Youth with Tourette syndrome: Parental perceptions and experiences in the Australian context

Abstract

Objective

To enhance understandings of the impact of Tourette Syndrome (TS) on the parents of diagnosed youth. Specifically, the current study aimed to explore and identify the multidimensional stressors associated with parenting a child or adolescent with TS in the Australian context.

Method

As part of a larger qualitative and quantitative community‐based study, semi‐structured telephone interviews with 22 mothers of youth with TS were conducted regarding their experiences.

Results

The study identified parent, child, and contextual factors that contributed to parental stress, with many mirroring the experiences of parents of children with other chronic paediatric disorders. However, several TS‐specific factors also emerged from the data analysis, highlighting the unique difficulties encountered by parents of diagnosed youth. Serious deficits in professional expertise and services currently available for the TS community were also identified.

Conclusions

Findings indicate the generally unacknowledged challenge of parenting a child with TS, which equates with that experienced in the context of other serious chronic paediatric disorders. Results also indicate the need for psychosocial support for both child and parent, and greatly improved access to well‐informed mental health and educational services in the Australian context.

Key words:

• adolescent
• children
• paediatrics
• parents
• stress
• Tourette syndrome

Tourette Syndrome (TS) is a surprisingly prevalent (1:360 youth in the United States) (Bitsko et al., 2014) neurodevelopmental disorder characterised by the presence of multiple motor and vocal tics occurring for a period of at least one year (American Psychiatric Association, 2013; Leckman, Bloch, Scahill, & King, 2006). TS is greatly complicated by high rates of comorbidity (80–90%), particularly Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD) (Freeman et al., 2000).

The adverse impact of TS has been consistently demonstrated in quality of life studies, with diagnosed youth experiencing impaired physical, psychological, social, and academic functioning (Conelea et al., 2011; Cutler, Murphy, Gilmour, & Heyman, 2009; Eddy et al., 2011a, 2011b; Storch et al., 2007a, 2007b). The impact of TS on the parents of those diagnosed, however, has not been thoroughly examined. Given the increase in parental stress accompanying a wide range of chronic paediatric disorders (Wallander & Thompson, 1995), it is likely that parents of children with TS are at similar risk. The importance of understanding parental stress is illustrated by research linking it with adverse consequences for parents, children, and family functioning as well as exacerbation of the child's symptomatology (Streisand, Braniecki, Tercyak, & Kazak, 2001).

Theoretical models have been developed to predict the processes and variables associated with increased parental stress, the most popular being Abidin's ecological model (1992). This model describes an additive, multidimensional process that conceptualises child, parental, and contextual (situational or demographic life events) factors as mediators or moderators of parental stress. The stress in turn predicts negative parenting behaviour and consequent adverse child outcomes. Transactional models of stress and coping have also been tested to determine the impact of specific disorders on parental adjustment (Wallander & Thompson, 1995). These emphasise psychosocial factors such as parent–child interactions and family functioning, parental cognitions (such as stress appraisal and self‐efficacy) and coping responses, and demographic and illness parameters as mediators of maternal and child psychological adjustment to chronic disorder.

Studies employing these models have revealed factors contributing to parental stress that transcend underlying diagnosis as well as those that are disorder specific. Commonly experienced stressors identified in a metasynthesis of qualitative paediatric studies targeting a range of disorders (Coffey, 2006) include the perception of increased caregiver burden, omnipresent fear and anxiety, the need to adopt a proactive role in the management of the child's condition, the impact of critical times and events such as diagnosis, and social isolation (Coffey, 2006). It follows that parents of a child with TS may experience these same difficulties in addition to characteristics unique to TS.

A review of the TS literature provides some evidence for increased parental stress and identifies several challenges confronting parents of those diagnosed. High levels of caregiver burden and stress were found for mothers of children with TS, which exceeded the rate reported by parents of children with chronic asthma (Cooper, Robertson, & Livingston, 2003). When compared with unaffected families, parents of a child with TS experienced higher rates of parental stress and frustration (Bitsko et al., 2014; Robinson, Bitsko, Schieve, & Visser, 2013; Stewart, Greene, Lessov‐Schlaggar, Church, & Schlaggar, 2015), substance abuse, and marital dysfunction (Stefl, 1983). Most caregivers also encounter low levels of acceptance and understanding of TS, high rates of delayed and mistaken diagnosis, a lack of adequate specialist TS services, with the child often having unmet mental health‐care needs (Bitsko et al., 2014), in addition to stigmatisation, negative stereotyping, and social isolation related to TS (Collins, 2005; Conelea et al., 2011; Davis, Davis, & Dowler, 2004; Dedmon, 1990; Eapen & Črnčec, 2009).

Given its waxing and waning course, unknowable prognosis, and the lack of treatment options currently available, living with TS is inherently stressful (Bruun & Budman, 1997; Collins, 2005). Others sources of stress include the increased incidence of psychopathology amongst parents of youth with TS, parental guilt relating to genetic transmission of TS, impairment in parent–child and sibling relationships, and elevated levels of overall family stress (Carter et al., 2000; Cohen, Ort, Leckman, Riddle, & Hardin, 1988; Cooper et al., 2003; Lee, Chen, Wang, & Chen, 2007; Schoeder & Remer, 2007; Storch et al., 2007a, 2007b; Wilkinson et al., 2001; Wilkinson, Marshall, & Curtwright, 2008; Woods, Himle, & Osmon, 2005). There is also evidence to suggest that increased symptom severity (Lee et al., 2007) and comorbidity may exacerbate parental stress, with disorders such as co‐occurring ADHD associated with elevations in parental and family stress and conflict (Bitsko et al., 2014; Cooper et al., 2003; Stewart et al., 2015; Sukhodolsky et al., 2003; Wilkinson et al., 2001, 2008). Traficante (2007) concluded that parental stress is related to the frustrations experienced in the efforts to alleviate distress and successfully parent a child with TS in the absence of adequate professional and informational support. Finally, the role of socio‐demographic factors was illustrated in a study of Taiwanese parents of children with TS. Low family income and limited access to childcare were strong predictors of increased parental stress (Lee et al., 2007).

The above findings illustrate several challenges confronting parents of youth with TS. Theoretical modelling (Abidin, 1992; Wallander & Thompson, 1995), however, suggests the possibility that many more factors may impact parental stress. These may include the general stressors reported by peers in the context of chronic paediatric disorder, and those uniquely associated with TS. Given the central and under‐supported role that many parents play in the care and welfare of their child diagnosed with TS, an improved understanding of the unique pressures they experience is of substantial concern. It is also likely that the current status of TS in the Australian context, which until recently has been under‐researched, and the availability of services and supports influence parental stress. Although Australia has universal health care, a recent survey by the current authors (O'Hare et al., In Press) found that parents of youth with TS (n = 86) encountered low levels of TS‐specific knowledge and difficulty accessing services within the Australian health and educations sectors; high rates of stigma (50%) and the majority were reliant upon general medical practitioners for diagnosis and ongoing management of the child's TS. Less than two thirds of youth in the study were currently receiving any form of intervention for their TS. With a population of less than twenty four million spread over a vast geographical area, Australian demographics present unique challenges to the provision of accessible specialist services. These are clustered in a few capital cities, and waiting lists can be long. Furthermore, advocacy groups such as the Australian Tourette's Association, which numbers around one thousand active members, lack the funds and resources of their international counterparts to adequately advance the cause of the Australian TS community.

The primary goal of the current study, therefore, was to address a current gap in the TS literature by exploring and identifying the stressors that the primary caregivers of youth with TS perceive as contributing to parental stress. In order to best describe and understand these subjective experiences, a qualitative approach to research design was adopted. Whilst the processes by which these factors affected parenting were not the subject of the current study, it was hoped that findings could provide a foundation for future research, facilitate more informed approaches to clinical intervention, and help providers and policy makers respond more effectively to the needs of the TS community.

Methods

Participants

The sample consisted of 22 biological mothers of youth diagnosed with TS. The majority were married and living with their partner (82%); had an average of two children; resided in urban areas (68%); and were middle income or above (86%). Children ranged in age from 7 to 19 years (M age = 12, 20 males, 2 females). Modal age of TS diagnosis was 7 years, and twenty‐one youth had comorbid diagnoses including OCD (n = 6); obsessive‐compulsive behaviours (n = 6); anxiety (n = 6); learning disorder (n = 6); ADHD (n = 4); oppositional defiant disorder (n = 2); impulse control (n = 2); Asperger's syndrome (n = 2); autism (n = 2); and depression (n = 1).

Measures and procedure

Semi‐structured telephone interviews, ranging in duration from 60 and 90 min were conducted as part of a larger study evaluating attachment relationships and functioning of Australian youth with TS. Questions were open‐ended to allow space for the voices of participants. Many provided unsolicited insights into their experiences as parents of youth diagnosed with TS, which extended beyond the interview questions (see the Appendix for a copy of the interview guide).

A purposeful sample of participants was recruited via email invitation issued to all members of the Tourette Syndrome Associations of Australia and Victoria. The first twenty‐two volunteers to respond were included in the study. Oral informed consent for participation and audio recording was required prior to all interviews, which were conducted by the principal researcher. Participation was voluntary, confidentiality guaranteed, and the study was conducted with the approval of the JCU University Human Research Ethics Committee, in compliance with the latest Declaration of Helsinki (2008). No incentives to participate were offered.

On completion of each interview, all audio files were transcribed verbatim. An eclectic approach to content analysis and data coding was adopted for the purposes of the study, by employing both an inductive approach to detect emerging themes and a deductive approach to content analysis (Miles & Huberman, 1994; Strauss & Corbin, 1998). An initial round of coding was conducted with the reading and rereading of all transcripts several times, to identify initial themes and categories. Three a priori themes grounded in attachment theory were employed to code data related to the impact of TS on the attachment relationships included in the study, the findings of which are reported elsewhere (O'Hare et al., 2015). Coding also identified a fourth major theme, which emerged inductively from the initial round of coding. This was labelled ‘Parental Stress’ and is the sole focus of the current report.

Line‐ by‐line manual coding of all transcripts then continued in an iterative process, leading to the reduction of data into subcategories and categories within the theme of ‘Parental Stress’, which were modified over a period of 6 months (Biddle, Markland, Gilbourne, Chatzisarantis, & Sparkes, 2001). Twelve subcategories, each representing a distinct parental stressor described by participants, emerged inductively from this process. These were further grouped into two major categories labelled ‘General stressors’ and ‘TS specific factors’ (presented in Table 1).

Table 1. General and TS‐specific stressors experienced in parenting a child or adolescent with Tourette syndrome (TS)

General stressors—shared with parents of youth with chronic, serious disorders.	Frequency (% of sample, N = 22)	Tourette's specific stressors	Frequency (% of sample, N = 22)
Mother assumes Burden of Care	20 (91%)	Take TS seriously/credibly	21 (95%)
Mother forced to take charge / advocate / become the expert	21 (95%)	Social isolation (child / mother / family)	19 (86%)
Bridge to the Outside world	16 (73%)	School as a key player	21 (95%)
Family First (home as sanctuary)	16 (73%)	The diagnosis experience:
		Difficult Process	Yes (12; 55%) No (10; 45%)
		Traumatic	Yes (20; 91%) No (2; 10%)
		Relief	Yes (15; 68%) No (7; 32%)
Living Worried—Struggling to remain optimistic	20 (91%)	Grief / loss of ideal child	21 (95%)
Critical Times	21 (95%)	Tangled (disentangling TS / co‐morbid disorders and normative behavioural issues)	17 (78%)

Note. Themes shared with parents of children with serious, chronic paediatric disorders—as determined by Coffey (2006).

Definitions and sample text from multiple participants for the major theme, two categories and twelve subcategories were included in a data dictionary composed for the study. Third‐party trustworthiness checks of data coding by two trained coders blind to the purposes of the study resulted in high percentage agreement and significant inter‐rater agreement as measured by Krippendorff's Alpha, (p < .01.) and an audit trail was maintained.

One direct question was posed at the conclusion of each interview. ‘What do you feel the TS community needs the most?’ Responses to this question were recorded and data coded by a simple content analysis (Table 2). Finally, the frequencies and sample percentages for responses in the study were calculated.

Table 2. Statement of needs of mothers of youth with Tourette syndrome (TS)

General needs	Frequency (% of sample, N = 22)
Understanding, acceptance, and support from all levels of society for the child, for the mothers themselves as parents of a child with TS and for the family	17 (78%)
Need for immediate, accessible, and comprehensive information regarding TS for parents and concerned others (particularly at the time of diagnosis and later in relation to interventions parents could implement to help their child)	17 (78%)
Need for the education of those within the school system (classroom teachers, principals, classroom aids, school administrators, and educational policy makers	11 (50%)
Urgent need to improve the low level of knowledge currently demonstrated by medical practitioners in particular.	11 (47%)
Improved diagnostic processes and access to specialist treatment ‐high priority	11 (47%)
Specific Needs (less frequently identified)
Access to formal and informal respite services
Increased funding‐ federal, state and local government level
Easier access to classroom aides and curriculum flexibility
Increased social networking opportunities for mothers, child and family to reduce feelings of isolation‐ particularly disadvantage experienced by mothers in non‐metropolitan areas

Results

Experiences related to parenting a child with Tourette syndrome

Twelve distinct themes representing the major stressors associated with parenting a child with TS emerged from the data analysis. Responses across the sample demonstrated a high level of homogeneity. The quotes included in this report are widely sourced from the twenty‐two participants included in the study. Many findings are consistent with the results of Coffey's (2006) recent metasynthesis whilst others were disorder specific (TS). Results are presented in Table 1.

Mother assumes the burden of care

Over 90% of the mothers described the stress associated with assuming primary responsibility for the care of their TS diagnosed child, even for those with an available and supportive partner. This demanding role was characterised by self‐sacrifice and a determination to ‘do the best’ by the youth.

‘We made the decision that I'd be a stay at home mum. I think it's been the best thing for my children but it's so hard, so all encompassing (caring for a child with TS).’

Serious / credible—battling ignorance, fighting for understanding and acceptance

The widespread lack of understanding and acceptance of TS, experienced by those diagnosed and their families, was another critical contributor to parenting stress for 95% of the participants. This had wide‐ranging adverse consequences such as delayed or mistaken diagnosis, inadequate school support, relationship breakdowns, misattribution of blame and responsibility for symptoms and behaviours, dismissal or minimisation of maternal concerns regarding her child, and the experience of negative stereotypes and stigmatisation.

‘The doctor suggested his behaviour was “Tourettish” but it was behaviourally based and recommended parenting lessons! I was in stunned silence and I just felt so angry.’

Mother forced to take charge, advocate, become the expert

Participants (95%) also identified the increased burden associated with ‘taking charge'—becoming the expert, educator, and advocate for the diagnosed child and family.

‘I feel sorry for the child that doesn't have a parent that wouldn't have a voice to be able to speak up…you don't always come out (after talking to school) with brownie points but I think, well I have to do it!’

‘Living worried’ and ‘Staying in the struggle’

Mothers (90%) also described struggling to manage the many anxieties and fears they experienced in response to their child's pathology and behavioural, social, emotional, and academic difficulties. Many had difficulty maintaining a sense of optimism regarding a ‘normal’ future for both child and mother in the face of the youth's symptoms. Low self‐efficacy in regard to coping with the child's high level needs was common. Most challenging were the youth's self‐injurious behaviours, aggressiveness, episodic rage, impulsivity, very severe tics, or multiple comorbid diagnoses.

‘The stress is never ending…life was so simple and easy and everybody was happy, but now everyone around me is sort of falling to bits and it's hard. And so if I lay in my bed and think about it then I get so sad, so I just hop out of bed and just do it!’

‘Tangled’

Participants (78%) also identified parenting dilemmas that were a function of the difficulties they experienced when attempting to disentangle TS and comorbid symptoms from behaviour that would usually be construed as childhood or adolescent misbehaviour.

‘It's like you've got to learn how to draw the line between treating this child like a normal teenager and… keeping in mind that he's not quite the same as everybody else but he's got to be treated the same as everyone. The balance becomes harder as he gets older…you really double think, is this the teenager talking, or the TS, ADHD, or is he just being a pain in the ass?’

Critical times

The fluctuating nature of parenting stress also emerged as a significant theme for 95% of the sample, with stress peaking around critical times and events in the life of the child and family. These included the time of diagnosis, developmental transitions such as puberty and adolescence, changing schools, changes in family routine or circumstances, apparently minor events such as holidays, and major life events such as a death in the family. Whilst attempts to anticipate and prepare for such events provided a sense of control for mothers, this was also challenging and stress provoking.

‘Adolescence! It's my big fear (when he enters high school) because violence is just not going to cut it!’ ‘Going on family outings or holidays… it's just a nightmare…we have to plan ahead and it's really hard… we try to prepare him… teach him strategies’

The diagnostic experience

The process of diagnosis was highly traumatic for the majority (90%). Many (55%) had to drive the diagnostic process by proactively assuming the role of educator for the professionals they consulted, and described being invalidated and dismissed during this process.

‘I just don't want other parents to have the same nightmare!…it took years…we've been to so many specialists… one psychologist said really weird things… like they said he had ODD, that he might be homosexual!’

As a result of the diagnostic experience, the majority of mothers (68%) felt some sense of relief amidst the trauma.

‘I was happy because you know, like I was just sick and tired of people constantly telling me that he can stop it when I knew he couldn't. We had a psychiatrist who told me to give him two dollars every time he stopped. That's how bad it got!’

Grief and loss of the ‘ideal child’

Others overtly referred to their experience of distress and grief regarding the loss of their ‘ideal’ child (32%) after the diagnosis of a chronic, incurable disorder. This was compounded by diagnosis occurring at an unexpected time (i.e., middle childhood or teens), which for many followed the child's ‘normal’ infancy and early childhood development.

‘We had to grieve for the sense of loss‐ at the same time guilt because he didn't have leukaemia and he was not going to die from this … but it is going to affect his quality of life… when he was born he was perfect and I'd had this perfect child, so it never occurred to me that something could kick in at 5 or later!’

Social isolation (child / mother / family)

Mothers (86%) described the social isolation they experienced as a consequence of their child's diagnosis. Most reported the loss of important relationships, a drop in social support, and difficulty maintaining a ‘normal’ social life due to restriction in activities, voluntary social withdrawal, or social exclusion post diagnosis.

‘With family it's really, really quite difficult so in the end I've had lots of arguments… I've realized that I've tried and tried and I've talked until I'm blue in the face and I think well they are really quite ignorant!’ ‘Families with “normal” kids, just don't get it. They don't want their child to be associated with yours.’

Family first—home as sanctuary

Many (73%) responded to social isolation and reduced social support by focusing upon and surviving as a nuclear family. Home became a place of ‘sanctuary’, where the child could ‘let it all hang out’ and parents didn't have to monitor or manage the response of others to the youth's symptoms.

‘I suppose with our family (nuclear) unit, we are very strong with each other, we rely on each other a lot which I think helps in lots of ways.’ ‘We said honey you just tic as much as you want and as often as you want and as loud as you want because we don't care (mum, dad and siblings).

‘Bridge to the outside world’

The importance of having some sort of ‘bridge to the outside world’ to counter the isolation, distress, and difficulty associated with the lack of acceptance and understanding of TS by others was also reported (73%). Many stressed the importance of connecting with those who ‘get it'—for example, peers (Tourette Syndrome Associations of Australia and Victoria, TS Mothers support groups), parents of children with other disorders, understanding medical professional, or teachers.

‘Our TS mothers group was a godsend.’ ‘This new doctor… I said “do you know anything about Tourette's” and he said “I've got three brothers with Tourette's!” so I was like Yes! Now you're my new doctor!’

School as a key player

Finally, 95% of the mothers identified the critical role of school in determining the youth's academic and social wellbeing and maternal stress.

‘Teachers are going to be my best friends—I'm not going to be in their face but I'm there whenever they want me for anything.’ ‘The school‐ I can't thank them enough! They've worked so hard to get him to where we are now’. ‘The school is fantastic… curriculum support. He's slowly catching up so everything's good… they handled the bullying well…’

Statement of needs

Table 2 summarises the response to the final interview question regarding the needs of the TS community. No data interpretation was required. The most frequently identified needs (78% of the group) were for acceptance, understanding, and support for those diagnosed and their families, in addition to comprehensive informational support. These were followed by a need for improved TS knowledge amongst professionals in the education (50%) and health sectors (47%). Table 2 also includes several less frequently identified specific needs reported by individuals.

Discussion

To the best of our knowledge, this is the largest qualitative study of parents of youth with TS and the first to be conducted in Australia. It achieved its primary goal of identifying the major factors contributing to stress in the context of parenting a child or adolescent diagnosed with TS. Findings also indicate the substantial and largely unacknowledged level of stress experienced by the present sample. In summary, and as predicted by theoretical models of parenting stress (Abidin, 1992; Wallander & Thompson, 1995), participants shared many problems and described similar levels of stress as those reported by parents of children with a wide range of serious, chronic paediatric disorders (Coffey, 2006). Also, as expected, not all of the parenting experiences reported in the present study transcended the child or adolescent's underlying diagnosis, with results demonstrating a role for TS in exacerbating and creating several unique challenges for parents.

Specifically, the study revealed twelve distinct major stressors confronting this sample of parents of children with TS (See Table 1). As predicted by Abidin (1992) and Wallander and Thompson's (1995) models, stressors included parent, child, and contextual factors, in addition to illness parameters, with parent and contextual factors emerging as those most frequently identified. As reported in prior TS studies (Cooper et al., 2003; De Lange & Olivier, 2004; Wilkinson et al., 2001) and the parenting literature (Coffey, 2006), the majority of mothers assumed the burden of care of their child in addition to the role of child advocate and TS expert (Collins, 2005; Dedmon, 1990; Packer, 1997, 2005). This is consistent with Ray's (2002) notion of the ‘invisible work’ that parents of children with chronic conditions undertake. Consistent with anecdotal reports, both the child and mother also endured a lack of understanding, acceptance, and stigmatisation (Collins, 2005; Conelea et al., 2011; Davis et al., 2004; Dedmon, 1990; Packer, 1997, 2005).

Mothers also identified difficulties occurring around specific times or events, such as adolescence or the time of TS diagnosis. As previously noted (Collins, 2005; Dedmon, 1990), the later was experienced as a highly traumatic major life event for mothers. Compounding the trauma was the difficulty half of the participants experienced in achieving the diagnosis. Many encountered high levels of professional ignorance regarding TS, found it necessary to educate consultants, and were often invalidated and dismissed during the diagnostic process. This is an unfortunate and pervasive experience that has been reported to commonly occur within general medical settings (Balling & McCubbin, 2001). Impaired transactions with providers and the health system were therefore significant barriers to maternal adjustment to their child's diagnosis, and a source of significant stress.

The majority of respondents also described a range of highly adverse emotional experiences relating to their child's TS. These increased the risk of maternal stress in addition to psychopathology and its attendant negative parenting outcomes (Lovejoy, Graczyk, O'Hare, & Neuman, 2000). The fears, anxieties, and high levels of stress reported by participants had the potential to adversely affect maternal cognitive, emotional, and behavioural functioning (e.g., self‐efficacy, stress appraisals, coping responses, etc.). These are hypothesised to contribute to impaired interactions between mother and child thereby increasing parenting stress (Abidin, 1992; Wallander & Thompson, 1995).

Symptoms that caused the highest level of maternal concern were self‐injurious behaviour, aggressiveness, and impulsivity, which have been strongly associated with adverse family outcomes, stress, and conflict (Budman, Rockmore, Stokes, & Sossin, 2003; Cohen et al., 1988; Cooper et al., 2003; De Lange & Olivier, 2004; Dooley, Brna, & Gordon, 1999; Sukhodolsky et al., 2003; Wilkinson et al., 2001, 2008). Fears of the future, inability to parent adequately, persistent guilt and remorse regarding pre‐diagnostic parenting, and grief at the loss of their ‘ideal child’ were also deeply distressing.

Mothers also reported significant difficulty disentangling the symptoms and behaviours attributable to their child's TS and comorbid disorders from normative ‘misbehaviour’. The current high rate of comorbidity created complex challenges and parenting dilemmas that undermined maternal confidence and exacerbated stress, and is an experience that has been reported in the TS literature (Bitsko et al., 2014; Cohen et al., 1988; Cooper et al., 2003; Lee et al., 2007; Stewart et al., 2015; Wilkinson et al., 2008). Future studies would however be required to assess the relative contribution of various co‐occurring disorders to the level and type of stress parents experienced.

A contextual factor contributing to maternal distress was social isolation. The importance of social support has been illustrated in prior TS studies. Schoeder and Remer (2007) found that adequate social support for families of children with TS mediated the impact of tic severity and caregiver burden whilst Lee et al. (2007) determined that social support reduced parental stress. The buffering effect of emotional and material support (Green, Furrer, & McAllister, 2007) and its relationship with positive parenting experiences (Andresen & Telleen, 1992) is also well supported in the literature. That the participants were identified connecting with others who ‘get it’ is therefore unsurprising. The family's ‘bridge to the outside world’ took the form of peer support and understanding professionals. Many participants also described keeping their focus upon and ‘surviving’ as a nuclear family, which has also been previously described (Davis et al., 2004; Dedmon, 1990), and making home their sanctuary.

The final contextual factor playing a critical role in determining child and maternal wellbeing was ‘the school’. This is consistent with prior studies demonstrating the positive contribution of a supportive school environment to maternal and child wellbeing in the TS literature (Packer, 1997; Woods & Marcks, 2005). A limitation of the current study, however, was the inability to adequately examine the impact of important socio‐demographic factors such as low income and family breakdown on rates of parental stress. This was due to the relative affluence and stable family characteristics of the majority in the current sample.

The present study also revealed the service and support needs identified by the current parent sample (Table 2), which reflected the deficits identified by O'Hare et al. (In Press). The need for improved understanding, acceptance, and support for the child with TS, mother, and the family and the availability of immediate, accessible, and comprehensive information regarding TS were most frequently endorsed. The later has been noted in a Canadian TS study (Traficante, 2007) and identified by the parents of children with other paediatric disorders (Perrin, Lewkowicz, & Young, 2000). Parents also called for substantial improvement in knowledge and understanding of TS for key professionals in the Australian education and health sectors in addition to improved diagnostic processes and access to specialist treatment.

Participants also referred to a suite of specific needs, the most common of which included access to support and respite services. Unlike the study by Traficante (2007), the present sample did not identify the need for psychological interventions. Perhaps the reason was that this sample of Australian mothers lack awareness of or has limited access to non‐pharmacological intervention.

Present findings reflect the experiences of a small group of Australian parents, thereby limiting the ability to generalise to the wider TS population. The high level of agreement expressed between participants, however, and the relatively large size of this qualitative study (n = 22) support the meaningfulness of the findings, which could be confirmed in a future quantitative study employing a psychometric measure of parental stress. Other limitations which could be addressed in future research include the inability to control for the relative effects of TS and comorbid disorder on parental stress and the inability to explore the impact of socio‐demographic factors due to the relatively homogenous demographic characteristics of the current sample. The researcher may also have introduced bias at any or all levels of this qualitative study, although efforts were undertaken to reduce this risk. The current study was also limited to the identification of stressors and did not examine the processes by which these may moderate or mediate parental stress. This could be a goal of future theoretically driven quantitative research.

In conclusion, the study identified a wide range of factors with the potential to directly determine, mediate, or moderate parental stress in the context of TS, and revealed the generally unacknowledged challenges encountered by parents of youth with TS. Present findings also indicate the need for psychosocial and psychotherapeutic support for both child and parent, and greatly improved access to well‐informed mental health and educational services.

Acknowledgements

Research completed in partial fulfilment of a PhD by principal author, not subject to funding, and no conflict of interest. Thanks to the Tourette's Societies of Australia and Victoria for assistance in recruitment.

Appendix Interview Questions

Welcome………,

General chat to establish rapport.

Confidentiality and Consent to participate and record (Audio)

Interview (60–90 min long individual interviews conducted by principal investigator. One interview per participant)

Introduction and Point to cover.

Thank you ……, for agreeing to talk to me about yourself and your child.

I have a number of questions that I'll be asking you, and all the other mothers participating in this study.

These questions will be about your thoughts in regard to aspects of your child's life that may be affected by Tourette's. Please be assured that everything we talk about today will be completely confidential and if at any time you are not comfortable to respond to any questions, we can stop.

We will be speaking for about an hour, and we do have a few questions to get through, so I will try to keep us on track. If you would like to speak to me further, we can arrange that following this part of the interview.

Are you OK to start?’

Let's start with you telling me a little about your child (Use name)

(General Impact)

• How would you describe your child?

• What was it like when your child was diagnosed with TS?

• How do you feel TS affects your child? (Global well being and specific concerns) (prompt as necessary…like family, school, social …mother's implicit theory..)

(Relationships /attachment/ mother as secure base safe haven)

• How would you describe your relationship with your child or / tell me about the quality of your relationship? (How does it compare with your relationship with your other child/ren (if applicable)?

• What, if anything, has changed in any way since the diagnosis?

• How does your relationship with your child differ from /or is the same as your relationship with your own parent? (Maternal attachment history‐ overview)

• How does your child act when he is upset?

• What do you do when he is upset?

• How do you feel when he is upset?

• How did you handle your upset when you were a child?

• As a parent, what do you do now when you are upset?

• How does your child get along with other kids? (Prompts if necessary:

Type of friendships (few, lots, close, distant etc), ability to make and keep friends; other children feel about and interact with your child?

• How is your child's social life the same as / or different to other kids?

• How do casual acquaintances act towards your child /and your family?

• How do you think TS affects his social life or your family's social life? (Invitations, sports, activities, participation, holidays, limited opportunities etc).

(Close)

• What do you feel parents and kids with TS need the most?

• Would you like to add anything?

Thank you. Check‐in and close with details re follow‐up.