Families under pressure: stress and quality of life in parents of children with an intellectual disability

Abstract

Objective

To evaluate stress and quality of life in parents of children with an intellectual disability (moderate–severe–profound), who attend a Child and Adolescent Mental Health Intellectual Disability Service (CAMHS ID), and to estimate the perceived levels of challenging behaviour and satisfaction with supports.

Methods

Data from children attending the service from 2014 to 2017, along with clinician and parent rating scales were collected.

Results

Most children had medical comorbidities, autism spectrum disorder (ASD), and challenging behaviours. Half had a diagnosis of a mental health disorder. Less than half received respite care. Challenging behaviours and ASD were found to be correlated with increased parental stress while perception of support was inversely correlated with stress. Intellectual disability, ASD, and parental stress were correlated with a decrease in perceived family quality of life.

Conclusions

This study concurs with previous studies, outlining that parents of children with intellectual disability, in particular, where there is a diagnosis of comorbid ASD and challenging behaviour, experience increased psychological distress and lower quality of life.

Introduction

Intellectual disability is a neurodevelopmental disorder with an onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains (DSM 5 2013). The prevalence of intellectual disability worldwide has been estimated to be about 1% (Maulik et al. 2011). In Ireland, approximately 0.7% of the child population have been diagnosed with an intellectual disability, up to 65% of these children are male, and the majority (63.5%) are registered as having a mild/moderate disability (Department of Children and Youth Affairs 2016).

One-fifth (23%) of children in Ireland with an intellectual disability have been found to meet the diagnostic criteria for a mental health disorder (Department of Children and Youth Affairs 2016). Similarly in the United Kingdom, prevalence rates of mental health disorders in children with intellectual disability are estimated to be 36% (Emerson & Hatton 2007). In one study, children with an intellectual disability were found to have higher rates of anxiety than children of typical cognitive development (Green et al. 2015). Children with an intellectual disability are not only at an increased risk of developing a mental health disorder but also are more likely to develop severe and impairing behavioural difficulties (Blacher & McIntyre 2006; Einfield et al. 2011; Einsenhower et al. 2005; Kliegman et al. 2016).

Children with an intellectual disability, in particular those with an additional comorbid mental health disorder, require more intensive and ongoing care than children of typical development. This care which is both physical and emotional is provided by parents/families within the family home. These parents can encounter many challenges relating to their children’s disability and this may have a detrimental impact on their own emotional and physical well-being. There is emerging evidence to support a correlation between parenting a child with an intellectual disability and parental stress (Baker et al. 2002; Emerson et al. 2010; Mansell & Wilson 2010; Miodrag & Hodapp 2010; Patton et al. 2018; Plant & Sanders 2007; Singer 2006).

Parental stress can negatively impact on the parent–child relationship and in turn can impact on the child’s behaviour (Baker et al. 2002, 2003; Emerson et al. 2010; Families Special Interest Research Group of IASSIDD 2014; Neece et al. 2012). The levels of parental stress are influenced by both intrinsic factors (severity of disability, verbal abilities, and challenging behaviours) and extrinsic factors (family circumstances, social, and systemic support) (Hassall et al. 2005; Nurullah 2013).

In order to investigate the extent of the impact of having a child with an intellectual disability, a broad range of variables need to be examined including not only parental stress but also family well-being/quality of life and the supports available to families. Family Quality of Life (FQOL) has been defined as ‘a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family-level needs interact’ (Zuna et al. 2010: 262). Despite the significant challenges faced by families of children with an intellectual disability, satisfaction with quality of life has been reported in studies to be average to high (Hoffman et al. 2006; Summers et al. 2007; Turnbull et al. 2007).

Families of children with disabilities are more likely to experience social isolation, than families of typically developing children (Emerson & Brigham 2015; Griffith et al. 2012). This is significant as social support is recognised as a buffer to stress and loneliness (Hassall et al. 2005; Patton et al. 2018; Peer & Hillman 2014; Segrin et al. 2012). Some evidence-based group parenting training programs have been shown to improve parental well-being and reduce parental stress such as Parents Plus (Carr et al. 2016) and Triple P-Positive Parenting Program (Sanders et al. 2014). Families in Ireland can avail of limited support services through their General Practitioner (GP), Network Disability Teams, Hospitals, and community-based organisations.

Most research relating to children with an intellectual disability has been conducted internationally. To the authors knowledge, this is the first study of this kind in Ireland and so needs to be considered in the context of the demographics of the population of this study who reside in an urban catchment area in the Republic of Ireland, in addition to the limited amount of services currently available in this country for children with an intellectual disability.

The purpose of this study is twofold. (1) To investigate the impact on parental stress of parenting a child with an intellectual disability in a population of children referred to a Child and Adolescent Mental Health Intellectual Disability Service (CAMHS ID) serving an urban catchment area in the Republic of Ireland and (2) To examine the impact of the child’s neurodevelopmental and mental health/behavioural difficulties on parents’ quality of life and the impact of their perceived level of support on their stress levels.

Fig 1. Relationships between PSI, ABC, FQOL Scale and M-FSS and Correlation coefficients.

Table 1. Characteristics of the children

Table 2. Correlation coefficients between ABC, PSI, FQOL, M-FSS, and ASD

mild, moderate, strong correlations.

*5% level of significance, **1% level of significance.

Methods

Participants and procedures

All parents of children referred to the CAMHS ID Service between 2014 and 2017 were invited to participate in this study either through a phone call from the psychologist on the team or in person by the psychologist or consultant psychiatrist at routine out-patient appointments, where verbal and written information was provided.

Thirty-three parents consented to participate in the study. Participants completed a number of self-report questionnaires: Aberrant Behaviour Checklist (ABC), Parenting Stress Index (PSI), Family Quality of Life Scale (FQOL), and modified Family Support Scale (M-FSS). One participant did not complete the ABC and one participant did not complete the Family Support Scale. In addition, the psychologist and the senior registrar completed the Children’s Global Assessment Scale (CGAS).

Ethical approval was granted by the Linn Dara Ethics Committee. Of the parents who participated, 73% were married (n = 24), with on average 2.6 children at home (sd 0.7). One-third (30%, n = 10) reported a history of mental health difficulties, of whom 50% (n = 5) had a diagnosis of anxiety/ depression and one-third (n = 3) had a history of addiction.

Measures

Parental stress

The PSI 4 (Abidin 2012) is a 120 item measure which evaluates the parenting system and identifies issues that may lead to problems in the child’s or parent’s behaviour. It examines three main domains of stress: child characteristics, parent characteristics, and situational/demographic life stress. Child subscales consist of Distractibility/Hyperactivity, Adaptability, Reinforces Parent, Demandingness, Mood, and Acceptability. Parent subscales consist of Competence, Isolation, Attachment, Health, Role Restriction, and Spouse/Parenting Partner Relationship. The PSI demonstrates good reliability and validity and has been previously used to evaluate parental stress in families of children with disabilities (Davis & Carter 2008; Hassall et al. 2005).

Family quality of life

The Beach Center Family Quality of Life Scale (FQOL Scale; Hoffman et al. 2006) is a 25-item questionnaire which assesses families’ perceptions of their satisfaction with different aspects of family quality of life on a 5-point scale, from ‘very dissatisfied’ to ‘very satisfied’. It defines FQOL as consisting of five domains (1) family interaction – relationships among family members, (2) parenting – activities that adult family members do to help children grow and develop, (3) emotional well-being – the aspects of family life that address the emotional needs of family members, (4) physical/material well-being – the aspects of family life that address the physical needs of family members, and (5) supports for family member with a disability – informal and formal supports to benefit the family member with a disability. This measure has been described as the ‘most well established measure of FQOL available to date’ (Perry & Isaacs 2015; Poston et al. 2003) and demonstrates good reliability and validity (Hoffman et al. 2006).

Satisfaction with support

A support scale was developed for the purpose of this study to measure the perceptions of satisfaction with support available for families of children with disabilities. This scale was based on the Family Support Scale (Dunst & Leet 1985) and was adapted to reflect the supports available to the parents attending a CAMHS ID Service. The support scale consisted of 14 items measuring perceived support from family, social, and professional sources. Family supports consisted of partner, parents/partner’s parents, extended family, and other children. Social support consisted of social groups, friends/neighbours, and work colleagues. Professional sources of support consisted of GP, Disability Team, child’s school, home support services, respite services, residential care, and professional services (e.g. hospital paediatrics, psychiatry). Responses are measured on a 5 point Likert scale from ‘not at all helpful’ to ‘extremely helpful’, a ‘Non Applicable’ category is also available.

Child behaviour

The Aberrant Behavior Checklist (ABC; Aman et al. 1985a) is a 58 item rating scale that measures the severity of a range of problem behaviours commonly observed in individuals with intellectual and developmental disabilities. These include (1) Irritability, (2) Lethargy, (3) Stereotypy, (4) Hyperactivity, Non-compliance, and (5) Inappropriate Speech. Previous research has demonstrated that the ABC has sufficient psychometric properties (Aman et al. 1985b; Brown et al. 2002; Rojahn et al. 2003).

Child functioning

The CGAS (Shaffer et al. 1983) is a numerical scale utilised in mental health settings to estimate the general functioning of children. The clinician rates the child based on the most severe level of emotional and behavioural functioning within the past 3 months. Scores range from 1 to 100, with high scores indicating better functioning.

Data/statistical analysis

Data were anonymised, stored on a private hospital-based network, and analyzed using the Statistical Package for Social Sciences (SPSS 20.0). Pearson’s coefficients were calculated between scale totals, to measure the relationship strength between the continuous variables.

Results

Characteristics of the children

Table 1 displays the demographic characteristics of the thirty-three children and their families included in the study. The average age of children was 13 years (sd 2.77). Most were male (73%, n = 24), with a moderate level of intellectual disability (94%, n = 31). Forty-six percent (n = 15) had identified intellectual disability aetiologies (nine with genetic syndromes including three with Down’s syndrome, three with perinatal illnesses, and three with neurodevelopmental conditions).

About two-thirds had additional medical co-morbidities (64%, n = 21), three with epilepsy. Sleep issues were present in half of the children (48%, n = 16).

Most children were living in the family home (91%, n = 30), half (53%, n = 16) benefited from respite and most attended special schools (94%, n = 31), two were in a special class in mainstream school.

The majority had a diagnosis of comorbid autism spectrum disorder (ASD, 76%, n = 25), representing a significant sub group of the population. Most displayed challenging behaviours (88%, n = 29) with physical aggression and self-injurious behaviour the main concerns. Almost half had comorbid mental health diagnoses (45%, n = 15, DSM 5), the most common was mood/anxiety (93%, n = 14), followed by hyperkinetic disorders (20%, n = 3), and psychosis (6%, n = 1).

About two-thirds were taking at least one prescribed medication (70%, n = 23), on average 1.33 medication per child (sd 1.24), mainly antipsychotics (61%, n = 15), Melatonin (48%, n = 11), anti-depressants (39%, n = 9), and stimulant/non-stimulant medication (9%, n = 9).

All children benefitting from respite care displayed challenging behaviours (100%, n = 16) which was statistically significant (Pearson’s χ²(1) = 5.275, p = 0.022). Out of the children not benefitting from respite care, 71% (n = 10) had challenging behaviours. Comorbid mental health difficulties (45%, n = 15) were present in both sexes, ages, moderate or severe intellectual disability, home or residential setting, with or without respite care, having medical conditions, ASD, sleep issues or displaying challenging behaviours. The average clinician-rated CGAS was 42 (30–52), in the ‘Obvious Problems’ range.

Parents’ questionnaires

The PSI average was 306 (PSI, sd 56, n = 33); Child domain average was 158, Parent domain average was 147. Scores can range from 101 to 505. The ABC average was 69 (ABC, sd 37, n = 32). Scores can range from 0 to 174. The main concerns related to Hyperactivity/Non-compliance (mean 1.4), then Irritability (mean 1.3), Stereotypy (mean 1.3), Inappropriate Speech (mean 0.9), and Lethargy (mean 0.8).

The Family Quality of Life average was 90 (FQOL, sd 16, n = 33). Scores can range from 25 to 125. Satisfaction on the FQOL scale was reported highest for physical well-being (mean 4), family interaction (mean 3.9), parenting (mean 3.5), disability-related supports (mean 3.4), and lowest for emotional well-being (mean 2.9).

The M-FSS average was 30 (M-FSS, sd 9, n = 32). Scores can range from 0 to 70. Parents reported the highest level of support being received from Family (mean 2.5) and Professional services (mean 2.5) and lastly Social (mean 1.4).

Figure 1 displays the relationships between scales and correlation coefficients. There was a strong correlation between the level of parental stress and challenging behaviours (ABC and PSI, Pearson’s r = 0.550, 1% level); inverse moderate correlations with quality of life (PSI and FQOL, Pearson’s r = −0.405) and perceived level of support (PSI and M-FSS, Pearson’s r = −0.386, 5% level).

An inversely moderate correlation existed between family quality of life and intellectual disability (Pearson’s r = −0.457, 1% level).

The presence of ASD was weakly correlated with parental stress (presence of ASD and PSI, Pearson’s r = 0.282, 5% level), inversely with quality of life (presence of ASD and FQOL, Pearson’s r = −0.347, 5% level) but not with challenging behaviours or family support (See Table 2).

Discussion

Summary of findings

Most of the children who participated in this study were male, non-verbal with moderate intellectual disability, and medical comorbidities. Almost three quarters had an additional diagnosis of ASD.

The rate of ASD recorded in our population is higher than that reported in other published studies (Centers for Disease Control and Prevention 2018; National Disability Authority 2017) and most likely reflects our study cohort, recruited from a CAMHS ID population, all functioning within the moderate–severe–profound intellectual disability range. Most of the children in our study population were referred for assessment of behaviours that challenge, approximately 50% met the criteria for a DSM 5 mental health diagnosis in addition to sleep disturbance. These findings are similar to those from a UK study of referrals to a specialist child neurodisability service (Gangadharan et al. 2001).

Our study found that parents caring for a child with an intellectual disability, in addition to comorbid complexities, experience high levels of psychological stress. Although a control group was not used in this study, our findings are in line with previous research showing that parents of children with an intellectual disability experience higher levels of stress than those of typically developing children (Patton et al. 2018). The authors acknowledge that additional stressors may also impact on parental mental health such as addiction, marital status, and parent’s own mental health; however, for the purpose of this study, these were not evaluated and may also have impacted on our findings.

Our study demonstrated elevated parental stress levels when compared with studies looking at other parent populations, for example parents of children with developmental delays, ASD, and ADHD (Abidin 2012; Miranda et al. 2015). Child domain scores on the PSI in our study were found to be significantly higher than parent domain scores. High child scores tend to be associated with certain behaviour qualities that make it difficult for parents to fulfil their parenting roles, suggesting that child characteristics may be a major factor in the overall stress in the parent–child dyad. Of note, the child domain score is usually found to be greater than the parent domain for parents of children with disabilities.

Parents’ perception of their own stress levels correlated strongly with their child’s behaviour, rated as challenging. Our findings are consistent with previous studies demonstrating an association between child behavioural difficulties and higher levels of parental stress (Baker et al. 2002, 2003; Plant & Sanders 2007).

A diagnosis of intellectual disability in addition to ASD has been shown to be associated with an increased risk of challenging behaviour and increased parental stress in comparison to children with intellectual disability alone (Blacher & McIntyre 2006; Einsenhower et al. 2005; Totsika et al. 2011). In our study, parents of children with comorbid ASD reported high levels of stress and lower quality of life.

Perception of support was found in this study to be inversely correlated with stress, which highlights the important role support plays in influencing parental levels of stress. Previous studies have demonstrated the impact of perceived social support on reducing parental stress (Patton et al. 2018; Peer & Hillman 2014; Segrin et al. 2012). Satisfaction with support was shown to be higher for family and professional sources, with satisfaction with social support from social groups, friends, neighbours, or colleagues rated lower. Given parental reliance on family and professional support, it is important that families are well resourced and that professional supports are provided to meet their needs.

Family quality of life was found to be in the average range, which is consistent with previous research investigating families of children with intellectual disabilities (Hoffman et al. 2006; Summers et al. 2007; Turnbull et al. 2007); however, emotional well-being in our study was reported as being below average.

The level of intellectual disability, a diagnosis of ASD, and parent self-reported stress are inversely correlated with family quality of life, which indicates that the more complex a child’s presentation is and the more stress a parent feels, the less likely the family are to experience a good quality of life.

Limitations

The correlational nature of the research design prevents casual inferences being confirmed and statements about the direction of effects can only be made with caution. Not all factors which potentially contribute to parental stress and quality of life such as parents own mental health were examined in this study.

Given the small sample size, it is possible that differences in parental subgroups may be present but the number of participants did not allow for meaningful analysis of these subgroups. No control group was employed in this study.

The measures employed, with the exception of the CGAS, rely solely on parental self-report data. This is appropriate as parental perceptions were the principal subject of this study, but some parents may over or under report their own stress or their child’s difficulties due to factors such as socially desirable responding (Paulhus & Vazire 2009).

Future research

Future studies with this population could be conducted over a longer period of time to further investigate relationships between perceived parental stress, quality of life, support, and child characteristics with the addition of a control group.

The possible differences in subgroups of parents of children with intellectual disability could also be explored.

A qualitative research study could yield rich and illustrative examples of parents lived experience of parenting a child with intellectual disability.

Conclusion

These findings have important clinical implications. This study demonstrated that families of children with moderate–severe–profound intellectual disability experience significant stress. As parents are the primary providers of care to these children with complex needs, it is vital that more resources are made available to reduce parental stress and prevent carer burnout.

As parents value both family and professional support in enabling them to care for their child, professional services also need to adapt to meet the needs of these families. Parenting programs which are tailored to the needs of these parents may enable them to understand and cope with the stressors they face caring for a child with an intellectual disability and mental health difficulties, along with offering some peer support which parents may not currently have access to.