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Journal of Physical Therapy Science logoLink to Journal of Physical Therapy Science
. 2026 May 1;38(5):186–192. doi: 10.1589/jpts.38.186

Relationship between perception of healthcare services and health-related quality of life in mothers of children with disabilities

Daisuke Kazama 1,2,*, Kensuke Shimizu 1, Tomoyuki Asakura 2, Shigeru Usuda 3
PMCID: PMC13132645  PMID: 42079990

Abstract

[Purpose] To clarify the relationship between mothers’ health-related quality of life and their perceptions of healthcare services, including physical therapy, for their children with disability, along with factors affecting health-related quality of life. [Participants and Methods] Survey items were the Short Form Health Survey, Measure of Processes of Care 56, as an indicator of the perception of healthcare services, type of disability and activities of daily living, and the mother’s sleep patterns and employment status. The correlation between health-related quality of life and service perceptions was investigated. Further, multiple regression analysis was conducted by combining the child’s and mother’s statuses as an interaction term. [Results] The mental component summary score of the Short Form Health Survey showed a significant weak positive correlation with Measure of Processes of Care 56. The number of awakenings from sleep at night was found to be a significant moderator of the physical component summary score of the Short-Term Health Survey and showed a limited but significant effect on the ‘providing general information’ domain of Measure of Processes of Care 56. [Conclusion] Mothers with a low awareness of ‘providing general information’ and a high number of times waking from sleep at night tended to show low health-related quality of life.

Key words: Moderator, Family-centered care, Waking from sleep

INTRODUCTION

Parents of children with disabilities generally report a decline in health-related quality of life (HRQOL)1, 2). In particular, mothers are reported to experience lower physical QOL than fathers3), which is thought to contribute to fatigue among mothers, as the typical caregivers2, 4).

Family-centered care (FCC) respects the values, perspectives, and choices of patients and their families, promotes the incorporation of those choices into care plans, and fosters beneficial partnerships between families and health care providers5, 6). Family support and care are key in the pediatric field7). Understanding how parents perceive services, what is important to them and the areas in which services can be made more family-centered is also important8). Physical therapy should target the quality of life of not only the patient but also their family.

In general, HRQOL includes an individual’s perception of their physical, psychological, social, and environmental well-being9). Declines in HRQOL among the parents of children with disabilities are believed to be influenced by factors such as the severity of the disability, the mobility of the child4, 10), and the age4) and socioeconomic status of the mother11).

A moderator is a variable that is thought to temper or modulate the magnitude of the effect of an independent variable on a dependent variable12). Moderators may be characteristics of individuals or situations. In either case, the magnitude of the relationship between independent and dependent variables is affected. Using a moderator is appropriate for studies that involve a variety of confounders. For example, age has been reported to act as a moderator that influences HRQOL related to pain control beliefs in patients experiencing chronic pain13). In addition, reports on moderators of HRQOL have stated that sleep quality in older adults not only directly predicts HRQOL, but also influences HRQOL through the cascading effects of depression and ADL14). Similarly, self-efficacy is a moderator of the relationship between menopausal symptom severity and menopause-specific QOL15).

The Measure of Processes of Care 56 (MPOC-56) is one indicator of perceptions used to investigate whether family opinions are reflected and whether family members can participate and cooperate in the medical and welfare services provided to the parents of children receiving medical or therapeutic care16).

One report found that parents with high MPOC-56 scores showed significantly higher mental health scores as measured by the Short-Form Health Survey (SF-36), suggesting a correlation with psychological QOL rather than physical QOL17).

In the field of pediatric care, the mental health of parents is a consistent predictor of satisfaction with medical care17). Although various recommendations state that health and welfare services should be family-centered5,6,7), few studies have investigated the relationship between the utilization and awareness of health and welfare services and the HRQOL of parents8). In addition, while a relationship between perception of services and HRQOL has been suggested, no relationship with HRQOL has been explicitly stated17).

The purpose of this study was to investigate the relationship between mothers’ perceptions of the health and welfare services used by their school-age children with disabilities and mothers’ HRQOL. Further, by identifying moderators that influence mothers’ HRQOL, we hope to clarify the factors behind the difficulties mothers face as caregivers.

PARTICIPANTS AND METHODS

This study was a cross-sectional survey of the mothers of children attending special-needs schools (3 schools for intellectual disabilities and 3 schools for physical disabilities) in two cities in Gunma prefecture, Japan.

We recruited 506 families with children attending the target special needs schools. Exclusion criteria were families with children in institutions who did not live with their families and single-father families.

The number of samples was set using G*Power 3.1.9.7 (Faul 2007, Faul 2009). Correlation analysis used 26 samples, for unpaired t-tests, the number of samples was 128 (64 in each group), and for multiple regression analysis, the number of samples was 32.

This study was approved by the Gunma University Ethical Review Board for Medical Research Involving Human Subjects (approval no. HS2023-069). Informed consent was obtained from all participants at the time of completing the questionnaire.

We obtained consent from the schoolteachers in advance by explaining the details. The schoolteachers explained the recruitment requirements to all parents, and distributed an explanation sheet and anonymous questionnaire response forms to mothers who consented. The mothers checked the consent box on the anonymous response forms, which were then collected by teachers within a two-week period.

We asked questions regarding the ages of the mother and child, the diagnosis or disability, mobility, and the service utilization of the child, and the employment and sleep statuses of the mother.

The SF-36v2 Japanese standard version was used. This tool calculates 8 sub-domains from 36 questions to drive the physical component summary score (PCS), the mental component summary score (MCS), and role-social component summary score (RCS). The summary score can be selected to analyze two types (PCS and MCS) or three types (PCS, MCS, and RCS). The SF-36 manual states that three types are often reported in Asian countries and two types in Western countries. Since the analysis in the previous study17) reported the survey results in terms of PCS and MCS, the present study also conducted analyses in two summary scores. According to the SF-36 manual, responses with fewer than 1/2 valid responses in each domain were considered invalid. Norm-Based Scoring (NBS) converts the national standard score to 50 points and the national standard deviation to 10 points. Scores above or below 50 points indicate whether a person is above or below the national average.

To investigate parent’s perceptions of the medical and educational services children received, we used the Japanese version of MPOC-5612), a tool for evaluating family-centered care. MPOC-56 was designed to assess parent perceptions of the care their children were receiving from doctors, nurses, teachers, childcare workers, psychologists, physical therapists, occupational therapists, speech therapists, social workers, and other individuals. The questionnaire consists of 56 questions in five domains: ‘enabling and partnership’; ‘providing general information’; ‘providing specific information about the child’; ‘coordinated and comprehensive care’; and ‘respectful and supportive care’. MPOC-56 has been confirmed as internally consistent with retest reliability17). The validity of this questionnaire has been shown by positive correlations of the five constituent scales with parent’s satisfaction, and negative correlations with parental stress in relation to services received18), and has been used to examine the relevance of SF-3617). According to the MPOC-56 manual, responses with fewer than 2/3 valid responses in each domain were considered invalid.

Statistical analysis was performed using SPSS version 29.0.1.0 (SPSS, Chicago, IL, USA). The χ2 test was performed for Barthel Index scores for children’s motor skills (mobility, toilet use, feeding). Pearson’s correlation coefficient was used for associations between PCS, MCS, and MPOC-56 domains.

Types of disability were categorized as intellectual disability or physical disability. Child age was categorized as lower elementary school, upper elementary school, junior high school, or high school. Barthel Index indicates a child’s degree of independence in moving around, using the toilet, and eating, and was categorized as all independent, at least one of the three independents, or all requiring assistance. Mother’s age was categorized as 30s, 40s, or 50 or older, and the mother’s employment status was categorized as full-time, part-time, or housewife. Sleep duration was compared across three conditions (less than 6 hours, 6 hours to less than 8 hours, and 8 hours or more)19, 20) and nighttime awakenings were compared across two conditions (less than twice or more than twice)21). For the two conditions of disability type and nighttime awakenings, unpaired t-tests were used to compare the SF-36 and MPOC-56. For the three or more conditions of child’s age, mother’s age, mobility independence, sleep duration, and mother’s employment status, one-way analysis of variance was used to compare SF-36 and MPOC-56. With the t-test or one-way analysis of variance, conditions that showed significant differences between groups of two or three conditions were used as moderator variables, and the interaction terms were multiplied by the MPOC-56 domains. Multiple regression analyses were performed with PCS and MCS as dependent variables and the interaction terms of MPOC-56 domains and moderators as independent variables.

The level of significance for all the above analyses was set at 0.05.

RESULTS

As part of the study, we recruited 506 families with children attending the target special needs schools. We excluded 3 families with children in institutions who did not live with their families. Of the 503 potential study participants, 181 mothers who provided informed consent were recruited. Unsigned questionnaires were distributed to 181 mothers who gave their consent to participate in the study, and 174 (96%) were collected (Fig. 1). The sociodemographic characteristics of children and mothers are summarized in Table 1 and the results of the SF-36 and MPOC-56 in Table 2, respectively. Barthel Index scores for children’s motor skills (mobility, toilet use, and feeding) were significantly lower with physical disability than with intellectual disability. In addition, t-tests showed that physical disability had significantly lower scores in the MCS and MPOC-56 domains of ‘providing general information’ and ‘providing specific information about the child’ compared to intellectual disability.

Fig. 1.

Fig. 1.

Flow chart illustrating study participant selection process.

Table 1. Demographic characteristics of children attending a special needs school and their mothers (n=174).

All (n=174) Intellectual
disability (n=104)
Physical
disability (n=70)
Children
School Elementary school: lower grade 30 15 15
Elementary school: upper grade 35 13 22
Junior high school 48 30 18
High school 61 46 15
Disease/Disability Cerebral palsy 32 0 32
Muscular dystrophies 5 1 4
Down’s syndrome 9 9 0
Epilepsy 40 8 32
Intellectual disability 109 84 25
Autism spectrum disorder 64 60 4
Other 39 13 36
Barthel index Mobility* 15/10/5/0 73/42/9/50 70/34/0/0 3/8/9/50
Toilet use* 10/5/0 81/32/61 77/19/8 4/13/53
Feeding* 10/5/0 117/39/18 97/7/0 20/32/18
Number of service usage type Mean 1.8 1.0 3.0
Maximum/minimum 5/0 5/0 3/0
Rehabilitation visit 81 17 64
Type of rehabilitation Physical therapy 69 8 61
Occupational therapy 39 4 35
Speech language hearing therapy 13 11 2
Visiting service Nursing 12 1 11
Rehabilitation 14 1 13
Mothers
Age (years) 30–39 23 6 17
40–49 112 71 41
50 or older 39 27 12
Employment status Full time 44 27 17
Part time 65 44 21
Housewife 61 31 30
Other 4 2 2
Sleep time (hours) Mean ± standard deviation 6.1 ± 1.1 6.2 ± 1.0 6.0 ± 1.3
Waking from sleep at night (times) Mean ± standard deviation 1.9 ± 1.4 1.6 ± 1.2 2.3 ± 1.6
Single-mother families 24 13 11

*p<0.01; χ2 test between intellectual disability and physical disability.

Table 2. Means and standard deviations of the domain of Short Form Health Survey and Measure of Processes of Care 56.

Domain All Intellectual disability Physical disability
SF-36 NBS Physical function 50.9 ± 8.2 (n=174) 51.2 ± 7.7 (n=104) 50.5 ± 8.7 (n=70)
Role physical 47.1 ± 10.7 (n=174) 48.4 ± 9.7 (n=104) 45.1 ± 11.7 (n=70)
Body pain 43.2 ± 10.0 (n=174) 45.1 ± 10.6 (n=104) 40.2 ± 8.3 (n=70)
General health 50.3 ± 9.8 (n=174) 50.4 ± 10.6 (n=104) 50.1 ± 9.6 (n=70)
Vitality 46.5 ± 9.4 (n=174) 48.1 ± 9.1 (n=104) 44.1 ± 9.3 (n=70)
Social function 47.3 ± 11.3 (n=174) 48.3 ± 10.5 (n=104) 45.7 ± 12.3 (n=70)
Role emotional 47.1 ± 10.7 (n=174) 47.6 ± 10.7 (n=104) 46.4 ± 10.8 (n=70)
Mental health 49.0 ± 9.6 (n=174) 50.1 ± 9.7 (n=104) 47.3 ± 9.3 (n=70)
Physical component summary 47.8 ± 9.2 (n=174) 48.5 ± 9.4 (n=104) 46.7 ± 8.9 (n=70)
Mental component summary* 47.6 ± 8.9 (n=174) 48.8 ± 8.7 (n=104) 45.8 ± 8.9 (n=70)
MPOC-56 Enabling and partnership 5.0 ± 1.4 (n=150) 5.1 ± 1.3 (n=81) 4.9 ± 1.4 (n=69)
Providing general information* 3.9 ± 1.7 (n=152) 4.2 ± 1.5 (n=85) 3.5 ± 1.9 (n=67)
Providing specific information about the child* 4.8 ± 1.5 (n=136) 5.1 ± 1.3 (n=71) 4.5 ± 1.6 (n=65)
Coordinated and comprehensive care 5.0 ± 1.3 (n=165) 5.1 ± 1.2 (n=96) 4.8 ± 1.4 (n=69)
Respectful and supportive care 5.1 ± 1.3 (n=167) 5.2 ± 1.3 (n=98) 5.1 ± 1.3 (n=69)

*p<0.05; t-test between intellectual disability and physical disability. SF-36: Short-Form Health Survey; NBS: norm-based scoring; MPOC-56: Measure of Processes of Care 56.

Values are given as mean and standard deviation.

No significant correlations were found between the PCS and MPOC-56 domains. Correlation coefficients between the MCS and MPOC-56 domains (*p<0.05; **p<0.01; Pearson’s correlation coefficient) showed significant weak positive correlations between all domains: enabling and partnership (r=0.21**), providing general information (r=0.17*), providing specific information about the child (r=0.18*), coordinated and comprehensive care (r=0.24**), and respectful and supportive care (r=0.20*).

Table 3 shows the results of comparing the SF-36 when the type of disability or waking from sleep at night was divided into two conditions, then further divided into three or more conditions: child’s age, mother’s age, degree of independence of movement, sleep time, and mother’s employment status. A correlation was seen between mother’s employment status and both PCS and MCS, with full-time mothers having higher scores, followed by part-time and full-time workers, on both the PCS and MCS. Waking from sleep at night was associated with PCS, and mothers who woke two or more times a night tended to show lower PCS compared to mothers who woke less than twice.

Table 3. Differences between conditions of physical and mental component summary scores.

PCS MCS
Type of disability Intellectual disability 48.5 ± 9.4 48.8 ± 8.7
Physical disability 46.7 ± 8.9 45.8 ± 8.9
Children’s age Elementary school: lower grade 47.4 ± 9.0 48.6 ± 9.1
Elementary school: upper grade 46.0 ± 8.1 48.3 ± 8.4
Junior high school 46.4 ± 11.0 46.9 ± 9.0
High school 50.0 ± 8.2 47.1 ± 9.0
Mother’s age 30–39 45.5 ± 10.3 47.3 ± 10.3
40–49 48.0 ± 9.4 47.9 ± 8.2
50 or older 48.4 ± 7.9 46.9 ± 9.9
Independence of movements All independent 47.0 ± 6.8 46.3 ± 8.6
Partially independent 48.1 ± 9.8 48.2 ± 9.2
All assistance 48.0 ± 10.4 48.1 ± 8.8
Employment status Full time 45.6 ± 10.5* 45.2 ± 8.8*
Part time 48.9 ± 7.8* 48.6 ± 8.4*
Housewife 49.5 ± 8.4* 49.4 ± 8.8*
Sleep time Less than 6 hours 48.9 ± 6.3 46.9 ± 8.2
6 hours or more but less than 8 hours 47.6 ± 9.5 47.7 ± 9.2
8 or more hours 45.5 ± 1.5 49.1 ± 9.6
Waking from sleep at night Less than twice 49.7 ± 9.1 49.1 ± 9.3
2 or more times 46.4 ± 9.1 46.5 ± 8.5

*p<0.05, one-way ANOVA; p<0.05, multiple comparisons; p<0.05; t-test. Values are given as mean and standard deviation. PCS: physical component summary score; MCS: mental component summary score.

In the multiple regression analysis of the SF-36, adjusting for mother’s employment status, number of times waking at night, and type of disability, the correlation between ‘providing general information’ × times waking at night was significant (R2=0.06; p<0.05) in the multiple regression analysis using the PCS (R2=0.06; p<0.05). The plot of the SF-36 scores of mothers who woke two or more times versus the factor of ‘providing general information’ shows that the scores tended to increase with increasing awareness of services. As interaction terms for MCS, no variables were identified as significant adjustment variables in any multiple regression analyses.

DISCUSSION

Our study found that the HRQOL of mothers with children attending special needs schools was lower than the national average score of 50 on both the PCS and MCS (Table 2). This result is similar to previous studies1, 2) that reported that parents of children with disabilities generally have a lower HRQOL.

The results showed weak or little correlation between the SF-36 and MPOC-56. This differs from a previous study17) in which parents with higher scores for ‘perception of services’ in MPOC-56 displayed significantly better mental health on the SF-36. However, that previous study also suggested a relationship with psychological QOL rather than physical QOL. Since correlations in the present study were found for the MCS and a portion of the MPOC-56, a similar trend was observed.

When participants were divided by disability type, physical disability was associated with significantly lower Barthel Index, MCS and ‘providing general information’ and ‘providing specific information about the child’ domains of MPOC-56. Among participants in this study, physical disability was associated with a higher degree of assistance with ADL and a higher number of services used compared to intellectual disability. Although mothers of children with physical disabilities likely have basic medical knowledge about suctioning, tube feeding, and feeding through a gastrostomy tube, they are also at higher risk of developing secondary disabilities such as fever, bedsores, and respiratory diseases. Therefore, we felt that sharing information with providers took time and effort, and awareness of the service for providing information was low.

Caring for children with disabilities may prevent mothers from engaging in health-promoting behaviors. For example, many children with cerebral palsy experience sleep disturbance due to seizures, movement disorders, pain, and other related conditions, and caregivers may also experience sleep disturbance as a result of providing care at night22).

Previous studies have reported that factors affecting mothers’ QOL include the child’s ability4, 10), mother’s age4), social status11), sleep deprivation9), and access to medical care9). Others have reported that the child’s ability does not affect the mother’s QOL23). In this study, regression analysis of the SF-36 and MPOC-56 as adjustment variables identified disability type, mother’s employment status, and waking from sleep at night as relevant factors. Regression analysis of SF-36 and MPOC-56 was therefore performed with employment status and number of times waking from sleep at night as moderators. As a result, we found that ‘providing general information’ × times waking from sleep at night acted as a moderator for PCS. No significant moderator was identified for MCS.

Gharaibeh and Gharaibeh24) reported lower HRQOL among the mothers of children with chronic illnesses who worked compared to those who did not, but this study did not find that maternal occupation was predominantly causally related to HRQOL and services.

Sleep deprivation was also cited as an influence on HRQOL in previous studies, but sleeping time did not influence the association between MPOC-56 and SF-36, which was significant for waking from sleep at night. In the literature, the mothers of children with muscular dystrophy use non-invasive ventilation (NIV) at night25), mothers of children with epilepsy respond to seizures11), parents of children with autism spectrum disorder show reduced sleep time and increased times waking from sleep at night due to their child’s problem behaviors and parental anxiety26), and mothers of children with cerebral palsy reported that their child’s sleep disturbances and nighttime care27) caused nocturnal awakenings. Although reasons also varied by disability and diagnosis in the present study, mothers of children with disabilities were more likely to experience waking from sleep at night, indicating an impact on the association between awareness of services and HRQOL. ‘Providing general information’ is related to the ease of access to information, which improves HRQOL as awareness of services increases. This suggests the importance of improving the sleep environments of mothers and of improving the ability of providers to supply the necessary information at the right time.

This study did not find that the HRQOL of the mothers of children with disabilities was directly causally related to the services their children received, but did find that health care services can affect HRQOL depending on the conditions in which the child or mother is placed. There are various circumstances that affect HRQOL, such as the type of disability, the mother’s social participation, and the mother’s sleep status. Therefore, to improve the family-centered care services that providers aim for, thorough consideration and implementation of services and supports that meet the needs of families is essential. If reducing the amount of care required improves the mother’s sleep, or if adjusting the timing, amount, and method of providing information improves the mother’s HRQOL, then physical therapy may be one of the means to achieve this.

As a limitation of the study, only 35% of the total number of participants cooperated with the study surveys, due to the opinions of potential participants that the number of questions in the SF-36 and MPOC-56 was excessive. As a result, we were unable to ask questions about topics we wanted to investigate in detail, such as financial situation and family support, which had a negative impact on our multifaceted research and analysis. Although some previous studies28) have found significant differences in HRQOL between married mothers and single mothers, we were unable to aggregate the requisite number of participants for statistical analysis in this study. Use of simplified survey items, such as the SF-8 and MPOC-20, should be investigated. We believe that reducing the number of questions would help with investigating factors that affect the HRQOL of participants and relationships among the factors, and more participants would be able to cooperate with the survey.

Based on the results of this study, future research is recommended to investigate long-term effects in diverse populations, especially with larger sample sizes, which may help identify influencing factors and address health service challenges.

Conflict of interest

There are no conflicts of interest.

Acknowledgments

This study was conducted with the cooperation of teachers at the special needs school attended by the participnats’ children.

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