583191 research-article2015

AUT0010.1177/1362361315583191AutismPozo and Sarriá

Special Issue Article

Still stressed but feeling better: Well-being in autism spectrum disorder families as children become adults

Autism 1­–9 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1362361315583191 aut.sagepub.com

Pilar Pozo and Encarnación Sarriá

Abstract The transition to adulthood and adulthood itself have been identified as times of stress for parents of individuals with autism spectrum disorder. Longitudinal studies, however, show improvements in the well-being of mothers of adolescents and young adults with autism spectrum disorder. This article presents a cross-sectional study of 102 Spanish parents (51 mothers and 51 fathers) of 102 individuals with autism spectrum disorder. The aim was to examine parental wellbeing (evaluated based on stress, anxiety, depression and psychological well-being) in three groups of parents of adults, adolescents and young children with autism spectrum disorder. In addition, the relationships between parental well-being and the characteristics of their children, social support, parental age and sense of coherence were analysed. The results showed that although parental stress and psychological well-being levels were similar across the groups, depression and anxiety were lower in parents of adolescents or adults compared with parents of young children. Different factors predicted different measures of parental well-being, but sense of coherence emerged as the main predictive factor for all parental well-being measures. These findings are discussed in relation to parental adaptation over the lifespan and the implications for interventions in autism spectrum disorder families. Keywords anxiety, autism spectrum disorders, behaviour problems, cross-sectional study, depression, parental adaptation, psychological well-being, stress, sense of coherence

Parents of individuals with autism spectrum disorder (ASD) face multiple challenges and demands that can compromise their well-being. In particular, they experience higher levels of stress, anxiety and depression than parents of typically developing children or children with other disabilities (Baker-Ericzén et al., 2005; Bitsika and Sharpley, 2004; Carter et al., 2009; Hastings and Brown, 2002; Olsson and Hwang, 2001; Pisula, 2007). Severity of autism and behavioural problems in children are strong predictors of stress and emotional distress in mothers of children with ASD (Abbeduto et al., 2004; Ekas and Whitman, 2010; Feldman et al., 2000; Hastings, 2003; Hayes and Watson, 2013; Herring et al., 2006; Tomanik et al., 2004). Moreover, although the severity of autism symptoms and behaviour problems tends to decrease with age (Esbensen et al., 2009; Mawhood et al., 2000; Shattuck et al., 2007), these characteristics continue to present limitations in the lives of individuals with ASD and to affect the well-being of their parents (Blacher and McIntyre, 2006; Lounds et al., 2007). However, child characteristics of ASD children are not the only variables that influence the well-being of parents;

social support and psychological factors – such as coping strategies and the perception of the situation – also affect parental adaptation (Bristol, 1987; McStay et al., 2014; Pakenham et al., 2005; Pozo et al., 2014; Pozo and Sarriá, 2014a). In relation to social support, a larger social network is associated with improved maternal well-being from childhood to adulthood (Dyson, 1997; Sharpley et al., 1997; Smith et al., 2012b). Nevertheless, in the transition from junior to high school there is a significant reduction in the formal support available for families (Shattuck et al., 2011); informal support, too, declines over time (Gray, 2006; Pozo and Sarriá, 2014b). Multiple changes in the social context of ASD families and in parental roles are required in order to accommodate the challenges of

National University for Distance Education (UNED), Spain Corresponding author: Encarnación Sarriá, Facultad de Psicología, National University for Distance Education (UNED), C/ Juan del Rosal 10, Madrid 28040, Spain. Email: [email protected]

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adolescence or adulthood, and thus the transition to adulthood and adulthood itself are also times of stress for ASD families (Smith et al., 2010, 2012a). Various psychological factors, such as self-efficacy (Giallo et al., 2013; Hastings and Brown, 2002), hardiness (Ben-Zur et al., 2005) and sense of coherence (SOC) (Mak et al., 2007; Oelofsen and Richardson, 2006; Olsson and Hwang, 2002; Pozo and Sarriá, 2014b), have also been associated with parental well-being. In particular, the construct of ‘SOC’ consistently appears to be a strong predictor of well-being and a protective factor against stress, which reduces the impact of the disability on the family. This finding suggests that it is important to consider SOC as a psychological factor in analysing the adaptation of parents of individuals with ASD across the lifespan. The construct of SOC has been defined as a global orientation, an enduring attitude and a feeling of confidence that one’s own life events are comprehensible, meaningful and worthy of engagement and that one has the resources to cope with the demands of these events (Antonovsky, 1979, 1987). SOC may act as a general form of resilience to stress as well as a precursor in setting other cognitive processes in motion specific to the situation. SOC assesses how people view life and address stressful situations. It has three components: comprehensibility (a cognitive component that refers to the extent to which a person perceives a situation as ordered, consistent, structured and clear rather than as chaotic, unpredictable or inexplicable), manageability (an instrumental component that refers to the perception that one has adequate resources to meet the demands posed by the environment) and meaningfulness (an emotional component that refers to the subjective feeling that life makes sense and that some parts of one’s life are worthy of commitment and engagement). Longitudinal studies have shown that parental perception of the situation improves as their children with disabilities grow up (Bayat, 2007; Trute et al., 2007). Parents report that the initial experience of frustration evolves into personal growth and a new meaning of life (Kausar et al., 2003). Meanwhile, cumulative parenting experience can improve parents’ coping resources and adaptation skills and can therefore improve their sense of well-being (Ha et al., 2008). Parental maturation can have a positive influence on the sense of well-being (Charles and Piazza, 2009), and emotional well-being also improves with age as a result of the maturation of regulation strategies (Jorm et al., 2005). In the mid-life stage, parents of adolescents or young adults with ASD may have developed more mature emotional strategies to cope with their situation and may therefore experience an improvement in wellbeing or at least a decrease in emotional distress. A shortterm longitudinal study with middle-aged mothers of ASD adolescents showed a decrease in maternal anxiety over a period of 1.5 years, although there was no change in depressive symptoms (Lounds et al., 2007). A longitudinal

study by Barker et al. (2011), following the trajectories of emotional well-being of mothers of adolescents and adults with autism over 10 years, also found that anxiety improved while depressive symptoms remained stable over time. The apparently contradictory findings of pervasive stress in mothers of adolescents and adults with ASD and decreases in maternal emotional distress (anxiety) over time are actually not incompatible. In a population based investigation, Totsika et al. (2011) assessed both positive and negative mental health. They reported that although mothers of children with ASD had a greater incidence of emotional disorders compared with mothers of typically developing children or children with intellectual disabilities, there were no differences with respect to positive mental health. As Hastings and Taunt (2002) concluded, positive perceptions and experiences may occur in concert with negative or stressful experiences in families with children with disabilities. Taken together, these findings suggest that it is necessary to examine the changes that occur in parental adaptation across the lifespan by considering both negative and positive variables of adaptation and analysing multiple related factors. We present a cross-sectional study of Spanish parents of individuals with ASD. Differences in stress, emotional distress (anxiety, depression) and positive well-being (psychological well-being) were examined in three groups of parents with children at different life stages: primary school-age, adolescents and adults. The study also examined factors predicting well-being. Consistent with previous research, it was expected that the three groups would present some differences in parental well-being. More specifically, it was predicted that anxiety would be lower and psychological well-being would be higher in parents of adolescents and adults compared with parents of primary school-age children. No differences were predicted, however, in levels of parental depression and stress. It was also expected that both parental and child characteristics would be predictors of parental well-being.

Method Participants Participants included 102 Spanish parents (51 fathers, 51 mothers; mean age  =  46.6  years; standard deviation (SD) = 9.6 years, range = 30–78 years) of 102 individuals with ASD. They were divided into three groups: 46 parents of primary school-age children (mean age = 39.9 years; SD = 4.4 years); 30 parents of adolescents (M = 46.3 years; SD = 4.5 years) and 26 parents of adults (M = 59.0 years; SD = 8.6 years) (see Table 1 for details). The groups of parents were identical in gender (50% fathers, 50% mothers) and were similar in education level and family income. However, significant differences were

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Pozo and Sarriá Table 1.  Family demographics. Parental variables

Education level   Primary school   Secondary school   University grade Marital status   Married/stable couple  Divorced  Widowed Employment status  Unemployed  Employed  Retired Family Family composition   2 members   3–4 members   ⩾5 members Monthly family income   €2000

G1: Primary (n = 46)

G2: Adolescent (n = 30)

G3: Adult (n = 26)

%

%

%

22 26 52

17 37 46

31 27 42

98 2 –

97 3 –

77 8 15

28 72 –

27 70 13

23 50 27

– 83 17

– 73 27

15 70 15

18 78 4

13 77 10

– 88 12

found in parental age (F(2, 99) = 90.43, p  G3 G2–G3

0.40 3.33

0.672 0.040*

0.06

4.61

0.012*

0.09

G1–G2 G1 > G3 G2–G3 G1 > G2 G1–G3 G2–G3

2.51

0.087

p value (Bonferroni)   1.00 0.025* 0.14   0.358 0.042* 1.00 0.026* 0.066 1.00  

*p < 0.05.

multiple pairwise comparisons using Bonferroni adjustment. The predictive power of the study variables on stress, anxiety, depression and psychological well-being was examined using multiple regression analyses. Missing values were limited to specific items on the questionnaires and were less than 1% of responses. We applied average values derived from the existing values to fill in missing items.

Results Group comparisons MANOVA was used to test for group differences across three dimensions: children’s characteristics (autism severity, behaviour problems), parental predictors (social support, SOC) and parental well-being (stress, anxiety, depression, psychological well-being) (see Supplementary Table 1 for descriptive statistics). No significant group differences were found in parental predictor variables (social support, SOC), but Roy’s largest root test revealed significant group differences in both the characteristics of the children (Θ = 0.83, F(2, 99) = 4.09, p = 0.02; η2 = 0.07, power = 0.71) and parental well-being (Θ = 0.17, F(4, 97) = 1.89, p = 0.04; η2 = 0.10, power = 0.70). Effect sizes were small, suggesting that only 7% or 10% of the variance in these variables was explained by the age group. Separate one-way ANOVAs for each of these variables indicated significant age group differences in behaviour problems but not in autism severity. In relation to the parental well-being variables, there were no significant group differences for stress and psychological well-being, but there were significant differences for anxiety and depression (see Table 3). Multiple post hoc comparisons were conducted only with those variables that yielded significant group differences using the Dunn (Bonferroni) test for all possible pairwise contrasts. In relation to children’s behaviour problems, parents of adults reported significantly lower levels than parents of primary school-age children. In relation to parental

well-being, parents of primary school-age children reported significantly higher anxiety levels than parents of adults and higher depression levels than parents of adolescents.

Predictors of parental psychological adaptation Multiple regression analysis was conducted to investigate the best predictors of parental well-being in the full sample. Stepwise forward regression analyses were performed for each criterion variable (stress, anxiety, depression, psychological well-being) using age group (primary school, adolescent, adult), autism severity (CARS), behaviour problems, social support, parental age and SOC as predictor variables. Data were screened for violations of assumptions of linearity, normality, independence, homogeneity of variances and multicollinearity prior to analysis (see Table 4). We used the adjusted R2 index as an indicator of the percentage of variation in the dependent variable explained after adjusting for sample size and the number of predictors. The four models yielded large effect sizes (Cohen, 1992). The main predictor of parental stress levels was SOC, although behaviour problems and autism severity were also significant. Specifically, higher levels of SOC predicted lower levels of stress, whereas higher levels of behaviour problems and autism severity predicted higher levels of stress. The relevant predictors for both anxiety and depression were SOC and group membership, with higher SOC and older age group predicting lower levels of anxiety and depression. The model for psychological wellbeing included three significant predictors: SOC, parental age and group membership. Higher SOC and older age group predicted higher psychological well-being; higher parental age predicted lower psychological well-being.

Discussion The main aim of this study was to compare the well-being of parents of primary school-age children, adolescents and adults with ASD. In addition, we examined the extent to

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Table 4.  Regression analyses predicting stress, anxiety, depression and psychological well-being in total sample. Criterion variable/predictor variables

ΔR2

df

F

B

β

p value

Stress  SOC   Behaviour problems   Autism severity   Total adjusted R2 = 0.44

0.35 0.07 0.03

(1, 100) (1, 99) (1, 98)

53.50** 12.06** 6.02*

−0.36 0.27 0.44

−0.47 0.23 0.19

Still stressed but feeling better: Well-being in autism spectrum disorder families as children become adults.

The transition to adulthood and adulthood itself have been identified as times of stress for parents of individuals with autism spectrum disorder. Lon...
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