Currently there is no clear consensus about the best ways to measure outcomes and gain meaningful feedback from children and young people with learning disabilities and their families. It is recognised that children and young people with learning disabilities experience higher rates of emotional and behavioural challenges, less access to services and are underrepresented in research, which emphasises the importance of this British Psychological Society (BPS) funded project. As practitioners and citizens, the Equality Act gives us all a responsibility to not discriminate and to make reasonable adjustments for children and young people with learning disabilities.
This project reports on what works and what gets in the way in measuring outcomes and gaining feedback (described in this project as ‘Hearing the Voice’). The project recognises that we need to measure outcomes and hear the voices across different levels, from individual’s support, service level and communities, and across different kinds of activities as shown below in our multi-level map of impact.
The below section includes information, guidance and practice-based reflections to support practitioners working with children and young people with learning disabilities and their families. It aims to support the development and routine use of outcome measures and feedback tools acknowledging the particular challenges involved so with this client group.
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Recommendations
Choose and use outcome measures and methods with clear purpose
Do
Don’t
- Familiarise yourself with measures and methods.
- Use measures which are appropriate, valid and reliable.
- Explain to children and young people and their families and networks what, why and how they will be used.
- Provide support to complete them; give feedback and discuss and use the findings.
- Follow up with repeat measures.
- Use as a ‘tick-box’ exercise.
- Send out measures for remote completion.
The use of measures can help start conversations and collaboration; learning and listening; personalised approaches and shared-decision making; establish baselines and priorities, all of which can contribute to a process of empowerment and ‘getting it right’. The key is ‘how’ measures and methods are used, not just ‘what’ measures and methods are used.
On this webpage and in our project summary we provide you with some recommendations from the project and examples of approaches across different levels of impact and service.
Set goals that are meaningful
Goal Based Outcomes are very useful with children and young people with learning disabilities, their families/carers and others in their network as they are easy to use, flexible and personal. They can be used in and across mental health and wellbeing services, education and participation in other areas.
In our project summary we provide you with a whole list of key elements in setting goals that are meaningful.
Actively seek feedback in a variety of ways
Seeking feedback includes:
- hearing, listening to and promoting the ‘voice’ of children and young people across the full range of learning disabilities, where ‘voice’ is interpreted as meaning communication, in whichever form works best for the child or young person.
- direct engagement of, and communication with, children and young people, their families and carers, staff and their networks using a range of communication methods and supports for a range of purposes.
Seeking feedback is important at all stages of assessment and formulation, planning, doing and review, in both individual and service contexts. On this webpage and in our project summary we provide you with a list of key elements in gathering feedback effectively.
As health and wellbeing are affected by many broad, contextual factors, different settings and foci for ‘Hearing the Voice’ are included in this project’s Good Practice Examples*, their Thematic Analysis, the Guidelines from them and other consultations and table of useful organisations and resources.
Citation for this guidance:
Rossiter, R. & Tait, N. (2021) Gathering feedback and measuring outcomes and change with Children and Young People with Learning Disabilities (CYP-LD), their families and networks: revised Guidance. British Psychological Society Division of Clinical Psychology/Child Outcomes Research Consortium, London.
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Considerations
Consider equalities, diversity and inclusion
We need to ensure we really listen to all children and young people with LD and their families and carers, with open and curious minds and pre-judgements suspended. The project recognises the need for more focus and action on racism and all protected characteristics including age, ability/disability, gender, sexuality, etc and their intersectionalities. The groupings or labels (diagnoses, ‘protected characteristics’ etc that may be attached to a child, young person with LD, their family or carer tells us little about their personal lives, likes/dislikes, talents and needs.
We also need to consider practicalities such as language used in measures and availability of translations, as well as the appropriateness of Western or Eurocentric models and measures of mental health.
Difference and intercultural presence of race, class, gender, sexuality, age and ability issues can evoke feelings and dynamics of power, fear, uncertainty, shame etc, that we may be unaware of. We need to uncover assumptions, unconscious biases and issues around stigma, discrimination and privilege in ourselves and the services we work in, and find space and ways to think, plan and behave differently.
Consider the impact of the pandemic
As it is too early to have identified long term impacts and ways of mitigating these, guidance is limited. Project consultations with children and young people, families and practitioners show what they find helpful in getting through the pandemic:
- Involving groups of children and young people with LD, e.g. in a school or residential college, and families to consider ‘How are they feeling about coming back to school?’; ‘What are they worried about?’ and ‘What would help with worry?’. This will show the range of responses, enable identification of possibilities for support, goals and measures, and engage and empower them.
- Learning from changes in work practices, e.g. more working virtually, using outcome measures digitally to innovate, improve access, with implications on measuring ‘what’ and ‘how’.
- Recognising and planning to reduce the differential impact of the pandemic on health and social inequalities across differing groups.
Citation for this guidance:
Rossiter, R. & Tait, N. (2021) Gathering feedback and measuring outcomes and change with Children and Young People with Learning Disabilities (CYP-LD), their families and networks: revised Guidance. British Psychological Society Division of Clinical Psychology/Child Outcomes Research Consortium, London.
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Measuring outcomes and change: practice examples
Here we provide additional information/links to measures/methods for measuring outcomes and change for children and young people with profound, multiple and complex learning disabilities 2) Examples of approaches to service outcome measurement.
Good practice example
More details
Example of good practice in collecting and analysing measures at a Trust level
Sussex Behaviour Grids (SBG) - Parents Priorities for Change
These help parents describe the nature of their problems with their child. The SBG provides an individualised understanding of each family’s or individual parent’s three priorities for behaviour change. The SBG can be completed by parents/carer’s together or can be completed individually.
The aim is to ensure parents’ priorities and concerns about their child’s behaviours are identified at the beginning of the helping process in order to guide agreements about shared goals and family service planning.
References: Austin, C., Davis, H. & Jezzard, B. (1995) Evaluation of Lewisham and Guys child mental health service: Final research report. London: Lewisham and Guy’s Mental Health Trust, Emerson, E. & Bromley, J. (1995) The form and function of challenging behaviours. J Intellect Disabil Res, 39: 388-98
Sussex Behaviour Grids (SBG) Review of Behaviours (Follow up)
Parents complete the SBG’s again at review and the end of the helping process to provide outcome data on their identified behaviour priorities.
Permission granted to be downloaded for use with children and young people with LD and their families/carers.
Helen Ross & Emma Burdis (Higher Assistant Psychologists). Under supervision of Dr Gill Legg (Consultant Clinical Psychologist & BCBA)
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Hearing the voice of children and young people: practice examples
We were interested in hearing about helpful ways to listen to the ‘voice’ of children and young people with moderate, severe or profound and multiple learning disabilities. When we say ‘voice’ we mean communication, in whichever form works best for the child or young person.
We asked people to write a summary of what they are doing and send it to us. Below we list summaries of what people did, what was helpful and what were the barriers. The summaries contain lots of ideas that can be applied to working with children and young people of different ages with a range of complex needs across the levels from own life, through service development, training and research and community and cultural change. See our multi-level map of impact.
Good practice example
More details
Multi-level map of impact
Hazel Sharpe, Talking about restraint
#OwnLife, #ServiceDevelopment, #Training&Research
Maxine Cole, Triangle Reflections and advice from a young person’s advocate about supporting young people during the Covid 19 pandemic
#OwnLife #ServiceDevelopment
Maxine Cole, Triangle, Young people reflecting on how best to hear what they have to say
#OwnLife #ServiceDevelopment
Jennifer McElwee, Mared Owen, Lucy Bennett Downes and Emma Alm, An observational framework for young people’s participation in interviews
#ServiceDevelopment, #Training&Research, #Community&Culture
Development of a range of tools to promote pupil voice in schools
Sarah Taylor-Whiteway and Siobhan Hickey, Promoting Pupil Voice at Paddock School for Children and Young People with severe learning difficulties
#OwnLife, #ServiceDevelopment, #Training&Research
Gemma Watts, Andy James and Jennifer McElwee, The Sun Class Young People’s Group
#OwnLife, #ServiceDevelopment
Emma Jackson and Biza Stenfert Kroese, Investigating the relationship between emotional literacy and mental health using an adapted self-report measure
#ServiceDevelopment, #Training&Research
Jude Liberman, Hearing the views of young people about a pathway to support intimate care practice.
#OwnLife, #ServiceDevelopment, #Community&Culture
Vivian Hill, Elizabeth Pellicano, Scott Greathead and Lorcan Kenny, My Life at School.
#Training&Research, #Community&Culture
Team Epic Participation Group, Sam Greedy, Andy James, Charlotte Fry, Gareth Excell and Team Epic
#OwnLife #ServiceDevelopment
Working with young people to create ‘ten top tips’ to promote a sense of ‘belonging’ to their school
Tara Midgen, Theodora Theodoratou, Kirsty Newbury & Matthew Leonard, Your opinion matters - ‘School for Everyone’: An exploration of children and young people’s perceptions of belonging
#OwnLife, #ServiceDevelopment, #Community&Culture
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Project findings
Stream 1 Project report: Measuring outcomes and change for children and young people with learning disabilities and their families; a clinical perspective.
Over recent years much greater emphasis has been placed on the need for children and young people (CYP) and their families to be able to shape the mental health services that they access. Central to this was the Government’s aim for services to become “rigorously focused on outcomes” by 2020 (Department of Health; DoH, 2015). However, for CYP with learning disabilities a number of obstacles have prevented this becoming a reality, including concern about the appropriateness of measures, a lack of consensus as to the best measures to use and the absence of meaningful, centralised data collection (Phillips et al., 2013; Rossiter et al., 2013).
To begin to address this, in 2011 a group of clinical psychologists organised workshops (Phillips, Sopena and Crawford, 2015; Rossiter, Phillips and Law, 2016), publications (Phillips et al., 2013; Rossiter et al., 2013; Rossiter et al, 2014; Rossiter and Armstrong, 2015) and a national survey of practitioners (Phillips, Sopena and Crawford, 2015; Rossiter, Phillips and Law, 2016). From these, emerged preliminary best practice guidance on the use of outcome measures with CYP with learning disabilities and their families (Rossiter et al., 2015).
To further extend this work, the British Psychological Society (BPS) funded a wider ‘Special Measures’ project, with a remit to identify the best ways of obtaining meaningful feedback generally from all CYP with learning disabilities and their families. This report describes Stream 1 of this project which aims to build further consensus around best practice in the use of formal outcome measures and to update the current guidance.
Citation for this report:
Phillips, N. & Demjen, E. (2021). Measuring outcomes and change for children and young people with learning disabilities and their families: a clinical perspective. British Psychological Society Division of Clinical Psychology/Child Outcomes Research Consortium, London.
Stream 2 Project report: Use of the Strengths and Difficulties Questionnaire for monitoring the wellbeing of children and young people with learning disabilities
It has been suggested that the pattern of emotional and behavioural difficulties may be different among children and young people with learning disabilities when compared to their peers. Therefore, it has been argued that scales developed for the general population may not be applicable to children and young people with learning disabilities, especially those with more severe learning disabilities. The aim of this report (Stream 2 of the 'Special Measures' project) was to present new data, extracted from the UK’s Millennium Cohort Study, on the face validity, factorial structure and reliability of the SDQ when used with children with learning disabilities.
Citation for this report:
Emerson, E. (2021). Use of the Strengths and Difficulties Questionnaire for Monitoring the Wellbeing of Children and Young People with Learning Disabilities. British Psychological Society Division of Clinical Psychology/Child Outcomes Research Consortium, London.
Stream 3 Project report: Hearing the ‘voice’ of children and young people with moderate, severe or multiple and profound learning disabilities
Children and young people with moderate, severe or profound and multiple learning disabilities have a lot to communicate about how they experience the world around them, their relationships and their environments. The world we live in predominantly uses verbal and written language to communicate and this can mean that children who do not use language as their primary method of communication are less likely to be listened to.
We wanted to find out how people around the UK are trying to hear the ‘voice’ of children and young people with moderate, severe or profound and multiple learning disabilities, by:
- Gathering together existing data on hearing the ‘voice’
- Creating a framework for hearing about other projects and practice
- Running workshops to share information and hear about more good practice
- Curating and analysing all data and create summary guidelines
Citation for this report:
McElwee, J. (2021) Hearing the ‘voice’ of children and young people with moderate, severe or multiple and profound learning disabilities. British Psychological Society Division of Clinical Psychology/Child Outcomes Research Consortium, London.
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Project timeline
Latest project stage: post-2016 - now
In this stage of the project, we aimed to update, deepen and broaden links and learning with other stakeholders including experts by experience, practitioners, researchers and relevant organisations and be more inclusive across ages and abilities especially those with Profound and Multiple Disabilities (PMLD).
2017-2018
- Making cases for and obtaining funding from the Division of Clinical Psychology (DCP) of the British Psychological (BPS)
2019
- Analysis of LD Responses to CORC/NHSE survey
- Analysis of LD data within the CORC data set
- Online survey on use of measures with children and young people with LD
- Mapping of networks, organisations and resources for Hearing the Voice
- Interrogation, analysis and reporting of Millennium Childhood Survey SDQ data
- Presentation at CORC Forum Outcomes for All
2020
- Events in 2020 affected the project. The pandemic led to delays and changes in priorities and delivery in services and the project. The project was granted an extension. In response to the murder of George Floyd, diversity was given a more central place in the project
- Analysis of measures survey data
- Framework for collecting ‘Good Practice Initiatives’ on ‘Hearing the Voice’ developed and circulated
- Analysis of survey data and triangulation with practitioners and a sample of services
2021
- Project workshops 50+ participants
- Curation and analysis of ‘Good Practice Initiatives’ on ‘Hearing the Voice’
- Review and integration of findings, considering implications for practice;
- Dissemination of interim project findings including CORC Spring Seminar
- Final web-based project learning and reports launched
1st project stage: pre-2011 - 2016
In this stage of the project, we aimed to find out what measures and methods were in use and any issues, to build some consensus about good practice and, when CYP-IAPT was launched, to ensure that children and young people with learning disabilities (CYP-LD) were included.
Pre 2011
- Limited, largely anecdotal evidence of measures to use; services operating in isolation; lack of consensus
2011
- Initial informal practice discussions
- Mini-survey of BPS Division of Clinical Psychology (DCP) Faculty for Children, Young People and their Families LD Network
2012
- Articles to stimulate discussion submitted; published Phillips et al; Rossiter et al.* LD represented at CYP-IAPT OEG (Outcomes and Evaluation Group: 2012 -2015, disbanded when MHSDS going live)
2013
- CYP-IAPT Leadership LD outcomes and user-feedback Project Pill et al.* Can CYP IAPT Routine Outcome Measures be used in a meaningful way with CYP-LD and their Families? (Julie Pill with Sam Shrubsole & Eddy Draper / summarised by Ro Rossiter)
- Further, more systematic psychology, then wider multidisciplinary, survey, Phillips et al.*
2014
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Phillips, N., Sopena, S. and Crawford, A. (2014). The use of outcome measures with children/young people with more severe learning disabilities. Presentation at CORC, CYP-IAPT London & SE Learning Collaborative and CYP-IAPT OEG (Outcomes and Evaluation Group) Learning Disability Workshop 30.10.2014.
2015
- Phillips, N., Sopena, S. and Crawford, A. (2015). The use of outcome measures with children/young people with more severe learning disabilities: what works in practice. Presentation at CORC, CYP-IAPT London & SE Learning Collaborative and CYP-IAPT OEG (Outcomes and Evaluation Group) Learning Disability Workshop 12.03.2015.
- Guidance development
2016
- Consensus Guidance publication - recognising need for further work
- Further guidance can be found in the ‘Guide to Using Outcomes and Feedback Tools with Children, Young People and Families’ (p. 108-114).
- CYP-IAPT/CAMHS Transformation national conference workshop
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Project team & funders
Project expertise:
- Ro Rossiter: Project Manager; Consultant Clinical Psychologist/Honorary Researcher, Tizard Centre, University of Kent.
- Nick Tait: Lead Child Outcomes Research Consortium (CORC) collaborator; Programme Manager at CORC.
- Neil Phillips: Stream lead for the measures and methods, survey update, analysis and report; Clinical Psychologist, Hereford & Worcestershire Care Trust.
- Eric Emerson: Stream lead for interrogation of Millennium Cohort Study data on Strengths and Difficulties Questionnaire (SDQ), Emeritus Professor of Disability and Health Research, Lancaster and Sydney Universities.
- Jeni McElwee: Stream lead for Profound and Multiple Learning Disabilities (PMLD) participation & service users; Clinical Psychologist, Anuerin Bevan University Health Board, Wales.
- Duncan Law: Project Management Group Member; Clinical Psychologist; Honorary Associate Professor at UCL Faculty of Brain Science.
Commissioning expertise:
- Angela Kirton: Project Management Group Member, 2019; Commissioning Manager, Children’s Community Health Commissioning Team, Worcestershire County Council
- Harry Harrison: Project Management Group Member, 2020/2021; Commissioning Manager, Children's & Families; NHS North Cumbria Clinical Commissioning Group
The project team thanks:
- The British Psychological Society (BPS), Division of Clinical (DCP) Psychology grant, which funded the 2-year project “Special measures?” - equality and diversity in feedback and outcome measures: progressing practice and practice-guidance on measures and methods for children and young people with learning disabilities (CYP-LD), their families and networks".
- All project consultees and those offering information/support
- All people who shared ‘good practice initiatives’ for Hearing the Voice
- Avon & Wiltshire Partnership Trust: Sam Greedy; Andy James
- British Psychological Society (BPS): Jacob Daniel, Hannah Farndon, Karen Goldsmith
- BPS/Division of Clinical Psychology/Faculty for Children, Young People and their Families: Helen Griffiths; LD Network
- BPS/Division of Clinical Psychology/Faculty for People with Intellectual Disabilities (ID): Nigel Beail; Sophie Doswell; Kate Theodore; Nik Vasilides
- BPS/Division of Educational and Child Psychology: Vivian Hill; Siobhan Hickey; Tara Midgen, Theodora Theodoratou; Sarah Taylor-Whiteway
- BPS/Division of Occupational Psychology: Nancy Doyle; Julie Freeborn (Neurodiversity & Youth into Work Working Groups)
- Child Outcomes Research Consortium (CORC): Kate Dalzell, Martha Reilly, Ben Ritchie, Anja Teichert
- Council for Disabled Children (CDC): Amanda Allard; Marie Hunt
- Challenging Behaviour Foundation (CBF) Jacqui Shurlock; Siobhan Humphreys;
- Family Intensive Support Service/CAMHS-LD Sussex Partnership NHS Trust: Jasmine Linekar; Sarah Wedge; Jane Woodrow
- Hearts and Minds: Beth Ingram; Sarah Boon; young people from the Hearts and Minds group.
- Manchester Metropolitan University: Juliet Goldbart
- NHSE: Ask, Listen, Do; Mary Busk, Family Carer Adviser NHSE/co-founder of the National Network of Parent Carer Forums; Transforming Care; Carrie Sykes
- MHSDS: Jaime-Lee Keen; Aradhana Rana; Jessica Sharpe; Neil Fothergill
- PAMIS: Jenny Miller, Maureen Phillips, Pat Graham, Susan Buella
- Tizard Centre, University of Kent: Jill Bradshaw, Nick Gore
- Triangle: Maxime Cole; children and young people consultees; Chailey Heritage Foundation Consultation; access to the PhD of the late Ruth Marchant
