Q
uestion: What child and/or family specific outcomes do parents of children with ASD perceive as important?(Christopher Morris, Nuala Livingstone, Bryony Beresford)
Methods
Search strategy
A systematic search was conducted using MEDLINE, CINAHL and PsycINFO (via Ovid). Blocks of search terms were assembled for ASD (block 1) and Qualitative Study Designs (block 2), tailored to each database.
Example of search strategy
Search terms PsycINFO
ASD 1 exp Pervasive Developmental Disorders/ 21,449 2 exp Developmental Disabilities/ 10,206 3 autis$.ab,ti. 24,176 4 asperg$.ab,ti. 2493
5 pdd.ab,ti. 1192
6 pervasive developmental disorder$.ab,ti. 2081
7 kanner$.ab,ti. 345
8 1 or 2 or 3 or 4 or 5 or 6 or 7 35,627 Qualitative study
design
9 ((‘semi-structured’or semistructured or unstructured or informal or‘in-depth’or indepth or‘face-to-face’or structured or guide) adj3 (interview* or discussion* or questionnaire*)).ab,ti.
49,983
10 (focus group* or qualitative or ethnograph* or fieldwork or‘field work’or‘key informant’).ab,ti.
95,482 11 exp Qualitative Research/ 3248 12 exp Interviews/ 9745 13 exp Group Discussion/ 3127 14 exp Narratives/ 10,680 15 (parent$ adj3 priorit$).ab,ti. 104 16 (desired adj1 outcome$).ab,ti. 849 17 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 151,148
Search results Parent/family-specific outcomes (n =50) Child-specific outcomes (n =102)
Titles and abstracts scanned, irrelevant citations excluded
(n =2642)
Total relevant citations (n =152)
Total (excluding duplicates) (n =2794)
Total (including duplicates) (n =3386) CINAHL search (n =1282) PsycINFO search (n =1343) MEDLINE search (n =761)
Data extracted from included studies
Author: Auertet al.31
Title: Parents’Expectations, Awareness, and Experiences of Accessing eVidence-based Speech–Language Pathology Services for Their Children with Autism
Year: 2012 Country: USA Child age:3–6 years
Methods:Four focus groups exploringexpectations, awareness of and experiences with access to speech-and-language therapy services; 20 parents
Notes:
Major themes related to and use of evidence in practice in speech-and-language therapy and parents’expectations of services
No data onchildoutcomes
Data onparentoutcomes (see below)
Information/communication and feedback
The majority, for example, stated that they would like to receive regular feedback from the speech-and-language therapist regarding their children’s progress over time and more input into their children’s management:
‘. . . Most people I find don’t get the take home homework and they don’t get the
“This is where we’re up to”. . . mothers need confirmation that things are happening . . . if you had a“Today I saw this and this and next week I’m gonna do X”. That’d be so helpful . . .’
Expectations of service Parents expected the service to:
l provide parents with information and research literature
l involve parents in decision-making processes
Author: Beresfordet al.34
Title: Desired Outcomes for Children and Adolescents with Autistic Spectrum Disorders Year: 2006
Country: England
Methods:Semistructured interviews with parents (n=25) andchildren and young people with autistic spectrum condition
(n=5) exploring desired outcomes for children’s/young people’s lives, including maintaining current achievements and
hopes and aspirations for future
Notes:
A hierarchy of outcomes identified (see below); aspirations within each of the‘outcome domains’were influenced by the child’s age, abilities and the way the features of autism were manifest
Many of the long-term aspirations expressed were dependent on short- or medium-term achievements
Fundamental outcomes need to be achieved if outcomes in terms of skills and abilities and‘life-world’are to be fully attained
No quotes presented in paper but available in full project report
Fundamental l Physical health
l Communication
l Mental health
l Protection/safety
Skills and abilities l Self-care
l Social skills
l Life skills
l Academic attainment
l Emotional/behavioural maturity
‘Life-world’ l Friendships
l Interests and activities
l Part of the local community
Author: Braidenet al.32
Title: Parents’Experience of the Diagnostic Process for Autistic Spectrum Disorders Year: 2010
Country: Northern Ireland Child age:5–11 years
Method:Face-to-face interviews; indirect data only; interview was biographical
Sample:Eleven mothers
Notes:
Focus on parents’experience ofdiagnosis. Speech-and-language therapy and occupational therapy identified on several occasions as valuable support and intervention for children
No data on child outcomes Limited data onparent outcomes
Being informed l Parents appeared to accept that their children had to see various professionals but they appeared not to fully understand the multidisciplinary assessment . . . parents noted that a flow chart or diagram detailing the multidisciplinary team and the roles within the team would have been very useful
l Parents reported a lack ofco-ordination re-ensuring parents fully informedabout services and other sources of support’
Understanding/ parenting
Parents‘desired information relevant and applicable to their child to assist them in understanding andmaking sense of their own child’s presentation’
Author: Littleet al.37
Title: Wonders and Worries of Parenting a Child with Asperger Syndrome and Non-verbal Learning Disorder Year: 2006
Country: USA
Age:3–21 years with Asperger syndrome and/or non-verbal learning disorder
Method:Survey instrument with open-ended questions; 103 couples (each completed instrument); qualitative analysis of open-ended questions
Notes:Outcome-related themes listed below:child and parent outcomes
Parent outcome: positive times with child
‘When he is behaving well and not gearing up for a fight, he’s a very happy and pleasant child, whom I can enjoy spending time with and doing things with’
Concerns about adulthood ‘Fend for (him or) herself as an adult’
‘Lack of friends, uncontrollable temper and frustration,I just hope he will be able to grow up, get a job, raise a family, live a normal life’
‘Loving relationships outside our family’
‘A proper match between his abilities and living/job situation’
Mental health concerns One father reported concern that his son‘. . . will beisolated from peers or rejected
(and) will developdepression and anxiety’
Ability to manage anger and behaviour to avoid getting into trouble
Victimisation concerns ‘I worry that he will unknowingly insult someone who will physically retaliate; that
Author: Mackintoshet al.36
Title:‘What Do You Like/dislike About the Treatments You are Currently Using?’A Qualitative Study of Parents of Children with Autism Spectrum Disorders
Year: 2012 Country: USA
Child age:2–21 years (mean=8.3 years)
Methods:‘Web-based qualitative study’,n=486 parents;‘what do you like/dislike about treatments you are currently
using?’
Notes:
Six themes emerged and are discussed: effectiveness of treatments, relationships with professionals, access to treatments, costs, medication concerns and [parents’] stress
Relevant data extracted below
Effective treatments (illustrative quotes to right) identified as yielding the following outcomes:
l Medication does not‘zone out’child or alter behaviour
l Improved behaviour
l Improved attention/behaviour; also supports learning outcomes
l Self-esteem; also supports engagement in other interventions, including education
l Speech
l ‘To find the child’
l ‘Stress-free’interventions
‘Not“zoned out”by meds’
‘Do not like the fact he takes regular medicationbut at the same time it allows him to function better‘
‘As forbehavior modifying, well we will keep on trying till we find one which works’
‘Love the diet–makes iteasier for him to learn’
‘She is currently on Adderall. This helps herto sit still at school and focus longer. This medicine makes her aggressive at times. When she is not on it, she is silly/slap happy, goofy acting’
Occupational therapy toimprove motor skillsseen toimprove self-esteemwhich‘makes him more available tomake improvements in other areas’(includinglearning)
‘Tofind the childandbring him out’
‘Speech therapy starting at age 2 has had a profound impact and allowed him to finallydevelop speech’
‘The most effective therapy we have for him right now is OT [occupational therapy]. This is a verystress-free therapyfor him, and has helped somewhat in sensory integration’
Author: Serpentineet al.35
Title: Decision Making of Parents of Children With Autism Spectrum Disorder Concerning Augmentative and Alternative Communication in Hungary
Year: 2010
Country: USA but looking at parental views inHungary
Age:6–16 years; ASD with no functional communication
Methods:A single focus group and individual interviews are referred to; methods unclear; focus of interviews was experiences of augmentative and alternative communications
Notes:
Six main themes emerged from the data. These included: (a) sources of information
(b) interventions to support communication (c) intervention outcomes (see below) (d) reasons for adding interventions (e) reasons for discontinuing interventions (f) desired interventions
(g) decision-making processes
Development of natural speech ‘That his speech would develop, that he would probably start speaking, say words’
Improved communication (parent to child and child to parent)
‘We expectedto be able to communicate better with our child’
Improved attention ‘That he would start using words, and that he would pay attention to such things that have not interested him before, or not for a long time’
Improved behaviour ‘I was hoping his behaviour would change, in fact that his behaviour would get better’
‘We hoped the behaviour problems would end, finally no more tantrums’
Interventions acceptable to the child ‘We try things. If he likes it or is willing to accept it we try. If he cries or refuses we rather let it be’
Author: Whitakeret al.33
Title: Supporting Families of Preschool Children with Autism Year: 2002
Country: England Age:Up to∼5 years
Methods:Semistructured interview (no detail on what this covered) at time of leaving service (EarlyBird programme, delivered by SEN team in LA);sample size not reported;method of data analysis not reported
Notes:Mainly focused on parents’experiences of training, some potentially relevant issues regardingparent outcomes
related to parenting/teaching skills:
l Strategiesfor promoting expressive and receptive communication were next most highly valued
l Techniquesfor engaging their child in interactive play were also valued Also found:
l It was relatively rare for parents to be setting aside time for direct work on specific targets; in practice, they adopted a much more opportunistic and intuitive approach, with a relatively small number of targets serving to provide a broad orientation during their day-to-day interactions with their children
l The whole notion of setting targets was at odds for one parent, with the values implicit in her holistic approach to her son;she felt that the emphasis should be on her and her family learning to understand and accommodate his difficultiesand that they had no right to‘impose’(as she termed it) targets
LA, local authority; SEN, special educational needs.