Plain English Summary
Background and study aims
Parents who have adolescents with intellectual disability often have additional needs and higher levels of stress. Despite this, there are no current parenting programmes specifically designed for this population. The aim of this study is to test whether a Parents Plus programme designed for these parents improves their adolescents’ behavioural and emotional difficulties, improves their parenting and family adjustment and increases their parenting confidence and satisfaction. The researchers also hope to test whether it helps parents achieve the goals they have for themselves and their adolescent.
Who can participate?
Parents who have an adolescent with an intellectual disability who are linked in with participating Irish disability services
What does the study involve?
The study involves completing questionnaires on three different occasions and taking part in an eight-week parenting programme. Participants may be asked to complete the questionnaires twice before they do the programme, and once afterwards, or once before and twice afterwards.
What are the possible benefits and risks of participating?
The benefit of taking part is that parents may learn new skills and meet other parents who can help them meet their goals for their child and family. The risk is that this will not happen. There are no additional risks for completing the questionnaires, but it will take up some time.
Where is the study run from?
The study is being co-ordinated by Parents Plus and the School of Psychology, Trinity College Dublin (Ireland)
When is the study starting and how long is it expected to run for?
September 2018 to September 2020
Who is funding the study?
Parents Plus (Ireland)
Who is the main contact?
1. John Sharry
John@parentsplus.ie
2. Charlotte Wilson
cewilson@tcd.ie
Trial website
Contact information
Type
Public
Primary contact
Dr John Sharry
ORCID ID
Contact details
Parents Plus
Mater Hospital
Eccles Street
Dublin
D07 R2WY
Ireland
+353 (0)1 854 5185
john@parentsplus.ie
Type
Scientific
Additional contact
Dr Charlotte Wilson
ORCID ID
http://orcid.org/0000-0002-0800-153X
Contact details
School of Psychology
Aras an Phiarsaigh
Trinity College Dublin
Dublin
D02 PD91
Ireland
+353 (0)1 896 3237
cewilson@tcd.ie
Additional identifiers
EudraCT number
Nil known
ClinicalTrials.gov number
Nil known
Protocol/serial number
Nil known
Study information
Scientific title
Parents Plus Pathways programme: a pragmatic randomised controlled trial
Acronym
Study hypothesis
The Parents Plus Pathways Programme will positively impact parenting behaviour, adolescent behaviour, parenting satisfaction and confidence, and parents will meet their personally set goals compared to a waitlist control group.
Ethics approval
Approved 10/06/2019, Trinity College Dublin School of Psychology ethics committee (School of Psychology, Trinity College Dublin, Dublin 2, Ireland; +353 (0)1 896 3907; psycheth@tcd.ie), ref: SPREC042019-01
Study design
Wait-list randomised controlled trial
Primary study design
Interventional
Secondary study design
Randomised controlled trial
Trial setting
Other
Trial type
Treatment
Patient information sheet
Not available in web format, please use contact details to request a participant information sheet.
Condition
Behavioural and emotional difficulties
Intervention
Wait-list randomised controlled trial with a 3-month follow-up period for the intervention group. Disability services that registered to complete the training in the intervention were randomised to an immediate intervention group and a waitlist control group. No masking or blinding was possible. The randomisation was completed by a researcher who had no knowledge of the services involved. The study was facilitated centrally through Parents Plus and Trinity College Dublin, but the intervention took place in 24 different sites.
The intervention being tested is the Parents Plus Pathways Programme for parents of adolescents with intellectual or developmental disabilities. This is an 8-week group programme. It covers strategies for managing behaviour in adolescents with intellectual and developmental disabilities through positive parenting strategies, and strategies for managing being a parent in that context. Each group session is 1.5 hours long and covers a strategy for managing adolescent behaviour and a strategy for managing as a parent.
The control group was a waitlist group who were offered the group after the intervention group programme ended.
Intervention type
Behavioural
Phase
Drug names
Primary outcome measure
1. Problem behaviours, prosocial behaviours, and emotional difficulties measured using the CAPES (Child Adjustment and Parental Efficacy Scale)
2. Parenting behaviours and family adjustment measured using the PAFAS (Parent and Family Adjustment Scale)
Measured at pre-intervention, post-intervention and 3-month follow up for intervention group, and at baseline and two months later (pre-intervention) and two months following this (post-intervention) for waitlist-control group
Secondary outcome measures
1. Parental self-efficacy measured using the CAPES
2. Parental satisfaction measured using the Kansas Satisfaction Scale
3. Parent goals for self and parent goals for child measured using the Parents Plus goal setting procedure
Measured at pre-intervention, post-intervention and 3 month follow up for intervention group, and at baseline and 2 months later (pre-intervention) and 2 months following this (post-intervention) for waitlist-control group.
Overall trial start date
01/09/2018
Overall trial end date
01/09/2020
Reason abandoned (if study stopped)
Eligibility
Participant inclusion criteria
There were two types of inclusion criteria. Parents who were eligible to take part were determined by each service. The researchers instructed services that the programme was for parents of adolescents with intellectual or developmental disabilities. However, as it was a pragmatic trial they left it up to services to determine individual eligibility. They would suggest that it was:
1. A parent of an adolescent (aged 12-20) with an intellectual or developmental disability
2. A parent who is willing and able to attend 8 group sessions
Service inclusion criteria included:
1. A service whose clients were children, adolescents and/or young adults with intellectual disabilities and/or developmental disabilities
2. A service who had two practitioners who could attend training
3. A service who was willing to take part in the evaluation and request and collect data from parents
Participant type
Carer
Age group
Adult
Gender
Both
Target number of participants
24 services expressed an interest. Each service was required to run one group. Each group was ideally between 5 and 12 participants. This would lead to a sample size of between 120 and 288. This was sufficient to find a small effect size.
Participant exclusion criteria
There were no official exclusion criteria. Each service was requested to invite suitable participants and therefore the exclusion criteria were left up to individual services.
Recruitment start date
18/06/2019
Recruitment end date
20/01/2020
Locations
Countries of recruitment
Ireland, United Kingdom
Trial participating centre
Brothers of Charity, Galway
Woodlands Centre, Renmore
Galway
H91 KN20
Ireland
Trial participating centre
Brothers of Charity, Ballincollig
Positive Behavioural Support Services
Chapel Gate
Ballincollig
Cork
P31 EP26
Ireland
Trial participating centre
West Cork Child Development Service
St Mary's Road,
Dunmanway
Cork
P47 PD89
Ireland
Trial participating centre
St Paul's Special School, Beaumont
Beaumont Woods,
Beaumont
Dublin 9
Dublin
D09 VY30
Ireland
Trial participating centre
Down Syndrome Ireland, Ballymount
Unit 3, Park Way House
Western Parkway Business Park
Ballymount Drive,
Dublin 12
Dublin
D12 HP70
Ireland
Trial participating centre
Down Syndrome Centre, Cabinteely
Shrewsbury House
Old Bray Road
Cabinteely
Dublin 18
Dublin
D18 KX60
Ireland
Trial participating centre
CAMHS ID
Skehard Road
Cork
T12 YR2P
Ireland
Trial participating centre
Treetops Children's Services
Cork Street
Dublin 8
Dublin
D08 DH31
Ireland
Trial participating centre
Daughters of Charity
23 Ashtown Road
Navan Road
Dublin 7
Dublin
D07 E4EK
Ireland
Trial participating centre
Cheeverstown House
Templelogue Road
Dublin 6
Dublin
D6W TX36
Ireland
Trial participating centre
South Kildare Network Disability Team
Cill Dara Primary Healthcare Campus
Curragh Road
Kildare
R51 RX51
Ireland
Trial participating centre
School Age Disability Team
Rossecourt Resource Centre
Balgaddy
Lucan
Co Dublin
K78 R9C9
Ireland
Trial participating centre
Child Development Team
Bailis Resource Centre
Johnstown
Co. Meath
Navan
C15 W303
Ireland
Trial participating centre
COPE Foundation
Bonnington
Middle Glanmire Road
Montenotte
Cork
T23 PT93
Ireland
Trial participating centre
Ability West
Blackrock House
Dún Na Carraige
Blackrock
Salthill
Galway
H91 R254
Ireland
Trial participating centre
Scoil Chiaráin Special School
Saint Canice's Road
Dublin 11
Dublin
D11 VK64
Ireland
Trial participating centre
Stewarts Care
Mill Lane
Palmerstown
Dublin 20
Dublin
D20 DV79
Ireland
Trial participating centre
Children's Services Centre,
Kilcreene Hospital Complex
Ballycallan Road
Kilkenny
R95 DK07
Ireland
Trial participating centre
Beechpark Disability Service
Beechpark Service
Bryan S. Ryan Building
Main Road
Tallaght
Dublin
D24 HH7F
Ireland
Trial participating centre
Children's Early Intervention Service
Northern Health & Social Care Trust Headquarters
Bretten Hall
Bush Road
Antrim
Belfast
BT41 2RL
United Kingdom
Trial participating centre
West Limerick Children's Services
28 Oak Park
Newcastle West
Limerick
V42 E248
Ireland
Trial participating centre
Letterkenny Youth and Family Service
New Line House
Glencar
Letterkenny
F92 CDC0
Ireland
Trial participating centre
Donegal Down Syndrome Centre
4 Garda Terrace
High Road
Letterkenny
F92 TX3X
Ireland
Sponsor information
Organisation
Parents Plus
Sponsor details
Mater Hospital
Eccles Street
Dublin
D07 R2WY
Ireland
+353 (0)1 854 5185
info@parentsplus.ie
Sponsor type
Charity
Website
Funders
Funder type
Charity
Funder name
Parents Plus
Alternative name(s)
Funding Body Type
Funding Body Subtype
Location
Results and Publications
Publication and dissemination plan
The researchers intend to submit a paper with the main results in May 2020. They intend to publish final results (including the impact of the intervention on the waitlist control group in Autumn 2020.
IPD sharing statement
The datasets generated during and/or analysed during the current study are/will be available upon request from Charlotte Wilson (cewilson@tcd.ie). Data files with fully anonymised data, both raw data and subscales for each measure (CAPES, PAFAS, KSS, Goals) along with some basic demographic data (age of child and parent, gender of child and parent, number of children with disabilities in the family, diagnoses) will be available from Summer 2021 for at least 10 years (indefinitely if it is possible to formally archive). Data will be made available to researchers who have ethical approval to conduct studies that are in line with the original aims of the study. Consent from participants has been given for this, and none of the data will be identifiable.
Intention to publish date
11/05/2020
Participant level data
Available on request
Basic results (scientific)
Publication list