Predictors of mental ill-health in mothers caring for a son or daughter with intellectual disabilities

Lead Research Organisation: University of Glasgow
Department Name: College of Medical, Veterinary &Life Sci

Abstract

An increasing number of parents in Scotland are continuing to care for their son or daughter with intellectual disabilities (an individual with an intellectual impairment and impaired social functioning which started before adulthood, with a lasting development) over a prolonged period of time. This is due to improvements in medical technology, health care, nutrition and the movement away from institutional to community care. While caregiving can be an extremely positive and rewarding experience, it can also have a negative impact on the mental health of parent carers at various points in the caregiving trajectory (i.e. across the life cycle - caring for a child (0-15 yrs), adult (16 - 54yrs), older adult (55+ yrs*) including after the death of a son or daughter with intellectual disabilities (described hereafter as 'post caregiving').

Small scale research suggests that mothers caring for a son or daughter with intellectual disabilities, as opposed to fathers and other carer groups, report poorer mental health potentially making them more susceptible to depression and anxiety. However, there is a dearth of robust research in this area. Scotland's Census 2011**, provides a unique opportunity to identify the mental health of mothers' caring for a son or daughter with intellectual disabilities. This is the only known whole population census in the world whereby mothers with a caring role can be identified, as can households with a child or adult with intellectual disabilities, enabling the individual characteristics of both mother and child to be linked. Scotland's Census 2011 will also be linked to information from different sources (routinely collected health records) to better understand the mental health of mothers at different stages of caregiving, including post caregiving.

Aims: To investigate the prevalence and determinants of mental ill-health in mothers caring for a son or daughter with intellectual disabilities, both overall and at different stages of the caregiving trajectory, including post caregiving.

Methods: The proposed study aims to take advantage of Scotland's rich informatics environment and datasets to benefit mothers caring for a son or daughter with intellectual disabilities and mothers post caregiving, through data linkage and secondary analysis of routinely collected health data. We will link datasets that tell us about: mothers self-reported mental ill-health (Scotland's Census 2011); use of medications for depression and anxiety (Prescribing Information System) and; hospital admissions for mental ill-health (Scottish Morbidity Records). It is also important to identify possible reasons for mental ill-health (e.g. socio-economic factors such as household structure, employment status, number of children in household), so these can be addressed. Linking these datasets will allow us to investigate how common mental ill-health is in mothers caring for a child, adult or older adult with intellectual disabilities or post caregiving, and additionally, compare this with matched women who do not have this caring role.

The proposed study provides a highly cost effective method to address important and overdue questions on mental ill-health and will subsequently provide evidence to inform professionals to support mothers at pivotal points in the caregiving trajectory including post caregiving. It will also provide valuable insight on the impact of the broader social context on mental ill-health.


* 'Older adults' are categorised as individuals 55+ years of age as it is generally accepted that individuals with intellectual disabilities, not just people with Down syndrome, show signs of premature ageing.
** Scotland's Census 2011: the only comprehensive consistent source of national and local data about people, their key characteristics, and household composition.

Planned Impact

Third Sector organisations: The proposed research will help our third sector partner, PAMIS, to tailor the support it provides to its carer members by producing a report on the research findings highlighting the pivotal points where carers' mental ill-health is at risk. PAMIS will use the research findings to discuss with its members the necessary steps required to prevent/ameliorate mental ill-health. Other third sector organisations have and will be approached to hear about the research and to be involved with dissemination of research findings and attending workshops.

Carers: PAMIS will recruit two parent carers to attend advisory committee meetings to ensure co-production of knowledge with research users. A DVD will be produced in collaboration with PAMIS and parent carers to share the research findings, the experiences of being a carer and what steps can be taken to address mental ill-health. The DVD will be disseminated widely (hard copies to (e.g. carers, carer organisations) and link to video on social media/PAMIS, University of Glasgow and Scottish Learning Disabilities Observatory websites) to raise national and international awareness of mental ill-health in parent carers. The involvement of carers is essential as their expertise is invaluable. Carers will benefit from gaining transferable skills including research skills, organising workshops and decision making as part of a wider team.

People with intellectual disabilities: Helping carers will not only prevent their unnecessary suffering, it will also help the wellbeing of the son or daughter they care for, and may break the vicious spiralling circle that their inter-dependent relationship can effect. People with intellectual disabilities will be invited to dissemination workshops and accessible findings will also be produced.

Health & public policy makers and Service commissioners:Findings will inform policy-makers and service commissioners what formal supports mothers need in order to address/prevent mental ill-health. Workshops will be organised in collaboration with PAMIS to inform policy makers, academics, the public, other potential beneficiaries and users of research about our project and to discuss the next steps in taking these findings forward in order to reduce mental ill-health in this group of carers. It is hoped that active steps will be taken to enhance the health and quality of life of parent carers by increasing the effectiveness of current public services and policy. We hope, for example, that it will provide impetus for change in public spending, from a focus almost entirely on coping with crisis (Balmer, 2015), to an investment in preventive or anticipatory strategies.

Health & Social Care: Findings will inform professionals about mental ill-health, which will in turn, help them to support mothers at pivotal points in the caregiving trajectory including post caregiving, thus leading to improvements in future care, quality of care and improved quality of life for carers.

Academics with an interest in mental health, intellectual disabilities, health informatics, public health or social sciences (nationally and internationally): Findings will demonstrate the success and necessary steps in using a novel and highly cost effective method to address important and overdue questions on mental ill-health, an area that is of international importance. This research adds a significant contribution within the caregiving and intellectual disability literature, addressing an area that has previously received little attention. Findings will be presented at national and international conferences and it is anticipated that this will lead to future collaborations across different organisations on taking these findings forward.

The government: We will liaise with the press and produce project press releases to publicise project findings at key points when it could influence government legislation.

Publications

10 25 50
 
Description Mothers of people with intellectual disabilities face exceptional challenges and may be more prone to experiencing mental ill-health compared to other mothers, and this may differ at different stages of the caregiving trajectory. However, there is no evidence-synthesis on this topic. As part of this project, we aimed to systematically review evidence in this area, and to identify gaps in the existing literature.

The systematic review was prospectively registered with Prospero (CRD42018088197). Medline, Embase, CINAHL and PsycINFO databases were searched. No time limits were applied. Studies were limited to English language. Inclusion criteria were mothers of people with intellectual disabilities, excluding those without a comparison group of mothers of typically developing/ed children. Data were extracted from selected studies using a structured database. Study selection and quality appraisal was double-rated. Where appropriate, meta-analyses were performed.

34/8,940 retrieved articles were included, of which 10 reported on anxiety, 27 on depression, and 23 on other indicators of mental ill-health (stress/common mental disorders). Mothers of individuals with intellectual disabilities experienced poorer mental health. Meta-analyses revealed significant findings for depression, and parenting stress. Findings were more marked for mothers whose children additionally had autism, and less marked for mothers of children with Down syndrome. Identified gaps included scarce research on mental ill-health of mothers of adults with intellectual disabilities, and on mothers of different ages, or at different stages of the caregiving trajectory.

The process of navigating access to the linked data required for the empirical stage of the project, including Scotland's Census 2011, Prescribing Information System, Scottish Morbidity Records 04 - Mental Health Inpatient and Day Case and National Records of Scotland Register of Deaths, is still ongoing. We have experienced further delays with obtaining access to the linked data and have recently requested a further no cost extension to the project end date. We have been informed by National Records Scotland that the linked data should be available to access by the end of March 2020.
Exploitation Route This research will: (i) raise national and international awareness of the mental health of maternal carers of a son/daughter with intellectual disabilities across and beyond the caregiving trajectory; (ii) help our third sector partner, Profound and Multiple Impairment Service (PAMIS), to tailor the support it provides to its carer members; (iii) improve professional understanding of when additional support is required to prevent/ameliorate mental ill-health, and (iv) inform policy-makers and service commissioners of the formal supports required to address/prevent mental ill-health.In summary, the findings from this research will provide information and greater awareness about mental ill-health of maternal carers to professionals, service providers and carers themselves
Sectors Healthcare,Government, Democracy and Justice

 
Title Data linkage of Scotland's Census 2011 with routinely collected health and administrative data 
Description For this project, we are utilising the data collected through Scotland's Census 2011. This census is unique both among the UK's 2011 Censuses and world-wide in including a question on 'intellectual disability', and also specifically differentiating this from specific learning difficulties such as dyslexia and dyscalculia. The Northern Ireland Census 2011 did not distinguish intellectual disabilities from other conditions, which are markedly different from intellectual disabilities, and England and Wales Censuses 2011 did not include questions on either. We are also not aware of any other population census elsewhere in the world, which would systematically investigate prevalence of intellectual disabilities. Because of the data collected through Scotland's Census 2011, for the first time, mothers with a caring role can be identified, as can households with a child or adult with intellectual disabilities, and the individual characteristics of both mother and child can be linked. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact This is a novel method using existing health and administrative datasets to investigate mental ill-health prevalence in mothers of a son/daughter with intellectual disabilities across the caregiving trajectory, including post caregiving, and the socioeconomic factors that compound or mitigate against it. We are utilising research methodology, which allows us to study the said subject in a whole country population in a very time, resource and cost effective manner, drawing on the state of the art informatics infrastructure of the public sector, government and health organisations in Scotland. This pioneering research will provide unique insights into the multiple social determinants of health that impact on health outcomes of maternal carers and contribute to building the empirical evidence on intersectionality. This is needed so services can deliver the right support, in the right place, when it is most required. This will enrich our understanding of the complex interrelationship between socioeconomic factors and caregiving. With this information, important and overdue questions on mental ill-health, and the dynamics of inequality and intersectionality can be addressed, which will subsequently identify gaps in current services and provide evidence to inform professional support for mothers at pivotal points in the caregiving trajectory, including post caregiving. 
 
Title Data linkage of Scotland's Census 2011 with routinely collected health and administrative data 
Description The following datasets have been linked: 1) Scotland's Census 2011 will be used to identify: mothers caring for a son or daughter with intellectual disabilities; mothers of a child without intellectual disabilities; women without children living at home; mental health condition status; and individual, household, and child characteristics. It is the only survey which provides a detailed picture of the entire population. It is unique nationally as it covers everyone at the same time (27th March 2011), and asks the same core questions of everyone (e.g. age, gender, marital status, employment status). It is unique internationally, as it asks about intellectual disabilities (and distinguishes this from specific learning difficulties such as dyslexia). It includes information about long-term conditions including mental health condition, developmental disorder (e.g. autistic spectrum disorder or Asperger's syndrome), blind or sight loss, deaf or hearing impairments, and a general health rating. 2) Community Health Index (CHI) Database will be used to CHI seed the study individuals included from the Census 2011. The CHI number is a unique identifier for each person in Scotland and is included in all health databases, enabling linkage. It covers 97% of Scotland's population. 3) Prescribing Information System (PIS) will be used to identify mothers mental ill-health by use of hypnotic, anxiolytic and antidepressant medication from 27th March 2010 (one year prior to Census completion) up to the most recent data in 2017, to compare mental ill-health pre and post bereavement). It includes names of all drugs from dispensed prescriptions. The prescriptions include the patients' unique CHI number, hence prescriptions can be linked at the individual level with the other datasets. 4) Scottish Morbidity Records 04 (SMR04) - Mental Health Inpatient and Day Case dataset will be used to identify mothers who received psychiatric inpatient or day care, from 27th March 2010 (one year prior to Census completion) up to the most recent data in 2017. It includes episode level data, and also patients CHI number, hence enabling linkage. It includes a wide variety of information, e.g. patient characteristics, diagnosis. 5) National Records Scotland (NRS) Register of deaths will be used to identify deaths of people with intellectual disabilities since Scotland's Census 2011 (28th March 2011) up to the most recent data in 2017, allowing mothers mental ill-health to be compared pre and post bereavement using PIS and SMR04 data. The registration of a death in Scotland is controlled by the Registration of Births, Deaths and Marriages (Scotland) Act 1965. The register includes CHI number. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact This is a first study to identify mothers of people with intellectual disabilities across all age groups, all stages of the caregiving trajectory, all social classes, and across the country. The research dataset created as a result of the data linkage of several health and administrative data sources willl subsequently enable us to identify mothers of people with intellectual disabilities in the whole population of Scotland and compare their mental health with that of mothers of typically developing offspring and women without children. The study findings will add much more than a significant contribution to the gap in the caregiving literature. This study will provide unique insights into the multiple social determinants of health that impact on health outcomes of maternal carers and contribute to building the empirical evidence on intersectionality. The proposed research will also raise national and international awareness of the mental health of maternal carers of a son/daughter with intellectual disabilities across the caregiving trajectory and post caregiving. It will improve professional understanding of when additional support is required to prevent/ameliorate mental ill-health, and inform policy-makers and service commissioners what formal supports mothers need in order to address/prevent mental ill-health. It will also help our third sector partners to tailor the support they provide to their carer members. It is hoped these findings will provide impetus for change in public spending, from a focus almost entirely on coping with crisis, to an investment in preventive or anticipatory strategies. We also hope that the uniqueness and benefits of Scotland's Census 2011 question on intellectual disabilities will inspire other countries to include the same question in future Censuses and that the methods used in this study will enthuse researchers to investigate an area that is of international importance. 
 
Description Partnership with PAMIS, Mencap, Carers Trust Scotland and Mental Health Foundation 
Organisation Carers Trust Scotland
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have recruited collaborators through various discussions about the project, presenting at third sector organisations and national conferences, speaking with mothers of children with ID and distributing information leaflets about the proposed research. This has led to considerable interest from our partners who include PAMIS, Carers Trust Scotland, Mental Health Foundation and Mencap. This proposed project will provide information and greater awareness about mental ill-health of maternal carers to professionals, service providers and carers themselves. All third sector organisations will be directly informed about the project findings, namely (i) the prevalence of mental ill-health in maternal carers across Scotland (ii) the determinants (e.g. socio-economic impact) of mental ill-health and (iii) project recommendations for service delivery. We will also organise, in collaboration with our third sector partners, a number of workshops to ensure that all project findings are effectively communicated to all stakeholders. The workshops will be promoted through (i) our third sector partners' existing network of carers and practitioners and (ii) the University of Glasgow. The project findings will also be disseminated widely by means of social media (website, Twitter, Facebook), a DVD of research findings, a detailed and accessible summary report, and conference presentations both nationally and internationally. Two peer-reviewed publications will also be produced, the first targeting professionals interested in intellectual disabilities and mental health (e.g. Journal of Intellectual Disability Research) and the other, broader social scientists (e.g. Social Science and Medicine). It is hoped that our third sector partners will use these outputs to discuss with their members the research findings and necessary steps required to prevent/ameliorate mental ill-health. Based on the research findings, we will also set up a round table discussion with key stakeholders including the research team, third sector partners, policy makers, carers and health practitioners' to identify the next steps in terms of implementing research outcomes as well as the identification of future research priorities. This method provides an excellent forum for all stakeholders to come together to deliberate complex issues; for facilitating action planning; and for creating future recommendations. The round table discussion will include: a presentation of the research findings; followed by a set of specific questions (based on the research findings) that need to be discussed and answered; implications for policy and practice; implications for future research priorities and; next steps. Based on this discussion, we will produce a report of recommended next steps which will be disseminated and presented widely among policy-makers, practitioners and our third sector partners.
Collaborator Contribution Our third sector partners provide learning disability and carers service provision: 1) PAMIS supports people with profound and multiple intellectual disabilities, their families, carers and professionals in Scotland; 2) Carers Trust Scotland provides comprehensive carers support services in Scotland; 3) Mental Health Foundation delivers ground-breaking evidence and runs practice-informed programmes on mental health in the UK; 4) Mencap runs services, schemes, programmes and events to improve the lives of people with intellectual disabilities and their families in the UK. Our third sector partners will help us adopt a varied and diverse strategy for dissemination to ensure that we produce outputs that are useful, timely, appropriate and action orientated. We will provide reports targeted for a variety of audiences (e.g. carers, people with intellectual disabilities, health and social care practitioners and commissioners, policy-makers), which will help the third sector project partners to tailor the support they provide to their carer members. We will also ask partners to recruit parent carers to attend advisory committee meetings to ensure co-production of knowledge with research users. A DVD will be produced in collaboration with partner organisation representatives and parent carers to share the research findings, the experiences of being a carer and steps, which can be taken to address mental ill-health. The DVD will be disseminated widely to carers via partner organisations, University of Glasgow and Scottish Learning Disabilities Observatory social media and website platforms to raise national and international awareness of mental ill-health in parent carers.
Impact This project is still in its early stages. In January 2018, we held a project planning meeting. The meeting was attended by a representative of one of our third sector partners, PAMIS, who contributed to discussions around building a further network of third sector collaborators. During the meeting, we also discussed challenges arising from proposed data linkage as well as plans for dissemination and project branding. All other planned outputs and outcomes are detailed in the sections describing the contribution made by the research team and the third sector project partners.
Start Year 2018
 
Description Partnership with PAMIS, Mencap, Carers Trust Scotland and Mental Health Foundation 
Organisation Mencap
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have recruited collaborators through various discussions about the project, presenting at third sector organisations and national conferences, speaking with mothers of children with ID and distributing information leaflets about the proposed research. This has led to considerable interest from our partners who include PAMIS, Carers Trust Scotland, Mental Health Foundation and Mencap. This proposed project will provide information and greater awareness about mental ill-health of maternal carers to professionals, service providers and carers themselves. All third sector organisations will be directly informed about the project findings, namely (i) the prevalence of mental ill-health in maternal carers across Scotland (ii) the determinants (e.g. socio-economic impact) of mental ill-health and (iii) project recommendations for service delivery. We will also organise, in collaboration with our third sector partners, a number of workshops to ensure that all project findings are effectively communicated to all stakeholders. The workshops will be promoted through (i) our third sector partners' existing network of carers and practitioners and (ii) the University of Glasgow. The project findings will also be disseminated widely by means of social media (website, Twitter, Facebook), a DVD of research findings, a detailed and accessible summary report, and conference presentations both nationally and internationally. Two peer-reviewed publications will also be produced, the first targeting professionals interested in intellectual disabilities and mental health (e.g. Journal of Intellectual Disability Research) and the other, broader social scientists (e.g. Social Science and Medicine). It is hoped that our third sector partners will use these outputs to discuss with their members the research findings and necessary steps required to prevent/ameliorate mental ill-health. Based on the research findings, we will also set up a round table discussion with key stakeholders including the research team, third sector partners, policy makers, carers and health practitioners' to identify the next steps in terms of implementing research outcomes as well as the identification of future research priorities. This method provides an excellent forum for all stakeholders to come together to deliberate complex issues; for facilitating action planning; and for creating future recommendations. The round table discussion will include: a presentation of the research findings; followed by a set of specific questions (based on the research findings) that need to be discussed and answered; implications for policy and practice; implications for future research priorities and; next steps. Based on this discussion, we will produce a report of recommended next steps which will be disseminated and presented widely among policy-makers, practitioners and our third sector partners.
Collaborator Contribution Our third sector partners provide learning disability and carers service provision: 1) PAMIS supports people with profound and multiple intellectual disabilities, their families, carers and professionals in Scotland; 2) Carers Trust Scotland provides comprehensive carers support services in Scotland; 3) Mental Health Foundation delivers ground-breaking evidence and runs practice-informed programmes on mental health in the UK; 4) Mencap runs services, schemes, programmes and events to improve the lives of people with intellectual disabilities and their families in the UK. Our third sector partners will help us adopt a varied and diverse strategy for dissemination to ensure that we produce outputs that are useful, timely, appropriate and action orientated. We will provide reports targeted for a variety of audiences (e.g. carers, people with intellectual disabilities, health and social care practitioners and commissioners, policy-makers), which will help the third sector project partners to tailor the support they provide to their carer members. We will also ask partners to recruit parent carers to attend advisory committee meetings to ensure co-production of knowledge with research users. A DVD will be produced in collaboration with partner organisation representatives and parent carers to share the research findings, the experiences of being a carer and steps, which can be taken to address mental ill-health. The DVD will be disseminated widely to carers via partner organisations, University of Glasgow and Scottish Learning Disabilities Observatory social media and website platforms to raise national and international awareness of mental ill-health in parent carers.
Impact This project is still in its early stages. In January 2018, we held a project planning meeting. The meeting was attended by a representative of one of our third sector partners, PAMIS, who contributed to discussions around building a further network of third sector collaborators. During the meeting, we also discussed challenges arising from proposed data linkage as well as plans for dissemination and project branding. All other planned outputs and outcomes are detailed in the sections describing the contribution made by the research team and the third sector project partners.
Start Year 2018
 
Description Partnership with PAMIS, Mencap, Carers Trust Scotland and Mental Health Foundation 
Organisation Mental Health Foundation
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have recruited collaborators through various discussions about the project, presenting at third sector organisations and national conferences, speaking with mothers of children with ID and distributing information leaflets about the proposed research. This has led to considerable interest from our partners who include PAMIS, Carers Trust Scotland, Mental Health Foundation and Mencap. This proposed project will provide information and greater awareness about mental ill-health of maternal carers to professionals, service providers and carers themselves. All third sector organisations will be directly informed about the project findings, namely (i) the prevalence of mental ill-health in maternal carers across Scotland (ii) the determinants (e.g. socio-economic impact) of mental ill-health and (iii) project recommendations for service delivery. We will also organise, in collaboration with our third sector partners, a number of workshops to ensure that all project findings are effectively communicated to all stakeholders. The workshops will be promoted through (i) our third sector partners' existing network of carers and practitioners and (ii) the University of Glasgow. The project findings will also be disseminated widely by means of social media (website, Twitter, Facebook), a DVD of research findings, a detailed and accessible summary report, and conference presentations both nationally and internationally. Two peer-reviewed publications will also be produced, the first targeting professionals interested in intellectual disabilities and mental health (e.g. Journal of Intellectual Disability Research) and the other, broader social scientists (e.g. Social Science and Medicine). It is hoped that our third sector partners will use these outputs to discuss with their members the research findings and necessary steps required to prevent/ameliorate mental ill-health. Based on the research findings, we will also set up a round table discussion with key stakeholders including the research team, third sector partners, policy makers, carers and health practitioners' to identify the next steps in terms of implementing research outcomes as well as the identification of future research priorities. This method provides an excellent forum for all stakeholders to come together to deliberate complex issues; for facilitating action planning; and for creating future recommendations. The round table discussion will include: a presentation of the research findings; followed by a set of specific questions (based on the research findings) that need to be discussed and answered; implications for policy and practice; implications for future research priorities and; next steps. Based on this discussion, we will produce a report of recommended next steps which will be disseminated and presented widely among policy-makers, practitioners and our third sector partners.
Collaborator Contribution Our third sector partners provide learning disability and carers service provision: 1) PAMIS supports people with profound and multiple intellectual disabilities, their families, carers and professionals in Scotland; 2) Carers Trust Scotland provides comprehensive carers support services in Scotland; 3) Mental Health Foundation delivers ground-breaking evidence and runs practice-informed programmes on mental health in the UK; 4) Mencap runs services, schemes, programmes and events to improve the lives of people with intellectual disabilities and their families in the UK. Our third sector partners will help us adopt a varied and diverse strategy for dissemination to ensure that we produce outputs that are useful, timely, appropriate and action orientated. We will provide reports targeted for a variety of audiences (e.g. carers, people with intellectual disabilities, health and social care practitioners and commissioners, policy-makers), which will help the third sector project partners to tailor the support they provide to their carer members. We will also ask partners to recruit parent carers to attend advisory committee meetings to ensure co-production of knowledge with research users. A DVD will be produced in collaboration with partner organisation representatives and parent carers to share the research findings, the experiences of being a carer and steps, which can be taken to address mental ill-health. The DVD will be disseminated widely to carers via partner organisations, University of Glasgow and Scottish Learning Disabilities Observatory social media and website platforms to raise national and international awareness of mental ill-health in parent carers.
Impact This project is still in its early stages. In January 2018, we held a project planning meeting. The meeting was attended by a representative of one of our third sector partners, PAMIS, who contributed to discussions around building a further network of third sector collaborators. During the meeting, we also discussed challenges arising from proposed data linkage as well as plans for dissemination and project branding. All other planned outputs and outcomes are detailed in the sections describing the contribution made by the research team and the third sector project partners.
Start Year 2018
 
Description Partnership with PAMIS, Mencap, Carers Trust Scotland and Mental Health Foundation 
Organisation PAMIS
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have recruited collaborators through various discussions about the project, presenting at third sector organisations and national conferences, speaking with mothers of children with ID and distributing information leaflets about the proposed research. This has led to considerable interest from our partners who include PAMIS, Carers Trust Scotland, Mental Health Foundation and Mencap. This proposed project will provide information and greater awareness about mental ill-health of maternal carers to professionals, service providers and carers themselves. All third sector organisations will be directly informed about the project findings, namely (i) the prevalence of mental ill-health in maternal carers across Scotland (ii) the determinants (e.g. socio-economic impact) of mental ill-health and (iii) project recommendations for service delivery. We will also organise, in collaboration with our third sector partners, a number of workshops to ensure that all project findings are effectively communicated to all stakeholders. The workshops will be promoted through (i) our third sector partners' existing network of carers and practitioners and (ii) the University of Glasgow. The project findings will also be disseminated widely by means of social media (website, Twitter, Facebook), a DVD of research findings, a detailed and accessible summary report, and conference presentations both nationally and internationally. Two peer-reviewed publications will also be produced, the first targeting professionals interested in intellectual disabilities and mental health (e.g. Journal of Intellectual Disability Research) and the other, broader social scientists (e.g. Social Science and Medicine). It is hoped that our third sector partners will use these outputs to discuss with their members the research findings and necessary steps required to prevent/ameliorate mental ill-health. Based on the research findings, we will also set up a round table discussion with key stakeholders including the research team, third sector partners, policy makers, carers and health practitioners' to identify the next steps in terms of implementing research outcomes as well as the identification of future research priorities. This method provides an excellent forum for all stakeholders to come together to deliberate complex issues; for facilitating action planning; and for creating future recommendations. The round table discussion will include: a presentation of the research findings; followed by a set of specific questions (based on the research findings) that need to be discussed and answered; implications for policy and practice; implications for future research priorities and; next steps. Based on this discussion, we will produce a report of recommended next steps which will be disseminated and presented widely among policy-makers, practitioners and our third sector partners.
Collaborator Contribution Our third sector partners provide learning disability and carers service provision: 1) PAMIS supports people with profound and multiple intellectual disabilities, their families, carers and professionals in Scotland; 2) Carers Trust Scotland provides comprehensive carers support services in Scotland; 3) Mental Health Foundation delivers ground-breaking evidence and runs practice-informed programmes on mental health in the UK; 4) Mencap runs services, schemes, programmes and events to improve the lives of people with intellectual disabilities and their families in the UK. Our third sector partners will help us adopt a varied and diverse strategy for dissemination to ensure that we produce outputs that are useful, timely, appropriate and action orientated. We will provide reports targeted for a variety of audiences (e.g. carers, people with intellectual disabilities, health and social care practitioners and commissioners, policy-makers), which will help the third sector project partners to tailor the support they provide to their carer members. We will also ask partners to recruit parent carers to attend advisory committee meetings to ensure co-production of knowledge with research users. A DVD will be produced in collaboration with partner organisation representatives and parent carers to share the research findings, the experiences of being a carer and steps, which can be taken to address mental ill-health. The DVD will be disseminated widely to carers via partner organisations, University of Glasgow and Scottish Learning Disabilities Observatory social media and website platforms to raise national and international awareness of mental ill-health in parent carers.
Impact This project is still in its early stages. In January 2018, we held a project planning meeting. The meeting was attended by a representative of one of our third sector partners, PAMIS, who contributed to discussions around building a further network of third sector collaborators. During the meeting, we also discussed challenges arising from proposed data linkage as well as plans for dissemination and project branding. All other planned outputs and outcomes are detailed in the sections describing the contribution made by the research team and the third sector project partners.
Start Year 2018
 
Description Project Twitter account 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact In March 2018, we set up a designated Twitter account where we share all news and updates relating to the project. Our audience is steadily growing and includes third sector carers organisations based in the UK. To date, we have used this channel of communication to disseminate short video abstracts and a blog post presenting more information about the project. We have also cross-posted these updates via the Scottish Learning Disabilities Observatory You Tube channel as well as team and two individual Twitter accounts of Dr Deborah Kinnear and Dr Ewelina Rydzewska's, which currently have a combined total of 1,436 followers.

Links to You Tube outputs:
https://www.youtube.com/watch?v=xyeC3Z6CauI
https://www.youtube.com/watch?v=5EtMy4rYQ5g

Link to blog:
https://sldo.wordpress.com
Year(s) Of Engagement Activity 2018,2019
URL https://twitter.com/Mothers_ID_ABC
 
Description Project blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact In 2018, we wrote a blog post about the project's main focus, aims and objectives. The post was shared via the Scottish Learning Disabilities Observatory blog. We further cross-posted the blog on the Observatory and project's Twitter accounts.
Year(s) Of Engagement Activity 2018
URL https://sldo.wordpress.com/
 
Description Project meeting with collaborators 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact To date, we have held one meeting involving the wider study team members, including a representative of one of our third sector project partners, PAMIS, an organisation supporting people with profound multiple learning disabilities and their families, carers and professionals. During the meeting, we presented the proposed research, discussed the initial project stages and challenges associated with delays regarding access to linked data. Throughout the past calendar year, we have also been in email communication with the remaining project partners, including representative from Carers Trust, Mencap and Mental Health Foundation.
Year(s) Of Engagement Activity 2018
 
Description Project meeting with third sector partner PAMIS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact In September 2017, we were invited by our third sector partner PAMIS to present the proposed research to a group of mothers of children with intellectual disabilities. This meeting led to two mothers contacting the Principal Investigator and asking to be involved in supporting the project via group meetings and/or through workshops and project findings dissemination.
Year(s) Of Engagement Activity 2017
 
Description Project webpages with video and easy read abstracts 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We have created a designated project webpage on the Scottish Learning Disabilities Observatory website where we included the main information about the project's aims and objectives. This information is presented in a form of a written and video abstracts to ensure accessibility of our outputs. Both abstracts have been further cross-posted on the Observatory's You Tube channel. The abstracts have been viewed by 118 viewers. Links to respective outputs are included below:

https://www.sldo.ac.uk/projects/carers-and-families/maternal-mental-health/
https://www.youtube.com/watch?v=5EtMy4rYQ5g

We have also created an easy read version of the project website where we have included all written information in an easy read format:
https://www.sldo.ac.uk/accessible-information/easy-read-information-about-projects/maternal-mental-health/
Year(s) Of Engagement Activity 2018,2019
URL https://www.sldo.ac.uk/projects/carers-and-families/maternal-mental-health/