Rosemary Lyons - Academia.edu (original) (raw)

Papers by Rosemary Lyons

Research paper thumbnail of A Rapid Realist Review of Quality Care Process Metrics Implementation in Nursing and Midwifery Practice

International Journal of Environmental Research and Public Health

Quality measurement initiatives promote quality improvement in healthcare but can be challenging ... more Quality measurement initiatives promote quality improvement in healthcare but can be challenging to implement effectively. This paper presents a Rapid Realist Review (RRR) of published literature on Quality Care-Process Metrics (QCP-M) implementation in nursing and midwifery practice. An RRR informed by RAMESES II standards was conducted as an efficient means to synthesize evidence using an expert panel. The review involved research question development, quality appraisal, data extraction, and evidence synthesis. Six program theories summarised below identify the key characteristics that promote positive outcomes in QCP-M implementation. Program Theory 1: Focuses on the evidence base and accessibility of the QCP-M and their ease of use by nurses and midwives working in busy and complex care environments. Program Theory 2: Examines the influence of external factors on QCP-M implementation. Program Theory 3: Relates to existing cultures and systems within clinical sites. Program Theor...

Research paper thumbnail of The value and contribution of intellectual disability nurses/nurses caring for people with intellectual disability in intellectual disability settings: A scoping review

Journal of Clinical Nursing, 2022

BackgroundPeople with intellectual disability experience poorer health and healthcare access issu... more BackgroundPeople with intellectual disability experience poorer health and healthcare access issues. As a leading role in healthcare provision for people with intellectual disability nurses are key to supporting person‐centred care and health outcomes. However, little is known about specialist intellectual disability nursing and their contribution to care provision for people with intellectual disability.MethodsA systematic scoping review. Searches of seven academic databases including MEDLINE, Cumulative Index to Nursing and Allied Health Literature, Academic Search Complete, PsycINFO, Embase, Scopus and Web of Science were conducted to identify relevant literature. Literature addressing intellectual disability nursing or nursing care for people with intellectual disability in intellectual disability centres/units/care homes were reviewed and reported as per PRISMA‐ScR checklist and PRISMA flow diagram.ResultsThe published literature (n = 68) is extensive and describes the value an...

Research paper thumbnail of Article Aggressive behaviour and its prevalence within five typologies

Crucial to understanding an individual, presenting with intellectual disability and the managemen... more Crucial to understanding an individual, presenting with intellectual disability and the management of their challenging behaviours, is the knowledge of the types of those specific behaviours. The term aggressive behaviour is a universal term that embraces many aspects of behaviour that vary in terms of severity, frequency and seriousness for the individual and those around them. Hence, greater consideration regarding intervention, management, person-centred strategies and preva-lence and frequency rates are required in service provision for individuals with intellectual disability and aggressive behaviour. This review presents the context of aggressive behaviour and its preva-lence within the five typologies of aggressive behaviour: verbal aggression, aggression against oth-ers, sexually inappropriate behaviour, self-injurious behaviour and aggression against property, as identified by Crocker et al. (2007). The focus of this review is to report on the prevalence of aggressive behav...

Research paper thumbnail of Nursing and midwifery quality care-metrics: intellectual disability services research report to OMNSD

n/aThis report presents the findings of a Nursing and Midwifery Quality Care Metrics project for ... more n/aThis report presents the findings of a Nursing and Midwifery Quality Care Metrics project for Intellectual Disability (ID) Services in Ireland. The aim of the project was to identify a final suite of nursing quality care process metrics and associated indicators. To achieve this purpose, seven work streams (acute, mental health, public health nursing, children, midwifery, older person, and intellectual disability services) were established and led by the Nursing and Midwifery Planning and Development Units (NMPDU) project officers (Appendix 1, 2, 3). Academic support was provided from three universities in Ireland (National University of Ireland Galway, University College Dublin and University of Limerick). It was agreed that a Quality Care Process Metric is a quantifiable measure that captures quality in terms of how (or to what extent) nursing care is being done in relation to an agreed standard. A Quality Care Process Indicator is a quantifiable measure that captures what nurses are doing to provide that care in relation to a specific tool or method.PUBLISHEDnon-peer-reviewe

Research paper thumbnail of Older persons services nursing quality care metrics final report to ONMSD

n/aThis report presents the findings of a Nursing and Midwifery Quality Care-Metrics project for ... more n/aThis report presents the findings of a Nursing and Midwifery Quality Care-Metrics project for Older Persons Services (OPS) in Ireland. The aim of the project was to identify a final suite of nursing quality care process metrics and associated indicators. To achieve this purpose, seven work-streams (acute, mental health, public health nursing, children, older persons services, intellectual disability and midwifery) were established and led by Nursing and Midwifery Planning and Development (Appendix 1, 2, 3). Academic support was provided from three universities in Ireland. It was agreed that a Quality Care Process Metric is a quantifiable measure that captures quality in terms of how (or to what extent) nursing care is being done in relation to an agreed standard. A Quality Care Process Indicator is a quantifiable measure that captures what nurses are doing to provide that care in relation to a specific tool or method.PUBLISHEDnon-peer-reviewe

Research paper thumbnail of A guidance framework to aid in the selection of nursing and midwifery care process metrics and indicators

Nursing Open, 2019

AimTo describe the development of a guidance framework to assist nurses and midwives in selecting... more AimTo describe the development of a guidance framework to assist nurses and midwives in selecting nursing and midwifery care process metrics and indicators for use in practice.BackgroundProcess metrics are measures of care provision activities by nurses and midwives.MethodsPhase 1 was a rapid review assessment of the literature conducted to identify an initial framework. Six electronic databases were searched with Google Scholar and reference tracking performed. Phase 2 was expert review of the developing framework by nursing and midwifery experts in practice, academia and an international expert in quality care metrics.ResultsThe literature assessment yielded 28 papers with 59 metric attributes identified. From this, a six‐domain framework was developed. Following expert review, the framework was reduced to four domains: “Process Focused,” “Important,” “Operational” and “Feasible.”ConclusionsThis is the first framework specifically to guide nurses and midwives in selecting nursing ...

Research paper thumbnail of Identifying the prevalence of aggressive behaviour reported by Registered Intellectual Disability Nurses in residential intellectual disability services: an Irish perspective

Advances in Mental Health and Intellectual Disabilities, 2014

Purpose – Despite the high incidence of aggressive behaviours among some individuals with intelle... more Purpose – Despite the high incidence of aggressive behaviours among some individuals with intellectual disability, Ireland has paid little attention to the prevalence of aggressive behaviours experienced by Registered Intellectual Disability Nurses (RNID). Within services the focus is mainly on intervention and management of such behaviours. Therefore a disparity occurs in that these interventions and management strategies have become the exclusive concern. Resulting in aggressive behaviour being seen as a sole entity, where similar interventions and management strategies are used for ambiguously contrasting aggressive behaviours. Consequently the ability to document and assess-specific behaviour typologies and their prevalence is fundamental not only to understand these behaviour types but also to orient and educate RNIDs in specific behaviour programme development. The paper aims to discuss these issues. Design/methodology/approach – This study reports on a survey of the prevalenc...

Research paper thumbnail of Families experiences of involvement in care planning in mental health services: An integrative literature review

Journal of psychiatric and mental health nursing, Jan 19, 2017

Mental health service policy stipulates that family carers be involved in care planning. To ident... more Mental health service policy stipulates that family carers be involved in care planning. To identify families experiences of care planning involvement in adult mental health services. An integrative review where electronic databases and grey literature were searched for papers published between 01 Jan 2005 and 10 February 2016. Fifteen papers met the inclusion criteria. Thematic analysis generated three themes: (1)families experience of collaboration, (2)families perceptions of professionals and (3)families impressions of the care planning process. Collaborative decision making is not regularly experienced by families with an 'us' and 'them' divide, perpetuated by a lack of communication, confidentiality constraints and a claim of 'insider knowledge' of service users. When involved families perceive care planning to be uncoordinated and that their lived experiences are not always appreciated. Families need to be valued, empowered and engaged in care planning ...

Research paper thumbnail of The effect of stress on health and its implications for nursing

British Journal of Nursing, 2013

Stress is an important issue within nursing and it is difficult to find agreement among those who... more Stress is an important issue within nursing and it is difficult to find agreement among those who are expert in the area regarding a concise definition of stress. Nevertheless stress is seen as a negative feeling affecting people's health either physically and/ or psychologically. However, stress is a normal part of life and considered necessary to increase functional capacity, whereas stress over a prolonged period or when extreme can cause distress which may have debilitating effects that reduce work output, increase absenteeism and reduce one's ability to cope with situations. The most important resource in any organisation is the employee; therefore maintaining and supporting their health is vital to ensure their ability to work, maintain standards and continuously improve standards of care. Leadership styles within organisations must facilitate staff to be involved in decision making; thereby staff feel more valued and work in an autonomous way. This article identifies ...

Research paper thumbnail of O Donovan et al 2013 Stress

Research paper thumbnail of Aggressive behaviour and its prevalence within five typologies

Journal of Intellectual Disabilities, 2013

Crucial to understanding an individual, presenting with intellectual disability and the managemen... more Crucial to understanding an individual, presenting with intellectual disability and the management of their challenging behaviours, is the knowledge of the types of those specific behaviours. The term aggressive behaviour is a universal term that embraces many aspects of behaviour that vary in terms of severity, frequency and seriousness for the individual and those around them. Hence, greater consideration regarding intervention, management, person-centred strategies and prevalence and frequency rates are required in service provision for individuals with intellectual disability and aggressive behaviour. This review presents the context of aggressive behaviour and its prevalence within the five typologies of aggressive behaviour: verbal aggression, aggression against others, sexually inappropriate behaviour, self-injurious behaviour and aggression against property, as identified by Crocker et al. (2007). The focus of this review is to report on the prevalence of aggressive behaviou...

Research paper thumbnail of The development of Nursing Quality Care Process Metrics and Indicators for use in Older Persons Care Settings: A Delphi‐Consensus Study

Journal of Advanced Nursing, 2019

AimTo develop a suite of nursing quality care process metrics and indicators for older persons ca... more AimTo develop a suite of nursing quality care process metrics and indicators for older persons care settings in Ireland.BackgroundRegulatory investigations of health system failures highlight non‐adherence to clinical guidelines and standards resulting in deficiencies in nursing care delivery. Limited attention has been paid to measuring nursing care processes particularly in the care of older people. Quality care process metrics can facilitate measurement of nurse‐sensitive measures of care.DesignA scoping literature review and modified Delphi‐Consensus Technique.MethodsA scoping review of literature published between January 2007 – January 2017 was conducted to identify nursing process metrics and indicators. The Delphi Consensus phase incorporated a four‐round electronic survey of 404 nurses and a consensus meeting with 13 stakeholders working in Older Persons Care Settings in Ireland.FindingsFrom the review, 33 potential metrics were identified. After all Delphi survey rounds, 2...

Research paper thumbnail of Primary care for persons with intellectual disability: Issues for practice (reprint special issue; Health and Wellness)

In tandem with a growing population, Ireland is further witness to a change in the demography of ... more In tandem with a growing population, Ireland is further witness to a change in the demography of persons with intellectual disability. The Annual Report of The National Intellectual Disability Database highlights in particular that people with intellectual disability are surviving into old age and that they are requiring services appropriate to their age group (Kelly et al., 2008). The trend for institutional care has been outmoded (Sheerin and McConkey, 2008; McConkey et al., 2005) with more persons with an intellectual disability living in the community. In 2008 a total of 26, 023 people were registered on the National Intellectual Disability Database (Kelly et al., 2008). From this database it is evident that there were more males (56.6%) than females (43.4%), with the highest proportion of both males and females diagnosed as having a moderate level of intellectual disability. Of these individuals, 25,433 were in receipt of services, 16,708 (64.2%) were living at home with family/carer and only 8290 (31.9%) were living in full time residential services. These residential services mainly included community group homes and residential centres while 950 individuals (3.7%) lived independently or semi independently (Kelly et al., 2008). This move to the community is based on the principle of normalisation (Wolfensberger 1972) who later reconceptualised normalisation and proposing to replace the term with 'social role valorisation' reflecting his concern that certain groups in society such as persons with intellectual disability were perceived as having devalued social roles (Wolfensberger 1983). He argued that devalued groups tend to be cast into negative roles and called for a move away from segregation, special treatment and institutionalisation. Social role valorisation embodies the ideal that persons with an intellectual disability should be integrated into society, and offered the opportunity to access generic services which serve the general public. In tandem with the increased life expectancy and prevalence of persons living in the community it follows that all healthcare workers of the future will be required at some level to engage and support persons with an intellectual disability and their family/carer(s).

Research paper thumbnail of A Rapid Realist Review of Quality Care Process Metrics Implementation in Nursing and Midwifery Practice

International Journal of Environmental Research and Public Health

Quality measurement initiatives promote quality improvement in healthcare but can be challenging ... more Quality measurement initiatives promote quality improvement in healthcare but can be challenging to implement effectively. This paper presents a Rapid Realist Review (RRR) of published literature on Quality Care-Process Metrics (QCP-M) implementation in nursing and midwifery practice. An RRR informed by RAMESES II standards was conducted as an efficient means to synthesize evidence using an expert panel. The review involved research question development, quality appraisal, data extraction, and evidence synthesis. Six program theories summarised below identify the key characteristics that promote positive outcomes in QCP-M implementation. Program Theory 1: Focuses on the evidence base and accessibility of the QCP-M and their ease of use by nurses and midwives working in busy and complex care environments. Program Theory 2: Examines the influence of external factors on QCP-M implementation. Program Theory 3: Relates to existing cultures and systems within clinical sites. Program Theor...

Research paper thumbnail of The value and contribution of intellectual disability nurses/nurses caring for people with intellectual disability in intellectual disability settings: A scoping review

Journal of Clinical Nursing, 2022

BackgroundPeople with intellectual disability experience poorer health and healthcare access issu... more BackgroundPeople with intellectual disability experience poorer health and healthcare access issues. As a leading role in healthcare provision for people with intellectual disability nurses are key to supporting person‐centred care and health outcomes. However, little is known about specialist intellectual disability nursing and their contribution to care provision for people with intellectual disability.MethodsA systematic scoping review. Searches of seven academic databases including MEDLINE, Cumulative Index to Nursing and Allied Health Literature, Academic Search Complete, PsycINFO, Embase, Scopus and Web of Science were conducted to identify relevant literature. Literature addressing intellectual disability nursing or nursing care for people with intellectual disability in intellectual disability centres/units/care homes were reviewed and reported as per PRISMA‐ScR checklist and PRISMA flow diagram.ResultsThe published literature (n = 68) is extensive and describes the value an...

Research paper thumbnail of Article Aggressive behaviour and its prevalence within five typologies

Crucial to understanding an individual, presenting with intellectual disability and the managemen... more Crucial to understanding an individual, presenting with intellectual disability and the management of their challenging behaviours, is the knowledge of the types of those specific behaviours. The term aggressive behaviour is a universal term that embraces many aspects of behaviour that vary in terms of severity, frequency and seriousness for the individual and those around them. Hence, greater consideration regarding intervention, management, person-centred strategies and preva-lence and frequency rates are required in service provision for individuals with intellectual disability and aggressive behaviour. This review presents the context of aggressive behaviour and its preva-lence within the five typologies of aggressive behaviour: verbal aggression, aggression against oth-ers, sexually inappropriate behaviour, self-injurious behaviour and aggression against property, as identified by Crocker et al. (2007). The focus of this review is to report on the prevalence of aggressive behav...

Research paper thumbnail of Nursing and midwifery quality care-metrics: intellectual disability services research report to OMNSD

n/aThis report presents the findings of a Nursing and Midwifery Quality Care Metrics project for ... more n/aThis report presents the findings of a Nursing and Midwifery Quality Care Metrics project for Intellectual Disability (ID) Services in Ireland. The aim of the project was to identify a final suite of nursing quality care process metrics and associated indicators. To achieve this purpose, seven work streams (acute, mental health, public health nursing, children, midwifery, older person, and intellectual disability services) were established and led by the Nursing and Midwifery Planning and Development Units (NMPDU) project officers (Appendix 1, 2, 3). Academic support was provided from three universities in Ireland (National University of Ireland Galway, University College Dublin and University of Limerick). It was agreed that a Quality Care Process Metric is a quantifiable measure that captures quality in terms of how (or to what extent) nursing care is being done in relation to an agreed standard. A Quality Care Process Indicator is a quantifiable measure that captures what nurses are doing to provide that care in relation to a specific tool or method.PUBLISHEDnon-peer-reviewe

Research paper thumbnail of Older persons services nursing quality care metrics final report to ONMSD

n/aThis report presents the findings of a Nursing and Midwifery Quality Care-Metrics project for ... more n/aThis report presents the findings of a Nursing and Midwifery Quality Care-Metrics project for Older Persons Services (OPS) in Ireland. The aim of the project was to identify a final suite of nursing quality care process metrics and associated indicators. To achieve this purpose, seven work-streams (acute, mental health, public health nursing, children, older persons services, intellectual disability and midwifery) were established and led by Nursing and Midwifery Planning and Development (Appendix 1, 2, 3). Academic support was provided from three universities in Ireland. It was agreed that a Quality Care Process Metric is a quantifiable measure that captures quality in terms of how (or to what extent) nursing care is being done in relation to an agreed standard. A Quality Care Process Indicator is a quantifiable measure that captures what nurses are doing to provide that care in relation to a specific tool or method.PUBLISHEDnon-peer-reviewe

Research paper thumbnail of A guidance framework to aid in the selection of nursing and midwifery care process metrics and indicators

Nursing Open, 2019

AimTo describe the development of a guidance framework to assist nurses and midwives in selecting... more AimTo describe the development of a guidance framework to assist nurses and midwives in selecting nursing and midwifery care process metrics and indicators for use in practice.BackgroundProcess metrics are measures of care provision activities by nurses and midwives.MethodsPhase 1 was a rapid review assessment of the literature conducted to identify an initial framework. Six electronic databases were searched with Google Scholar and reference tracking performed. Phase 2 was expert review of the developing framework by nursing and midwifery experts in practice, academia and an international expert in quality care metrics.ResultsThe literature assessment yielded 28 papers with 59 metric attributes identified. From this, a six‐domain framework was developed. Following expert review, the framework was reduced to four domains: “Process Focused,” “Important,” “Operational” and “Feasible.”ConclusionsThis is the first framework specifically to guide nurses and midwives in selecting nursing ...

Research paper thumbnail of Identifying the prevalence of aggressive behaviour reported by Registered Intellectual Disability Nurses in residential intellectual disability services: an Irish perspective

Advances in Mental Health and Intellectual Disabilities, 2014

Purpose – Despite the high incidence of aggressive behaviours among some individuals with intelle... more Purpose – Despite the high incidence of aggressive behaviours among some individuals with intellectual disability, Ireland has paid little attention to the prevalence of aggressive behaviours experienced by Registered Intellectual Disability Nurses (RNID). Within services the focus is mainly on intervention and management of such behaviours. Therefore a disparity occurs in that these interventions and management strategies have become the exclusive concern. Resulting in aggressive behaviour being seen as a sole entity, where similar interventions and management strategies are used for ambiguously contrasting aggressive behaviours. Consequently the ability to document and assess-specific behaviour typologies and their prevalence is fundamental not only to understand these behaviour types but also to orient and educate RNIDs in specific behaviour programme development. The paper aims to discuss these issues. Design/methodology/approach – This study reports on a survey of the prevalenc...

Research paper thumbnail of Families experiences of involvement in care planning in mental health services: An integrative literature review

Journal of psychiatric and mental health nursing, Jan 19, 2017

Mental health service policy stipulates that family carers be involved in care planning. To ident... more Mental health service policy stipulates that family carers be involved in care planning. To identify families experiences of care planning involvement in adult mental health services. An integrative review where electronic databases and grey literature were searched for papers published between 01 Jan 2005 and 10 February 2016. Fifteen papers met the inclusion criteria. Thematic analysis generated three themes: (1)families experience of collaboration, (2)families perceptions of professionals and (3)families impressions of the care planning process. Collaborative decision making is not regularly experienced by families with an 'us' and 'them' divide, perpetuated by a lack of communication, confidentiality constraints and a claim of 'insider knowledge' of service users. When involved families perceive care planning to be uncoordinated and that their lived experiences are not always appreciated. Families need to be valued, empowered and engaged in care planning ...

Research paper thumbnail of The effect of stress on health and its implications for nursing

British Journal of Nursing, 2013

Stress is an important issue within nursing and it is difficult to find agreement among those who... more Stress is an important issue within nursing and it is difficult to find agreement among those who are expert in the area regarding a concise definition of stress. Nevertheless stress is seen as a negative feeling affecting people's health either physically and/ or psychologically. However, stress is a normal part of life and considered necessary to increase functional capacity, whereas stress over a prolonged period or when extreme can cause distress which may have debilitating effects that reduce work output, increase absenteeism and reduce one's ability to cope with situations. The most important resource in any organisation is the employee; therefore maintaining and supporting their health is vital to ensure their ability to work, maintain standards and continuously improve standards of care. Leadership styles within organisations must facilitate staff to be involved in decision making; thereby staff feel more valued and work in an autonomous way. This article identifies ...

Research paper thumbnail of O Donovan et al 2013 Stress

Research paper thumbnail of Aggressive behaviour and its prevalence within five typologies

Journal of Intellectual Disabilities, 2013

Crucial to understanding an individual, presenting with intellectual disability and the managemen... more Crucial to understanding an individual, presenting with intellectual disability and the management of their challenging behaviours, is the knowledge of the types of those specific behaviours. The term aggressive behaviour is a universal term that embraces many aspects of behaviour that vary in terms of severity, frequency and seriousness for the individual and those around them. Hence, greater consideration regarding intervention, management, person-centred strategies and prevalence and frequency rates are required in service provision for individuals with intellectual disability and aggressive behaviour. This review presents the context of aggressive behaviour and its prevalence within the five typologies of aggressive behaviour: verbal aggression, aggression against others, sexually inappropriate behaviour, self-injurious behaviour and aggression against property, as identified by Crocker et al. (2007). The focus of this review is to report on the prevalence of aggressive behaviou...

Research paper thumbnail of The development of Nursing Quality Care Process Metrics and Indicators for use in Older Persons Care Settings: A Delphi‐Consensus Study

Journal of Advanced Nursing, 2019

AimTo develop a suite of nursing quality care process metrics and indicators for older persons ca... more AimTo develop a suite of nursing quality care process metrics and indicators for older persons care settings in Ireland.BackgroundRegulatory investigations of health system failures highlight non‐adherence to clinical guidelines and standards resulting in deficiencies in nursing care delivery. Limited attention has been paid to measuring nursing care processes particularly in the care of older people. Quality care process metrics can facilitate measurement of nurse‐sensitive measures of care.DesignA scoping literature review and modified Delphi‐Consensus Technique.MethodsA scoping review of literature published between January 2007 – January 2017 was conducted to identify nursing process metrics and indicators. The Delphi Consensus phase incorporated a four‐round electronic survey of 404 nurses and a consensus meeting with 13 stakeholders working in Older Persons Care Settings in Ireland.FindingsFrom the review, 33 potential metrics were identified. After all Delphi survey rounds, 2...

Research paper thumbnail of Primary care for persons with intellectual disability: Issues for practice (reprint special issue; Health and Wellness)

In tandem with a growing population, Ireland is further witness to a change in the demography of ... more In tandem with a growing population, Ireland is further witness to a change in the demography of persons with intellectual disability. The Annual Report of The National Intellectual Disability Database highlights in particular that people with intellectual disability are surviving into old age and that they are requiring services appropriate to their age group (Kelly et al., 2008). The trend for institutional care has been outmoded (Sheerin and McConkey, 2008; McConkey et al., 2005) with more persons with an intellectual disability living in the community. In 2008 a total of 26, 023 people were registered on the National Intellectual Disability Database (Kelly et al., 2008). From this database it is evident that there were more males (56.6%) than females (43.4%), with the highest proportion of both males and females diagnosed as having a moderate level of intellectual disability. Of these individuals, 25,433 were in receipt of services, 16,708 (64.2%) were living at home with family/carer and only 8290 (31.9%) were living in full time residential services. These residential services mainly included community group homes and residential centres while 950 individuals (3.7%) lived independently or semi independently (Kelly et al., 2008). This move to the community is based on the principle of normalisation (Wolfensberger 1972) who later reconceptualised normalisation and proposing to replace the term with 'social role valorisation' reflecting his concern that certain groups in society such as persons with intellectual disability were perceived as having devalued social roles (Wolfensberger 1983). He argued that devalued groups tend to be cast into negative roles and called for a move away from segregation, special treatment and institutionalisation. Social role valorisation embodies the ideal that persons with an intellectual disability should be integrated into society, and offered the opportunity to access generic services which serve the general public. In tandem with the increased life expectancy and prevalence of persons living in the community it follows that all healthcare workers of the future will be required at some level to engage and support persons with an intellectual disability and their family/carer(s).