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International Journal of Developmental Disabilities

ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/yjdd20

Health-related quality of life in caregivers of


children with and without neurodevelopmental
disorders during the COVID-19 pandemic

Cristina Sinziana Trofin & Claudia Iuliana Iacob

To cite this article: Cristina Sinziana Trofin & Claudia Iuliana Iacob (2023): Health-related
quality of life in caregivers of children with and without neurodevelopmental disorders
during the COVID-19 pandemic, International Journal of Developmental Disabilities, DOI:
10.1080/20473869.2023.2236797

To link to this article: https://doi.org/10.1080/20473869.2023.2236797

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Published online: 18 Jul 2023.

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https://www.tandfonline.com/action/journalInformation?journalCode=yjdd20
Health-related quality of life in caregivers of
children with and without
neurodevelopmental disorders during the
COVID-19 pandemic
Cristina Sinziana Trofin and Claudia Iuliana Iacob
Department of Applied Psychology and Psychotherapy, Faculty of Psychology and Educational Sciences,
University of Bucharest, Bucharest, Romania

Background: Family caregivers face health issues that affect their quality of life, especially during the COVID-
19 pandemic, which challenges people’s resilience resources.
Methods: This cross-sectional design study investigated the health-related quality of life (HRQOL) of family
caregivers of children with and without neurodevelopmental disorders (N1 ¼ 129, N2 ¼ 126), focusing on
four domains: physical, psychological, social, and environmental. Also, we explored the differences between
caregivers, considering the child’s comorbidities and disorder severity.
Results: Participants in group one had lower HRQOL than group two, especially in the social and psycho-
logical areas. In addition, as expected, caregivers of children with severe disorders had a more negative per-
ception of HRQOL’s social domain than caregivers of children with mild conditions. Finally, there were
differences between HRQOL depending on comorbidities in psychological, social and environmental
domains.
Conclusions: Caregivers of children with neurodevelopmental disorders (especially if the disorder is severe
and there are comorbidities) are more vulnerable than other caregivers regarding HRQOL, which conveys the
message that social support policies should pay more attention to them.
Keywords: health-related quality of life; familial caregivers; neurodevelopmental disorders; HRQOL; physical and mental health

A familial caregiver of a child with disabilities invests such as interpersonal interactions, received support, and
effort, time, and other resources in supporting the social facilities (Schmidt and Kober 2010). HRQOL is
child’s development and rehabilitation (Beach et al. a significant predictor of mortality and morbidity in the
2005). However, in this process, the caregivers often general population and populations at risk of health
sacrifice their life-related interests (e.g. career, interper- problems (e.g. people with chronic diseases, the elderly,
sonal relationships, leisure activities, holidays) and neg- and their caregivers). Essential aspects of HRQOL were
lect aspects concerning physical and emotional health the energy levels, daily activities during leisure, sub-
(Benjak 2011, Arora et al. 2020). As a result, the care- jective perception of health status, and the social sup-
giver compromises to help the person in need. In the port group in the general population (Saxena et al.
long term, this leads to a psychological burden, distress 2001). The literature emphasizes that there are factors
(Mugno et al. 2007), anxiety, and depression (Khanna that could contribute to the perceived mental and phys-
et al. 2011). ical health of caregivers: the perceived quality of emo-
Health-related quality of life (HRQOL) describes the tional and practical support, characteristics of the
person’s subjective perceptions about her own physical environment, and resources that brace the care process
and mental health (Awick et al. 2015). This construct (Mugno et al. 2007, Allik et al. 2006, Ji et al. 2014,
includes relationship and environmental dimensions, Tung et al. 2014, Khanna et al. 2011, Adams et al.
2020, Darla and Bhat 2021).
Correspondence to: Claudia Iuliana Iacob, Department of Applied
Psychology and Psychotherapy, University of Bucharest, Street
Neurodevelopmental disorders (i.e. NDs) are defined
Panduri, no. 90, District 5, Bucharest, Romania. E-mail: claudia- in the DSM-5 as ‘a group of conditions occurring dur-
iuliana.iacob@fpse.unibuc.ro
Supplemental data for this article can be accessed online at https://
ing development‘ characterised by functional impair-
doi.org/10.1080/20473869.2023.2236797. ments in the personal, social, educational, or

# The British Society of Developmental Disabilities 2023


DOI 10.1080/20473869.2023.2236797 International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0 1
Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

professional field (e.g. learning and controlling execu- through the domain of social support from the
tive functions, social skills, intelligence) (American WHOQOL-BREF.
Psychiatric Association 2013). The main categories are Moreover, it is important to observe how caregivers
intellectual disorders (e.g. intellectual disabilities, perceive their HRQOL depending on disorder severity
Down Syndrome), autism spectrum disorders (i.e. (Huang et al. 2014, Tung et al. 2014, Pisula and
ASD); attention deficit hyperactivity disorder (i.e. PoreR bowicz-D€orsmann 2017) and child comorbidities
ADHD); communication disorders (language deficits in (Darla and Bhat 2021), aspects that could impact the
communication and speech), specific learning disorders perceived HRQOL domains as previous studies showed.
(e.g. dyslexia), and motor disorders (disorders related to These connections lead to a deeper understanding of
the development of coordination, stereotypical move- caregivers of children with neurodevelopmental disor-
ments, ‘tic disorders’). ders, a population prone to various clinical challenge-
The prevalence of NDs is rapidly increasing. Thus, s(e.g. stress, fatigue, and chronic pain, anxiety,
according to global statistics from 2016, about 1 in 6 depression; Padden et al. 2019, Sharpley et al. 1997)
children (i.e. 17%) had an ND, compared to 2009– and difficulties to enjoy leisure activities or perform
2011, when the prevalence of these disorders was daily tasks (Ji et al. 2014, Arora et al. 2020).
16.2% (Centers for Disease Control and Prevention The parents of children with ASD report a much
2020). In addition, statistics also show that health status lower HRQOL, the most affected area being physical
negatively influences approximately 53% of caregivers health, compared to parents of children with typical
(e.g. they feel anxious or depressed and frequently use development (Allik et al. 2006, Mugno et al. 2007) and
psychoactive or sedative medications to reduce fatigue the general population (Khanna et al. 2011). In add-
and pain) (Centers for Disease Control and Prevention ition, the disorder’s severity and the child’s behaviour
challenges contribute to the parents’ negative perception
2019). Thus, caregivers could face problems related to
of their health (Tung et al. 2014, Khanna et al. 2011).
their own physical and mental health or have a negative
The families of children with ASD reported a much
perception of it, regardless of their medical status
lower level of HRQOL (i.e. physical activity domain,
(Mugno et al. 2007, Khanna et al. 2011).
social support, and perception of global health) com-
The negative perception of physical health and low
pared to caregivers of young people with intellectual
psychological well-being are common findings in the
disabilities (Arora et al. 2020), cerebral palsy, epilepsy,
majority of family caregiving studies (i.e. caregivers of
including children with typical development (Mugno
children with neurodevelopmental disorders, such ASD
et al. 2007). Arora et al. (2020) explain the results by
or intellectual disabilities; Adams et al. 2020, Allik
the fact that children with ASD, especially those with
et al. 2006, Darla and Bhat 2021, Khanna et al. 2011,
low-functioning autism, have many behavioural chal-
Mugno et al. 2007, Tung et al. 2014). However, to our
lenges and require more attention and care from care-
knowledge, the literature does not cover self-assessed
givers. Consequently, parents neglect their relationships
HRQOL (Adams et al. 2020, Khanna et al. 2011) in
with others due to insufficient time or physical and
terms of its dimensions (i.e. psychological, environmen- emotional exhaustion. Likewise, mothers of children
tal, and social aspects; Tung et al. 2014). with ASD reported lower HRQOL than the general
Lin et al. (2009) found that using the WHOQOL- female population in the USA, especially regarding
BREF scale (WHOQOL Group 1995) on a sample of physical pain, vitality, social functioning, overall health,
familial caregivers of children with intellectual disabil- mental health, and emotional state. Furthermore, when
ities, three aspects emerge: (1) the negative perception the researchers compared mothers of children with
of global health, (2) the declared degree of stress, and ASD with people with clinical depression, the results
(3) the insufficient physical and emotional help from showed similarities between the two populations
the family. These factors are often ubiquitous and are (Khanna et al. 2011).
implicitly associated with a lower QOL. Thus, care- Parents of children with Down Syndrome reported
givers who reported poor quality help (i.e. physical poorer physical and mental health, lower levels of psy-
help) from others and declared a lack of emotional sup- chological well-being, and more significant psycho-
port from family (Kim et al. 2021) and public services logical distress than parents of neurotypical developing
(Vasilopoulou and Nisbet. 2016) also reported a lower children (Hedov et al. 2000). Similar results were
QOL. On the other hand, a healthy functioning and reported for caregivers of children with ADHD (Liang
positive relationship between family members was asso- et al. 2021). Child comorbid diagnoses were also asso-
ciated with a higher QOL even when the care burden ciated with negative changes in caregivers’ QOL or
was overwhelming (Kim et al. 2021). The authors state mental health status (Darla and Bhat 2021). Another
the need to investigate further the aspects related to factor investigated in relation to caregivers’ QOL is
social relations and the perceived external help, which child age or age category. Some studies reported lower
will be followed and investigated in the present study caregiver QOL when their children reached adolescence

2 International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0


Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

compared to previous developmental stages. At the restrictions imposed by the authorities at the time of
same time, other studies did not find age, but rather data collection. Second, we expect caregivers of teen-
symptom severity and externalising behaviours to pre- agers with NDs to report lower HRQOL compared to
dict the caregiver’s QOL (Baghdadli et al. 2014, Patel caregivers of younger children with NDs, due to the
et al. 2022). rise of behavioural challenges in teenage years. Third,
As a result, QOL is currently a relevant field of we assume that there will be differences in HRQOL
study concerning caregivers of children with ASD between caregivers of children with NDs depending on
(Bohadana et al. 2019, Padden et al. 2019) and other the child’s diagnosis. Fourth, caregivers of children
disorders (Kim et al. 2021, Pokharel et al. 2021), with with moderate and severe disabilities will report a lower
implications related to the current COVID-19 pan- HRQOL compared to caregivers of children with mild
demic. For example, caregivers describe high distress, disabilities. Finally, we anticipate that caregivers of
anxiety, and depressive symptomatology associated dir- children with comorbid NDs will describe a more nega-
ectly with fears regarding access to rehabilitation inter- tive perception of their physical and psychological
ventions and proper education for their child during the health than caregivers of children with one diagnosis.
COVID-19 pandemic (Folostina and Iacob 2021, Grumi
et al. 2021). Moreover, research shows that the care- Methods
givers of children with ASD felt more distress and Study design and participants
higher anxiety levels (Corbett et al. 2021). However, The present study is based on a convenience sample of
only the perceived distress was associated directly with 255 family caregivers (Mage ¼ 37.14, SDage ¼ 8.05) of
the current pandemic (Friesen et al. 2022). Studies children aged between 1 and 17 years old. We analysed
showed that female caregivers experienced post-trau- two groups: group 1 - caregivers of children with NDs
matic stress symptomatology (Wade et al. 2021) or (N1 ¼ 129, Mage ¼ 37.36, SDage ¼ 8.46), and group 2 -
other mental health problems during the COVID-19 caregivers of children with typical development
pandemic (e.g. psychological suffering, persistent fear, (N2 ¼ 126, Mage ¼ 36.93, SDage ¼ 7.48). In group one,
concerns about family health and economic status) the questionnaire was filled in by 111 females and 18
(Friesen et al. 2022, Grumi et al. 2021). males, of whom 115 were parents and 14 grandparents.
Most quantitative research on HRQOL in familial The main inclusion criteria for this group were caring
caregivers of children with NDs focused primarily on for a child with a neurodevelopmental disorder. Group
ASD, intellectual disorders, genetic syndromes, and two consisted of 116 females and 10 males, of whom
ADHD, giving little information about caregivers of 121 were parents and 5 grandparents. We included in
children with communication or motor disorders this group caregivers of children without a neurodeve-
(Schoemaker and Houwen 2021). This research will lopmental disorder. In both groups, the children had
also take into account communication and motor disor- similar ages and their gender was unknown. The socio-
ders. Additionally, the data will be collected from demographic and disease characteristics of caregivers
Romania, an eastern European country, providing and children are provided in Supplementary material
national policy-makers with arguments supporting this Table SM1. We included familial caregivers (i.e.
vulnerable population. To our knowledge, previous parents, grandparents) actively attending to children,
studies did not consider samples from this country. excluding formal caregivers (e.g. doctors, nurses).
Even though we do not expect to find different results There was no minimum duration of care needed to par-
from other samples regarding HRQOL domains, we ticipate in the current research if the caregivers were
believe the study will help national stakeholders assist not the parent of the children (i.e. if they were
these caregivers. grandparents).

Study aim Ethical considerations


This study investigates the HRQOL of family care- The Research Ethics Committee of the University of
givers of children with NDs compared to caregivers of Bucharest approved this study (notification no.
typical developing children. Analyses of HRQOL will 52/14.08.2021). All procedures were carried out follow-
be performed depending on the child age category, pri- ing the Declaration of Helsinki.
mary diagnosis, child’s disorder severity, and the pres-
ence of comorbidities (i.e. children with comorbid Procedure and data collection
diagnoses versus children with one ND). All participants completed the entire series of question-
First, we assume that caregivers of children with naires in an online survey created in Google Forms.
NDs have a more negative perception of HRQOL than There were no missing data because all questions in the
caregivers of children with typical development. survey were checked as mandatory. At first, they read
Specifically, we expect the most affected areas to be an informed consent on the purpose of the research, the
physical and mental health, given the COVID-19 time allotted for completion, the processing of personal

International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0 3


Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

data, and the confidentiality of the information they do you enjoy life?’; (3) for the social domain – ‘How
provide. The Google Forms survey was active for com- satisfied are you with personal relationships?’; (4) for
pletion between December 2020 and March 2021, when the environment domain – ‘How safe do you feel in
COVID-19 restrictions were still in place in Romania. your daily life?’. A Cronbach Alpha coefficient of .92
The survey was distributed only to Romanian partici- was obtained in the present research. Also, Cronbach
pants and all of the questionnaires were completed by Alpha coefficient was calculated for each domain of
familial caregivers (e.g. mothers and grandmothers). In WHOQOL-BREF0 s scale: (1) physical health, a ¼ .77;
terms of data collection, the survey was shared in (2) psychological/mental health, a ¼ .80; (3) social, a
online groups for caregivers of children with special ¼ .77; (4) environment, a ¼ .82.
needs and by e-mail to centres, institutions, organisa-
tions, and specialists (e.g. psychologists, speech thera- Socio-demographic and health-related
pists, social workers) from Romania, who shared the characteristics questionnaire
questionnaire with caregivers. For the second group, All participants completed a socio-demographic ques-
primary and secondary school teachers distributed the tionnaire divided into two parts. The first part included
questionnaire to the respondents. Therefore, we used questions about themselves regarding gender, age, edu-
convenience sampling with ‘snowball‘ or ‘network‘ cation, employment status, marital status, medical diag-
sampling. nosis, and the relationship with the child (e.g. parent,
The power analysis of the test was performed using grandparent, legal guardian). The second part of the
GPower 3.1 software (Faul et al. 2007), both a priori questionnaire referred to the child’s characteristics: age,
and post hoc. For a test power of 95% and an effect of medical diagnosis (where appropriate), and disorder
.50, using a ¼ .05, a priori analysis suggested 105 par- severity (i.e. mild, moderate, or severe disability).
ticipants in each group. In the post hoc analysis, we Regarding diagnosis, caregivers could tick the diagnosis
obtained statistical power of 99% in the present based on the DSM-5 formulation and mark several dis-
research (N1 ¼ 129, N2 ¼ 126, a ¼ .05, d ¼ .5). orders simultaneously (i.e. associated comorbidities).
Then, caregivers reported the disorder’s severity.
Measures Caregivers of children with neurotypical develop-
Health-related quality of life ment completed similar questions, except for the med-
To measure the health-related quality of life (HRQOL), ical diagnosis item. Instead, two questions were added
we used the WHOQOL-BREF scale (WHOQOL Group regarding a possible clinical condition of the child (e.g.
1998). This self-reported scale covers four domains as asthma, allergies) and the severity of that medical con-
follows: (a) physical health, which includes facets such dition (i.e. mild, moderate, severe impairment). As
as daily activities, drug/medication addiction/depend- mentioned above, the caregivers reported the name of
ence, mobility, energy, fatigue, discomfort, pain, hours the medical condition and its severity.
of sleep, opportunities for relaxation and fitness self-
reported work; (b) the psychological domain that inte- Statistical analysis
grates subfields such as body image perception, positive The IMB SPSS Statistics Version 25 program (IMB
and negative emotions felt, self-perceived self-esteem, Corp 2017) was used to analyse the data from this
spirituality/religiosity, personal beliefs, and cognitive study. To investigate the HRQOL differences between
abilities (i.e. thinking, memory, learning, and concentra- caregivers of children with NDs and caregivers of typ-
tion); (c) social relationships, domain that includes the ically developing children, we used the independent
description of interpersonal relationships, the perceived samples t-test, as there were no violations of the nor-
social support and the quality of sexual activity, (d) the mality condition. As recommended, the skewness and
environment domain, relating to financial resources, kurtosis indicators had values between 1.96 and
freedom, physical security and safety, perception of þ1.96. We reported the usual statistical indicators for
public health services (i.e. accessibility and quality), this type of analysis (t-test value, degrees of freedom,
family environment, ability to access information and p-value), including Cohen’s d effect size. A p-value
learn new skills, opportunities for leisure activities (i.e. under .05 was considered the cutoff for statistical sig-
recreational activities), physical environment (i.e. pollu- nificance. Cohen’s d values were interpreted using the
tion, noise, traffic, climate) and transport services following benchmarks: small effect size (d  .02),
(WHOQOL Group 1998). medium effect size (d ¼ .05), and large effect size (d
The scale has 26 items scored on a 5-point Likert ¼.08) (Cohen 1988).
scale, from 1 (not at all/never) to 5 (an extreme amoun- Next, we compared the HRQOL of caregivers in the
t/always). Examples of items are: (1) for the physical first group (i.e. children with NDs), depending on the
health domain – ‘To what extent do you feel that phys- child’s age: (1) 1 to 6 years old in the preschoolers’
ical pain prevents you from doing what you need to subgroup; (2) 7 to 11 years old in small school child-
do?’; (2) for the psychological domain – ‘How much ren’s subgroup; (3) 12 to 17 years old group in the

4 International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0


Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

teenagers’ subgroup. Differences between all the sub- environmental domains. For the social domain, the
groups were analysed with Welch’s t-test. To approach independent samples t-test was statistically significant
one of the most mentioned limitations in the research (t(253) ¼  5.11, p < .001, Cohen0 s d ¼ 0.64), with a
literature, we compared the HRQOL of the first group medium effect size. Similarly, for the environment
of caregivers by the child’s diagnosis, conducting the domain, the differences were also statistically signifi-
non-parametric Kruskal-Wallis analysis of variance. cant (t(253) ¼  3.14, p < .01, Cohen0 s d ¼ 0.39),
There were eight categories created by the diagnosis with a small effect size (see Table 1).
criteria: (1) ASD (N ¼ 52); (2) ADHD (N ¼ 14); (3)
communication disorders (N ¼ 13); (4) learning disor- Differences between caregivers of children
ders (N ¼ 2); (5) motor disorders (N ¼ 2); (6) intellec- with neurodevelopmental disorders,
tual disability (N ¼ 8); (7) others (i.e. comorbidities depending on children’s age
with others disorders, like enuresis, hypoacusis or epi- Three groups were built according to the child’s age
lepsy) (N ¼ 17); (8) multiple NDs (i.e. comorbidities with NDs. The first group included preschoolers
with another ND, like ASD or ADHD; N ¼ 21). Post between 1 and 6 years old (N ¼ 74), the second group
hoc Dunn analyses were used for significant results to had small school aged children between 7 and 11 years
see the comparisons between the diagnoses. Given the old (N ¼ 30), and the last group was teenagers between
small sample sizes of the subgroups and their variety, 12 and 17 years old (N ¼ 25). There were no significant
we chose to report the results of the adjusted p-value to differences between the caregivers’ HRQOL domains
avoid possible false-positive results (Feise 2002, according to the children’s age. The Supplementary
Ludbrook 1998). material Table SM3 has more information about the
After that, we computed classic one-way ANOVA to statistical results. Therefore, the subsequent analyses
see whether the HRQOL of caregivers of children with referred to the caregivers of children with NDs.
NDs differs depending on the disorder severity. The
Levene test showed that the score variances were Differences between caregivers of children
homogenous for all domains investigated: (1) the phys- with neurodevelopmental disorders,
ical domain, F(2, 126) ¼ .54, p ¼ .570; (2) the psycho- depending on child’s primary diagnosis
logical one F(2, 126) ¼ 1.16, p ¼ .312; (3) social We explored the differences between caregivers in the
domain F(2, 126) ¼ .19, p ¼ .82; (4) that of the envir- first group depending on the child’s primary diagnosis.
onment F(2, 126) ¼ .20, p ¼ .811. Lastly, HRQOL dif- Most children were diagnosed with ASD, followed by
ferences depending on child comorbidities or single ADHD and communication disorders (see Table SM1).
diagnosis were analysed with Welch’s t-test, due to the Kruskal-Wallis’s non-parametric analysis emphasised a
big difference in sample sizes. significant difference in the social support domain
(H ¼ 20.14; p ¼ .01) and the environmental domain
Results (H ¼ 15.64; p ¼ .03) between the caregivers, depending
Descriptive statistics on the child’s diagnosis. Pairwise comparisons using
The means, standard deviations, and minimum and Dunn’s post hoc test for the social support domain indi-
maximum values of the normality indicators (skewness cated that the ND comorbidities subgroup scores were
and kurtosis) for each group are provided in significantly different from those of the communications
Supplementary material Table SM2. subgroup (adjusted p ¼ .01). In other words, caregivers
of children with communication disorders (M ¼ 16.77)
Between-group differences regarding HRQOL reported higher social support than caregivers of children
domains with comorbid NDs (M ¼ 12.24). No other significant
The independent samples t-test was statistically signifi-
differences were found using the conservative adjusted
cant, t(253) ¼  4.07, p < .001, Cohen0 s d ¼ 0.51.
p-value approach. For the other two HRQOL domains,
Caregivers of children with NDs (M ¼ 15.54, SD ¼
there was no significant difference depending on the
2.97) reported lower scores on physical health than
caregivers of children with typical development Table 1. Overall between-group differences regarding
(M ¼ 16.88, SD ¼ 2.21). T-test analysis for independent HRQOL domains.
samples was statistically significant for the psycho- Group 1 Group 2
logical domain (t(253) ¼  5.41, p <.001, Cohen’s HRQOL Cohen0 s
domain M SD M SD t(253) p d
d ¼ 0.54). In the same way, caregivers of children
Physical 15.54 2.97 16.88 2.21 4.07 .000 .51
with NDs (M ¼ 15.03, SD ¼ 2.97) reported lower Psychological 15.03 2.97 16.76 2.04 5.41 .000 .54
scores on the mental health domain than those of chil- Social 13.7 3.84 15.9 3.00 5.11 .000 .64
Environmental 14.8 2.95 15.9 2.40 3.14 .002 .39
dren with typical development (M ¼ 16.76, SD ¼ 2.04).
Note: Group 1 ¼ caregivers of children with neurodevelopmental
Statistical analyses also found significant differences disorders; Group 2 ¼ caregivers of children with typical
between the two groups regarding the social and development.

International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0 5


Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

child’s diagnosis: physical (H ¼ 10.15; p ¼ .18) and psy- Discussion


chological (H ¼ 9.52; p ¼ .22). The present research aimed to investigate how family
caregivers of children with NDs perceive their HRQOL
Differences between caregivers of children compared to caregivers of typical developing children.
with neurodevelopmental disorders, As expected, the caregivers of children with NDs report
depending on disorder severity lower HRQOL than the other group. These results con-
We analysed the possible differences between the care- firm and complement comparative studies conducted on
givers of children with NDs regarding HRQOL, familial caregivers of children with and without NDs
depending on the severity of the child’s condition. and their QOL (Adams et al. 2020, Bohadana et al.
Thus, three categories emerged based on the degree of 2019, Darla and Bhat 2021, Khanna et al. 2011, Tung
disability present in the child’s diagnosis: (1) mild dis- et al. 2014).
ability (N ¼ 30); (2) moderate disability (N ¼ 58); (3)
severe disability (N ¼ 41). One-Way ANOVA analyses Overall differences in HRQOL domains
showed non-significant differences for the physical The present study followed the four domains of
domain (F(2, 126) ¼ 2.97, p ¼ .052), the psychological HRQOL (i.e. physical health, psychological, social sup-
domain (F(2, 126) ¼ 2.28, p ¼ .100), and the environ- port, and environment) described by the World Health
ment domain (F(2, 126) ¼ 2.41, p ¼ .091). Only in the Organization (WHOQOL Group 1995, 1998).
social domain, we found significant between-group dif- Regarding the first two domains, caregivers of children
ferences (F(2, 126) ¼ 3.96, p ¼ .021, g2 ¼ .002), with
with NDs reported a lower quality of life than care-
a small effect size. The Bonferroni post-hoc analysis
givers of typical developing children. These results
indicates a significant difference between the caregivers
reinforce the widespread and long-investigated hypoth-
of children with mild disorders and the caregivers0
esis that caregivers of children with NDs face various
group of children with severe disorders in describing
negative feelings due to the many demands associated
the quality of perceived social support (see Table 2).
with caring for a child with various conditions. The
caregiving process then reflects on their self-assessed
Differences between caregivers of children
QOL, especially their physical and mental health. The
with neurodevelopmental disorders,
literature links the negative perception of QOL to bur-
depending on comorbidities
We analysed the differences between caregivers of chil- den and stress, including how caregivers strive to cope
dren with comorbid NDs (N ¼ 38) and children with a with the pressures and demands (Kim et al. 2021).
single ND diagnosis (N ¼ 91) in each HRQOL domain Differences regarding self-reported environmental
(see Table 3). The differences were significant in the HRQOL between caregivers of children with and with-
following domains: psychological (t(67.2) ¼ 2.10, p < out NDs were also found. So far, most studies did not
.05, Cohen0 s d ¼ .41), social (t(67.2) ¼ 2.10, p < .05, provide clear guidelines or conclusive information, as
Cohen0 s d ¼ .41) and environmental (t(67.2) ¼ 2.58, p most research emphasises the physical and psycho-
< .05, Cohen0 s d ¼ .51). No significant differences logical domains of HRQOL (Vasilopoulou and Nisbet
were obtained across the physical domain (t(67.2) ¼ 2016, Allik et al. 2006). The variations revealed in the
1.27, p ¼ .208, Cohen0 s d ¼ .24). In other words, there current study can be associated with the lockdown and
are no significant differences in how caregivers of chil- the restrictions imposed during the COVID-19 pan-
dren with NDs perceive physical health depending on demic, especially in the environment and social
the presence or absence of a comorbid diagnosis. domains. In addition, the negative implications of the
However, there are significant differences in the psy- restrictions on social interactions and outdoor activities
chological, social and environmental aspects associated also could have impacted HRQOL. COVID-19-related
with HRQOL. Caregivers of children without a comor- factors may have contributed to the respondents’ per-
bid diagnosis report higher levels of HRQOL in the ceptions: limiting or prioritising access to hospitals and
domains mentioned above, with small to medium effect medical services, public transport safety and public
sizes. areas, and trust in state institutions.

Table 2. Between-group differences regarding HRQOL domains, depending on disorder severity.

Group 1.1 (N ¼ 30) Group 1.2 (N ¼ 58) Group 1.3 (N ¼ 41)


HRQOL domain M SD M SD M SD F(2, 126) g2
Physical 16.3 2.60 15.7 3.12 14.7 2.99 2.81 .043
Psychological 15.9 2.55 15.0 3.10 14.4 2.91 2.39 .037
Social 14.7 4.04 14.1 3.80 12.4 3.49 3.73 .056
Environment 15.3 3.24 15.1 2.75 14.1 2.93 1.95 .030
Note: Group 1.1 ¼ mild disability; Group 1.2 ¼ moderate disability; Group 1.3 ¼ severe disability;  p < .05.

6 International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0


Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

Table 3. Between-group differences regarding HRQOL domains, depending on the presence of child comorbidities.

Group 1.1 (N ¼ 91) Group 1.2 (N ¼ 38)


HRQOL domain M SD M SD t(67.2) p Cohen0 s d
Physical 15.7 2.97 15.0 3.08 1.27 .208 .24
Psychological 15.4 2.77 14.1 3.21 2.10 .040 .41
Social 14.2 3.70 12.6 3.99 2.10 .040 .41
Environmental 15.3 2.68 13.7 3.29 5.58 .013 .51
Note: Group 1.1 ¼ Caregivers of children with neurodevelopmnent disorders and without a comorbid diagnosis; Group 1.2 ¼ Caregivers
of children with neurodevelopmnent disorders and with a comorbid diagnosis.

It is imperative to highlight that caregivers of chil- McIntyre and Brown 2018), leading to the perception
dren with NDs had a lower QOL compared to care- that the support received is insufficient. In addition,
givers of children with typical development, mainly in social support was higher for caregivers who offered
the social and psychological domains, followed by more attention to their child’s health status and lowered
physical health and environmental HRQOL. These for those who spent more time worrying about the men-
results are inconsistent with previous research showing tal/physical health of the child (Wang 2021). Future
that physical health (Tung et al. 2014, Adams et al. research may consider these directions to address less
2020) and mental health (Khanna et al. 2011) matter studied NDs and validate the present study’s results.
most. The current paper’s results could be explained by
the existence of ‘social restrictions‘ (i.e. legal regula- Caregivers’ HRQOL and child disorder severity
tions, moral responsibility) faced in the COVID-19 pan- There were differences between groups depending on
demic. Thus, people seemed to prioritise social lifestyle child disorder severity only in the social domain. Thus,
changes during the COVID-19 crisis (Zhang and Ma the caregivers of children with severe disabilities
2020). Future studies may deepen these issues regarding reported lower social support compared with those of
QOL, both during the current COVID-19 pandemic and children with mild disabilities. Previous studies
after the pandemic. emphasised a dynamic link between perceived social
In terms of physical health, studies showed that care- support, parental distress, quality of life aspects or
givers of children with various disorders, especially health status perception, and child behaviour character-
from the autism spectrum, describe severe pain (e.g. istics (Sharpley et al. 1997, Allik et al. 2006, Faw
migraines) and persistent fatigue as the leading indica- 2018). Thus, researchers explained that consistent help
tors of poor physical health quality (Allik et al. 2006, from other family members (Sharpley et al. 1997) and
Mugno et al. 2007, Adams et al. 2020, Tung et al. qualitative social support (Faw 2018) improve the
2014). In contrast, in the present study, the domains in health perception of caregivers significantly in the case
which caregivers of children with NDs reported the of children with severe disorders (i.e. lower scores in
lowest scores compared to caregivers of typical children anxiety, depression, and distress scales).
were primarily the social and psychological ones.
Caregivers’ HRQOL and the presence of a
Caregivers’ HRQOL and child’s primary child comorbid diagnosis
diagnosis The results showed that caregivers of children with a
We compared the caregiver’s HRQOL on various single diagnosis had higher social, psychological and
domains according to the child’s diagnosis, as indicated environmental HRQOL scores compared to caregivers
by Schoemaker and Houwen (2021) recommendations. of children with comorbidities. These findings are in
We divided the group into multiple subgroups: ASD, line with previous studies emphasising the role of
ADHD, communication disorders, learning disorders, comorbid diagnosis in QOL perception. For example, in
motor disorders, intellectual disability, multiple NDs their research about the caregivers of children with
and others (i.e. comorbidities with a non-developmental ASD, with and without comorbid intellectual disability,
disorder, like enuresis, hypoacusis or epilepsy). Most Vaz et al. (2021) show that there are several, but lim-
results were not significant, given the low sample sizes ited, implications of comorbidity over the caregiver0 s
in the subgroups. However, caregivers of children with QOL perception (e.g. they could declare less time for
communication disorders reported higher social support leisure activities). Also, in children with Down
than caregivers of children with multiple NDs. This Syndrome, associated diagnoses (e.g. hypothyroidism,
finding may be explained by the fact that caregivers of heart problems, repeated respiratory infections, eczema)
children with multiple NDs need more social support were connected with lower QOL of their caregivers due
more frequently than those of children with just one to more financial difficulties (e.g. multiple medical con-
condition or with higher levels of adaptive behaviour sultations, various therapies and treatments) (Darla and
(Carlson and Miller 2017, Drogomyretska et al. 2020, Bhat 2021).

International Journal of Developmental Disabilities 2023 VOL. 0 NO. 0 7


Cristina Sinziana Trofin and Claudia Iuliana Iacob HRQOL in familial caregivers

Limitations analyses were performed by Cristina Sinziana Trofin.


Complementary to the contributions highlighted above, Cristina Sinziana Trofin wrote the first draft of the
this study has several limits, most deriving from the manuscript, and Claudia Iuliana Iacob commented on
cross-sectional nature of the research design. As such, and reviewed the subsequent versions. Both authors
no timeline inferences can be made between the varia- read and approved the final manuscript.
bles, and we cannot know how the HRQOL will modify
over time or depending on what factors. Disclosure statement
Sample characteristics also can introduce some bias in No potential conflict of interest was reported by the
the results. The current study included grandparents and authors.
fathers of children with NDs, an aspect proposed as a
research direction in the study conducted by Kim et al. Ethics approval
(2021); however, the percentage was low. Future studies Ethical approval was waived by the Research Ethics
could consider targeting a more significant share of pri- Committee of the University of Bucharest (notification
mary caregivers such as grandparents, fathers or other no. 52/14.08.2021).
relatives/legal guardians. We could not analyse the pos-
sible gender differences and the implications of the med- ORCID
ical history of the caregiver due to the imbalanced Claudia Iuliana Iacob http://orcid.org/0000-0001-
sample (i.e. primarily female caregivers who participated 9508-4881
in this research). Females take on most caregiving tasks,
especially in collectivistic or developing countries Data availability statement
(Sharma et al. 2016, Pharr et al. 2014), such as The data that support the findings of this study are
Romania. Furthermore, the subgroup with clinical health openly available in the Mendeley repository at https://
conditions was small (i.e. 15 out of 129 for group 1 and data.mendeley.com/datasets/9c9tcxrmpx/1
15 out of 126 for group 2), and we could not analyse the
HRQOL. Finally, socio-economic status and the particu-
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