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Family Functioning in Families with a Child with Down Syndrome: A Mixed Methods Approach

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Title: Family Functioning in Families with a Child with Down Syndrome: A Mixed Methods Approach
Language: English
Authors: Povee, K., Roberts, L., Bourke, J., Leonard, H.
Source: Journal of Intellectual Disability Research. Oct 2012 56(10):961-973.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 13
Publication Date: 2012
Document Type: Journal Articles
Reports - Research
Descriptors: Behavior Problems, Foreign Countries, Down Syndrome, Family Relationship, Pervasive Developmental Disorders, Caregivers, Children, Adolescents, Young Adults, Correlation, Marital Satisfaction, Comparative Analysis, Mental Retardation, Predictor Variables, Questionnaires, Age Differences, Gender Differences, Socioeconomic Status, Educational Attainment, Coping
Geographic Terms: Australia
DOI: 10.1111/j.1365-2788.2012.01561.x
ISSN: 0964-2633
Abstract: Background: This study aimed to explore the factors that predict functioning in families with a child with Down syndrome using a mixed methods design. The quantitative component examined the effect of maladaptive and autism-spectrum behaviours on the functioning of the family while the qualitative component explored the impact of having a child with Down syndrome on family holidays, family activities and general family functioning. Methods: Participants in this study were 224 primary caregivers of children with Down syndrome aged 4-25 years (57.1% male; 42.9% female) currently residing in Western Australia (74.0% in metropolitan Perth and 26.0% in rural Western Australia). Results: Maladaptive and autism-spectrum behaviour were associated with poorer family functioning. Mean total scores on the measures of family functioning and marital adjustment were comparable to that of families of typically developing children. Consistent with the quantitative findings, normality was the most common theme to emerge in the qualitative data. Child problem behaviours were also identified by parents/carers as having a negative impact on the family. Conclusions: This study has implications for the development of programs to support families with a child with Down syndrome and may dispel some of the myths surrounding the impact of intellectual disability on the family. (Contains 4 tables and 1 figure.)
Abstractor: As Provided
Number of References: 43
Entry Date: 2012
Accession Number: EJ979220
Database: ERIC
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  Value: <anid>AN0079958136;eul01oct.12;2019Jun04.10:27;v2.2.500</anid> <title id="AN0079958136-1">Family functioning in families with a child with Down syndrome: a mixed methods approach. </title> <p>Background  This study aimed to explore the factors that predict functioning in families with a child with Down syndrome using a mixed methods design. The quantitative component examined the effect of maladaptive and autism‐spectrum behaviours on the functioning of the family while the qualitative component explored the impact of having a child with Down syndrome on family holidays, family activities and general family functioning. Methods  Participants in this study were 224 primary caregivers of children with Down syndrome aged 4–25 years (57.1% male; 42.9% female) currently residing in Western Australia (74.0% in metropolitan Perth and 26.0% in rural Western Australia). Results  Maladaptive and autism‐spectrum behaviour were associated with poorer family functioning. Mean total scores on the measures of family functioning and marital adjustment were comparable to that of families of typically developing children. Consistent with the quantitative findings, normality was the most common theme to emerge in the qualitative data. Child problem behaviours were also identified by parents/carers as having a negative impact on the family. Conclusions  This study has implications for the development of programs to support families with a child with Down syndrome and may dispel some of the myths surrounding the impact of intellectual disability on the family.</p> <p>Keywords: family functioning; maladaptive behaviour; marital adjustment; Down syndrome</p> <p>The impact of disability on the family unit represents a substantive and salient theme in current family research ([<reflink idref="bib1" id="ref1">1</reflink>]). Early research on the impact of having a child with an intellectual disability (ID) on the family reflected a pathological model whereby couples and the family as a whole were assumed to experience inevitable negative impacts ([<reflink idref="bib7" id="ref2">7</reflink>]; [<reflink idref="bib32" id="ref3">32</reflink>]). Societal changes in the meanings assigned to disability have greatly influenced research on the families of children with an ID, with contemporary research reflecting a wide variety of family responses to disability capturing family strengths, adaptation and resilience ([<reflink idref="bib32" id="ref4">32</reflink>]; [<reflink idref="bib1" id="ref5">1</reflink>]). Families that include a child with an ID do however face unique challenges. The increased emotional, physical and financial demands can have a profound impact on the functioning and well‐being of the family ([<reflink idref="bib9" id="ref6">9</reflink>]). One factor believed to influence family functioning is the type of ID ([<reflink idref="bib7" id="ref7">7</reflink>]; [<reflink idref="bib21" id="ref8">21</reflink>]) with families with a child with autism experiencing greater family stress than those with a child with Down syndrome ([<reflink idref="bib35" id="ref9">35</reflink>]).</p> <hd id="AN0079958136-2">Down syndrome advantage</hd> <p>Down syndrome is the single most common biological cause of ID ([<reflink idref="bib2" id="ref10">2</reflink>]). In Western Australia each year it is estimated that 1.11 per 1000 live births are babies with Down syndrome, representing approximately 14% of all cases of ID receiving services from the Western Australian Disability Services Commission ([<reflink idref="bib2" id="ref11">2</reflink>]; [<reflink idref="bib40" id="ref12">40</reflink>]). In comparison to families of children with other disabilities, families of children with Down syndrome have been reported to have lower levels of divorce and greater family coping and functioning ([<reflink idref="bib7" id="ref13">7</reflink>]; [<reflink idref="bib21" id="ref14">21</reflink>]; [<reflink idref="bib42" id="ref15">42</reflink>]). This phenomenon, known as the 'Down syndrome advantage', has been attributed to factors relating both to the child and characteristics associated with the syndrome ([<reflink idref="bib5" id="ref16">5</reflink>]; [<reflink idref="bib20" id="ref17">20</reflink>]). Greater responsiveness to people and social competence, the use of language and fewer behavioural problems are believed to elicit positive responses from parents and other caregivers ([<reflink idref="bib21" id="ref18">21</reflink>]). In addition, increased maternal age, as found in this population, is associated with higher levels of education, reduced financial stress and greater child rearing experience, possibly better equipping parents to cope with a child with an ID ([<reflink idref="bib5" id="ref19">5</reflink>]; [<reflink idref="bib21" id="ref20">21</reflink>]). When the families of children with Down syndrome are compared to families of typically developing children, the Down syndrome advantage diminishes ([<reflink idref="bib21" id="ref21">21</reflink>]). Families with a child with Down syndrome report higher levels of stress, adjustment difficulties and poorer coping when compared to families of non‐disabled children ([<reflink idref="bib35" id="ref22">35</reflink>]; [<reflink idref="bib20" id="ref23">20</reflink>]). These families also report less family participation in activities, greater financial and caretaking burden, and view their children as having more negative characteristics when compared to parents of typically developing children ([<reflink idref="bib33" id="ref24">33</reflink>]; [<reflink idref="bib35" id="ref25">35</reflink>]).</p> <hd id="AN0079958136-3">Predictors of family functioning and the Down syndrome phenotype</hd> <p>The presence of behavioural problems in the child with Down syndrome has been identified as a predictor of poor family functioning in families with a child with Down syndrome ([<reflink idref="bib39" id="ref26">39</reflink>]). Not only are children with Down syndrome more likely to show higher rates of behavioural problems than non‐disabled children, these behaviours tend to have characteristics specific to the syndrome, the Down syndrome behavioural phenotype ([<reflink idref="bib14" id="ref27">14</reflink>]; [<reflink idref="bib16" id="ref28">16</reflink>]). The phenotype includes the propensity to engage in certain maladaptive behaviours that serve an avoidant and attention‐seeking function (stubbornness and disobedience; oppositionality and aggression in childhood with reduced sociability and withdrawal in adolescence) and routinised, compulsive behaviours ([<reflink idref="bib14" id="ref29">14</reflink>]; [<reflink idref="bib18" id="ref30">18</reflink>]). The presence of repetitive, ritualistic and compulsive like behaviour is also characteristic of the Down syndrome phenotype, with a subgroup of individuals meeting the diagnostic criteria for an autistic‐spectrum disorder ([<reflink idref="bib18" id="ref31">18</reflink>]; [<reflink idref="bib31" id="ref32">31</reflink>]). Autistic‐spectrum disorder in people with Down syndrome is characterised by anxious behaviour, social withdrawal and severe complex and bizarre stereotypy ([<reflink idref="bib6" id="ref33">6</reflink>]; [<reflink idref="bib31" id="ref34">31</reflink>]). Other factors identified in the literature that influence family functioning in families with a child with Down syndrome are low functional ability ([<reflink idref="bib39" id="ref35">39</reflink>]), younger age ([<reflink idref="bib15" id="ref36">15</reflink>]), gender ([<reflink idref="bib31" id="ref37">31</reflink>]) and the socio‐economic status (SES) of the family ([<reflink idref="bib7" id="ref38">7</reflink>]).</p> <hd id="AN0079958136-4">Aims, research questions and hypotheses</hd> <p>This study aimed to explore the factors associated with family functioning in families with a child with Down syndrome (aged up to 25 years) using a combination of quantitative and qualitative approaches. The overarching research question for this study was: <emph>What is the impact of having a child with Down syndrome on family functioning?</emph> The aim of the quantitative component of the study was to determine the factors that are associated with family functioning in families with a child with Down syndrome. It was hypothesised that maladaptive behaviour and autism‐spectrum behaviour would be negatively associated with family functioning and marital adjustment, after controlling for age, gender, functional ability and SES. The aim of the qualitative component of this study was to explore the impact of having a child with Down syndrome on aspects of family functioning relating to family holidays, activities and general family functioning.</p> <hd id="AN0079958136-5">Methods</hd> <p></p> <hd id="AN0079958136-6">Participants</hd> <p>Five hundred parents/carers of children with Down syndrome registered with the Disability Services Commission of Western Australia were sent letters of invitation to participate in the Down syndrome Needs, Opinions, and Wishes (NOW) study, a large project which assessed the medical, educational, social and functional status of children and young people with Down syndrome aged up to 25 years. Three hundred and sixty‐three completed one of two versions of the questionnaire (the long form or the short form), giving a response fraction of approximately 73%. Of the 363, 107 participants did not meet the research criteria for this specific study as the child with Down syndrome was aged below 4 years (<emph>n</emph> = 45) or they completed the short form of the questionnaire (<emph>n</emph> = 62), a reduced version which did not include the behavioural and family measures. The final sample for this study consisted of 224 primary carers of individuals with Down syndrome residing in Western Australia (74% from metropolitan Perth, 26% from rural Western Australia) who had completed the relevant parts of the questionnaire. Of the respondents, 78% were in a married or de facto relationship. Half (51%) of families were in the low income bracket (annual income less than $55 000), 18% in the middle income bracket (annual income $52 000 to $77 999), 22% in the high income bracket (annual income more than $78 000) and 9% did not disclose their income. Both parents worked in 55% of families, just the father in 35% of families, just the mother in 3% of families and neither parent in 7% of families. Mother's level of education was 'some high school' for 27%, 'trade or diploma' for 42% and 'degree or higher' for 31%. The ages of the children with Down syndrome ranged from 4 to 25 years (mean = 13.68 years, SD = 5.90), and 57% were male. Five per cent of the children had no siblings, 20% had one sibling, 34% had two siblings, 21% had three siblings and 20% had four or more siblings.</p> <hd id="AN0079958136-7">Questionnaire and measures</hd> <p>The Princess Margaret Hospital Ethics Committee, Western Australia, granted ethical approval for the Down syndrome NOW study. The multidimensional Down syndrome NOW questionnaire assessed the medical, educational, social and functional status and needs of children and young adults with Down syndrome. Only the measures of interest for this study are reported. Marital adjustment was assessed using the one‐dimensional, seven‐item Abbreviated Spanier Dyadic Adjustment Scale (ADAS; [<reflink idref="bib38" id="ref39">38</reflink>]). The items create a total marital adjustment score ranging from 0 to 36 with higher scores reflecting greater marital adjustment. The mean score for the ADAS in the general population is 22.5 ([<reflink idref="bib38" id="ref40">38</reflink>]). The ADAS is a reliable measure, α = 0.76–0.82; ([<reflink idref="bib38" id="ref41">38</reflink>]; [<reflink idref="bib23" id="ref42">23</reflink>]). An adjusted version of the McMaster Family Assessment Device (FAD; [<reflink idref="bib13" id="ref43">13</reflink>]) was used to assess family functioning. The 12 'general functioning' items from the original 53‐item measure were used to provide global assessment of family functioning ([<reflink idref="bib4" id="ref44">4</reflink>]). Mean scores were calculated to provide a final score ranging from 1.00 to 4.00, with higher scores indicating poorer family functioning ([<reflink idref="bib4" id="ref45">4</reflink>]). The mean score for the general functioning sub‐scale of the FAD in the general population is 1.75 to 2.20 ([<reflink idref="bib13" id="ref46">13</reflink>]; [<reflink idref="bib4" id="ref47">4</reflink>]). The FAD is reliable, α = 0.83–0.92 ([<reflink idref="bib13" id="ref48">13</reflink>]; [<reflink idref="bib4" id="ref49">4</reflink>]; [<reflink idref="bib24" id="ref50">24</reflink>]). Maladaptive behaviour was measured using an adapted version of the Developmental Behaviour Checklist (DBC) devised by [<reflink idref="bib10" id="ref51">10</reflink>]). The 96‐item DBC scale is a multidimensional measure consisting of five sub‐scales: disruptive, self‐absorbed, language deviance, anxiety relating and antisocial ([<reflink idref="bib10" id="ref52">10</reflink>]). A total score, ranging from 0 to 192, was generated with higher scores indicating greater behavioural and emotional disturbance ([<reflink idref="bib10" id="ref53">10</reflink>]). In a longitudinal study exploring psychopathology in children with Down syndrome aged 4 to 18 years (mean = 11.71 years), the mean total DBC score was 31.29 ([<reflink idref="bib41" id="ref54">41</reflink>]). The overall DBC measure has good test–retest reliability (α = 0.83; [<reflink idref="bib10" id="ref55">10</reflink>]). The Social Communication Questionnaire (SCQ; [<reflink idref="bib34" id="ref56">34</reflink>]) was used to assess autism‐spectrum behaviours. The SCQ is comprised of 40 items that address three areas of functioning; language and communication, repetitive and stereotyped patterns of behaviour and reciprocal social interaction ([<reflink idref="bib34" id="ref57">34</reflink>]). Total SCQ scores ranged from 0 to 39, with higher scores reflecting greater autism‐spectrum behaviours. The mean total SCQ score in a population of people with ID was 12.75 ([<reflink idref="bib34" id="ref58">34</reflink>]). The SCQ is a reliable measure (α = 0.84–0.93; [<reflink idref="bib34" id="ref59">34</reflink>]).</p> <p>This study had four control variables: the age, gender and functional ability of the child with Down syndrome and the SES of the family. Age, gender of the child and SES (gross parental income) were assessed using single items. Functional ability was measured using an adapted version of the Functional Independence Measure for Children (WeeFIM; [<reflink idref="bib29" id="ref60">29</reflink>]). This is an 18‐item, multidimensional measure that assesses the typical performance in self‐care, sphincter control, transfers, locomotion, communication and social cognition ([<reflink idref="bib28" id="ref61">28</reflink>]). Possible scores range from 18 to 126 with a higher score indicating greater functional ability. The WeeFIM is reliable with a test–retest intraclass correlation coefficient of 0.98 for children with disabilities ([<reflink idref="bib30" id="ref62">30</reflink>]).</p> <hd id="AN0079958136-8">Statistical analysis</hd> <p>A univariate analysis examining each predictor variable individually against each dependent variable (FAD and ADAS) was conducted. This was followed by separate multiple regression analyses with FAD and ADAS as the outcomes of interest and DBC and SCQ as predictor variables, with income retained in the model.</p> <hd id="AN0079958136-9">Qualitative measures</hd> <p>As part of the Down syndrome NOW questionnaire, participants had the opportunity to provide short, written responses to the following statements: 'Describe the impact (if any) of having a child with Down syndrome on family activities', 'Describe the impact (if any) of having a child with Down syndrome on family holidays' and 'Write any comments about other ways in which having a child with Down syndrome has affected your family'. Four lines were provided for responses to each question. Thematic analysis was undertaken using the method described by [<reflink idref="bib3" id="ref63">3</reflink>]). Names were replaced with pseudonyms to protect participants' identity.</p> <hd id="AN0079958136-10">Results</hd> <p>The mean total score for the FAD (the measure of family functioning) of 1.93 (SD = 0.39, range 1.08–2.94) indicates healthy family functioning in families with a child with Down syndrome ([<reflink idref="bib13" id="ref64">13</reflink>]). The total DBC varied from 0 to 106 (mean 35.66, SD = 22.71) and the mean and standard deviation for sub‐scale scores of the DBC, SCQ and WeeFIM are presented by age group (Table 1) and gender (Table 2). The relationship between DBC and age group was not linear with greater maladaptive behaviour in the younger age groups (4–9 years, mean = 39.94 and 10–14 years, mean = 40.57). There were 59 children (26.3%) who had a DBC score equal or greater than 46 which is the suggested cut‐off for clinical investigation. Similarly, SCQ scores show a non‐linear relationship with age group with the highest scores in the 10–14 years (mean = 12.71) and 15–19 years (mean = 12.47) (Table 1). There were 60 children (26.8%) who scored 15 or greater, which is the SCQ clinical cut‐off. Thirty‐eight children (16.9%) had DBC and SCQ scores that both exceeded the clinical cut‐off. There was no difference in DBC total score by gender (<emph>P</emph> = 0.623); however, the SCQ total score was significantly higher for boys (mean = 12.27) compared with girls (mean = 9.88, <emph>P</emph> = 0.003).</p> <p>1 Distribution of child measures of Social Communication Questionnaire (SCQ), Disruptive Behaviour Checklist (DBC) and Functional Independence Measure for Children (WeeFIM) by age group</p> <p> <ephtml> <table><thead valign="bottom"><tr><th /><th><bold>Range of measure</bold></th><th align="center"><bold>4–9 years</bold></th><th align="center"><bold>10–14 years</bold></th><th align="center"><bold>15–19 years</bold></th><th align="center"><bold>20–25 years</bold></th></tr><tr><th><bold>Mean</bold></th><th><bold>SD</bold></th><th><bold>Mean</bold></th><th><bold>SD</bold></th><th><bold>Mean</bold></th><th><bold>SD</bold></th><th><bold>Mean</bold></th><th><bold>SD</bold></th></tr></thead><tbody valign="top"><tr><td>SCQ</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>0–39</td><td>10.68</td><td>4.92</td><td>12.71</td><td>6.47</td><td>12.47</td><td>6.71</td><td>8.91</td><td>5.74</td></tr><tr><td> Language and communication</td><td>0–13</td><td>3.23</td><td>2.00</td><td>4.71</td><td>2.40</td><td>5.06</td><td>2.38</td><td>3.83</td><td>2.37</td></tr><tr><td> Repetitive and stereotyped patterns behaviour</td><td>0–8</td><td>3.17</td><td>2.08</td><td>3.29</td><td>2.07</td><td>2.53</td><td>2.17</td><td>1.96</td><td>1.98</td></tr><tr><td> Reciprocal social interaction</td><td>0–15</td><td>3.49</td><td>2.34</td><td>4.21</td><td>3.41</td><td>4.37</td><td>3.61</td><td>2.74</td><td>2.84</td></tr><tr><td>DBC</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>0–192</td><td>39.94</td><td>20.49</td><td>40.57</td><td>26.19</td><td>34.24</td><td>22.87</td><td>26.91</td><td>20.45</td></tr><tr><td> Disruptive</td><td>0–54</td><td>12.81</td><td>7.80</td><td>12.48</td><td>8.45</td><td>9.08</td><td>7.28</td><td>8.30</td><td>7.19</td></tr><tr><td> Self‐absorbed</td><td>0–62</td><td>13.17</td><td>7.45</td><td>11</td><td>9.54</td><td>8.90</td><td>7.52</td><td>6.15</td><td>7.21</td></tr><tr><td> Language deviance</td><td>0–26</td><td>5.25</td><td>3.68</td><td>6.72</td><td>4.08</td><td>6.25</td><td>4.61</td><td>4.78</td><td>3.83</td></tr><tr><td> Anxiety‐relating</td><td>0–18</td><td>4.30</td><td>2.81</td><td>4.12</td><td>2.95</td><td>3.59</td><td>2.99</td><td>2.85</td><td>2.53</td></tr><tr><td> Antisocial</td><td>0–20</td><td>3.10</td><td>2.50</td><td>3.37</td><td>3.20</td><td>4.49</td><td>3.41</td><td>3.13</td><td>2.87</td></tr><tr><td>WeeFIM</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>18–126</td><td>78.64</td><td>19.15</td><td>99.09</td><td>18.08</td><td>100.88</td><td>22.21</td><td>109.88</td><td>18.72</td></tr></tbody></table> </ephtml> </p> <p>1 Higher SCQ scores indicate greater autism‐spectrum behaviours. Higher DBC scores indicated greater behavioural and emotional disturbance. Higher WeeFIM scores indicate greater functional ability.</p> <p>2 Distribution of child measures of Social Communication Questionnaire (SCQ), Disruptive Behaviour Checklist (DBC) and Functional Independence Measure for Children (WeeFIM) by gender</p> <p> <ephtml> <table><thead valign="bottom"><tr><th /><th><bold>Range of scale</bold></th><th align="center"><bold>Female</bold></th><th align="center"><bold>Male</bold></th><th align="center"><bold>Total</bold></th></tr><tr><th><bold>Mean</bold></th><th><bold>SD</bold></th><th><bold>Mean</bold></th><th><bold>SD</bold></th><th><bold>Mean</bold></th><th><bold>SD</bold></th></tr></thead><tbody valign="top"><tr><td>SCQ</td><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>0–39</td><td>9.88</td><td>5.45</td><td>12.27</td><td>6.34</td><td>11.26</td><td>6.09</td></tr><tr><td> Language and communication</td><td>0–13</td><td>3.81</td><td>2.08</td><td>4.41</td><td>2.56</td><td>4.25</td><td>2.43</td></tr><tr><td> Repetitive and stereotyped patterns of behaviour</td><td>0–8</td><td>2.55</td><td>2.04</td><td>3.00</td><td>2.18</td><td>2.78</td><td>2.09</td></tr><tr><td> Reciprocal social interaction</td><td>0–15</td><td>3.14</td><td>2.88</td><td>4.16</td><td>3.18</td><td>3.70</td><td>3.08</td></tr><tr><td>DBC</td><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>0–192</td><td>35.25</td><td>22.44</td><td>36.79</td><td>23.62</td><td>35.66</td><td>22.71</td></tr><tr><td> Disruptive</td><td>0–54</td><td>10.61</td><td>7.58</td><td>11.20</td><td>8.22</td><td>10.88</td><td>7.89</td></tr><tr><td> Self‐absorbed</td><td>0–62</td><td>9.27</td><td>7.38</td><td>10.89</td><td>9.01</td><td>9.86</td><td>8.19</td></tr><tr><td> Language deviance</td><td>0–26</td><td>5.91</td><td>4.12</td><td>5.65</td><td>4.08</td><td>5.78</td><td>4.00</td></tr><tr><td> Anxiety‐relating</td><td>0–18</td><td>3.94</td><td>2.98</td><td>3.69</td><td>2.79</td><td>3.68</td><td>2.83</td></tr><tr><td> Antisocial</td><td>0–20</td><td>3.50</td><td>3.00</td><td>3.62</td><td>3.04</td><td>3.55</td><td>3.04</td></tr><tr><td>WeeFIM</td><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>18–126</td><td>96.98</td><td>20.00</td><td>94.10</td><td>24.59</td><td>95.34</td><td>22.72</td></tr></tbody></table> </ephtml> </p> <p>2 Higher SCQ scores indicate greater autism‐spectrum behaviours. Higher DBC scores indicated greater behavioural and emotional disturbance. Higher WeeFIM scores indicate greater functional ability.</p> <hd id="AN0079958136-11">Family functioning (McMaster Family Assessment Device)</hd> <p>In the univariate analysis, family functioning was affected little by child gender (<emph>P</emph> = 0.769), age (<emph>P</emph> = 0.847) and functional ability (<emph>P</emph> = 0.109; Table 3). However, compared with the low income group, both middle (<emph>P</emph> = 0.018) and high (<emph>P</emph> = 0.009) income groups showed lower FAD scores indicating better family functioning. Higher FAD scores indicating poorer family functioning were seen in families with a child with greater behavioural problems and this was seen across all behavioural sub‐scales (Table 3). Similarly, higher SCQ scores indicating more autism‐spectrum behaviours was related to poorer family functioning (Table 3). In the multivariate model, which included family income, higher DBC scores were associated with poorer family functioning (an increase of 0.029 for each single point increase in DBC, <emph>P</emph> = 0.038) and this remained for the anxiety‐relating (<emph>P</emph> = 0.002), language deviance (<emph>P</emph> = 0.034) and antisocial subscores (<emph>P</emph> = 0.023). Higher SCQ scores were also associated with poorer family functioning (Table 3).</p> <p>3 McMaster Family Assessment Device (FAD)* according to child and family characteristics</p> <p> <ephtml> <table><thead valign="bottom"><tr><th /><th><italic><bold>n</bold></italic></th><th align="center"><bold>Univariate model</bold></th><th align="center"><bold>Multivariate model</bold></th></tr><tr><th><bold>Effect size [95% CI]</bold></th><th><bold><italic>P</italic>‐value</bold></th><th><bold>Effect size [95% CI]</bold></th><th><bold><italic>P</italic>‐value</bold></th></tr></thead><tbody valign="top"><tr><td>SCQ</td><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>212</td><td>0.124 [0.032, 0.216]</td><td>0.008</td><td>0.122 [0.020, 0.224]</td><td>0.019</td></tr><tr><td>DBC</td><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>211</td><td>0.038 [0.012, 0.066]</td><td>0.005</td><td>0.029 [0.002, 0.057]</td><td>0.038</td></tr><tr><td> Disruptive</td><td>211</td><td>0.082 [0.003, 0.161]</td><td>0.042</td><td>0.058 [−0.022, 0.139]</td><td>0.155</td></tr><tr><td> Self‐absorbed</td><td>211</td><td>0.087 [0.012, 0.162]</td><td>0.024</td><td>0.059 [−0.019, 0.138]</td><td>0.136</td></tr><tr><td> Language deviance</td><td>211</td><td>0.204 [0.051, 0.358]</td><td>0.009</td><td>0.167 [0.013, 0.321]</td><td>0.034</td></tr><tr><td> Anxiety‐relating</td><td>211</td><td>0.419 [0.204, 0.634]</td><td><0.0001</td><td>0.354 [0.135, 0.573]</td><td>0.002</td></tr><tr><td> Antisocial</td><td>211</td><td>0.291 [0.085, 0.497]</td><td>0.006</td><td>0.240 [0.033, 0.447]</td><td>0.023</td></tr><tr><td>WeeFIM</td><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>210</td><td>−0.0228 [−.051, 0.005]</td><td>0.109</td><td /><td /></tr><tr><td>Age of child</td><td>214</td><td>−0.01 [−0.118, 0.097]</td><td>0.847</td><td /><td /></tr><tr><td>Gender of child</td><td /><td /><td /><td /><td /></tr><tr><td> Male</td><td>121</td><td>Baseline</td><td /><td /><td /></tr><tr><td> Female</td><td>93</td><td>0.190 [−1.086, 1.466]</td><td>0.769</td><td /><td /></tr><tr><td>Mothers education</td><td /><td /><td /><td /><td /></tr><tr><td> Primary/some high</td><td>56</td><td>Baseline</td><td /><td /><td /></tr><tr><td> Trade/diploma</td><td>90</td><td>−0.242 [−1.787, 1.303]</td><td>0.758</td><td /><td /></tr><tr><td> Graduate</td><td>61</td><td>0.790 [−0.890, 2.470]</td><td>0.355</td><td /><td /></tr><tr><td>Family income</td><td /><td /><td /><td /></tr><tr><td> Low</td><td>110</td><td>Baseline</td><td /><td /><td /></tr><tr><td> Middle</td><td>40</td><td>−2.025 [−3.695, −0.355]</td><td>0.018</td><td /><td /></tr><tr><td> High</td><td>47</td><td>−2.106 [−3.683, −0.530]</td><td>0.009</td><td /><td /></tr><tr><td> Missing</td><td>17</td><td>0.706 [−1.652, 3.064]</td><td>0.556</td><td /><td /></tr></tbody></table> </ephtml> </p> <ulist> <item>3 *  Higher FAD scores indicate poorer family functioning. Multiple regression analyses were conducted where dependent variable = family functioning (FAD), independent variables = autism spectrum behaviour (SCQ) and maladaptive behaviours (DBC) and family income was included in the models.</item> <item>4 CI, confidence interval; DBC, Disruptive Behaviour Checklist; SCQ, Social Communication Questionnaire; WeeFIM, Functional Independence Measure for Children.</item> </ulist> <hd id="AN0079958136-12">Marital adjustment (Abbreviated Spanier Dyadic Adjustment Scale)</hd> <p>The child's gender (<emph>P</emph> = 0.442), age (<emph>P</emph> = 0.193) and functioning (<emph>P</emph> = 0.551) had little association with marital adjustment as measured by the ADAS (Table 4). However, increasing income was associated with improved marital adjustment, particularly when the middle income group was compared with the low income group (<emph>P</emph> = 0.025). Higher DBC scores were not associated with lower ADAS scores (<emph>P</emph> = 0.191) (Table 4).</p> <p>4 Agreement with Partner (ADAS)* according to child and family characteristics</p> <p> <ephtml> <table><thead valign="bottom"><tr><th /><th><italic><bold>n</bold></italic></th><th align="center"><bold>Univariate model</bold></th><th align="center"><bold>Multivariate model</bold></th></tr><tr><th><bold>Effect size [95% CI]</bold></th><th><bold><italic>P</italic>‐value</bold></th><th><bold>Effect size [95% CI]</bold></th><th><bold><italic>P</italic>‐value</bold></th></tr></thead><tbody valign="top"><tr><td>SCQ</td><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>176</td><td>−0.072 [−0.212, 0.068]</td><td>0.312</td><td>−0.060 [−0.197, 0.084]</td><td>0.425</td></tr><tr><td>DBC</td><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>175</td><td>−0.025 [−0.063, 0.013]</td><td>0.191</td><td>−0.015 [−0.054, 0.025]</td><td>0.466</td></tr><tr><td> Disruptive</td><td>175</td><td>−0.043 [−0.154, 0.068]</td><td>0.449</td><td>−0.020 [−0.134, 0.094]</td><td>0.727</td></tr><tr><td> Self‐absorbed</td><td>175</td><td>−0.060 [−0.162, 0.042]</td><td>0.245</td><td>−0.031 [−0.138, 0.077]</td><td>0.574</td></tr><tr><td> Language deviance</td><td>175</td><td>−0.162 [−0.373, 0.048]</td><td>0.130</td><td>−0.117 [−0.332, 0.098]</td><td>0.285</td></tr><tr><td> Anxiety‐relating</td><td>175</td><td>−0.284 [−0.585, 0.016]</td><td>0.064</td><td>−0.211 [−0.524, 0.102]</td><td>0.186</td></tr><tr><td> Antisocial</td><td>175</td><td>−0.124 [−0.405, 0.157]</td><td>0.385</td><td>−0.068 [−0.354, 0.217]</td><td>0.636</td></tr><tr><td>WeeFIM</td><td /><td /><td /><td /><td /></tr><tr><td> Total score</td><td>178</td><td>0.011 [−0.0247, 0.046]</td><td>0.551</td><td /><td /></tr><tr><td>Age of child</td><td>179</td><td>0.095</td><td>0.193</td><td /><td /></tr><tr><td>Gender of child</td><td /><td /><td /><td /><td /></tr><tr><td> Male</td><td>103</td><td>Baseline</td><td /><td /><td /></tr><tr><td> Female</td><td>76</td><td>−0.660 [−2.349, 1.029]</td><td>0.442</td><td /><td /></tr><tr><td>Mothers education</td><td /><td /><td /><td /><td /></tr><tr><td> Primary/some high</td><td>41</td><td>Baseline</td><td /><td /><td /></tr><tr><td> Trade/diploma</td><td>78</td><td>0.176 [−1.963, 2.314]</td><td>0.871</td><td /><td /></tr><tr><td> Graduate</td><td>54</td><td>−1.168 [−3.464, 1.129]</td><td>0.317</td><td /><td /></tr><tr><td>Family income</td><td /><td /><td /><td /><td /></tr><tr><td> Low</td><td>85</td><td>Baseline</td><td /><td /><td /></tr><tr><td> Middle</td><td>39</td><td>2.451 [0.308, 4.594]</td><td>0.025</td><td /><td /></tr><tr><td> High</td><td>46</td><td>1.357 [−0.671, 3.385]</td><td>0.188</td><td /><td /></tr><tr><td> Missing</td><td>9</td><td>0.451 [−3.43, 4.334]</td><td>0.819</td><td /><td /></tr></tbody></table> </ephtml> </p> <ulist> <item>5 *  Higher ADAS scores reflect greater marital adjustment. Multiple regression analyses were conducted where dependent variable = marital adjustment (ADAS), independent variables = autism spectrum behaviour (SCQ) and maladaptive behaviours (DBC) and family income was included in the models.</item> <item>6 ADAS, Abbreviated Spanier Dyadic Adjustment Scale; CI, confidence interval; DBC, Disruptive Behaviour Checklist; SCQ, Social Communication Questionnaire; WeeFIM, Functional Independence Measure for Children.</item> </ulist> <hd id="AN0079958136-13">Phase two: qualitative analysis</hd> <p>Five major themes emerged from the data that are encompassed by the broad theme 'Family Functioning'. Family functioning refers to the relationships within the family, including that between the parents, the parents and child with Down syndrome, the parents and the other siblings and as a whole. Family functioning also includes daily family life, the involvement in family activities and family holidays. Figure 1 illustrates the major themes and the relationships between themes. The size of the circles that encompass each major theme represent the number of instances the theme emerged in the data set.</p> <p>MAP: 1 Thematic map illustrating the overarching theme and five major themes.</p> <hd id="AN0079958136-14">Normality</hd> <p>The most common theme to emerge from the data was normality. The majority of parent/carers reported that family life was not being impacted by the presence of a child with Down syndrome. For example: '<emph>No impact</emph> (on family life). <emph>He's not hard to get along with. He walks and talks and can do anything we do. He's just one of us</emph>'. A large number of parents/carers commented that the child with Down syndrome was always included in family activities and family holidays and was described as enjoying the same activities as other family members. Many parents/carers stated that it was important that the child with Down syndrome was included and treated the same as the other children: '<emph>Ellie has always been treated exactly the same as our other children, she has always been included in anything that we do, so I believe no impact</emph> (on the family)'.</p> <hd id="AN0079958136-15">Family coping strategies</hd> <p>Parents/carers described various strategies that helped the family cope with having a child with Down syndrome. Many parents/carers acknowledged the difficulties and challenges of having a child with Down syndrome, but ultimately accepted the child as a part of the family and 'got on with it': '<emph>We take all of our children on an individual basis, and yes our son needs more care and supervision, however his sisters have their own personalities and issues that we have to address as well. This is what families do</emph>'. Family activities were often adapted to suit the child's skills and abilities, energy level, attention span and personal interests. Family holidays were also tailored to consider safety, the care requirements of the child and the child's interests. The friends and the extended family were also identified as a source of support for the families with a child with Down syndrome by providing emotional support for parents and respite.</p> <hd id="AN0079958136-16">Positive impact</hd> <p>Another major theme to emerge from the data was the positive impact of having a child with Down syndrome on family life. One parent's comments illustrate this theme: '<emph>Overall she has enriched and added immensely to our family and we couldn't do without her</emph>'. Some parents/carers stated that the child with Down syndrome shaped their life philosophy and taught them invaluable life lessons (an appreciation for life, re‐evaluating what is important, tolerance and acceptance of difference and the value of patience and selflessness). The child with Down syndrome was also credited to bringing the family closer together, facilitating the formation of new friendships and making family members 'better people' (more caring, empathetic and compassionate).</p> <hd id="AN0079958136-17">Negative impact</hd> <p>While some parents/carers commented on the positive impact, more parents/carers felt that having a child with Down syndrome impacted the family negatively. The most common negative impact to emerge was the impact on siblings. Some parents/carers believed that their other children had less attention, a restricted social life, and were often assigned the role of caretaker of their sibling with Down syndrome: '<emph>My son has helped to bring her up . . . Less time for him to build up own friendships</emph>'. Some parents/carers felt that family life lacked spontaneity and freedom and revolved around meeting the needs of the child with Down syndrome. Lack of appropriate childcare was described as further compounding the problem. Some parents/carers explained that they felt socially isolated. A number of parents/carers felt that the added pressure of having a child with Down syndrome was responsible for their marriage breakdown. Lack of time alone as a couple, increased financial strain and differences in parenting strategies were cited as reasons for marital problems. The cost of special education, medical and therapy appointments, childcare and entertainment for the child with Down syndrome was described by parents/carers as having a major impact on the family's finances. The future care of the child was also identified as a major source of stress.</p> <hd id="AN0079958136-18">Child‐related factors</hd> <p>Parents/carers identified aspects unique to the child with Down syndrome that impacted on the functioning of the family. Some parents/carers described the maladaptive behaviour of the child with Down syndrome as having a negative impact on the family. The child wandering or running away was identified as a major issue during family activities and holidays: '<emph>It is very hard to go places as Dylan tends to run off and not listen. We are always worried he may get lost</emph>'. This restricted family activities, due to safety concerns. Other behavioural problems commonly identified by parents/carers included stubbornness, tantrums, aggressiveness and social inappropriateness. Parents/carers also described autistic‐type behaviours as impacting on the functioning of the family, namely the child's need for routine, limited attention span and anxiety in new and unfamiliar surroundings and situations. The low functional ability of the child with Down syndrome was another factor commonly identified as having a negative impact on the family. The care demands of the child with Down syndrome, including transportation, dressing, feeding and toileting, were described as being stressful and exhausting, a financial burden and limiting the time that could be spent with other family members. Some parents/carers expressed a sense of loss for their 'own life' as the child with Down syndrome would always be dependent. A majority of parents/carers felt that behavioural problems and health concerns reduced and functional ability increased as the child with Down syndrome became older. In contrast, some believed that negative impact on the family was greater as the child got older. This was attributed to the child's need for routine, increased physical strength and continued dependence.</p> <hd id="AN0079958136-19">Discussion</hd> <p>This study was undertaken to explore the functioning of families with a child with Down syndrome in Western Australia using a combination of quantitative and qualitative methodologies. A major finding to emerge was that of 'normal' family functioning. In the current study, the mean total score for the FAD (the measure of family functioning) of 1.93 (SD = 0.39) indicates healthy family functioning in families with a child with Down syndrome ([<reflink idref="bib13" id="ref65">13</reflink>]). This estimate falls within reported mean total scores ranging from 1.75 to 2.20 in the scale validation samples ([<reflink idref="bib13" id="ref66">13</reflink>]; [<reflink idref="bib4" id="ref67">4</reflink>]), suggesting that the functioning of families with a child with Down syndrome is comparable to families of typically developing children. The average total score for the ADAS (the measure of marital adjustment) was 23.92 (SD = 5.49), indicating a high level of marital adjustment and satisfaction ([<reflink idref="bib38" id="ref68">38</reflink>]) that is slightly higher than the validation sample (mean = 22.5; [<reflink idref="bib38" id="ref69">38</reflink>]). Consistent with the quantitative finding of normal family functioning, one common theme to emerge from the qualitative data was normality; having a child with Down syndrome had a minimal or no impact on the family. A sense of normality in family life was generally achieved by accepting the child with Down syndrome and 'getting on with it', with family life adapted and modified to suit the unique needs of the child.</p> <p>This finding of normal family functioning is consistent with previous qualitative research reporting no or minimal disruption to the family ([<reflink idref="bib22" id="ref70">22</reflink>]) and healthy marital relationships comparable to families of developmentally normal children ([<reflink idref="bib33" id="ref71">33</reflink>]; [<reflink idref="bib7" id="ref72">7</reflink>]; [<reflink idref="bib32" id="ref73">32</reflink>]). Previous research has estimated that 65–70% of families with a child with Down syndrome function like most other families ([<reflink idref="bib7" id="ref74">7</reflink>]). However, in Western Australia, this healthy family functioning could be related to the high levels of support available, as families have generally reported satisfaction with most areas of family‐centred care they receive ([<reflink idref="bib43" id="ref75">43</reflink>]). The coping strategies of acceptance and adaptation identified in the current study are consistent with previous research findings that families create a supportive, positive and tailored environment that meets the needs of the child ([<reflink idref="bib25" id="ref76">25</reflink>]). Families view disability as a challenge rather than an insurmountable problem. This is an example of positive reappraisal, whereby families reframe a stressful situation (having a child with an ID) in a positive light ([<reflink idref="bib17" id="ref77">17</reflink>]). Reappraising the situation as a challenge and accepting the child with Down syndrome then calls for the mobilisation of coping efforts ([<reflink idref="bib26" id="ref78">26</reflink>]; [<reflink idref="bib25" id="ref79">25</reflink>]).</p> <p>While normality of family functioning and healthy marital relationships overall emerged as a key finding within this study, we did find that increased presence of maladaptive and autism‐spectrum behaviours was associated with poorer family functioning. Child behavioural difficulties were also described as restricting family life in the qualitative research. Some participants reported negative impacts of having a child with Down syndrome on the family; most commonly the disruption caused to the lives of the siblings. These findings are consistent with previous studies conducted overseas ([<reflink idref="bib39" id="ref80">39</reflink>]; [<reflink idref="bib22" id="ref81">22</reflink>]; [<reflink idref="bib7" id="ref82">7</reflink>]). Furthermore, [<reflink idref="bib43" id="ref83">43</reflink>]) found in their Western Australian study that, although in general families of children with ID were generally satisfied with the standard of care, the provision of psychological support was not adequate. In the current study, there was a strong relationship between low income and poor family functioning. This finding is consistent with previous research conducted by [<reflink idref="bib11" id="ref84">11</reflink>]) that reported that indicators of socio‐economic deprivation were associated with poorer psychological outcomes in mothers of children with ID and that risk of psychiatric disorder in parents of children with cognitive delay is largely related to socio‐economic circumstance ([<reflink idref="bib12" id="ref85">12</reflink>]).</p> <p>The qualitative research also suggested other factors associated with poorer family functioning including experiencing social isolation and loss of friends. The anonymity of our questionnaire study may have resulted in parents being more comfortable about honestly sharing their experiences ([<reflink idref="bib36" id="ref86">36</reflink>]; [<reflink idref="bib27" id="ref87">27</reflink>]; [<reflink idref="bib8" id="ref88">8</reflink>]) and thus more likely to report negative impacts than in previous qualitative studies ([<reflink idref="bib37" id="ref89">37</reflink>]).</p> <p>Maladaptive and autism‐spectrum behaviours in the child appeared to have less impact on marital adjustment. However, in the qualitative research, marriage breakdown was attributed by some respondents to the added pressure of having a child with a disability. This divergence between qualitative and quantitative findings could be explained by the exclusion of parents without current partners from the quantitative data.</p> <hd id="AN0079958136-20">Study limitations and strengths</hd> <p>A major strength of this study was the triangulation of methodologies within a mixed methods design using a large, representative sample. However, a limitation of this study was the use of open‐ended questions in a self‐administered survey, removing the ability to probe for more complete answers or ask additional follow‐up questions ([<reflink idref="bib8" id="ref90">8</reflink>]). In addition, the qualitative questions required the participants to comment on very specific domains (family holidays, family activities and general family functioning) and may not have captured the full breath of family functioning in this population. Despite these limitations, the strengths of this format must not be overlooked. Self‐administered mail surveys have been shown to enhance the respondent's sense of anonymity and elicit more truthful and less socially desirable answers ([<reflink idref="bib8" id="ref91">8</reflink>]). As a result, the views and attitudes expressed by the parents/carers in the current study are more likely to be representative of the experiences of families with a child with Down syndrome.</p> <hd id="AN0079958136-21">Future directions</hd> <p>There is variability in functioning of families with a child with Down syndrome. However, as we, in this study, and others ([<reflink idref="bib11" id="ref92">11</reflink>]; [<reflink idref="bib12" id="ref93">12</reflink>]) have shown, those who are disadvantaged are particularly at risk. Policymakers and service providers need to be aware of the specific support needs of such families who may not have the advocacy skills often required today to obtain the services they and their children need. Future research could benefit by investigating the coping strategies and environmental supports used by the subgroup of disadvantaged parents of children with ID who are functioning well.</p> <hd id="AN0079958136-22">Implications</hd> <p>The current study adds to our understanding of the impact of having a child with Down syndrome on the family unit. In this study, child behavioural problems were associated with poorer family functioning. Parents/carers will benefit from a service that equips them with cognitive and behavioural strategies to manage behavioural problems. Family‐centred services that provide parents/carers with effective coping strategies, such as adapting to meet the needs of their child may also be useful. This study may also have an important role in dispelling some of the myths that surround the functioning of families with a child with Down syndrome. The overriding impression of normality among the families in the current study strongly contradicts the historical views that having a child with an ID is a tragedy and inevitably detrimental to couples and families ([<reflink idref="bib19" id="ref94">19</reflink>]; [<reflink idref="bib32" id="ref95">32</reflink>]).</p> <hd id="AN0079958136-23">Acknowledgements</hd> <p>We gratefully acknowledge all the families who have participated in the Western Australian Down syndrome NOW study and thank them for their ongoing commitment. We thank the Disability Services Commission and Down Syndrome WA for their wonderful support. 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  Data: Family Functioning in Families with a Child with Down Syndrome: A Mixed Methods Approach
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  Data: <searchLink fieldCode="AR" term="%22Povee%2C+K%2E%22">Povee, K.</searchLink><br /><searchLink fieldCode="AR" term="%22Roberts%2C+L%2E%22">Roberts, L.</searchLink><br /><searchLink fieldCode="AR" term="%22Bourke%2C+J%2E%22">Bourke, J.</searchLink><br /><searchLink fieldCode="AR" term="%22Leonard%2C+H%2E%22">Leonard, H.</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+Disability+Research%22"><i>Journal of Intellectual Disability Research</i></searchLink>. Oct 2012 56(10):961-973.
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  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
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  Data: Y
– Name: Pages
  Label: Page Count
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  Data: 13
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  Data: 2012
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Behavior+Problems%22">Behavior Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Relationship%22">Family Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Pervasive+Developmental+Disorders%22">Pervasive Developmental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Adolescents%22">Adolescents</searchLink><br /><searchLink fieldCode="DE" term="%22Young+Adults%22">Young Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Correlation%22">Correlation</searchLink><br /><searchLink fieldCode="DE" term="%22Marital+Satisfaction%22">Marital Satisfaction</searchLink><br /><searchLink fieldCode="DE" term="%22Comparative+Analysis%22">Comparative Analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Predictor+Variables%22">Predictor Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Age+Differences%22">Age Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Gender+Differences%22">Gender Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Socioeconomic+Status%22">Socioeconomic Status</searchLink><br /><searchLink fieldCode="DE" term="%22Educational+Attainment%22">Educational Attainment</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink>
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  Label: Geographic Terms
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  Data: <searchLink fieldCode="DE" term="%22Australia%22">Australia</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/j.1365-2788.2012.01561.x
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  Label: ISSN
  Group: ISSN
  Data: 0964-2633
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: This study aimed to explore the factors that predict functioning in families with a child with Down syndrome using a mixed methods design. The quantitative component examined the effect of maladaptive and autism-spectrum behaviours on the functioning of the family while the qualitative component explored the impact of having a child with Down syndrome on family holidays, family activities and general family functioning. Methods: Participants in this study were 224 primary caregivers of children with Down syndrome aged 4-25 years (57.1% male; 42.9% female) currently residing in Western Australia (74.0% in metropolitan Perth and 26.0% in rural Western Australia). Results: Maladaptive and autism-spectrum behaviour were associated with poorer family functioning. Mean total scores on the measures of family functioning and marital adjustment were comparable to that of families of typically developing children. Consistent with the quantitative findings, normality was the most common theme to emerge in the qualitative data. Child problem behaviours were also identified by parents/carers as having a negative impact on the family. Conclusions: This study has implications for the development of programs to support families with a child with Down syndrome and may dispel some of the myths surrounding the impact of intellectual disability on the family. (Contains 4 tables and 1 figure.)
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  Data: 43
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  Data: 2012
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  Data: EJ979220
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        Value: 10.1111/j.1365-2788.2012.01561.x
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      – Text: English
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      – SubjectFull: Behavior Problems
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Down Syndrome
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