phenomenological Study on the Lived Experiences of Mothers Caring for Their Pubescent Children with Developmental Disabilities | Korea, qualitative study | 9 mothers caring for pubescent children with developmental disabilities | The lived experiences of mothers who cared for adolescent children with DDs were grouped into four themes and nine sub-themes from 19 units of meaning (1) not being allowed to enjoy the growth of the child due to an imbalance in the rate of growth, (2) feeling ostracized along with the disabled child, (3) feeling like a slow and permanent expulsion from society, and (4) reorienting the direction and purpose of caregiving. | III |
15 | Kocherova OIu, (2014) [35] | Psychological features of mothers bringing up disabled children [Article in Russian] | Russia, survey | 60 mothers bringing up children of early age with infantile cerebral palsy and 50 mothers of children with compensation of perinatal affections of the central nervous system by the 1 life year | Mothers who raise handicapped children are more likely to suffer from emotional disturbances, have a negative attitude to divorce, and are less likely to assign a primary role in a family to their husbands. | V |
16 | Masefield SC, et al. (2021) [32] |
The Effects of Caring for Young Children with Developmental Disabilities on Mothers’ Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort |
Bradford UK, Cohort |
477 caregivers of preschool disabled children and 7250 other mothers |
Caregiving mothers had higher odds of symptoms of psychological distress (odds ratio 1,24; 95% CI 1,01, 1,53), fatigue (1,42; 1,12, 1,80), and possibly headache and muscle pain (1,18; 0,97, 1,43). Despite the higher prevalence of symptoms, they were not more likely to use health care services and may be less likely to seek health care for psychological distress (0.64; 0.40, 1.02). There was a general association between socio-economic deprivation and poorer health. | V |
17 | Masulani-Mwale C, etal.(2016) [39] | Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping? | Malawi, qualitative study | 10 focus group discussions and four in-depth interviews with parents who had children diagnosed with intellectual disability | There are a number of challenges associated with caring for children with intellectual disabilities. Parents have limited access to services for their children, let alone for their own mental health issues; they face stigma and discrimination; they have mental health problems as a result of being a caregiver; they have suicidal thoughts; and in some cases, have even been forced by neighbours to kill their disabled child. In order to cope with these problems, most of the parents cope through their spirituality. | III |
18 | Miodrag N, et al. (2015) [16] | Adverse health in parents of children with disabilities and chronic health conditions: a meta-analysis using the parenting stress index’s health sub-domain | USA, meta-analysis | 19 eligible studies. | Parents of children with DD/CHC reported higher PSI health problem scores, with a weighted mean effect size of 0.39 (95% CI = 0.23–0.55), compared with parents of children without DD/CHC. | V |
19 | Nazzal MS & Al-Rawajfah OM. (2017) [40] | Lived experiences of Jordanian mothers caring for a child with disability | Jordan, qualitative study | 7 mothers of children with disability | Four main themes emerged from the mothers’ experiences, including increased stigma, fear for the future, increased caregiving burden, and adjusting to the child’s disabilities. | III |
20 | Ranehov L & Håkansson C. (2019) [37] | Mothers’ experiences of their work as healthcare assistants for their chronic disabled child | Sweden, qualitative study |
9 mothers who had a child aged 8–17 years old with a cognitive or/and physical chronic disability. |
The mothers in the study had to be on call for their child at all times. They emphasized the physical and psychological health problems caused by their work situation. | III |
21 | Rizvi Jafree S, Burhan SK. (2020) [36] | Health challenges of mothers with special needs children in Pakistan and the importance of integrating health social workers | Pakistan, qualitative study | 21 mothers of special needs children |
Mothers faced significant and salient challenges in eight subcategories of mental health (constant stress due to structural failures, fear of social shame and avoidance of public exposure, fear of public assault, morbid feelings and anticipation of child’s death, acceptance of blame for child’s condition, and feelings of depression). Morbid feelings and anticipation of child’s imminent death, Acceptance of blame for child’s condition and feelings of depression, Anxiety about marriage of children with special needs Mood swings and erratic outbursts constant physical fatigue, migraine headaches and sleeplessness, muscular and joint pain or bone loss, hypertensive disorders, diabetes and nutrition problems, physical abuse and self-harm, consequences of contraception and hysterectomies). |
III |
22 | Whiting M. (2014) [7] | Children with disability and complex health needs: the impact on family life | UK, qualitative study | parents from 33 families that included one or more child with disabilities | Childhood disability has many impacts on the family. For the most part, these effects cannot be easily defined or described in the context of a particular “medical” diagnosis or prognosis. Many elements of impact seem unrelated to whether or not a child has a life-threatening or life-limiting condition, or whether or not a child requires specific medical equipment or ongoing care. | III |
23 | Xia C, et al. (2023) [10] | Depression and Associated Factors among Family Caregivers of Children with Disabilities: Analysis of Intergenerational Differences | China, cross-sectional study | 380 parents and 108 grandparents of children with disabilities | There was no statistical difference between parents (35.5%) and grandparents (32.4%) in the risk of depression. Child sleep problems (AOR = 1,751, 95%CI = 1,019, 3,008), harmonious family relationships (AOR = 0,694, 95%CI = 0,569, 0,846) and better accessibility (AOR = 0,742, 95%CI = 0,568, 0,970) were significantly associated with parental depression. Higher education (AOR = 4,108, 95%CI = 1,526, 11,057) and taking care of children with frequent mood changes (AOR = 2,242, 95%CI = 1,161, 4,329) were associated with higher risk of depression. Owning a home (AOR = 0.167, 95%CI = 0.031, 0.887), having a more cohesive family (AOR = 0.545, 95%CI = 0.297, 1.000), and having a more accessible home (AOR = 0.401, 95%CI = 0.185, 0.869) were associated with lower odds of depression. | V |
24 | Yilmaz G. (2020) [34] | Mothers with disabled children: needs, stress levels and family functionality in rehabilitation. | Turkey, cross-sectional study | 181 mothers with disabled children | Mothers were found to have high information needs, moderate stress levels, and moderate family functionality in rehabilitation. They concluded that mothers’ stress levels rose with increasing need, whereas their stress levels declined with increasing rehabilitation function. | V |