Stress and Family Quality of Life in Parents of Children with Autism Spectrum Disorder: Parent Gender and the Double ABCX Model

Abstract

Past research has supported the utility of the Double ABCX model of family adaptation for parents raising a child with autism spectrum disorder (ASD). What remains unclear is the impact of family-related variables on outcomes in both mothers and fathers within the same family. We explored the potential predictors of maternal and paternal stress and family quality of life in an Australian sample of 196 parents of children with ASD aged 3–16 years. Using a cross-sectional design, parents completed questionnaires assessing factors within the Double ABCX model attributed to family adaptation. Findings provide further evidence of the negative impact of child externalising behaviours and highlight the importance of family sense of coherence on positive parental outcomes.

Appendix

Measures

Stressors (aA)

Raising a child with ASD has been described as a major transition that can disturb the balance in family functioning and have a negative impact on the lives of families and individuals (e.g., Keenan et al. 2010). Previous research has demonstrated that a child’s developing symptoms, behavioural concerns, adaptive functioning, and the pile-up of stress within the family system may all contribute to poorer outcomes in parents. However, these variables have yet to be combined within the Double ABCX model. In order to obtain a comprehensive understanding of the independent and cumulative impact of stressors associated with raising a child with ASD each of these variables were investigated in the current study.

Behaviour Assessment System for Children, Second Edition (BASC-2)

The Preschool (ages 2–5; 134 items), Child (ages 6–11; 160 items), and Adolescent (ages 12–21; 150 items) Parental Rating Scales from the BASC-2 were used to measure the prevalence of children’s emotional and behavioural problems (Reynolds and Kamphaus 2004). Two indices were used to capture child internalising (i.e., somatisation, anxiety, depression) and externalising problem behaviour (i.e., hyperactivity, conduct problems, aggression) producing standardised scores in each domain. Items were rated on a 4-point Likert scale (1 = never to 4 = almost always) with greater scores indicating a higher frequency of observed behaviour. Sample items included: “Has poor self control” and “Is easily upset”. Good internal reliability (Cronbach’s alphas ranging from 0.73 to 0.95) and test–retest reliability (Cronbach’s alphas ranging from 0.81 to 0.84; Reynolds and Kamphaus 2004) has been reported for the BASC-2.

Social Communication Questionnaire (SCQ)

Autism severity was measured using the SCQ Lifetime Form. This 40-item parent questionnaire uses a ‘yes’ or ‘no’ response format to validate autistic traits, and is summed to obtain a total score, with higher scores indicating greater ASD severity (Rutter et al. 2003). Sample items included: “Has she/he ever had any interests that preoccupy her/him and might seem off to other people?” and “When she/he was 4–5, did she/he smile back if someone smiled at her/him?” Items demonstrate good internal reliability (Cronbach’s alpha 0.80; Manning et al. 2011). Good internal consistency was obtained in the present study (Cronbach’s alpha = 0.83).

Vineland Adaptive Behaviour Scales, Second Edition (VABS-II)

The Parent/Caregiver Rating Form of the VABS-II was used to assess children’s personal and social skills in four domains of functional adaptation (Sparrow et al. 1984). Children’s level of communication, daily living skills, socialisation, and motor skills were assessed to determine age equivalent adaptive abilities and combined into a total adaptation score. The items of the VABS-II were rated on a 3-point Likert scale (2 = usually to 0 = never), with higher scores indicating greater adaptive ability. Sample items included: “Chews with mouth closed” and “Uses irregular plurals correctly”. Previous studies have found the VABS-II to demonstrate good psychometric properties (Cronbach’s alpha 0.89; Hall and Graff 2011; Sparrow et al. 1984).

Parenting Stress Index (PSI)

The amount of stress occurring outside of the parent–child system was assessed using the Life Stress scale from the PSI (Abidin 1995). This 19-item scale captures stressful events, which may have been experienced by the family within a 12-month period. Items were weighted due to the amount of strain impacted on family members with a possible range of 0–79. The mean score of life stress in the present study was 8.0, indicating low levels of life stress reported in the current sample. Evidence suggests that this measure is reliable and valid for assessing events contributing to stress (Barker et al. 2011). Poor internal consistency was obtained in the present study (Cronbach’s alpha = 0.41) due to the low level of endorsement on scale items.

Resources (bB)

Previous investigation of the utility of the Double ABCX model has predominately focused on the role of informal support as an external resource for families raising children with ASD, neglecting aspects within the family system. This study sought to extend the findings of previous research with a novel investigation into the role of characteristics of the family unit and family members (i.e., family hardiness, family environment), the relationship between parents (i.e., marital adjustment), and the internal and external resources available within the community (i.e., informal and formal support). The potential overlap between family resources and measures of adaptation was also considered in the choice of variables to include within the Double ABCX model.

Family Hardiness Index (FHI)

Parent’s perception of the durability and strength of the family unit was measured using the FHI (McCubbin et al. 1996). The 20-item index comprises of three subscales: Commitment, Challenge, and Control which measure a family’s sense of dependability (e.g., “While we don’t always agree, we can count on each other to stand by us in times of need”); ability to be active and try new things (e.g., “We tend to do the same thing over and over, it’s boring”) and; the sense of control a family perceives to have over their life (e.g., “Trouble results from mistakes we make”), respectively. Answers were rated on a 5-point Likert scale (0 = false, 1 = mostly false, 2 = mostly true, 3 = true, 0 = not applicable). Items were reverse coded and a total score for each subscale was computed, with higher scores indicating greater hardiness. Adequate internal reliability has been previously established (Cronbach’s alphas ranging from 0.65 to 0.82; Greeff and van der Walt 2010). Good internal consistency was obtained in the present study for both the Commitment (Cronbach’s alpha = 0.76 and 0.84) and Challenge (Cronbach’s alpha = 0.80 and 0.76) subscales. Unacceptable internal consistency was obtained in the present study for the Control subscale (Cronbach’s alpha = 0.31 and 0.53) due to inaccurate interpretation of reverse scored items. This subscale was therefore excluded from subsequent analyses and the total score of the FHI.

Family Environment Scale (FES)

The Family Relationship Index of the FES was used to assess family characteristics relating to social and environmental domains, specifically the level of cohesion, expression, and conflict within the family unit (Moos and Moos 1986). The 27 items are divided among three subscales which assess the support and sense of togetherness between family members (e.g., “We put a lot of energy into what we do at home”); the extent to which family members express their thoughts and feelings (e.g., “Family members often feel like keeping their feelings to themselves”) and; the expression of negative emotions towards members of the family unit (e.g., “Family members sometimes get so angry they throw things”). Items were rated in a ‘true’ or ‘false’ response format and coded and summed to create a raw score. Subscale totals were then converted into standard scores. Good internal consistency has been previously established (Cronbach’s alphas ranging from 0.69 to 0.81; Manning et al. 2011; Moos and Moos 1986). In the present study, good internal consistency was obtained for both the Cohesion (Cronbach’s alpha = 0.75 and 0.72) and Conflict (Cronbach’s alpha = 0.74 and 0.78) subscales of the FES. Adequate internal consistency was obtained for the Expression subscale (Cronbach’s alpha = 0.64 and 0.61).

Dyadic Adjustment Scale (DAS)

The overall quality of adjustment in marital relationships was measured using the DAS (Spanier 1976). The 32-item scale comprises of four subscales capturing satisfaction, consensus, cohesion, and affectional expression in the dyadic relationship. The majority of items were measured using a 6-point Likert-type scale assessing the extent of agreement/disagreement with the statement, while two items represented a dichotomous format. Sample items included: “How often do you or your mate leave the house after a fight?” and “Do you kiss your mate?” Subscales were added to compute a total dyadic adjustment score, with higher scores reflecting greater adjustment. High internal consistency (Cronbach’s alpha = 0.96) and good construct validity (r = 0.86; Spanier 1976) has been previously established.

Family Support Scale (FSS)

The type and perceived helpfulness of social support available to families raising a child with ASD was assessed using the FSS (Dunst et al. 2007). The 19-item questionnaire was used to capture both the perceived helpfulness of formal (professional services) and informal (kinship, spouse/partner, friend, programs/organisations) support available to the family during the past 3–6 months. Sample items included: “How helpful have (friends) been to you in terms of raising your child(ren)?” Items were measured on a 6-point Likert scale (0 = not available to 5 = extremely helpful), with higher scores indicating greater perceived support. Items were summed to compute total Informal Support and Formal Support scores. Scales have demonstrated good internal reliability (Cronbach’s alpha = 0.72; Hall and Graff 2011). Good internal consistency was obtained in the present study for the Informal Support scale (Cronbach’s alpha = 0.67 and 0.87). Adequate reliability was obtained for the Formal Support scale (Cronbach’s alpha = 0.55 and 0.70).

Appraisals (cC)

The constructs of positive appraisals and sense of coherence (SOC) are emerging in the ASD literature with evidence of positive associations between these variables and parental outcomes (e.g., Manning et al. 2011; Pozo et al. 2013). However, this research along with investigations of the Double ABCX model has failed to examine the influence of family appraisals on parental outcomes and measures of adaptation. This study extended these findings by including a measure of ‘family’ SOC which has been associated with an increase in parental wellbeing in the wider disability literature.

Sense of Family Coherence Scale (FSOC)

The family’s perceptions of and feelings as a family member were measured using the FSOC scale (Sagy 1998). The 12-items were rated with a 7-point Likert scale representing the degree to which the individual endorsed each statement. Sample items included: “To what extent do you have the feeling that you can influence what happens in your family?” and “Do you have the feeling that you are being treated unfairly by your family?” Items were summed to compute a total score with higher scores indicating greater FSOC. Internal reliability on this scale is reported to be high (Cronbach’s alpha = 0.88; Sagy 1998). Very good internal consistency was obtained in the present study (Cronbach’s alpha = 0.93 and 0.85).

Coping (BC)

Coping is a variable that has received much attention in the ASD literature. However, mixed findings have been obtained regarding the most beneficial strategies available to these families. In line with the aims of this study, to investigate family-related variables within the Double ABCX model, a family-oriented measure of coping strategies available to families during times of stress was chosen.

Family Crisis Oriented Personal Evaluations Scales (F-COPES)

The F-COPES contains 30 items used to assess the degree to which families employ different coping strategies in relation to hardships (McCubbin et al. 1981). It comprises five subscales that capture different aspects of coping including, acquiring social support, mobilising to acquire and accept help, reframing, passive appraisal, and seeking spiritual support. Items were rated on a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree). Sample items included: “Sharing our difficulties with relatives” and “Watching television”. Items were summed to calculate a total score, with higher scores indicating better coping. Good internal consistency has been reported (Cronbach’s alphas ranging from 0.77 to 0.86; Manning et al. 2011; McCubbin et al. 1981). Good internal consistency was obtained in the present study (Cronbach’s alpha = 0.83 and 0.93).

Family Adaptation (xX)

Family adaptation has been conceptualised by a variety of variables including, but not limited to, stress, depression, anxiety, marital satisfaction, and mental health. Such variables have been investigated at individual, parental, and family levels. However, few studies have investigated both positive and negative aspects of family adaptation within the Double ABCX model (i.e., Manning et al. 2011; Pozo et al. 2013). This study aimed to extend previous investigations of the Double ABCX model to compare parental reports of stress and FQoL in an attempt to further understand the process of adaptation in these families.

Parenting Stress Index-Short Form (PSI-SF)

The amount of stress experienced by parents as a result of parenting factors was measured by the 12-item Parental Distress subscale of the PSI-SF (Abidin 1995). Answers ranged on a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree) and were summed to obtain a total stress score, with higher scores representing greater stress. Sample items included: “I feel trapped by my responsibilities as a parent” and “I don’t enjoy things as I used to”. Good validity, reliability and internal consistency have been previously established (Cronbach’s alphas ranging from 0.87 to 0.92; Abidin 1995; Kayfitz et al. 2010; Manning et al. 2011). Good internal consistency was obtained for the Parenting Distress subscale in the present study (Cronbach’s alpha = 0.86 and 0.88).

Family Quality of Life Survey (FQOL)

The FQOL survey is a 25-item questionnaire, which measures the quality of life in families of individuals with disabilities (Hoffman et al. 2006). The questionnaire assessed the degree of satisfaction with family interaction, parenting, emotional wellbeing, physical/material wellbeing, and disability-related support in families raising a child with ASD. Answers ranged on a 5-point Likert scale (1 = very dissatisfied to 5 = very satisfied) and were summed to create a total score. Higher scores indicated greater satisfaction in aspects of family life. Sample items included: “My family members show that they love and care for each other” and “My family has the support we need to relieve stress”. Good internal reliability and convergent validity is reported for the FQoL survey (Cronbach’s alphas ranging from 0.88 to 0.95; Pozo et al. 2013). Very good internal consistency was obtained in the present study (Cronbach’s alpha = 0.93 and 0.94).