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Keywords:

  • autistic spectrum disorder;
  • information;
  • involvement;
  • parent;
  • stress;
  • support

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References

Background  The study explores the experiences of parents of individuals with autistic spectrum disorders (ASDs), and examines the influences of parent gender and child age on perceived stress, stress and coping, child-rearing involvement, support and information/education accessed.

Methods and Materials  Questionnaires assessed general perceived stress, involvement, stress and coping related to caregiving, social support, and amount of information/education accessed in 23 mothers and 19 fathers of 3- to 18-year-old individuals with ASDs.

Results  When compared with fathers, mothers were significantly more stressed, more involved, and reported higher levels of stress and coping related to caregiving. Differences were found according to child age, regarding helpfulness of support and access to information/education. Parent gender and child age moderated correlations between some variables. Content analyses identified factors contributing to parental stress and its alleviation.

Conclusions  The positive relationships between the amount of information accessed and the quality of support received by parents, and between parental stress and involvement vary according to the life stage of the child. Mothers experienced a greater caregiving burden when compared with fathers.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References

According to Randall & Parker (1999), of all childhood developmental disabilities, autistic spectrum disorders (ASDs) give rise to one of the most complex network of family stressors. A substantial amount of research on stress and parents of children with ASDs has found that these parents experience higher levels of stress than both the general population and parents of children with other developmental disabilities (McKinney & Peterson 1987; Weiss 2002). Providing effective and relevant support to these parents is critical; thus, factors that influence their mental health and stress levels must be explored.

According to Lazarus & Folkman (1984), parents’ coping strategies are related to the resources to which they have access. Without these resources, parents are vulnerable and more likely to be stressed. Social support is an important moderator of stress for parents of children with ASDs, as support can help parents cope by meeting their emotional, practical and informational needs (Beresford 1994). Schilling et al. (1984) identified two sources of social support: informal (e.g. family) and formal (e.g. health professionals). The perceived helpfulness of support has been shown to be an important aspect of its mitigating affect (Henderson & Vandenberg 1992). A study by Hastings & Johnson (2001) explored the issues of stress, coping and support in 141 UK parents conducting intensive home-based behavioural intervention with their children with autism. Although no comparative difference was found in the level of reported stress between parents utilizing the programme and other parents of children with autism, the research did find that adaptive coping strategies, informal social support and beliefs about the efficacy of the intervention were associated with lower levels of stress. This illustrates the importance of psychological moderators on parental stress. Unfortunately, parental pessimism where there was a high degree of autism symptomatology proved to be more resistant to the moderating effect of family coping strategies. However, belief in efficacy of the intervention pointed to lower levels of pessimism even in parents of children with more severe presentation of symptoms.

It is also essential to recognize that parents’ support needs are fluid, as certain types and sources may be more helpful at different life stages (Todd & Shearn 1996; White & Hastings 2004). Timing is critical: if support is premature, it may undermine the esteem of the recipient and if overdue, it may be inadequate in facilitating coping (Pierce et al. 1996a; b). Additionally, certain personality traits may be more conducive to adaptive coping than others (Trigonaki 2002; Weiss 2002).

Gender differences in coping ability have been examined in the existing literature. For example, Coultard (2001) identified a tendency for social support systems to be based around the mother rather than the father. In a study involving parents of children with high-functioning autism, Gray (2003) found a remarkable difference in the personal impact that mothers and fathers experienced of their child’s disability. Mothers were found to be directly and considerably affected by their child’s autism while fathers claimed the effect to be indirect, e.g. experiencing stress through their partners. Furthermore, mothers were more burdened with domestic responsibilities, whereas fathers focused on economic provision. Konstantareas & Homaditis (1992) found that mothers reported greater involvement than fathers across samples of parents of normal children, children with intellectual delay, and children with ASDs. Furthermore, having a child with autism was the best predictor of poor father involvement, highlighting the aggravating effect of autism to the marital relationship. Similar gender disparities have been noted for stress levels, where mothers have scored consistently higher than fathers (Moes et al. 1992; Sharpely & Bitsika 1997).

Although beneficial effects of social support are well documented, parents may have difficulty in navigating support networks in order to reap the benefits. Making information readily available to parents could impart a sense of empowerment through the provision of coping tools. The seeking out of information has been noted as an element of constructive problem solving in the process of acceptance and adjustment (Hopson 1986). Pain (1999) found that information helped parents of children with disabilities to adjust emotionally, to access services and benefits and to improve overall management of their child’s behaviour, while lack of information and support may leave them with a sense of hopelessness (Randall & Parker 1999).

In summary, past research highlights parent gender, life stage, involvement, social support and informational resources as important contributing factors to the needs of parents of individuals with ASDs and their stress level. Disparities in involvement between mothers and fathers, and deficits in social and informational assistance may have considerable implications for families. Unfortunately, the majority of research has focused on parents of young children and neglected the experiences of fathers. Research that includes both mothers and fathers, and a wider age group of individuals with ASDs is warranted in order to provide improved informational resources and support services that meet the needs of both parents and that are appropriate to life stage. The present research examined whether parent gender and child age influenced the levels of general perceived stress, stress and coping related to caregiving, child-rearing involvement, perceived helpfulness of support, and amount of information/education accessed around ASDs. In addition, the salient factors contributing to stress and supports that are most helpful in stress relief were elicited.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References

Design

A questionnaire was constructed to include measures of parents’ perceived levels of general stress, involvement, stress and coping specific to caring for an individual with an ASD, helpfulness of support networks, and amount of information/education accessed around ASDs.

Participants

Sample

Parents of children with ASDs throughout Ireland were recruited using convenience sampling via four routes: pre-schools, primary and secondary schools which either specifically specialized in educating children with ASDs or offered special classes within a mainstream school, a support group for parents of children with ASDs, a carers’ association, and a parent who agreed to disseminate questionnaires to other parents of children with ASDs.

Respondents

Forty-two parents (14% of 300 questionnaires disseminated) of 24 children returned the questionnaires, 23 mothers and 19 fathers. The mean ages of mothers and fathers were 40.9 years (SD = 5.7) and 44.9 years (SD = 7.2), respectively. The mean age of children was 9.3 years (SD = 4.5). Twenty-two of the children were males and two were females. Ten children attended a special class within a mainstream primary school, nine children attended a special ASD class within a special school, three attended a mainstream primary school and two attended schools that fell under other and were unspecified.

Materials

The study questionnaire comprised a number of scales. The demographic questionnaire gathered information on parents’ ages, county of residence, age and gender of their child, and type of school attended by the child. The Perceived Stress Scale-10 item (PSS-10; Cohen et al. 1983) measures the extent to which respondents find their lives unpredictable, uncontrollable and overloaded in general. The Involvement and Responsibility Questionnaire (IRQ) was adapted from a self-report measure used by Konstantareas & Homaditis (1992). Six areas including dressing, feeding/meals, bathing, playing/recreation, teaching/education and bedtime routines were used as a basis for 10 questions on parental responsibilities. Parents were also given the opportunity to mention other activities not queried.

The Family Stress and Coping Questionnaire (FSCQ-A) was adapted from the Family Stress and Coping Interview (FSCI; Minnes & Nachshen 2003), which measures perceived stress and coping related to caregiving in families of individuals with developmental disorders across the lifespan. Specifically, the FSCQ-A elicited responses from parents regarding their level of perceived stress in the following areas: (1) the diagnosis of their child’s ASD, (2) the causes of ASD, (3) explaining ASD to family/friends/community, (4) interacting with family/friends/community, (5) dealing with health professionals/health board/teachers/education system, (6) creating friendship/leisure opportunities for their child, (7) deciding on the best level of integration for their child, (8) meeting the needs of their other children, (9) meeting their own personal needs, (10) meeting the needs of their partner, (11) maintaining their own personal friendships, (12) dealing with their child’s sexuality, (13) concerns about present/future work/employment for their child, (14) concerns about present/future long-term accommodation for their child, (15) planning wills/trusts/guardianships, (16) planning emotional and social support for their child, (17) planning assistance with care, (18) attaining respite care, and (19) dealing with financial issues. With permission of the authors, 22 of the 26 items on the FSCI schedule were converted to questionnaire format using a 4-point Likert scale, with responses ranging from 0 (not stressful) to 3 (extremely stressful). Open-ended questions requested parents to list the top three sources that cause them most stress at present.

The Support Questionnaire (SQ) was developed to assess the helpfulness of informal and formal sources of support to parents. Eleven sources of informal support and 11 sources of formal support, as well as the option for other, were presented on two tables. An open-ended question requested parents to list the top three sources of support that facilitate the greatest relief from stress. The Information and Education Questionnaire (IEQ) measured the amount of information and education parents had received regarding ASDs, and where it was obtained. Parents were presented with 11 areas of concern and asked to rate the amount of information/education they received from 15 given sources.

Procedure

Contacting participants

Hundred and fifty pairs of compilation questionnaires (one for each parent) were delivered to schools and other participants/organizations with an information sheet providing an explanation of the study and requesting the dissemination of the questionnaires to parents of individuals with ASDs. Parents’ envelopes contained the compilation questionnaire, an information sheet and a stamped and self-addressed envelope. Parents were informed that participation was purely voluntary, confidential and would take approximately 20 min.

Participants were informed that it would be preferable if both parents could respond, but that a response from either parent would be valued. Parents were requested to fill out the questionnaires independently. Specific instructions were presented on how to respond to each part of the questionnaire.

Data analysis

As a result of the relatively small sample size, non-parametric statistical tests were selected for the analyses. Kruskal–Wallis tests were used to explore the impact of parent gender (mother and father) and of child age (four groups: 3–6 years, 7–10 years, 11–14 years and 15–18 years) on general perceived stress (PSS-10), involvement (IRQ), stress and coping related to caregiving (FSCQ-A), helpfulness of support (SQ), and information/education accessed (IEQ). Mann–Whitney U-tests were utilized for post hoc comparisons between child age groups. Data were transformed in order to reduce the effect of outliers. The relationships between total scores on the PSS-10, IRQ, FSCQ-A, SQ and IEQ were investigated using Spearman’s rank order correlation. Correlations were subsequently examined separately according to gender and child age. Content analyses were used to categorize and rank responses to open-ended questions.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References

Descriptive analysis

Each of the measures demonstrated satisfactory levels of internal consistency. Mean scores for the overall sample indicated moderately low levels of general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A), moderately high levels of involvement (IRQ), less than satisfactory quality of support (SQ), and considerably low levels of access to information/education (IEQ). See Table 1 for mean scores, ranges and internal consistency for each of the measures employed.

Table 1.   Mean (SD), range and internal reliability coefficients (Cronbach’s alpha 1951) for each measure
MeasureM (SD)RangeInternal consistency
Perceived stress (PSS-10)17.7 (6.7)3–29α = 0.89
Involvement (IRQ)25.6 (8.1)10.4–39.7α = 0.84
Family stress (FSCQ-A)25.3 (6.7)11–44α = 0.72
Support (SQ)27.7 (8.9)11–52α = 0.77
Information/education (IEQ)70.5 (36.4)22–144α = 0.91

Between-groups comparisons

A number of statistically significant effects for gender were found (see Table 2). Mothers reported significantly higher levels of general perceived stress (PSS-10) than fathers (Kruskal–Wallis test, χ2 = 9.243, d.f. 1, P = 0.002). Similarly, mothers reported significantly higher levels of stress and coping related to caregiving (FSCQ-A) than fathers (Kruskal–Wallis test, χ2 = 13.872, d.f. 1, P < 0.001). In addition, mothers reported significantly higher levels of involvement (IRQ) than fathers (Kruskal–Wallis test, χ2 = 17.394, d.f. 1, P < 0.001).

Table 2.   Mean (SD) for each measure according to gender of parent
VariableFathers M (SD)Mothers M (SD)
  1. *P < 0.005.

Perceived stress (PSS-10)14.4 (5.3)20.5 (6.6)*
Stress related to caregiving (FSCQ-A)20.8 (5.9)29.6 (8.1)*
Involvement (IRQ)20.7 (5.2)29.1 (5.2)*
Support (SQ)27.6 (10.8)27.8 (7.3)
Information/education (IEQ)75.1 (42.2)66.6 (31.3)

Statistically significant effects for child age were found on measures of support (Kruskal–Wallis test, χ2 = 8.492, d.f. 3, P = 0.037) and information/education (Kruskal–Wallis test, χ2 = 7.813, d.f. 3, P = 0.05). Post hoc subgroup comparisons showed significant differences between measures of support (SQ) for the child age groups of 3–6 years and 11–14 years, and between 11–14 years and 15–18 years, where parents of 11–14 year olds reported higher levels of support than both the parents of 3–6 year olds (Mann–Whitney U-test, z = −2.189, P = 0.027) and the parents of 15–18 year olds (Mann–Whitney U-test, z = −2.327, P = 0.017). Regarding information/education (IEQ), significant differences were found between the child age groups of 3–6 years and 15–18 years, and between 11–14 years and 15–18 years, where parents of adolescents aged 15–18 years reported receiving less information/education than both the parents of 3–6 year olds (Mann–Whitney U-test, z = −1.978, P = 0.046) and the parents of 11–14 year olds (Mann–Whitney U-test, z = −2.790, P = 0.004).

Content analyses

Content analyses resulted in the formation of 12 categories for the top three issues that cause the most stress (see Table 3) and 11 categories for the top three forms of support that facilitate the greatest relief from stress (Table 4). Of note, the most frequent sources of stress were inappropriate and unpredictable behaviour, and issues relating to education and the future. Support from schools and/or school services/staff were rated as providing the greatest relief from stress.

Table 3.   Top sources of stress reported by parents
RankSources of stressTotal score
 1Inappropriate and unpredictable behaviour40
 2The future30
 3Education and learning26
 4Personal constraints21
 5Child’s friendships/interaction w/other children19
 6Meeting needs of other family members18
 7Lack of/delayed basic skills14
 8Social aspects12
 9Attaining support & services/speech & language/dealing with sexuality (equally ranked)7
10Disruption of home life & environment/diet/understanding child’s needs (equally ranked)6
11Finance5
12Transport3
Table 4.   Top facilitators of stress relief reported by parents
RankFacilitator of stress reliefTotal score
 1School and/or school staff and services71
 2Respite services31
 3Family29
 4Spouse23
 5Home help/home tuition15
 6Health board/health workers and services14
 7Support groups/other parents10
 8Friends6
 9Other children5
10Social life/recreation5
11Autism society2

Relationships between measures

The relationships between the measures in the overall sample and according to parent gender are presented in Table 5. There was a strong significant positive correlation between the measures of general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A) in the overall sample. Within the females, the pattern was broadly similar with the exception of a strong negative correlation between stress and coping related to caregiving (FSCQ-A) and support (SQ). For males, the only significant correlation was between support (SQ) and information/education (IEQ).

Table 5.   Spearman’s rho correlations between measures for overall sample and for fathers and mothers
Relationship betweenOverall sampleFathers (n = 19)Mothers (n = 23)
  1. *P < 0.001; **P < 0.025.

PSS-10 and FSCQ-A0.68*0.460.54*
PSS-10 and involvement (IRQ)0.49**0.130.44**
PSS-10 and support (SQ)−0.26−0.26−0.37
PSS-10 and information (IEQ)−0.050.09−0.07
FSCQ-A and involvement (IRQ)0.49**0.210.16
FSCQ-A and support (SQ)−0.150.25−0.54**
FSCQ-A and information (IEQ)−0.080.020.02
Support (SQ) and involvement (IRQ)0.01−0.120.03
Support (SQ) and information (IEQ)0.56**0.49**0.48**
Involvement (IRQ) and information (IEQ)0.130.090.34

The correlations between the measures for the different age categories are presented in Table 6. Examination of the correlations among variables for the 3- to 6-year-old children showed significant correlations between general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A). In addition, stress and coping related to caregiving (FSCQ-A) was positively correlated with levels of involvement (IRQ). Among the 11–14 year olds, only the correlation between general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A) was significant. For the oldest age category, stress and coping related to caregiving (FSCQ-A) was positively correlated with levels of involvement (IRQ).

Table 6.   Spearman’s rho correlations between measures according to child age categories
Relationship between3–6 years (n = 14)7–10 years (n = 9)11–14 years (n = 12)15–18 years (n = 7)
  1. *P < 0.05; **P < 0.005; ***P < 0.001.

PSS-10 and involvement (IRQ)0.580.500.590.78
PSS-10 and FSCQ-A0.79***0.230.79**0.75
PSS-10 and support (SQ)−0.110.03−0.39−0.56
PSS-10 and information (IEQ)0.000.35−0.31−0.25
FSCQ-A and involvement (IRQ)0.64*0.490.620.93**
FSCQ-A and support (SQ)−0.18−0.23−0.140.00
FSCQ-A and information (IEQ)−0.080.29−0.17−0.02
Support (SQ) and involvement (IRQ)0.41−0.17−0.180.00
Support (SQ) and information (IEQ)0.230.400.480.45
Involvement (IRQ) and information (IEQ)0.010.220.02−0.02

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References

Although past research has found parents of individuals with ASDs to be under considerable stress (McKinney & Peterson 1987; Randall & Parker 1999; Weiss 2002), mean scores for the overall sample point to relatively low levels of general perceived stress and stress and coping related to caregiving, findings that are inconsistent with past literature. In the absence of data from parents of ‘normally’ developing children, however, it is not possible to tell if these parents of individuals with ASDs would have been significantly more stressed. Nevertheless, it remains important to recognize the discrepancies that exist between mothers and fathers regarding these variables.

Statistically significant differences were found between mothers and fathers on measures of general perceived stress (PSS-10), stress and coping related to caregiving (FSCQ-A) and involvement (IRQ). Mothers scored consistently higher than fathers on all three measures. These findings are supported by the literature, which found disparities between mothers and fathers for both stress (Sharpely & Bitsika 1997; Gray 2003) and involvement (Konstantareas & Homaditis 1992; Gray 2003). Perhaps, mothers and fathers differ in need for external coping resources as well as utilizing different internal means of coping.

Statistically significant differences were also found between parents according to child age regarding helpfulness of support (SQ) and access to information/education (IEQ). Parents of children aged 11–14 years reported receiving better quality of support than parents of children aged 3–6 years and 15–18 years. Significant differences regarding access to information/education found that parents of 15–18 year olds received significantly lower amounts of information/education than parents of 3–6 year olds and 11–14 year olds. These differences highlight possible intervals where parents may experience a severance in service provision or where resources have become obsolete because of their changing needs. The findings may also indicate a particular vulnerability in parents of adolescents aged 15–18 years, who reported significantly lower levels in both helpfulness of support and amount of information/education accessed.

A possible relationship is suggested by the concurrence of disparities in involvement (IRQ), general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A). This premise is supported by a strong positive statistically significant correlation between general perceived stress (PSS-10) and involvement (IRQ), and a positive medium correlation between stress and coping related to caregiving (FSCQ-A) and involvement (IRQ). It is possible that greater involvement by mothers exacerbates their stress level. Gray’s (2003) study found a similar relationship between mothers’ emotional well-being and the burden of domestic work. Perhaps, the perceived inequality of child-rearing responsibility is worsened by difficult temperament, which is characteristic to many children and adolescents with ASDs, as illustrated by Gray’s (2003) findings with fathers. As a result of women’s culturally defined roles, mothers may be less able to escape the domestic sphere, as has been documented with fathers (Gray 2003), and therefore may perceive a greater sense of inequality and injustice, contributing to greater stress. The differential effect of involvement on mothers and fathers is illustrated by correlational analyses split according to gender, where general perceived stress (PSS-10) and involvement (IRQ) resulted in a significant positive relationship for mothers, with no corresponding relationship for fathers. Significant differences were not noted for any of the measures when comparing by child age.

A statistically significant strong positive relationship was found between support (SQ) and information/education (IEQ). This is understandable, as these areas have a reciprocal relationship, where a greater support network may dispose parents to more information (Beresford 1994) and more information may educate parents on how to access support (Pain 1999). No statistically significant differences were found concerning parent gender or child age for these variables.

Concerning general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A), a statistically significant strong positive relationship was found. According to Lessenberry & Rehfeldt (2004), ‘by assessing how stress is being perceived, the effect of [those] resources are measured indirectly’, (p. 237). They also suggest that the PSS-10 might be an appropriate measure to identify parents in need of effective coping resources. A statistically significant strong negative relationship was identified for mothers, where low levels of support (SQ) were associated with increased scores on the FSCQ-A, illustrating the relationship between support and stress and coping related to caregiving. A significant relationship was not found for fathers, however. This may help to explain Coultard’s (2001) finding of support systems based around the mother. It also illustrates the possible disparate needs for coping resources for mothers and fathers. As a result of the fact that mothers experience the impact of their child’s disability more directly (Gray 2003), a greater network of support might be required to ameliorate stress levels.

Results of correlations according to child age revealed no relationship for parents of children aged 7–10 years. No relationship was found between general perceived stress (PSS-10) and stress and coping related to caregiving (FSCQ-A) for parents of adolescents aged 15–18 years. These changing patterns support past research showing parents’ needs and experiences are fluid over the lifespan (Todd & Shearn 1996; White & Hastings 2004). An interesting relationship can be noted in the particularly strong positive relationship between involvement (IRQ) and stress and coping related to caregiving (FSCQ-A; rho = 0.93) in parents of 15–18 years old, perhaps suggesting that parents may find it hard to manage a child approaching adulthood. As mentioned previously, these parents also reported statistically lower quality of support and less access to information/education than parents in a number of other child age groups. In combination, these findings may call attention to a specific group of parents whose service and support needs are not being met.

Top sources of stress reported by parents reveal that ‘challenging and anti-social behaviours’, ‘concern for the future’, ‘education’, ‘attaining support and services’, and ‘understanding their child’s needs’ are top worries. Information and education could be useful in helping parents to deal with these issues. Regarding top factors that relieve parents’ stress, it is clear that both informal and formal supports are important, with ‘schools and/or school services/staff’ ranking the highest. Although this support is helpful, it may be an area of concern to parents of older adolescents who will soon lose out on this valued resource. This may be indicative of parents who reported concern for the future, where transition to adult services may be ambiguous.

Limitations

The small sample size may have undermined the ability to generalize the findings of this study. Poor response rate could be due to a number of factors, including methodological issues and the nature of the target population. Method of recruitment meant that the majority of questionnaires were firstly disseminated to a third party (e.g. a school principal) and not directly to parents, making it difficult to ascertain the amount of questionnaires that were successfully delivered. In addition, the length of the questionnaire and time taken for completion may have proved challenging to parents, especially to those under strain. It is therefore conceivable that parents who were experiencing more stress may have elected to not participate in the study. Poor response rate could also be associated with the fact that parents of individuals with ASDs are a prime focus for current research and may be overburdened with requests for participation. These methodological challenges should be taken into account when planning future research with this population.

The self-selecting nature of the study may also have compromised the representativeness of the sample. It is possible that those who volunteer for research may also be more proactive. In the case of this population, more proactive parents may be more likely to seek out support and services and, in turn, experience lower levels of stress. This may be particularly true for parents solicited through support groups and carers’ associations. These factors may have contributed an underestimation of the level of stress experienced by these parents, particularly as levels reported by the present sample were more moderate than those reported in other studies (Sloper & Turner 1993). Despite this, the present study succeeds at illustrating a number of important issues by highlighting the differences between the experiences of mothers and fathers, the changing relationship between stress and involvement according to child age, and that the quality of support and information/education provision is subject to change as children enter different stages of development.

In addition to the limitations of the present study, a number of factors were not explored and future research would benefit from their inclusion. Degree of autism was not accounted for, but is an important factor to consider in this context, given that previous research has found parents’ mental health outcomes to be poorer and more resistant to the effects of social support when their children’s symptoms are more severe (Hastings & Johnson 2001). Additionally, information on marital status was not elicited from participants, but in retrospect would have been an interesting variable to explore, as other studies have found single mothers of children with intellectual disabilities to have poorer well-being than co-habiting mothers (Eisenhower & Blacher 2006). Further investigation into both experiences of single mothers and single fathers of children with ASDs would enhance the existing body of research and may serve to highlight additional areas of need. Moreover, the present study did not account for participation in behavioural intervention programmes, a variable which future studies should consider. Existing literature points to mixed outcomes regarding the impact of participation in programmes on parent stress levels and mental well-being (Baker et al. 1991; Bristol et al. 1993; Brinker et al. 1994; Hastings & Johnson 2001) but more recent research in this area is limited, and therefore further investigation is warranted.

Conclusions and recommendations

The link between support and information demonstrates that providing parents with information may improve their access to support services, hence improving their ability to cope and effectively reduce stress levels. Results show that parents’ needs and concerns may be subject to change as their children enter different stages of development. In light of this, services should be user-led and parents’ appraisals of the efficacy and availability of resources when planning for service provision should be taken into account. Disparities in the helpfulness of support and access to information/education between parents of different child age groups may highlight fragmentation in services and areas of neglect. Information and support services should be coordinated in order to ease families through changes in their child’s development and tailor services accordingly. Further research specific to the needs of parents of different child age groups would be useful in informing service providers. Providing parent training programmes on how to access and best utilize resources may help parents to overcome possible discontinuity in services in the meantime.

The link between involvement and stress, and the significant differences noted for fathers and mothers pose a considerable problem to families caring for individuals with ASDs. Interventions aimed at addressing the imbalance of caregiving burden could be instrumental in improving mental health outcomes for mothers. Psycho-educational programmes involving both parents could help in re-shaping attitudes, quality of spousal support and caregiving roles within the family. Furthermore, decreasing parental stress could have positive implications for child behaviour management, one of the top areas of concern reported by parents, as Rhodes (2003) found behavioural programmes for children with severe presentation to be more effective when parental stress had been dealt with prior to intervention.

This is a small-scale study and as a result may underestimate the level of stress experienced in this population. The findings should be interpreted more generally as offering some insight into the different experiences of mothers and fathers and of parents of children in different age groups. Future research should continue to investigate the areas of need made evident by the findings with the hope of improving support and service provision.

Correspondence

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References

Any correspondence should be directed to Erin Tehee, Mercer’s Institute, Top Floor Hospital 4, St. James’s Hospital, Dublin 8, Ireland (e-mail: erin.tehee@gmail.com).

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Correspondence
  8. References
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