A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD

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Research in Developmental Disabilities

A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD Katrina Chamberlain a , Natasha Reid a,∗ , Judith Warner b , Doug Shelton b , Sharon Dawe a a b

School of Applied Psychology, Griffith University, Mt Gravatt, Queensland 4121, Australia Child Development Service, Gold Coast Hospital & Health Service, Queensland, Australia

a r t i c l e

i n f o

Article history: Received 24 February 2016 Received in revised form 8 June 2016 Accepted 10 June 2016 Available online xxx Keywords: Fetal alcohol spectrum disorder (FASD) Diagnosis Assessment Qualitative research

a b s t r a c t Introduction: The effects of prenatal exposure to alcohol are wide-ranging and pervasive in nature. In response to growing concerns about the lifelong disabilities related to prenatal alcohol exposure, a fetal alcohol spectrum disorder (FASD) diagnostic clinic was established in 2012. This was the first multi-disciplinary service operating permanently within an Australian health service. The current study aimed to explore the lived experience of the diagnostic process for caregivers of children with FASD. Methods: Twelve caregivers were approached and ten participated in audiotaped interviews about caring for a child with FASD. Qualitative analysis was undertaken on transcribed interviews using NVivo 10 for thematic analysis. Results: The major themes that emerged were: a desire for future support for their child although uncertainty about how this support could be accessed; an understanding of FASD prior to assessment but a concerted concern that this condition was not recognised as a disability across educational and related settings; that a formal assessment process provided validation for caregiver concerns and that caregivers felt respected and understood by the clinical team during this process. Discussion: These findings highlight the concerns of caregivers, emphasising both the importance of diagnostic services and the need for provision of further support beyond diagnosis for a child with FASD. What does this paper add?: This study provides information on the lived experiences of caregivers who attended the first multi-disciplinary FASD assessment and diagnostic service in Australia. This study provides valuable insight into the ongoing difficulties that families are experiencing following diagnosis in the current Australian context. © 2016 Elsevier Ltd. All rights reserved.

1. Introduction Since fetal alcohol syndrome (FAS) was first described (Jones, Smith, Ulleland, & Streissguth, 1973; Lemoine, Harousseau, Borteyru, & Menuet, 1968; Stratton, Howe, & Battaglia, 1996), a process of refinement in the description and diagnosis of this condition has been undertaken. It is now well established that children exposed to alcohol during pregnancy potentially display a wide range of morphological and neurocognitive difficulties. Consequently, the term fetal alcohol spectrum disorder

∗ Corresponding author at: School of Applied Psychology, Griffith University, Brisbane 4111, Qld, Australia. E-mail address: natasha.reid@griffithuni.edu.au (N. Reid). http://dx.doi.org/10.1016/j.ridd.2016.06.007 0891-4222/© 2016 Elsevier Ltd. All rights reserved.

Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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Table 1 Caregiver demographic characteristics. Family number

Gender

Age (yrs)

Parent Occupation

Level of Education

Caregiver status

Relationship status

1 2 3 4 5 6 7 8 9 10

Female Female Female Female Female Female Female Female Male Female

50 50 55 50 51 69 62 54 50 47

Administration Self-employment Community services Home duties Community services Healthcare & Medical Retail Healthcare & Medical Education Retail

Tertiary certificate Grade 10 Grade 10 Grade 12 Grade 10 Tertiary Grade 12 Tertiary Tertiary Grade 10

Foster carer Adoptive parent Legal guardian Legal guardian Legal guardian Foster carer Foster carer Legal guardian Foster carer Legal Guardian

Married Married Single Married Single Widowed Married Married De-facto Divorced

(FASD) has been adopted to describe the broad spectrum of physical, behavioural and intellectual effects resulting from prenatal alcohol exposure (Cook et al., 2016). FASD is a substantial public health concern, as it can result in significant life-long implications for individuals, including poor educational attainment, high rates of unemployment and over-representation in the foster care, juvenile and criminal justice systems (Streissguth et al., 2004). As a consequence individuals with FASD may often require lifelong support and services in areas of health, social services, education, justice, addictions and family support (Ospina & Dennett, 2013; Popova, Lange, Bekmuradov, Mihic, & Rehm, 2011; Streissguth et al., 2004). Early screening and diagnosis of FASD is critical to prevent, anticipate and ameliorate secondary, tertiary and quaternary disabilities in adolescence and adulthood (Olson, Jirikowic, Kartin, & Astley, 2007). Despite the known benefits of intervention (Reid et al., 2015), only a small portion of children with FASD receive appropriate early diagnosis, due to failure to recognise FASD symptomatology, lack of health care professionals’ knowledge and training in diagnosis, lack of funding for diagnostic clinics as well as the high financial and time requirements of a comprehensive multi-disciplinary diagnostic assessment (Watkins et al., 2013). A number of diagnostic schemes, including The Clarification of the 1996 Institute of Medicine Criteria (Hoyme et al., 2005), The FASD 4-digit Diagnostic Code (Astley, 2004) and the recently revised Canadian Diagnostic Guidelines (Cook et al., 2016) have been implemented worldwide. Additionally, numerous diagnostic services have been established, with available evaluations showing that the services were effective in supporting caregivers and that caregivers typically reported high satisfaction with the diagnostic process and outcome (Astley, 2010, 2014). Despite these positive evaluations of the diagnostic process, parents and caregivers consistently report considerable strain involved in raising a child with FASD, with a lack of professional knowledge of FASD leading to delayed diagnosis and impeding children’s access to services (Petrenko, Tahir, Mahoney, & Chin, 2014). Caregivers have also reported difficulties managing behaviour due to the child’s underlying difficulties in self-regulation and caregiver’s own expectations of their child. Additionally, biological parents raising children with FASD report feelings of blame, guilt and shame (e.g., Paley, O’Connor, Frankel, & Marquardt, 2006; Salmon, 2008; Wells, Chasnoff, Schmidt, Telford, & Schwartz, 2012). In the light of growing awareness in Australia about international standards for best practices in the diagnosis of FASD, a specialist service was established as part of the Queensland Health’s Child Development Service. This was the first Australian multi-disciplinary assessment and diagnostic team for young children operating within a health service. The main goals of this service are to provide an appropriate diagnosis, support to caregivers around the diagnosis and assist caregivers to develop a support plan to link in with relevant services. The present study used a qualitative approach to evaluate the assessment process for families of children with prenatal alcohol exposure. This is the first study to report on the lived experiences of Australian caregivers whose children have received a FASD diagnosis from a multi-disciplinary diagnostic service. The current study aimed to provide understanding around how families experience the diagnostic process and to provide insight into the ongoing difficulties for families following diagnosis in the current Australian context. 2. Methods 2.1. Participants Primary caregivers of children who were referred to the specialist diagnostic service between April to October 2015 were invited to take part in the current study. Of the 12 eligible families, ten consented to take part. Two declined to take part due to significant adverse life events that occurred during the course of the assessment (e.g., placement breakdown and death of a family member). Tables 1 and 2 provides information on participants’ demographic characteristics. Four caregivers were foster parents, one an adoptive parent and five were legal guardians (i.e., foster or kinship caregivers who had long-term full parental responsibility for a child under a guardianship order). 2.2. The diagnostic process Children were referred if there was evidence of prenatal alcohol exposure provided by caregivers or documented in social services or hospital records. The multidisciplinary team consisted of paediatricians, clinical psychologists, a social worker, Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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Table 2 Child characteristics and demographics. Family number 1 2 3 4 5 6 7 8 9 10

Child age (yrs) 7 11 9 9 7 9 12 8 6 7

Time spent with caregiver (yrs) 7 10.5 3 9 7 7 3 8 0.75 7

4-Digit diagnosis

3443 1122 1234 1124 1124 & 2444 2444 1234 1124 1232 1433

No. children in family

Previous diagnoses

6 4 8 3 7 4 5 6 1 3

GDD ODD, ASD ADHD ASD No diagnosis. Intellectual Disability ADHD, PTSD, RAD ADHD ADHD ADHD, ODD

Note: Global Developmental Delay (GDD); Oppositional Defiant Disorder (ODD); Autism Spectrum Disorder (ASD); Attention Deficit Hyperactivity Disorder (ADHD); Post-Traumatic Stress Disorder (PTSD); Reactive Attachment Disorder (RAD).

and speech pathologists. Assessment and diagnosis involved three phases: (1) a comprehensive clinical intake with the family, liaison with the Department of Communities (Child Safety Services), health care providers and other stakeholders when applicable, and a detailed review of all available medical, developmental and educational records; (2) an assessment of the key FASD features (i.e. growth deficiency; FAS facial phenotype; CNS abnormalities and prenatal alcohol exposure) to derive a diagnosis using the 4-Digit Diagnostic Code (Astley, 2004) and (3) a comprehensive written report discussed with caregivers, and after consent was obtained provided to the relevant stakeholders and the child’s school. 2.3. Procedure All study procedures received institutional approval from both the participating health service and university research ethics committees. An information sheet documenting the details of the study was provided to potential participants prior to or during attendance at the two-day diagnostic assessment. Families who agreed to participate provided written consent. Caregivers were informed that information would be de-identified and the clinic staff would not be aware of their responses. This qualitative study used a phenomenological approach by asking caregivers to describe their lived experience of engaging with and the outcomes associated with diagnosis of FASD for a child in their care (Carpenter, 2011). Interviews were 30–40 min long and were conducted at two months post-diagnosis. The semi-structured interview comprised of three main sections: background family information, caregivers’ experience of the assessment process and, future directions for the family following the assessment. All interviews were conducted by the first author, who was not a member of the diagnostic team and had no previous or ongoing connection with the service. 2.4. Data management and analysis Interviews were audio-recorded and transcribed verbatim, with all identifying information removed. Thematic analysis was employed on the interview transcripts which was guided by the Braun and Clarke (2006) six phase approach to coding: (1) data familiarisation, where data was read and re-read independently by two researchers; (2) initial code generation, where salient features of the data were listed in a systematic fashion across the entire data set. This process involved detailed examination of the transcripts by two researchers. Initial codes were discussed and agreed upon; (3) theme searching (i.e., collating codes into potential themes based on similarities, relationships, concepts and explanations); (4) reviewing themes (i.e., checking if themes work in relation to the coded extracts), (5) defining and naming themes (i.e., ongoing analysis to refine the specifics of each theme); and (6) producing the report. This approach employs inductive and deductive coding methods to analyse, develop and describe themes across data sets. The QSR International’s qualitative software package (Nvivo 10), was utilised for phase three and four (i.e., theme searching and reviewing). 3. Results Six main themes were identified in the qualitative analysis of participant experiences and are summarized below and in Table 3. Sub-themes were included if more than 50% of participants met criteria for that theme, to ensure accurate representation of the majority of caregivers’ experiences. 3.1. Caregiver aspirations and actions to enhance their child’s future The first theme to emerge from the analysis was caregivers’ concern for their child’s future. Caregivers described this as a desire to ensure that family, friends and services would support their child in the future and that their child would be a happy and contributing member of society. Caregivers reported that they strongly believed that their role was to advocate for their child, given that they were the person with the greatest level of insight into their child’s abilities. Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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4 Table 3 Themes and example quotations. Subtheme

Caregiver aspirations and actions to enhance their child’s future Desire for child to have happy future

Caregiver advocates for child difficulties

Example Quotations “I so much want [my child] to fit into society and be just a great person. Just to change their future, you know? That’s all I want for them, just to have a nice life.” (P3) “It’s not their fault in any way, but if the education system and the parenting system is having difficulties, well then, by them being tested, it’s up to us, me as the parent to take from it and the school to learn how we can change things ¨ and fine-tune things to suit them better.(P1)

Desire for support systems

“If we fast forward in 10 years time, are they going to be at nearly 20, are they going to be acting like most normal 20 year olds? Or are we going to have someone who is emotionally 14 still? And a lot of that is still in the unknown (. . .) Is that something you need to look at, are they going to always need (. . .) ¨ supported living? They are going to have decent family and friend support.(P2)

Recognition for child strengths

“Without the behaviours, he was a very persevering, clever little boy. I would say ‘One day you are going to be an actor’, because he just has this canny, canny way with him. He just makes people laugh.” (P5) “The only thing I haven’t done is actually give birth to them, that’s how we regard them, as our own (. . .) We’re in this for the long haul. . .it was just the right thing to do. I’m glad we’ve been able to give these kids a chance (. . .) We will be there to support them for as long as they need it.” (P8)

Desire for child’s needs to be met

Increased caregiver uncertainty Exhausted all possible health services

Feelings of apprehension about the future

Questioning importance of diagnosis in isolation

Caregiver knowledge and understanding of FASD Pre-diagnosis accessing of health services

Pre-diagnosis implementation of practical strategies

Acknowledgement of child limitations

Experience with child rearing contributes to understanding of child difficulties

Acknowledgment of own expertise

Proactive accessing of FASD knowledge (pre & post diagnosis)

Understanding FASD as different to other disabilities

Identification of child’s behaviour as different

“I did everything in my power to do whatever we could (.) nothing is different (. . .) But, no, I don’t think there’s much difference at all. No extra services or support. I don’t think so.” (P6) “I think, I just basically know what’s going to happen. I can understand, I’ve seen other kids like [child] and what’s happened to them. I don’t know, it’s hard to say if [child]’s going to get into trouble. [Child]’s going to be easily led because his brain doesn’t work properly. [Child]’s going to be easily led and get into trouble. But I can only do the best that I can.” (P7) “I did go to the computer and I did look for books. But I thought ‘what else is out there?’. I was really thinking ‘I know nothing about where I access outside, ¨ if I wanted to’.(P3) “She hardly spoke, so she went to speech therapy for two and a half years when she was very young. She [also] went to occupational therapy for two and ¨ a half years.(P6) “I know I’ve got quite a bit in place already, like I go to an educational psychologist and I do dance with the boys too [for] coordination, and I do piano (. . .) I’ve got certain things that I do, but I often wonder what’s available ¨ for them out there.(P3) “And with [child] the way she is, the whole thing is really affecting her in a big way, because she doesn’t know how to deal with it (. . ..) because she can’t organise stuff in her brain and she can’t think about things, so she just keeps lashing out.” (P4) “We adore him and we love him and I know that children have normal behaviour patterns but there was just something more. Because I have four older children and I’ve worked with special needs children, and I could just see ¨ something that wasn’t right.(P3) They [school] didn’t understand that I had done, I said ‘look I’m not making these ideas up in my head of what [child] needs, I have actually done some training I’ve gone to America to look at some things (. . .) I’ve researched ¨ things.(P1) “We didn’t really need them because we probably already have those strategies. There’s a lot of things that we’ve used and researched different things.” (P4) “I tried to explain to them though that this is not how this condition [FAS] works. it’s just not (.) yes you do work really well with other children but her [child’s] particular disability is very different and one day she will be really good, you know, and the next day she’ll forget things and that’s not because ¨ she is being lazy, this is just what will happen.(P1) “I mean, she was our fourth child, so I’d say if it was my first child I would have let that sit but she was our fourth child and from the moment we got her I said to my husband ‘There’s something not right with her’. She cried excessively and she didn’t sleep and she didn’t eat well and she didn’t crawl. . ..she did ¨ nothing normal that the other three kids did.(P4)

Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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K. Chamberlain et al. / Research in Developmental Disabilities xxx (2016) xxx–xxx Table 3 (Continued) Subtheme Lack of societal knowledge and recognition of FASD School lacks FASD knowledge

Judgement of parenting style Failure of school to listen to parent

Desire for FAS to be acknowledged as disability

Failure of others to understand FASD as disability

Assessment provided validation and understanding Provided validation from others

Diagnostic clarification of child’s needs

Assisted in tailoring interventions

Provided insight into how child behaves

Increased caregiver confidence

Report recommendations helpful & affirming

Process of diagnosis as empowering Caregivers viewed CDS staff as accommodating

CDS staff listened to & built rapport with caregiver & child

CDS staff understanding & validating of child behaviour

CDS staff friendly a& approachable

Previous health professionals lacked FASD knowledge

Caregivers viewed CDS staff as accommodating

Example Quotations “But they [the school] didn’t understand, when you withdraw the support (. . .), even though you might get them to a certain point, always need that support. So they just though they would give her an intense program, like a ¨ reading recovery program and that she would be fixed.(P1) “No, we had a lot of GP’s and I think they were just thinking that I’m a neurotic ¨ mother.(P4) “It was my lack of qualifications. Yeah I am an annoying parent I guess because I would advocate. Even before we started at the school I was giving them the information (. . .) but it’s kind of like [school saying] ‘this is how we’ve done it for the last however many years at the school so this is how we will continue ¨ to do it’.(P1) “There should be no blame on how or why they’ve got it, it’s just that they have it. You don’t blame someone for having a Down Syndrome child, we don’t need to attach blame to it. But let’s acknowledge that it is a real disability, and while the kids (. . .) on the outside they might act normal, but they do still have problems and issues that you don’t get to find out about until you delve deeper into the child or until the child gets older.” (P2) “Well we did gymnastics for a while, and [child] was in soccer. But I can see the advancement in the other kids (. . .), we took him out because other parents didn’t understand, they were just yelling you know? ‘What’s up with ¨ him?’. Yeah so I felt. . ..it was better for his confidence to pull him out.(P3) “Yes, (. . .) that’s what it was. Validation from someone − paediatrician, psychologist and everyone else. It’s not just me making these things up. This is ¨ what a professional says too, yeah.(P1) “Just to have an understanding of where we were at with [child]. What we needed to know what was happening with her. Because she’s had many tests before, with psychologists and stuff like that and they just put it down to [other diagnosis]. So we’ve been diagnosed all these years with this this and this.” (P4) “Well they currently see a psychologist now, (. . .) she said she can tailor anything that we need to see her for. Now she’s got those diagnoses she can ¨ tailor things to a more individual program for them.(P2) On reflection, now that we’ve found out he’s got Fetal Alcohol it’s a lot easier to manage him, when you know he actually can’t understand what you’re talking ¨ about (. . .) I just thought he was being naughty.(P7) “Like for me, it’s [diagnosis] given me more confidence because I have that information. [Child] is not my biological child so I’m probably stronger at being able to advocate for her.” (P1) “It [report] gave me insight into why. . ..he doesn’t do anything. For example I can say to him ‘Go and clean your room’ and he’d just stand there. Now I know he just wasn’t cleaning his room because he was annoying me but now I ¨ realise he can only do one thing at a time.(P7) “Well the staff were wonderful. You know we got sick. And we had to stay an extra night and extra day. [A staff member] even offered to take soiled clothes home and wash them. You know, that was just over and above. They were just ¨ wonderful people.(P6) “Everybody [staff] listened to me, they listened to me in regards to my concerns and my concerns were never too small or insignificant to be listened to. (. . .) People listened to me, they listened to the kids. I thought the way the staff (. . .) interacted with the children was fantastic. They all [staff] spoke to ¨ them [children] at their levels.(P2) “Nobody was recognising, you know? They were saying she was delayed, yes. We went there [CDS] and we were diagnosed. Hurrah! We know what’s wrong and let’s deal with it. It was really the staff, all of them were really ¨ wonderful.(P6) “I thought they were very easy to talk to and ask questions. And they weren’t like ‘I’m the professional and you’re the parent, sort of thing’ it was a very even ¨ playing field. They actually seemed to be interested in what I had to say.(P1) “We’d had a long battle with [child] at doctors and paediatricians (. . .) Yeah and you know all the doctors all fobbed it off saying ‘No it will be right’. We went to occupational therapy for a bit and they said ‘She’ll be right, she’ll be ¨ right’. But things were just not right.(P4) “Well the staff were wonderful. You know we got sick? And we had to stay an extra night and extra day. [A staff member] even offered to take soiled clothes home and wash them. You know, that was just over and above. They were just ¨ wonderful people.(P6)

Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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3.2. Increased caregiver uncertainty Caregivers described that increased understanding of their child’s difficulties had led to further uncertainties about their child’s future. Multiple caregivers were concerned that their children would become troublesome adults who may be ‘led astray’, due to their cognitive impairments. Caregivers reported that despite being recommended services post assessment, many had already previously accessed and exhausted any relevant services. This, for some caregivers, created questions around the importance of their child’s diagnosis, given the lack of available services within the community. 3.3. Caregiver knowledge and understanding of FASD Most caregivers had some prior understanding of FASD, which they believed underpinned their child’s difficulties prior to the assessment process. Furthermore, a clear theme involved caregiver attempts to learn about FASD and access disabilityrelated information. This was usually in the form of online researching, books, and the long-term accessing of various health professionals. Consequently, caregivers reported having an understanding of the nature of their child’s difficulties. These caregivers indicated that they did not blame their child and understood that the behaviours were not intentionally non-compliant. In contrast, one caregiver reported that the FASD assessment process provided her with the information to help her understand that her child’s behaviours were not intentional, and that the child’s prenatal exposure to alcohol had contributed to the child’s current behaviours. This caregiver stated ‘Now that we’ve found out he’s got fetal alcohol it’s a lot easier to manage him, when you know [that] he actually can’t understand what you’re talking about.’ 3.4. Lack of societal knowledge and recognition of FASD This emerged as a major theme, with caregivers reporting that their parenting style and management strategies were often perceived by others as inadequate and that their child’s difficulties were attributed to either family or other environmental factors. Caregivers felt there was minimal understanding of the consequences of prenatal exposure on child behaviour across health professionals, teachers, schools and the wider community. 3.5. Assessment provided validation and understanding All caregivers described the experience of feeling validated from the assessment, that their concerns were ‘real’ and had a basis in fact. It was particularly important that this validation came from an external source. Some reported that receiving this validation from a multi-disciplinary team of health professionals was notably significant as they were able to understand the extent and nature of their child’s difficulties. All caregivers recounted how the assessment provided them with diagnostic clarification about their child. They also reported that it provided them with a clearer understanding of their child’s abilities as well as the extent of their child’s current needs. This feedback affirmed the difficulties that parents experienced with their children and allowed them to better inform other future health professionals about their child. 3.6. Process of diagnosis as empowering All caregivers described similar experiences of negative past encounters with health professionals. However, all viewed their interactions with health professionals at the Child Development Service in a positive light. Many caregivers reported that their experience at the Child Development Service helped them feel more confident about describing their child’s difficulties in health and educational settings. All caregivers reported that the Child Development Service staff were helpful, and that they felt both welcomed and comfortable. Caregivers felt it was an ‘even playing field’ between themselves and the Child Development Service staff, as their voices as parents were heard and respected. Caregivers reported that they appreciated the way in which the staff took time to build rapport and to listen to their child, in particular by showing interest in their child’s activities. Some caregivers reported a desire for a service such as the Child Development Service that would be able to provide more ongoing and long-term support for their children following the diagnosis. 4. Discussion This study provided the opportunity to develop an understanding of the lived experiences of caregivers involved in the FASD assessment process. The qualitative analysis identified six major themes in the caregivers’ narrative that broadly related to three overarching themes: (1) caregivers’ concerns about their child’s future; (2) caregivers’ knowledge of FASD and the level of knowledge in society; and (3) the caregivers’ direct experiences of the diagnostic process. The first overarching theme found that caregivers in this study expressed a strong desire to enhance their child’s future, particularly by acknowledging their child’s strengths rather than their deficits, as well as their aspiration for their child to have a happy life. Whilst caregivers were able to acknowledge their child’s strengths, they also reported feeling apprehensive about what would happen to their child in the future. Caregivers felt that they as individuals, as well as the community at Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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large, were unable to provide for their child’s needs. This was especially evident with caregivers describing the lack of financial support offered. This feeling of the ‘unknown’ is supported by previous literature of caregivers of children with other developmental disabilities, who also expressed concern about the uncertainty of their child’s future, particularly as they themselves aged in years, in the absence of community support (Murphy, Christian, Caplin, & Young, 2007). It is evident that caregivers in this study also felt alone in their efforts to assist their child, and that they as the primary caregivers, were providing the majority, if not all, of support for their child. The second overarching theme focused on caregivers’ knowledge, which they contrasted with knowledge about FASD across society more generally. It was notable that the caregivers in the current study were proactive and action-orientated in seeking out information about their child’s difficulties. However, they also reported that there was a lack of knowledge across health, education and society in general regarding FASD. Caregivers reported that previous health professionals and teachers had not listened to their concerns about their child’s difficulties. Schools had limited support options for their child, and that any support offered was inappropriately tailored and only short-term in nature. This finding is not specific to an Australian context, the lack of available professional development training in FASD across educational settings (Clark et al., 2014), desire for increased professional development (Boys et al., 2016) and a lack of specific guidance regarding how best to educate children with FASD (Carpenter, 2011) has been documented across Canada, USA and the UK. Caregivers proposed that this underpinned the failure to develop appropriate intervention programs, a finding that supports previous work from the USA (Petrenko et al., 2014). An interesting contextual difference appeared in the current study around the accessing of services by caregivers both pre-and post-diagnosis. While the majority of caregivers had accessed previous services either through the public health system or via private health care providers to obtain help for the child in their care, caregivers had found these consultations had been of limited utility. Nine of the ten children had been given a developmental-behavioural diagnosis prior to accessing the Child Development Service and general advice around parenting had been provided. However, the lack of recognition of FASD and specificity around managing children with FASD left caregivers still in need of more support. Notably, the majority of caregivers reported that they had not accessed additional services following diagnosis. This pattern of help seeking differs in a number of ways from other evaluations of FASD diagnostic processes. For example, Astley (2014) report that 89% of families reported being “somewhat to very successful” in accessing the recommended intervention services and 96% of those families found that the recommended services met “some to all of their needs” (pg. 97). Comparatively, caregivers in the current study struggled with finding support and relevant services post-diagnosis. This may be due, in part, to the structure of the Australian health system, where differing levels of support are provided depending on a child’s diagnosis and where the impairments associated with FASD are yet to be recognised. Thus, the current failure to classify FASD as a disability has contributed to a lack of FASD specific services across health and education settings. The cost associated with FASD has been estimated to be approximately 1.8 billion Canadian dollars per year (1.3 billion as the lowest to 2.3 billion as the upper estimate) (Popova, Lange, Burd, & Rehm, 2015). A strong case can be made on the basis of these estimates, for further development of appropriate diagnostic services and additional services provided across health and education for individuals with FASD in Australia. The third over-arching theme was directly related to caregivers’ experiences of the assessment process itself, where feelings of satisfaction and empowerment were attributed to the quality of the clinical service. Caregivers felt validated by the diagnostic process often after a long history of searching for answers from other health professional, a finding reported by caregivers of children with a range of disabilities (Green, 2007). This supports previous research, which highlights the importance of professionals in acknowledging caregivers’ efforts and providing encouragement and empowerment to caregivers through strengths-based feedback (Srivastava, Stone, & Murphy, 2005). 4.1. Limitations and future directions As with other qualitative studies, the question of generalizability needs to be considered. Notably, caregivers in the current sample were not the biological parents of their child. Children with FASD are overrepresented in the foster care system (Ospina & Dennett, 2013), making the findings of the current study particularly relevant to the large non-biological caregiver population. However, this does also limit the findings as some experiences may vary depending on caregiver status. Whilst there are similarities in the difficulties facing biological and non-biological caregivers (e.g., Paley et al., 2006; Petrenko et al., 2014), there are also important differences. For example, foster/adoptive parents report higher levels of stress compared to biological parents, while many biological parents report feelings of guilt and judgement by others (e.g., Paley et al., 2006; Salmon, 2008). Findings from this initial study have laid the groundwork for future research to develop a deeper understanding of the difficulties faced by caregivers, to assist the development and expansion of services in Australia to enable the best possible support for all families. 5. Conclusions Overall, caregivers reported a positive assessment experience, with high levels of satisfaction and feelings of empowerment related to their involvement with a specialist diagnostic service established within a health service. However, caregivers also reported a lack of knowledge and understanding from other health professionals, a lack of knowledge and support from Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007

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the education system and systematic discrimination through the absence of recognition of FASD as a disability. These are all essential areas that need to be considered in the development of evidence-based policy in Australia. Acknowledgements The authors would like to sincerely thank all the families who participated in the research and all the staff at the Southport Child Development Service who have supported the research study, your time and effort is much appreciated. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. References Astley, S. J. (2004). Diagnostic guide for fetal alcohol spectrum disorders: the 4-digit code (3rd ed.). Seattle, Washington: Fetal alcohol syndrome diagnostic and precention network. Astley, S. J. (2010). 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Please cite this article in press as: Chamberlain, K., et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities (2016), http://dx.doi.org/10.1016/j.ridd.2016.06.007