Skip to content

Toggle service links

You are here

  1. Home
  2. Type of care
  3. Learning disability

Learning disability

The following resources examine caring for people with a learning disability, and carers who have a learning disability.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

People with learning disabilities and/or autism and their carers getting older: Confronting a Looming Crisis

Increased longevity means that an increasing proportion of people living with a learning disability are aged 45 and over and are transitioning into older age/retirement. It also means that ageing family members are increasingly playing an extended caregiving role into later life. A small scale study was carried out in the New Forest, Hampshire during 2018-19. Twenty-one older carers (5 were male) were interviewed about their experiences of caring for their older adult family members with learning disabilities and/or autism. The average age of the carers was 75 though 20% of the sample were over 80 years old.

Key findings:

Older carers are struggling to continue to care for their loved ones. Four main themes described their struggles:

1. Transition to retirement was felt to be a misnomer in the face of continuing responsibilities and duties to care and/or manage care. Little respite was available to take a break, take stock, or just do the things that most other ‘retired people’ do.

2. The Care Act 2014, despite its laudable goals, is yet to be applied sufficiently well to make a difference to the lives of people with learning disabilities and/or autism or their carers who took part in this study.

3. Challenges with social service provision including lack of continuity of social worker input, variable and declining levels of expertise, and pejorative attitudes towards carers appears to be worsening. That said, carers are understanding of the pressures on health and social care and are willing to work with them to improve the situation.

4. Carers’ fears for the future as they contemplate who will care for their loved one once they are no longer able to care for them.

There is a need for age-appropriate housing, weekend activities for people with learning disabilities, and respite for carers. Transformational change which includes trust-building and co-production between health and social services and carers is  needed to improve relationships between the parties. Meaningful partnerships between social workers and carers will reduce the problem of the frequent need of carers to urge social services to provide adequate care and support. Information on options for people with learning disabilities transitioning into old age as well as practical support will help reduce the risk of crisis situations happening when older carers can no longer care. 

Original source (some source materials require subscription or permission to access)

COVID-19 and the impact of the Closure of day services on People with intellectual disabilities

In mid-March Disability day services closed to people with intellectual disabilities with a small number of exceptions. In May and early June, Inclusion Ireland surveyed the people who use these services and their families on the impact the closure of service has had on them and the supports they have received in this time. In total, 291 family members answered our survey and 55 people with intellectual disabilities responded to an easy-to-read version of our survey giving a total response of 346. Peoples engagement with their service over the Covid period has been variable with some people reporting regular contact, daily online activities, and some face to face support while more than half of respondents have had very little meaningful  contact at all. The closure of day services impacting on the mental health of people cannot be underestimated. A significant number of respondents reported increased loneliness, increased anxiety, and increased challenging behaviour or anger. At the same time more that 20% of people reported being happier during the lock down. As services reopen and start to support people with intellectual disabilities in a ‘different or remote’ manner the needs of people with high support needs and complex disabilities must be considered carefully. This group of people tell us they cannot access virtual technology even with one on one family support to do so.

Original source (some source materials require subscription or permission to access)

COVID-19 and Intellectual Disability: Supporting people with intellectual disabilities and their families

In March 2020 the World Health Organisation (WHO) declared the outbreak of the new Coronavirus, or COVID19, as a pandemic, due to its rapid spread around the globe. Ireland, along with other countries around the world, is taking action and putting in place plans to curtail the COVID-19 virus. However, people with intellectual disabilities are a group at a significantly higher risk than others. As a result, it is important that additional considerations and supports are put in place for people with disabilities during this COVID-19 outbreak, and that actions specific to this group in society are taken by Government, disability services, communities and people with disabilities themselves and their families. These actions must be in line with the UNCRPD, and must support people with intellectual disabilities and their families through this emergency period, in line with Article 11 of the Convention which states that all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk are taken.

Original source (some source materials require subscription or permission to access)

Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers

Background: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness. Method: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project. Results: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture. Conclusions: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

Access source material through DOI

The Mental Well-Being of Informal Carers of Adults on the Autism Spectrum: a Systematic Review

Carers of autistic adults may experience increased day-to-day stress relating to their caring role. This review aims to (1) summarise the current literature on factors that affect mental well-being in carers of autistic adults and (2) map these results to an existing conceptual model of carer psychological well-being for individuals with developmental disabilities. Twenty-three studies met inclusion criteria. Some factors, such as adaptive skills and the quality of the caring relationship, were consistently associated with carer mental well-being. Conflicting or weak associations were found with several factors, including carer age and formal services received. These findings may be mapped to the King et al. (Journal of Pediatric Psychology, 24(1), 41–53, 1999) model, and adaptations to this model are discussed. 

Access source material through DOI

A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism

This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services. 

Access source material through DOI

The Impact of Lifelong Family Care on Family Caregivers’ Perceptions of the Sexuality of Young Adults with Intellectual Disabilities in the Western Cape of South Africa

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults’ behavior and determined what was appropriate or not with regards to the young adults’ sexuality. Concerns about the young adults’ future care were central in the family caregivers’ responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID. 

Access source material through DOI

Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review

Background: While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regard to SRH for women and girls with ID.; Method: We used Arksey and O'Malley's six-stage scoping framework, with Levac, Colquhoun and O'Brien's revisions, to evaluate identified sources. We searched three electronic databases, six ID journals and reference lists in full-text articles. Inclusion criteria included (1) primary and secondary source research studies in peer-reviewed journals; (2) published in English; (3) all research methodologies (i.e. qualitative, quantitative, mixed methods and systematic reviews or commentaries); (4) published between 2000 and 2016; and (5) studies from any country.; Results: The search yielded 2062 studies; 57 articles met inclusion criteria. Most studies employed purposive, convenience or criterion sampling. Participants included people with ID, family caregivers, paid caregivers and health-care professionals. Findings were summarised thematically: (1) menstruation and menopause; (2) vaccinations and preventive screenings; (3) supporting sexuality and healthy relationships; (4) coordinating with health-care providers and (5) contraception and sterilisation.; Conclusions: Findings from this scoping review underscore the need for more and better-quality research, including how family caregivers assist women and girls with ID access perinatal and preventive SRH services and sexual abuse education. Family caregivers, women and girls with ID and health-care providers need increased access to information about SRH.

Access source material through DOI

Planning for the future: Exploring the experiences of older carers of adult children with a learning disability

Accessible summary: There are a large number of adults with learning disabilities who live with and are cared for by their parents.There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring.This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home.Twelve carers were interviewed individually.The study highlights the unmet needs of older family carers and shows the value of support from a carer perspective.

Background: There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities. Methods: Semi‐structured carer interviews (n = 12) were conducted and analysed thematically. Results: Four themes were identified (a) emotional needs of carer, (b) future planning, (c) accessing other services and resources and (d) links to adult care services. Carers welcomed the flexibility of the intervention and its focus on support for them, relieving their sense of isolation. Conclusions: The research highlights the unmet needs of older family carers and shows the value of tailored support from a carer perspective. The findings have implications for national social care provision delivered to carers of adult children with learning disabilities in rural areas.

Access source material through DOI

The moderating role of age in the relationship between different stressors and the quality of life of the relatives of people with intellectual disabilities

Purpose: The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers' age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined. Methods: 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF). Results: The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems. Conclusions: The role of caregivers' age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with. 

Access source material through DOI

An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland

Accessible summary: ·Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person.·Most carers felt a little stressed or strained.·Older carers felt less stressed than younger carers.·The value of supports that help carers was identified.

Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants' self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings.

Access source material through DOI

Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements. The pilot successfully improved future planning, but readiness of families and facilitation were important to outcomes. Continued care within the family was the most common future wish of care recipients. However, caring capacity emerged as a pervasive theme. Ultimately, it may be the capacity of the family, services or individual with ID themselves to provide future care which determines how feasibly future wishes translate into future plans. 

Access source material through DOI

Family carer and professional perceptions of the use of telehealth methodology for behavioural support for people with intellectual/developmental disabilities in the uk

Introduction: The use of telehealth to provide behavioural services for people with intellectual/developmental disabilities (IDD) is increasing. However, there are no prospective evaluations of stakeholder perspectives relating to this, which may have implications for uptake of such services. This study aimed to identify factors influencing family carer and professional willingness to use telehealth for behavioural support in the UK. Methods: A Delphi consultation was conducted in four rounds with two panels (professionals and family carers), aiming to reach consensus on the most influential advantages and disadvantages/barriers to participant's willingness to use telehealth. Results: Thirty‐six and 22 items reached consensus as being influential for professionals and family carers respectively. Factors identified by each panel differed, with professionals focusing on the logistics of support whilst family carers highlighted factors relating to the quality of support. A common solution to the barriers identified related to combining in‐person and telehealth methodology. Implications: A range of factors were identified that are influential to professional and family carer willingness to use telehealth for behavioural support. These factors suggest advantages to maximise and barriers to overcome in order to increase uptake of telehealth services in this field.

Access source material through DOI

Correlates of current caregiving among siblings of adults with intellectual and developmental disabilities

Background As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. Method This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD. Results Current sibling caregiving was positively correlated with sibling relationship quality, sibling advocacy and future planning, maladaptive behaviours of individuals with IDD, and family size. Current sibling caregiving was negatively correlated with parent caregiving abilities and functional abilities of individuals with IDD. Further, among siblings who provided care, the level and nature of sibling caregiving were negatively correlated with parent caregiving abilities. Conclusions The results identify the correlates of current caregiving among siblings of individuals with IDD. More research is needed to understand current sibling caregiving.

Access source material through DOI

Caregivers as researchers: An evaluation of early positive approaches to support (e-pats) in partnership with family caregiver co-researchers

Introduction: E‐PAtS is a co‐produced and co‐facilitated group‐programme to support caregiver wellbeing and positive development for children with intellectual/developmental disabilities. E‐PAtS has previously been evaluated in traditional ways. This study, explored the process and benefits of training three caregivers as co‐researchers in the evaluation of E‐PAtS.  Methods: Three caregivers were invited to serve as co‐researchers and provided with training/supervision. Co‐researchers gathered baseline and follow‐up data by supporting families who attended E‐PAtS to complete questionnaires and conducted follow‐up interviews with a subset of families. All co‐researchers were later interviewed to explore their own experiences of serving in this role. Results: Findings from this study are three‐fold and cover: quantitative analysis of pre and post‐questionnaire data from 6 E‐PAtS groups; a thematic analysis of these groups and a thematic analysis of interviews with co‐researchers themselves. Findings from both the qualitative and quantitative aspects of this work will be presented. Implications: Partnering with caregivers in the evaluation of E‐PAtS helped produce rich and meaningful data that had advantages beyond traditional methods. Co‐researchers reported multiple positive experiences relating to their role. The co‐researcher model therefore has good potential to enhance both research and caregiver empowerment in the field.

Access source material through DOI

Hassles with medication management perceived by caregivers of adults who have intellectual or developmental disabilities

Background Medication management is undertaken by caregivers of people who have intellectual or developmental disabilities. Objective The objectives were to measure the medication management hassles reported by caregivers of adults who have intellectual or developmental disabilities and to describe associations between characteristics of caregivers, medication regimens, and the person with intellectual or developmental disability and the scale score. Setting Web-based survey conducted in the United States. Method A newsletter announcement with a link to the survey was sent to members of a disability advocacy organization. Caregivers were age 18 years and older who manage medications for adults with intellectual or developmental disabilities. The survey questions were used to obtain characteristics of the caregiver, the medication regimen they managed, and the care-recipient. The study was approved by the Institutional Review Board of Michigan Medicine (HUM00091002). Main outcome measure The Family Caregiver Medication Administration Hassles Scale (caregiver scale). Results Forty-two caregivers responded, with 41 being female with a mean age of 56.7 years. The mean caregiver scale score was 28.9 (possible range 0-120). Highest scores (greatest hassles) were significantly associated with a greater level of support required by the care-recipient, stronger caregiver beliefs of the necessity of medication and concern about using medications, lack of previous caregiver health-care training, and being an employed caregiver rather than family member. Conclusion Medication management can contribute to caregiver stress. Pharmacists should ensure that caregivers are counseled about medication that they manage, be accessible for questions, and examine medication regimens to reduce polypharmacy and complexity of regimens.

Access source material through DOI

Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030

Background Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society. Aims To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments. Method We used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15–64), and projected costs of caring from 2015 in 5-year intervals to 2030. Results The model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU$310 million, lost taxation of AU$100 million and increased welfare payments of AU$204 million in 2015. These are projected to increase to AU$432 million, AU$129 million and AU$254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers. Conclusions Informal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD.

Access source material through DOI

Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities

Aims and objectives To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. Background The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. Design An interpretative qualitative design. Methods Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. Results Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: “a deep sense of loss,” “an overwhelming process,” “parents making transitions happen,” “a shock to the adult healthcare system” and “the unbearable pressure.” Nurses were often seen as instrumental to counteracting some of these challenges. Conclusions There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. Relevance to clinical practice Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.

Access source material through DOI

Service use and perceptions of service effectiveness by parents of individuals with intellectual disabilities: comparing Jewish and Arab Israeli parental caregivers

Background: The relationship between ethnicity, service use and perceptions of service effectiveness is inconclusive. This study examined differences in service use and perceptions of service effectiveness between Israeli Jewish (Jewish) and Israeli Arab (Arab) parental caregivers of individuals with intellectual disabilities and dual diagnosis of psychopathology. Methods: Parental caregivers (n = 186) of individuals with intellectual disabilities or dual diagnosis, aged 10 to 30 years, completed a self-report questionnaire. Results: Arab parental caregivers perceived health services to be more accessible than did Jewish caregivers, but there was no difference between the two groups in the use of the services. Overall, greater enabling factors and accessibility were associated with higher use of education and social services. No differences were found between the groups in their perceptions of service effectiveness. Conclusion: Arab family caregivers use education and social services less than do their Jewish peers, possibly because they have fewer enabling resources. The finding that both groups reported similar use of health services may be explained by a shared perception that informal help may not be suitable for dealing with situations of psychopathology. The similar perceptions of service effectiveness may be explained by extensive services available in Israel, to the satisfaction of both groups, or by the fact that participants perceived these services as their only alternative, and therefore fear losing them.

Access source material through DOI

The Beneficial Role of Mindfulness Facets in Relatives of People with Intellectual and Developmental Disabilities

Objectives: Providing support to people with intellectual and developmental disabilities (IDD) can be a major source of stress for the family caregivers. It is therefore important to identify resilient and protective factors for caregivers. This study examined whether mindfulness facets predict over time fewer symptoms of anxiety and depression and better quality of life for the family caregivers of people with IDD. Methods: A sample of 143 Spanish relatives of people with IDD (122 women and 21 men), aged between 18 and 78 (M = 46.87, SD = 12.16), participated in a two-time 6-month longitudinal study. Participants completed measures of anxiety, depression, quality of life, and mindfulness facets at the beginning of the study. Six months later, they again completed measures of psychological symptoms and quality of life. Results: The findings indicated that acting with awareness and non-reacting were the most beneficial mindfulness facets for caregivers. Acting with awareness predicted a reduction of anxiety (β = − 0.16, p < 0.01) and depression (β = − 0.17, p < 0.05) and an increase in quality of life (β = 0.19, p < 0.05) at the follow-up. Non-reacting predicted a reduction of anxiety (β = − 0.16, p < 0.05) and depression (β = − 0.13, p < 0.05) over time. Conclusions: The results of the study show the beneficial role of mindfulness facets and suggest the importance of studying the effect of mindfulness-based interventions for the relatives of people with IDD. 

Access source material through DOI

International perspectives on best practice when working with family carers of people with an intellectual disability from across the life course

In order to maintain an ethos of involvement and collaboration, there is a need for services and professionals to work with carers in ways that complement and enhance their roles so that they are able to maximize their capacity to care for their relative. 

Access source material through DOI

Efficacy of a psychoeducational intervention in caregivers of people with intellectual disabilities: A randomized controlled trial (EDUCA-IV trial)

Background: People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months). Method: This was a multi-centre randomised controlled trial including 194 caregivers (96 randomised to PIP, 98 to control condition). PIP intervention consists of 12 weekly group sessions. The control group received treatment as usual. Primary outcomes measured included the Zarit Burden Interview (ZBI). Secondary outcomes were caregivers' mental health (GHQ-28), anxiety (STAI) and depression (CES-D). Results: The decrease of ZBI scores was not significant at 4 months. There was significant decrease in the GHQ scores at 4 and 8 months. CES-D showed relevant results at follow-up. Intention to treat analyses showed similar results. Conclusions: The PIP intervention seems not to be effective reducing burden, but appears to have a positive result on general mental health. The program was well received and valued by caregivers. 

Access source material through DOI

Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings

BACKGROUND: Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate an instrument to assess these eight PCC dimensions among informal caregivers of PWIDs in residential settings (institutional settings as well as group homes in the community). The original 24-item instrument was developed and validated among professionals providing care to PWIDs. METHODS: This study was conducted in a disability care centre in the Netherlands. All informal caregivers of PWIDs living in institutional settings or group homes in the community in need of 24-h care were invited to participate (n = 941). The response rate was 31% (n = 289). We tested the instrument using structural equation modelling, and examined its validity and reliability. RESULTS: Confirmatory factor analyses revealed good indices of fit and overall internal consistency, as represented by Cronbach's alpha values. All eight dimensions of PCC were related positively to satisfaction with care (all p ≤ 0.001). As expected, informal caregivers were less critical of PCC and its underlying dimensions, except for information and education, than were professionals working in the same disability care centre. CONCLUSIONS: The psychometric properties of the 24-item PCC instrument for informal caregivers (PCC-IC) were satisfactory, indicating that the PCC-IC is valid and reliable for the assessment of the eight dimensions of PCC among informal caregivers of PWIDs in residential settings.

Access source material through DOI

Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet. A thematic synthesis of the resulting papers identified that online forums give carers a sense of agency by providing a place to go for informational support that may not be elsewhere. Carers also enjoyed the safe community of solidarity and emotional support that online forums provide. An important finding is the lack of published papers in this area with the inclusion of just eight papers.

Access source material through DOI

An asymmetric burden: Experiences of men and women as caregivers of people with psycho-social disabilities in rural North India

Caring for a family member with a psycho-social disability can be both rewarding and burdensome. This study analyses the experiences of caregivers of people with psychosocial disabilities (PPSDs) in rural communities in North India using relational gender theory. In-depth interviews with 18 female and male caregivers of PPSDs probed the social, emotional and health impacts of their caregiving role. Nine themes were identified that were grouped under three meta-themes: intra-personal, inter-personal and institutional impacts. Under the intra-personal meta-theme, all caregivers experienced high tension, with women describing almost overwhelming stress. Women minimised their role as caregivers, and felt negative and hopeless about their futures, while men had a more positive view of the future and themselves. Embodied experiences of psychological and social distress were consistently described by women, but not by men. Within the interpersonal meta-theme, men experienced opportunity for social connection and social support that was seldom available to women. Interpersonal violence with other household members was described by both men and women. Within the institutional meta-theme, both men and women described strength in unity, and gestures leading to the reordering of gender relations. These findings underline the significant and diffuse impacts of a gender order that values males and disadvantages females as caregivers of PPSDs, with the asymmetry of a greater burden for women. The findings point to the urgent need for global mental health policies that support and empower caregivers and that strengthen gender equality.

Access source material through DOI

Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families. 

  • Explores care practices and aspirations of siblings of people with ID/ASD.
  • Reveals how moral emotions of guilt, anger and self-compassion shape the moral identities of carers.
  • Argues that looking at care from the perspective of emotions can inform supports for carers. 
Access source material through DOI

The Significance of Person-Centered Care for Satisfaction With Care and Well-Being Among Informal Caregivers of Persons With Severe Intellectual Disability

Person‐centered care (PCC) delivery and co‐creation of care (establishing productive patient‐professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person‐centered care (PCC) and co‐creation of care as well. This study aims to identify the relationship between PCC, co‐creation of care and outcomes among informal caregivers of PWID. A cross‐sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other family member). All PWID were living in residential homes of a long‐term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty‐one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co‐creation of care were positively related to informal caregivers' satisfaction with care and their own well‐being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well‐being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co‐creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well‐being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co‐creation of care matter for satisfaction with care and the well‐being of informal caregivers of PWID.

Access source material through DOI

Mindfulness-based practices with family carers of adults with learning disability and behaviour that challenges in the UK: Participatory health research

Background: Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK, effective services designed to build resilience for people in long-term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals.; Objective: With positive behaviour support (PBS) and mindfulness and acceptance and commitment therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long-term caring roles.; Design: The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued.; Findings: Mindfulness/ACT can change long-standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR.; Discussion: The use of PHR accessed knowledges that would have been lost to more traditional, professional-expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re-consideration of quality issues in relation to PHR and participation.

Access source material through DOI

Sleep problems in adults with Down syndrome and their family carers

Background: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS.; Method: The present study consisted of an online survey completed by 100 family carers of adults with DS.; Results: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research. Significant associations were found between sleep problems and body mass index, excessive daytime sleepiness and a range of health and psychological problems. Low rates of treatments for sleep problems were reported. The majority of family caregivers felt their own sleep was affected.; Conclusions: Sleep problems in adults with DS are common and varied. Assessment and treatment of such problems are likely to improve quality of life.

Access source material through DOI

Needs and Experiences of Family Caregivers of Individuals With Autism Spectrum Disorders Across the Lifespan

Both service needs and needs of the caregiver may differ across the lifespan for individuals with autism spectrum disorder (ASD). As individuals with ASD age, they may need different services, which can place different burdens on the family. The present study aimed to determine the needs of both the individual with ASD and the family caregiver across the lifespan, as well as what experiences are important to families that may not be captured by quantitative measures. Data for the present study were taken from a large, online survey of family members of individuals with ASD. Participants were primarily mothers, with children ranging from early childhood to adulthood. The survey used a list of various services that could be used by individuals with ASD and the Family Needs Questionnaire to examine service needs and usage. Service needs and usage were compared by age category (childhood, adolescence, and adulthood). Most categories of service needs and usage differed by age, although the percentage of unmet service needs was quite high across all ages. Family members of adolescents or adults tended to report fewer individual needs than did family members of children. In open‐ended responses, families frequently discussed lack of services, worry about the future, and challenges with family and social relationships. Overall findings indicate a still‐high level of unmet service needs for individuals with ASD and their families. Although most basic health needs are met, more specific needs, such as therapy services and employment services, are received by comparatively few families. This has the potential to negatively impact families as the child with ASD ages, despite caregivers reporting fewer personal needs for older individuals. 

Access source material through DOI

Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.

Access source material through DOI

Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers. Findings: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. Conclusion: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings. 

Access source material through DOI

The Novel Use of Life Grids in a Phenomenological Study of Family Carers of People With Profound Intellectual and Multiple Disabilities and Dysphagia

Life grids have been used in qualitative studies for the last two decades. They provide an activity which researcher and participant can focus their attention on, help build rapport, and reduce the control the researcher may hold within a session. Here we describe the novel use of life grids at the end of a data collection phase. Used in this previously unreported way, life grids assisted the closure of the data collection phase by summarizing the data collection and marking departure from the field. Creation of a life grid produced a tangible outcome, evidencing the work undertaken within the data collection period. They served as a powerful member checking tool, allowing participants to make additions and corrections to the data. In this article, the use of life grids in this novel way is described and recommended by the authors. 

Access source material through DOI

Perspectives of carers of people with intellectual disability accessing general practice: “I’d travel to the ends of the earth for the right person”⁣

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice. Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia. Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for. Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study. 

Access source material through DOI

Transition of Persons with Developmental Disabilities from Parental to Sibling Co-Residential Care: Effects on Sibling Caregiver Well-Being and Family Functioning

Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010). This dissertation looks at the wellbeing and family functioning of siblings who become the co-residential caregiver following the transition of a brother or sister with DD from parental to sibling co-residential care. The family systems framework was the theoretical lens for understanding caregiver wellbeing and overall family functioning. Hermeneutic-narrative inquiry was the approach for interviewing and exploring the stories of 10 sibling caregivers of a brother or sister with DD following their transition from parental to sibling co-residential care. Two analytical approaches were used. Firstly, structural analysis involved a within-case analysis of individual participants' stories of transition to determine the meaning ascribed to and identified with the caregiving experience. Secondly, thematic narrative analysis included an across-case analysis to identify themes related to caregiver wellbeing, family functioning, reciprocity of mutual support, and anticipating the caregiver role versus actual experience. Findings from the structural analysis showed that the meaning of the caregiving experience included a duty, obligation, responsibility and commitment to the family. Results from the thematic narrative analysis showed overall lower social and emotional wellbeing among participants, reduced functionality among family members with respect to lower emotional and social functioning, reduced engagement in recreation/leisure activities, as well as lower economic functionality for sibling caregivers with no spouse or children. Sibling caregivers reported higher overall wellbeing and family functioning due to availability of formal supports (e.g., respite care, day program services), and informal support, such as having support from a spouse, child, or extended family member. Findings regarding reciprocity showed increased instrumental support among sibling caregivers and reduced emotional support. When anticipating the role, caregivers described knowing they would assume the role but were unclear of the shift to assuming a parental rather than sibling role. Other unanticipated discoveries included feeling captive to the role and feelings of helplessness. Caregivers' actual experiences involved learning to manage new challenges, society's patronizing view of persons with DD, and an overall sense of pride in caregiving for giving back to their sibling with DD. Grief and future planning were also discussed, including the effect of grief on the sibling caregiver, sibling caregiver's children and sibling with DD. Future planning looked at the aspects of planning and not having planned for the future of the sibling with DD. The study concludes with implications for current and future social work practice and research, as well as the study's strengths and limitations.

Original source (some source materials require subscription or permission to access)

Family caregivers of people who have intellectual/developmental disabilities and asthma: Caregiver knowledge of asthma self‐management concepts—A pilot study

Accessible Summary: Asthma is a problem for many people. Some people need help with their medicines for asthma. People who help with medicines should know how medicines work and how they are used. This study found that many helpers need more education about asthma medicines. Abstract: Background: People who have an intellectual or developmental disability (IDD) and asthma are at greater risk of poor health outcomes. They often require assistance from caregivers when managing their medicines. The objective of this pilot study was to assess the level of understanding of asthma self‐management concepts of family caregivers who provide assistance to people who IDD and asthma. Results will inform future needs assessment and intervention studies. Materials and Methods: Nineteen caregivers of people who have asthma and IDD completed a mailed survey. The survey included scales to measure asthma self‐management concepts, inhaler technique knowledge, medication adherence and control of asthma. The caregivers were instructed to complete most of the scales with reference to the person with IDD. Results: Most caregivers had acceptable health literacy, but had low scores on the asthma self‐management and inhaler technique tests. The most frequently cited barriers to controlling asthma were inadequate caregiver and patient education about the illness as well as knowing and avoiding asthma triggers. The most frequently cited barriers to medication management were knowing inhaler technique, knowledge of medication and forgetting to use medication. Asthma was controlled in 63.2% of patients, while almost 75% of patients were considered nonadherent to controller therapy. Conclusions: Most caregivers had inadequate understanding of asthma self‐management as well as inhaler technique despite having high health literacy. Improving caregiver and patient knowledge and skills may lead to better asthma control.

Access source material through DOI

Adaptation and resilience in families of individuals with Down syndrome living in Ireland

Accessible Summary: This study describes an Irish‐based study that examined how families of children with Down syndrome living in Ireland adapt to their child’s diagnosis. We found that good family communication and family hardiness have a positive affect on how families adapt. Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Abstract: Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status. The incidence of Down syndrome in Ireland is estimated to be 1 in 546, with approximately 7,000 people with Down syndrome living in Ireland. While some families of individuals with Down syndrome may find it difficult to adapt, other families adapt successfully and some even thrive. The aim of this study, which is guided by the Resiliency Model of Stress, Adjustment and Adaptation was to examine linkages between family demands, family appraisal, family resources, family problem‐solving communication and family adaptation in families of individuals with Down syndrome living in Ireland. Methods: Ninety‐five parents (79 mothers, 16 fathers) of children with Down syndrome aged between 1 and 30 years completed six self‐report measures designed to assess key dimensions of the Resiliency Model of Family Stress, Adjustment and Adaptation. Results: This study found that families of children with Down syndrome can adapt and become resilient. Factors found to positively influence this process include family hardiness and affirming family communication. Factors that negatively influenced this process were incendiary family communication and view of the condition impact. Conclusion: Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Early recognition of the difficulties being experienced by families and the provision of interventions that target and foster positive resiliency traits such as affirmative communication and the development of overall family hardiness are key to adaptation.

Access source material through DOI

'Special Mothers' in Ireland: Gender, Identity and The Social Construction of Caring for a Relative With an Intellectual Disability

Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers.

Access source material through DOI

Transforming care: innovation and sustainability (3rd Transforming Care Conference, 26-28 June 2017, Milan, Italy)

The focus of the ‘3rd Transforming Care Conference’ was twofold: (1) tensions between policy and social innovation in care policies; and (2) pressures on the financial and social sustainability of care systems. The rationale for choosing these topics stems from the fact that care policies are rooted in dynamic and unstable financial and social environments, thereby necessitating responses to many long-term and intergenerational challenges. At the same time, such challenges and policy responses are inherently complex, and any analysis needs to include the perspectives of carers, those in need of care and others involved in caring.

The conference aimed to bring together scholars from different backgrounds and perspectives to discuss how care is being transformed in ‘turbulent, multifaceted and changing contexts’. It addressed a range of topics: early child education and care, care for adults with disabilities and long-term care for older people

Access source material through DOI

Collateral damage: Australian carers' services caught between aged care and disability care reforms

In Australia, 2.7 million family and friend carers care for people with disabling conditions (including mental health conditions), who are terminally ill and/or who are elderly and frail. It is no surprise that those carers who provide the most care often experience multiple disadvantages, including constraints on their ability to work and accompanying financial stress, social isolation, and high levels of disability, ill health and stress [...] The question remains, however: in the context of increasing fiscal constraint and the diversion of funds into the NDIS, exactly how much will be left to support the proposed integrated carer support system? Additionally, if this development does not materialise, what future is there for dedicated support for Australia’s carers?

Access source material through DOI

Mental capacity legislation in the UK: systematic review of the experiences of adults lacking capacity and their carers

AIMS AND METHOD: Capacity legislation in the UK allows substitute decision-making for adults lacking capacity. Research has explored the experiences of such adults and their carers in relation to the Adults with Incapacity (Scotland) Act 2000, and the Mental Capacity Act 2005 in England and Wales. A systematic review of the relevant research was performed using a framework method. RESULTS: The legislation provided mechanisms for substitute decision-making which were seen as useful, but there were negative experiences. Decision-making did not always seem to follow the legislative principles. Awareness of the legislation was limited. Most research was qualitative and some was of low methodological quality. Data were too heterogeneous to allow comparisons between English and Scottish law. CLINICAL IMPLICATIONS: Capacity legislation was generally viewed positively. However, some experiences were perceived negatively, and the potential benefits of the legislation were not always utilised. 

Access source material through DOI

Exploring family members' experiences of the Assessment and Treatment Unit supporting their relative

Background Learning disability services must include the people who use them (individuals and their families/carers) in service commissioning, planning and delivery (Department of Health 2012. Transforming care: A national response to Winterbourne View Hospital. Department of Health review: Final report). One group of important stakeholders in learning disability services are the family members and carers of people with a learning disability. The aim of this study was to explore how family members experienced their involvement with one Assessment and Treatment Unit, with a view to shaping future service developments. Materials and Methods Qualitative methods were employed to explore family members' lived experiences. Four participants, all parents of service users, took part in semi-structured interviews. Interview transcripts were analysed using thematic analysis. Results Analysis elicited four master themes under which subordinate themes clustered. The master themes were as follows: “Admission as traumatic, a relief, or both,” “Negotiating a new role,” “Valued features of the unit” and “Negative experiences.”. Conclusions The findings have implications for learning disability services and future research. Findings are discussed with relevance to strengths, limitations, wider literature and policies driving learning disability services. 

Access source material through DOI

Stigma experienced by family members of people with intellectual and developmental disabilities: Multidimensional construct

Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support. Results The FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma. Conclusions This instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences. 

Access source material through DOI

Growth of Shared Lives placements slows

Umbrella body Shared Lives Plus calls for national awareness raising campaign to help boost carer numbers. 

Original source (some source materials require subscription or permission to access)

Family caregivers as needed partners: recognizing their role in medicaid managed long‐term services and supports

Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical. Rising long‐term services and supports costs combined with goals to improve care coordination and access to services are driving more states to change the design of their long‐term services and supports systems to a Medicaid‐Managed Long‐Term Services and Supports (MLTSS) approach. Best practices for implementing MLTSS for individuals with IDD include acknowledging the family caregiver role. The current study's aim is to understand how family caregivers and their roles are recognized in MLTSS for adults with IDD in Kansas. Kansas was selected given their unique approach to MLTSS for adults with IDD, referred to as KanCare. In‐depth semi‐structured telephone interviews were completed with 31 stakeholders in Kansas, including statewide/regional representatives (N = 13), service coordination providers (N = 7), and family caregivers (N = 11). Additional family support services were available in KanCare, but families had difficulty accessing them. No formal processes were reported for assessing the needs of family caregivers in KanCare and families found communications with managed care entities challenging. Families reported difficulties with taking on responsibility of managing in‐home supports and there were concerns about being paid to provide care as a guardian. Family caregivers play a critical role in MLTSS, including assisting with care coordination and access to services. However, their role was not formally acknowledged in KanCare. Future research, practice, and policy efforts should focus on promoting family caregiver assessments and identifying best practices for supporting family caregivers in MLTSS.

Access source material through DOI

Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: a systematic review of qualitative studies

Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process.

Access source material through DOI

Change over 12 years in residential provision for adult persons with intellectual disabilities in Ireland

Purpose: The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach: Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups. Findings: From 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently. Social implications: More Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support. Originality/value: This national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.

Access source material through DOI

Barriers to non-residential respite care for adults with moderate to complex needs: a UK perspective

Respite aims to alleviate the stress and burden of caring for someone with an intellectual disability and/or autism. Respite can take place in a number of different ways, but most commonly occurs in a residential setting. Based on survey and interview data with carers (CAs), service users and stakeholders (STs) in a northern city in England, this article explores some of the perceived or actual barriers to availing ‘non-residential’ respite. A number of barriers to non-residential respite are identified. Residential respite appears to be the default conceptualisation of ‘respite’ for carers, service users and stakeholders. Persuading carers, service users and stakeholders to give up the familiarity and safety of residential respite in favour of a non-residential alternative will be challenging unless those involved are more informed. Limitations and directions for future research are suggested.

Access source material through DOI

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.

Access source material through DOI

"What's going to happen when we're gone?" Family caregiving capacity for older people with an intellectual disability in Ireland

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Results: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out‐of‐family home care. Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families’, to facilitate the early formation of long‐term care plans.

Access source material through DOI

Tolerating Uncertainty: Perceptions of the Future for Ageing Parent Carers and Their Adult Children with Intellectual Disabilities

Background: Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. Methods: Semi‐structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an explanatory thematic framework. Results: ‘Tolerating uncertainty’ was the major theme in participants' attempts to manage anxieties about the future, encompassing sub‐themes of ‘accepting the parenting role’, ‘facing challenges’, ‘being supported/isolated’, ‘positive meaning making’, ‘re‐evaluating as time moves on’ and ‘managing future thinking’. Some participants expressed preferences for their future which were in contrast to their parents' views, and provide a unique perspective that has often been neglected in prior research. Conclusions: This research has found commonalities in how families tolerate the uncertainty of the future, but also unique differences that require tailored interventions and prospective action by services.

Access source material through DOI

Young adults with severe intellectual disability: Culture, parent, and sibling impact

Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. Results Mothers experiencing more stress reported higher levels of sibling impact mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.

Access source material through DOI

Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

Access source material through DOI

Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea

Background: Individuals with intellectual disabilities (IWID) need intensive long-term care. Consequently, caregivers experience not only economic burdens but also tension, depression, insecurity, etc. Aim: This study aimed to provide basic data and materials for preparing policy alternatives to improve caregiver quality of life of by examining relationships between IWID caregiving burden and depression. Methods: This study involved secondary analysis of data from the 2011 Survey on the Actual Conditions of Individuals with Developmental Disabilities, conducted by the Ministry of Health and Welfare of Korea. Effects of caregivers’ characteristics, caregiving time and cost, and perceptions of time and cost, on depression were analyzed. Results: All components of caregiving burden and depression were significantly higher in the 1st grade, designating the most severe disabilities. Overall, caregiving burden tended to be higher in female caregivers, the unemployed, parents, co-residents, and people with health problems. Caregivers’ characteristics such as spouse relationship, having health problems, and perception of caregiving time and cost were associated with depression. Conclusion: Caregiving burden and depression vary depending on the characteristics of IWID and their caregivers. Services for decreasing caregiving burden may be optimized by focusing on these characteristics.

Access source material through DOI

Aging Together: Caring Relations in Families of Adults With Intellectual Disabilities

Purpose of the Study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of aging families of community-dwelling adults with ID.

Design and Methods: An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were recruited through purposive sampling. In-depth, semistructured interviews were conducted to explore the experience of aging concurrently with a community-dwelling relative with ID. Data were analyzed using a thematic approach.

Results: Three main themes emerged: (a) Recognizing the Changes of Aging, (b) Strengthening Connections, and (c) Planning for the Future.

Implications: Aging concurrently with a community-dwelling relative with ID is a unique experience for older adults and challenges traditional views of familial caring relations. These relationships are characterized by evolving patterns of care and exchange. There is also a sense of urgency to securing future care arrangements for the adult relative with ID. Advanced care-planning is complicated by the adult with ID’ understanding of death and dying. Family caregiving policies and practices that take into account the complexities of these relationships are needed.

Access source material through DOI

Informal Support, Health, and Burden Among Parents of Adult Children With Autism

Background and Objectives: Many adults with autism spectrum disorders require lifelong reliance on caregiver support. As these caregivers age and experience health challenges, social support can be critical. This study seeks to understand if caregiver health moderates the relationship between informal social support and caregiver burden.; Research Design and Methods: A total of 320 parents (age 50+ years) of adult children diagnosed with ASD were recruited from autism organizations and support groups and completed a web-based survey. Separate moderation analyses were used to determine if caregiver health was moderating the relationship between informal social support and composite caregiver burden, as well as the separate domains of developmental, time dependence, emotional burden, and impact of caregiving on finances. For each analysis, perceptions of available informal social support were the independent variable, composite and domains of caregiver burden were dependent variables, and parents' self-reported general health was the moderating variable.; Results: Caregiver health had a statistically significant moderating effect when predicting the relationships between informal social support and composite caregiver burden, as well as time dependence burden and impact of caregiving on finances.; Discussion and Implications: Increased attention should be focused on supporting the current and future needs of both aging caregivers and their adult children with ASD. Future research on the dynamics of social support, health, and burden is also urgently needed to address the growing number of aging caregivers of adults diagnosed with ASD.

Access source material through DOI

Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability ( N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

Access source material through DOI

Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism

The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents' QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks.

Access source material through DOI

Findings from an online survey of family carer experience of the management of challenging behaviour in people with intellectual disabilities, with a focus on the use of psychotropic medication

Accessible summary: Family members often support people with intellectual disabilities who display challenging behaviour. Family carers should be listened to and included in important decisions. We asked family carers how professional services had helped their relative with challenging behaviour. Family carers said that the care of people with intellectual disabilities who display challenging behaviour can be improved. Family carers sometimes felt left out of decisions and said that they needed more information. Listening to parent carers' experiences can help to improve the services that are provided to people with intellectual disabilities and their families.

Abstract: Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice. 

Access source material through DOI

Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder

This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers. 

Access source material through DOI

Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.

Access source material through DOI

Discussion Paper 6: Disability and Family Carer Policy - Challenges and Responses

A working definition of ‘disability’ is crucial to any research, policy development or service provision in the field. There are many definitions of disability (Iezzoni & Freedman, 2008), some directly contradicting others. These differences originate from the different theoretical viewpoints which have been and are still being used to articulate what ‘disability’ is. These ‘competing’ models – though such competition is not explicitly stated in many cases – contribute to the confusion which often accompanies policy work and service provision in the disability-specific sector and those sectors closely connected – such as family caring.

Recent developments and discussions within the disability and family caring sectors in Ireland only highlight the challenges of obtaining a general consensus on the conceptualisation of disability.

The purpose of this paper, as with all papers in this series, is to ask questions with the aim of stimulating debate and critical thinking within the sector. This is particularly true as regards questions that may be uncomfortable for some readers.

Original source (some source materials require subscription or permission to access)

Family Matters: Counting Families In

This report seeks to highlight the perspectives of family carers within the development of a national strategy for people with learning disabilities. The report represents a synthesis of a broad range of views, collected through consultation workshops, correspondence, conversations with family carers, and a review of the relevant  literature. 

Families have an important and unique contribution to the discussion of the future direction of services for men and women with learning disabilities. They are the only people who will have a continuous relationship with the person with a learning disability from childhood to adulthood.

This contribution needs to be acknowledged, valued, listened to, and acted upon.

Original source (some source materials require subscription or permission to access)

Barriers to increasing the physical activity of people with intellectual disabilities

Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and Methods: Qualitative data were collected via interviews and a focus group with people with intellectual disabilities and their paid and family carers, recruited via state-funded community-based day centres in Scotland. Results: Three barriers hindered service users with intellectual disabilities from regular involvement in physical activity: (i) acceptance of an inactive lifestyle by carers; (ii) restrictions on activity due to paid carer preferences and resource limitations; (iii) communication issues between family carers and paid carers. Barriers were based on assumptions made by paid and family carers, so there is potential to increase activity by changing attitudes, improving communication and reconceptualising activity as integral to everyday living, rather than as additional exercise requiring special resources. Conclusions: Carers should be supported to promote physical activity in a variety of ways to enhance the motivation of service users, to encourage them to engage with physical activity as an integral part of a healthy lifestyle and to transfer this to their lives beyond day care. 

Access source material through DOI

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

Access source material through DOI

Mental Wellbeing of Family Members of Autistic Adults

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.

Access source material through DOI

Physical and psychological health of family carers co‐residing with an adult relative with an intellectual disability

Background: Providing long‐term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well‐being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio‐economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population‐based, longitudinal research is needed.

Access source material through DOI

8 out of 10 carers at breaking point

During National Learning Disability Week, Mencap launched its Breaking Point campaign to get more short breaks for family carers. Mencap's survey showed that 6 out of 10 carers of people with severe or profound learning disabilities surveyed by Mencap were getting no short break service. Many local authorities do not see these families as a priority. Mencap wants spending in this area to be closely checked. As part of a campaign, people emailed their MP. So far, more than 1,000 people have emailed their MP. [Journal abstract]

Staying put: keeping the family home for adults with a learning disability

Valuing People reminds us that 60 percent of adults with learning disabilities are still living at home being supported by relatives. The author investigates how older carers could best use the family home in planning for the future and reviews the different arrangements families can put in place to ensure a son of daughter can continue to live at home.

Original source (some source materials require subscription or permission to access)

Caring for carers

Department of Health strategy for supporting informal carers 'Carers at the Heart of 21st Century Families and Communities' (2008), which addresses government short-term commitments and a 10-year plan. The key principles are summarised and reactions from carers and organisations are reviewed. A case study of a community learning disability nurse supporting a mother and her learning disabled son is included. [(BNI unique abstract)] 

Access source material through DOI

Dysphagia: the challenge of managing eating and drinking difficulties in children and adults who have learning disabilities

This review explores some of the key issues relevant to children and adults who have dysphagia, or eating, drinking and swallowing difficulties, and a learning disability. It explores the methods for attempting to identify this area of difficulty effectively, and reflects on some of the other issues that may affect management, such as carer support and training and use of appropriate communication strategies to support and enable participation from the client with learning disability.

Access source material through DOI

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Access source material through DOI

It is time to recognise our 6 million UK care-givers

There are around 6 million ‘informal carers’ in the UK. This series of 5 articles sets out to explain what informal caring is and how healthcare assistants and nurses can work with and meet the needs of a variety of informal carers in a variety of clinical and healthcare settings and environments. This short series will commence with a brief definition of what informal caring is, placing this short definition within a demographic framework.

Access source material through DOI

Making change happen: the government's annual report on learning disability 2003

This report is the Government's Annual Report to Parliament which gives our reply to the Learning Disability Task Force report 'Making Things Happen'. Reports on the work that has been done since the White Paper 'Valuing People:A New Strategy for Learning Disability for the 21st Century' launched in March 2001.

Original source (some source materials require subscription or permission to access)

Can clinicians and carers make valid decisions about others' decision-making capacities unless tests of decision-making competence and capacity include emotionality and neurodiversity?

Purpose – The purpose in writing this paper is to highlight the lack of knowledge of many who are involved in capacity assessments, especially non‐professionals such as carers of the learning disabled, and the view that current guidance for capacity assessments does not take into account issues of emotionality.

Design/methodology/approach – The approach is to discuss current guidance and practice, and to offer academic criticism and explanation.

Findings – The findings include the discovery that the Mental Capacity Act 2005 Code of Practice suggests that healthcare professionals and family/carers may undertake assessments of decision‐making capacity, yet the guidance it provides for their doing so overlooks salient issues. Many of those involved in the daily lives of those, who may lack decision‐making capacity (and thus be seen as legally incompetent) such as the learning disabled, demented, mentally ill and neurodiverse, must decide whether to respect their decisions as competent, or to disregard the decisions on the grounds of incompetence and to act in the person's best interests. As many will lack training in their clinical and legal responsibilities and liabilities, it is crucial that they, and those they care for, are protected by not only an increased knowledge of mental capacity legislation and practice, but also how it may apply to questions of emotionality and neurodiversity.

Originality/value – This paper expands and builds on the authors' previous research into including emotionality in assessments of capacity, and will be of use to practitioners in the field of learning disability, and other psychiatric specialities.

Access source material through DOI

Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project ( This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies

Access source material through DOI

'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability

The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on ‘current concerns’. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.

Access source material through DOI

Copying letters to service users with learning disabilities: opinions of service users, carers and professionals working within learning disability services

The NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice. A number of practice issues were identified: protocols for developing individualised accessible information are needed, involvement of service users in the management of their information and maintenance of its confidentiality, and involvement of carers in the sharing of information, if this is appropriate. A communication strategy needs to be developed by services working with people with learning disabilities, in conjunction with service users and carers. The resource and training implications of this area of service development need to be considered.

Access source material through DOI

Family care-givers: the role of the healthcare assistant

This second article on family care-givers will focus on how healthcare assistants (HCAs) can support such care-givers within a variety of care settings, including GP practices, healthcare centres, hospital departments, hospital wards and in the care-giver's own home. Suggestions for training of HCAs who are likely to work with family care-givers will be proposed.

Access source material through DOI

Improving access to social care for adults with autism

This online guide looks at how social care services can improve access to adults with autism. It is based on research that explores the barriers to services experienced by people with autism. It covers people with autism, whether or not they also have a learning disability. The main sections of the guide cover: awareness raising; acceptability and accessibility; joint working; transitions; early intervention and prevention; personalising services; and carers. The guide suggests ways services can improve, identifying how best to meet the goals of the government's autism strategy. The guide is aimed primarily at frontline, managerial and commissioning staff in the social care sector.

Original source (some source materials require subscription or permission to access)

Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability

Background There is no reliable and valid self-report measure of depressive symptoms for people with learning disabilities. Aims To develop a scale for individuals with learning disability, and a supplementary scale for carers. Method Items were generated from a range of assessment scales and through focus groups. A draft scale was piloted and field tested using matched groups of people with or without depression, and their carers. The scale was also administered to a group without learning disabilities for criterion validation. Results The Glasgow Depression Scale for people with a Learning Disability (GDS—LD) differentiated depression and non-depression groups, correlated with the Beck Depression Inventory — II (r=0.88), had good test—retest reliability (r=0.97) and internal consistency (Cronbach's α=0.90), and a cut-off score (13) yielded 96% sensitivity and 90% specificity. The Carer Supplement was also reliable (r=0.98; α=0.88), correlating with the GDS—LD (r=0.93). Conclusions Both scales appear useful for screening, monitoring progress and contributing to outcome appraisal.

Access source material through DOI

A comparative study of stress and unmet needs in carers of South Asian and white adults with learning disabilities

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.

Access source material through DOI

Resource allocation priorities in social care for adults with a learning disability: An analysis and comparison of different stakeholder perspectives

Purpose – How resources for social care are allocated to individual service users has long been a concern. There are debates regarding the priority given to certain needs in Resource Allocation Systems (RASs). The purpose of this paper is to compare the views of adults with a learning disability and Directors of Adult Social Care regarding their priorities for resource allocation with priorities arising from observed resource allocation decisions.

Design/methodology/approach – In a consultation workshop, 12 adults with learning disabilities were asked to rank the perceived importance of eight needs-related outcomes. Directors of Adult Social Care completed an online questionnaire concerning the distribution of resources across the same eight outcomes. Actual resource allocation data from 11 local authorities were also modelled against these outcomes. A variable importance metric (the percentage contribution of each outcome to predicting costs) was used to rank the importance of these outcomes in terms of determining actual resource allocation. Findings from these data collections were compared.

Findings – There were discrepancies between the views of adults with a learning disability, the perspectives of Directors and actual resource allocation data. Whereas adults with a learning disability perceived psychological well-being as most important, Directors and actual resource allocation data stressed the importance of activities of daily living and carer burden.

Originality/value – This analysis will prove useful in understanding the concerns of adults with a learning disability and whether these are adequately addressed by current RASs.

Access source material through DOI

Prevalence, disability and need in adults with severe learning disability

Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.

Access source material through DOI

An evaluation of the Mencap family adviser service in northern Ireland

For over three years, Mencap (Nl) has provided and largely funded an ‘Information and Advice Service’ aimed primarily at family carers and people with learning disabilities. The service employs four advisers who cover most of Northern Ireland, offering telephone but also face-to-face contact with enquirers. They have access to a specially developed, computerized database that contains details of local as well as national resources. This paper describes the service and the evaluation process used. Information was obtained from four stakeholder groups, namely service-users; service-funders; the leaders of learning disability teams in Health and Social Services (HSS) Trusts and the chairpersons of Mencap local societies. The features of a good information and advice service are noted, along with the developments required to the existing service. In the main these relate to improved partnership working with statutory agencies and increasing the profile of the service with services, family carers and people with learning disabilities. The lessons learnt in Northern Ireland could usefully inform the development of similar services that are proposed for the Irish Republic, Scotland, England and Wales.

Access source material through DOI

Learning disability strategy: section 7 guidance on service principles and service responses

The main focus of this guidance is on the person with a learning disability rather than on their families or carers but ,where appropriate, families and carers are mentioned in the text. The contribution that families and carers can make to the unified assessment process is covered within that guidance and carers are, of course, entitled to their own assessment.

Original source (some source materials require subscription or permission to access)

Valuing people: a New Strategy for Learning Disability for the 21st Century; a White Paper presented to Parliament by the Secretary of State for Health by command of Her Majesty March 2001

Describes the government's strategy for improving the life chances of people with learning disabilities. Covers issues such as improving service provision for children with learning disabilities; improving choice and control for people with learning disabilities; supporting carers; improving health care for people with learning disabilities; providing housing, employment and fulfilling lives; and assuring quality in services.

Original source (some source materials require subscription or permission to access)

Views and experiences of people with intellectual disabilities and their families: (1) the user perspective

The present paper presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice. The literature review of user views and experiences produced three broad categories: (1) ‘testaments of life’, which are mainly ethnographies and life histories; (2) ‘user movement media’ produced in an accessible format for people with IDs or by people with IDs themselves; and (3) ‘research based studies’ in their varying forms. It is demonstrated that no single approach is able to encompass all the interests of knowledge production, policy planning, and action or practice on its own. Some of the methodological issues associated with these gaps are more fully discussed. A more coordinated and broad-based research approach to user views and experiences is advocated.

Access source material through DOI

Older carers of adults with a learning disability confront the future: Issues and preferences in planning

The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.

Access source material through DOI

Spatial Perspectives on Voluntarism in Learning Disability Services in Ireland

Voluntarism has moved to the centre of most western neo-liberal governments' focus in terms of welfare delivery. At the same time, very little of the social policy literature has identified specific historical, cultural and political contexts of place in shaping the particular form of voluntarism and the scale at which it takes place in a country. In order to address policy-related issues of the voluntary sector, a geographical perspective focusing on these local contexts can be very useful in unpacking how the sector can exist across regional and local scales. This article explores the rise of voluntarism in adult learning disability services in Ireland. Ireland experienced the ‘community turn’ much earlier than most Western states, in that the state advocated a ‘hands-off’ approach in learning disability services from the outset. It uses data from 40 interviews with local health agencies, voluntary organisations and informal carers. It critically examines the complex geographical factors that have contributed to the particular form of voluntarism that has evolved, thus demonstrating that understanding levels of voluntary activity requires attention to local circumstances.

Access source material through DOI

Delivering the Bamford vision: the response of the Northern Ireland Executive to the Bamford Review of Mental Health and Learning Disability: action plan 2012-2015

An action plan for the implementation of the recommendations set out in the Bamford Review of Mental Health and Learning Disability, an independent review of legislation, policy and service provision, concluded in August 2007. Broadly the review called for: continued emphasis on promotion of positive mental health; reform of mental health legislation; a continued shift from hospital to community-based services; development of a number of specialist services, to include children and young people, older people, those with addiction problems and those in the criminal justice system; and an adequate trained workforce to deliver these services. The plan sets out in detail key actions aimed at: promoting positive health, wellbeing and early intervention; supporting people to lead independent lives; supporting carers and families; providing better services to meet individual needs; and developing structures and a legislative framework.

Original source (some source materials require subscription or permission to access)

Let relatives have a bigger role in care

Royal college of psychiatrists, leeds, 28 february

Learning disability practitioners should drop any barriers that stop relatives from contributing to the care being delivered to older service users, according to Andrew Fairburn, the medical director of Northumberland, Tyne and Wear NHS Trust.

Access source material through DOI

Blue sky thinking? I don't think so

This is a personal account of the issues faced by carers of a young adult with autism and a learning disability in making the transition from children's services to an adult residential setting, and the ongoing difficulties in maintaining his well-being and ensuring his future quality of life.

Access source material through DOI

Why the difference? Advice on breast examination given to carers of women who have learning disability and to women who do not

This article is about carers being discouraged from performing regular breast examinations for women who have a learning disability and who are unable to perform it upon themselves. This follows guidelines issued by the Cancer Screening Programme in 2000. The article looks at the need to perform breast examination, draws on feminist thought and explores the possible reasons for the guidelines, focusing on issues of abuse, consent and who should perform the examination. Conclusions are reached that women who have a learning disability should receive the opportunity for breast examinations to be conducted, and recommendations are made in relation to the issues of abuse, consent and who should perform the examination.

Access source material through DOI

Valuing People: family matters ten years on

It is ten years since Valuing People promised a ‘new deal’ for family carers. Valuing People was explicitly concerned to ensure a cultural shift in the way services worked with and conceptualised the role of family carers. It included specific objectives for involving families in local partnership boards, providing better support for them in their caring role and investing in family leadership nationally, regionally and locally. This article considers why there was a need for a more family-focused approach to support. It then discusses the advances over the last decade towards meeting the objectives of Valuing People. It concludes that despite the positive policy developments it would be dangerous to be complacent; there is still a need to continue investing in families and people with learning disabilities to ensure that the gains of the past decade are not lost.

Access source material through DOI

Service framework for learning disability

This Service framework for learning disabilities is one of a set of Service Frameworks which sets out standards for health and social care to be used by service users and carers, to help them understand the standard of care they can expect to receive in Northern Ireland. The Service Framework for Learning Disability aims to improve the health and wellbeing of people with a learning disability and their carers and families by promoting social inclusion, reducing inequalities in health and social wellbeing and improving the quality of health and social care services. The Framework sets standards in relation to: Safeguarding and Communication and Involvement in the Planning and Delivery of Services; Children and Young People; Entering Adulthood; Inclusion in Community Life; Meeting General Physical and Mental Health Needs; Meeting Complex Physical and Mental Health Needs; At Home in The Community; Ageing Well; and Palliative and End of Life Care. 

Original source (some source materials require subscription or permission to access)

The experience and management of menstruation for women with learning disabilities

This paper describes a three‐phase study to investigate the experience and management of menstruation for women with learning disabilities. It focuses on the findings of the second phase of the study, which looked at the experiences of carers and health professionals. It describes the difficult issues that can arise when providing assistance around menstruation. The findings are discussed in relation to ideologies and sensitivities that exist around gender, sexuality and menstruation.

Access source material through DOI

Making change happen: the government's annual report on learning disability 2003; easy read version

This report is the Government's Annual Report to Parliament which gives our reply to the Learning Disability Task Force report 'Making Things Happen'. Reports on the work that has been done since the White Paper 'Valuing People:A New Strategy for Learning Disability for the 21st Century' launched in March 2001.

Original source (some source materials require subscription or permission to access)

Better preadmission assessment improves learning disability care

People with learning disabilities often have difficulty identifying and meeting their health needs and accessing appropriate health services. The Department of Health (1999a), NHS Executive (1998), and Mencap (1998) report that this group has increased needs compared with the general population, yet these needs are often poorly met. 

This qualitative study explores the experience of hospital admission from the perspective of four different stakeholders: people with a learning disability, their family/carers, hospital staff, and community learning disability nurses. It introduces and evaluates a new preadmission assessment, identifies key factors that influence the process of health care, and compares the results of this study with the current evidence base. The study uses process evaluation with multiple stakeholder analysis using semi-structured interviews for data collection. A focus group was used in preparation for the study. Results found stakeholders were generally positive about their experiences, and the preadmission assessment was well received.

Original source (some source materials require subscription or permission to access)

Dementia care in England and the social model of disability

This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia – younger people (i.e. those under the age of 65) and those from minority ethnic groups.

Access source material through DOI

The adult support and protection (Scotland) act 2007: “What it means to me” - report of a user and carers conference

This national conference was a partnership event between the Scottish Government, Age Concern Scotland, Inclusion Scotland, the Scottish Association for Mental Health and the Scottish Consortium for Learning Disability which was aimed at raising awareness of the new Act among people who use services and their family members. It was an event where audience participation was crucial to ensure that their views and concerns would be reflected through a conference report which would be sent to Chairs of Adult Protection Committees to assist them with their strategic planning. This report highlights the themes that emerged on the day.

Original source (some source materials require subscription or permission to access)

Growing older with learning disabilities: the GOLD programme

This paper provides an overview of the GOLD programme at the Foundation for People with Learning Disabilities. It describes the work of the 13 funded projects in a context of wider research concerning ageing and learning disabilities. Particular attention is given to those people living with older family carers and those living in residential services for older people. The picture is of services that offer little confidence for the future, as people with learning disabilities grow older.

Access source material through DOI

Developing local area co-ordination in Scotland: supporting individuals and families in their own communities

Following its development and evaluation in Western Australia, local area co‐ordination (LAC) has been included as an integral part of the strategy for people with learning disabilities in Scotland. LAC responds to the wishes of people with learning disabilities and family carers for more direct access to services and for continuity and co‐ordination of support. Local area co‐ordinators (LACs) work directly with individuals and families to help them find the information and local supports they need.

Access source material through DOI

Transforming your care: vision to action: a post consultation report

This document summarises responses to the 'Transforming your care: a vision to action' consultation which ran from 9 October 2012 to 15 January 2013. 'Transforming your care' proposes a reshaped model of care with the individual at the centre to improve health and wellbeing of people, adopting a prevention and enabling approach. A total of 2,242 responses were received to the consultation from either organisations or individuals. The report draws the key themes: investment, supporting carers, the role of the workforce in implementing changes, importance of engaging with the voluntary sectors, and the need for improved joint working to address health inequalities. The followng areas are also discussed: population, health and well-being; delivering services at home and in the community; older people's services; long term conditions; palliative and end of life care; mental health; learning disability; physical disability and sensory impairment; family and child care; maternity and child care; and acute care in hospital.

Original source (some source materials require subscription or permission to access)

Communication and challenging behaviour

Using interviews with two parent carers, and with specialist input from Peter McGill (Senior Lecturer in Learning Disability at the University of Kent at Canterbury Tizard Centre), this 40 minute video gives a basic introduction to challenging behaviour associated with severe learning disabilities. The video has been produced for parents and carers of individuals with severe learning disabilities and challenging behaviour, or anyone wanting to understand what it can be like for the families involved.

Original source (some source materials require subscription or permission to access)

Ageing and people with learning disabilities: in search of evidence

Background: Growing numbers of people with learning disabilities are now living into older age. This study aims to examine the state of knowledge about their lives and the challenges that ageing has for both family carers and policymakers and practitioners.

Materials and Methods: The article synthesises existing research in the fields of learning disability, ageing and family and social care with a view to learning lessons from these separate fields, identifying possibilities for collaboration and identifying gaps in knowledge.

Results: The article concludes that existing research in the fields of ageing and family and social care can add significantly to an understanding of the impact of ageing on people with learning disabilities and their carers but, to date, there has been little collaboration or sharing of knowledge between the three areas.

Conclusion: The article concludes that further research is required to fully understand the impact of ageing on the quality of life of people with learning disabilities and their family carers and to inform the design and delivery of services. A useful and productive way forward would be learn from and to work with researchers in cogniscent fields, notably, but not only, in the fields of social gerontology and family and social care.

Access source material through DOI

Commentary on “Growing older together: ageing and people with learning disabilities and their family carers”

Purpose – This commentary aims to support Carol Walker and Cally Ward's paper by directing readers to work which could guide their practice with older people with learning disabilities and ageing family carers.

Design/methodology/approach – The paper is a selected review of initiatives to support older people with learning disabilities and their family carers over the past decade. Examples from the author's personal contacts are used to illustrate the discussion.

Findings – There are excellent materials to support practice. These include several resources to use directly with people with learning disabilities. However the policy and funding framework of services can stand in the way of people getting good support. It can also make people's lives more difficult, including increasing social isolation.

Originality/value – The paper provides the reader with the means to access practical tools, including free web‐based resources.

Access source material through DOI

Work - life imbalance: Informal care and paid employment in the UK

In the United Kingdom, informal carers look after relatives or friends who need extra support because of age, physical or learning disability, or illness. The burden of informal care work falls on women, who often care for longer hours and durations than men. This paper considers the impact that caring responsibilities have on women's employment. The research is based on a dedicated questionnaire and in-depth interviews with informal caregivers. The results suggest that carers' employment is affected by the duration of a caring episode, financial considerations, the needs of the person they care for, carers' beliefs about the compatibility of informal care and paid work, and employers' willingness to accommodate carers' needs. Overall, the research confirms that informal carers continue to face difficulties when they try to combine employment and care in spite of recent policy initiatives designed to help them. 

Access source material through DOI

The knowledge people with learning disabilities and their carers have about psychotropic medication

Psychotropic medications are a treatment commonly used for people with learning disabilities. Legislation and guidance suggest that, for a person to give informed consent to treatment, they must have knowledge of the potential treatment. This study of 21 people with learning disabilities, and their carers and prescribers, living in four different regions of England, suggests that few of the people with learning disabilities were fully informed about their treatment. Many of their carers said that although they knew how to administer the medication, they knew little about why the person was taking it and what the implications might be. Despite this, people with learning disabilities made the general assumption that carers would, or should, know everything about their medication. The current provision of information to people with learning disabilities and carers was found to be poor. Four key strategies identified in supporting people with learning disabilities in obtaining information about medication were spending more time providing and reiterating key information, providing accurate, up‐to‐date, accessible information about medications, providing training for carers in wider aspects of medication usage, and tailoring information to each person's individual needs.

Access source material through DOI

The important things in life

Decisions made on behalf of people with a learning disability and their families are often made without any input from the people they affect the most. Mencap's 'Listen and Learn' consultation programme was developed to find what is important to people with learning disabilities. The consultation used surveys, focus groups and interviews with people with learning disabilities, their family members or carers, Mencap members of staff and leaders of local Mencap groups. The results of the consultation are briefly discussed under the following themes: early years and childhood; making decisions about where to live, jobs and money; support for the whole family; healthcare; participation; staying safe; and relationships. Mencap intend to use the results to inform its work and planning over the next five years.

Working lives: the role of day centres in supporting people with learning disabilities into employment

Summarises a research project jointly commissioned by the Department for Work and Pensions and the Department of Health, which explored how day centres are addressing employment, the relationships between day centres and employment related organisations, and the views and experiences of those who attend day centres and their carers. The research was undertaken to understand current provision and how employment opportunities for people with learning disabilities can be extended. The research used qualitative interviews with managers of day centres, organisations that help people into employment, people with learning disabilities in day centres and family and professional carers conducted in 9 local authorities across England.

Original source (some source materials require subscription or permission to access)

Supporting carers to care in a crisis: an analysis of additional service provision essential to carers of people with learning disabilities

Research into how unpaid carers for people with learning disabilities cope with 'crisis' in their lives and the lives of those they care for was commissioned by Gwalia Housing in Wales. Twenty four carers who had experienced a crisis situation were interviewed. Although carers feedback found great variation in carers experience and definitions of crisis, the most frequent theme was that a crisis was something that stopped carers carrying out their duties. Carers were also asked about their experience of services and how they could help in crisis. The article concludes with a number of recommendations for practice.

Original source (some source materials require subscription or permission to access)

The birds and the bees

Sexuality and people with learning disabilities is a controversial subject. Research suggests that, although paid carers are starting to acknowledge the importance of relationships, attitudes may be more conservative among family carers and the general public. This quantitative study looked at the attitudes of each of these groups. The researchers also considered whether knowing someone with a learning disability has an impact on the views of the general public and if there were difference in attitudes towards homosexuality among the three groups. The views of 144 people from a range of religions and backgrounds were collected using the Sexuality Attitudes Questionnaire for people with Intellectual Disability (SAQ-ID). The majority of respondents were between 18 and 39 years and 68.8% were female; they were mainly recruited from care facilities and a carers’ group. A limitation of the study was the small number of family carers who chose to take part and suggestions were made for improvements to the [...]

Learning with families: a training resource

The Foundation for People with Learning Disabilities has developed a training resource with a difference - family carers, who are also encouraged to deliver the training alongside professionals, developed the contents to train staff working in learning disability services.

Original source (some source materials require subscription or permission to access)

The dental and oral care needs of adults with a learning disability living in a rural community: Consideration of the issues

A questionnaire survey was undertaken in a rural health locality to examine the delivery of dental/oral health care to service users. Results indicate general satisfaction wth dental services, with attendance rates for treatment similar to the general population. However, the majority of clients not receiving dental checks in the previous year lived in formal care settings, suggesting standards were no higher in professional care contexts. A shortfall in NHS provision, poor facilities and financial disincentives created problems of accessing general dental services (GDSs) and placed an increased demand on the community dental service (CDS). Information-exchange between carers and dental personnel, blurring of care responsibilties and low priority afforded oral care were key issues preventing integrated care. Poor knowledge about client dental needs and high dependency levels between carers and clients indicate that training should be initially targeted at community learning disability nurses (CLDNs). Arguably they are best able to detect problems, facilitate access to services and disseminate health information. Recommendations are made for promoting dental/oral health awareness, routine health checks and production of a teaching pack. Further research concerning carer knowledge and attitudes to oral care is indicated. © 2001 Sage Publications.

Access source material through DOI

Statement on policy and practice for adults with a learning disability

All Wales People First has been actively involved in preparing this Statement on Policy and Practice for Adults with a Learning Disability. This has been a welcome opportunity for people with learning disabilities to get directly involved in policy making. We were able to give our very valuable viewpoint which reflects the desires, hopes, dreams, wants and needs of people with learning disabilities. Our involvement has come about through our membership of the Learning Disability Implementation Advisory Group that was set up by the Welsh Assembly Government following its response to the Fulfilling the Promises report. Many different groups, including parents, carers, and health, social services and education professionals, have been involved in producing this statement. It is a vision for everyone involved with learning disability. The Statement on Policy and Practice will help to make it more possible for people with learning disabilities to become included in community living and have more opportunities to develop our own lifestyles. We want to build bridges between us and the world out there and we see this as a two way process. We want people to understand us better and value us. We can make a valuable contribution to the community and we can help people in the community to recognise us as valued citizens. Making these links, would make the community safer for all

Original source (some source materials require subscription or permission to access)

Planning for the future with adults with a learning disability living with older carers

Planning for the future for those adults with a learning disability who live with older carers is an important aspect of the White Paper Valuing People (DoH, 2001). Indeed, such planning is essential if crisis situations are to be avoided, particularly the double shock to service users of losing their home at a time when they are also bereaved. Most research about future planning has tended to focus on the perspective of the family carer rather than that of the service user. To rectify this situation, this paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for their future housing and support. The findings demonstrate that adults with a learning disability are very aware of the likelihood of an end to family care and that they have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.

Access source material through DOI

Hidden caregivers: providing appropriate services

3rd in a series of 5 articles on informal carers in the UK, focusing on carers who may be more isolated. 

Although most caregivers are, by the nature of care giving, hidden, some caregivers are perhaps more noticeable than others. This suggests that some caregivers are less noticeable, more hidden. This third article in this series on caregivers will focus on the ‘more hidden’ of the caregivers: male caregivers, young caregivers, BAME caregivers, LGBT caregivers, rural caregivers and caregivers who are elderly or have a disability themselves. Some suggestions will be offered that may help healthcare assistants (HCAs) and nurses to support these caregiver groups.

Access source material through DOI

The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time

This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The objectives of this article are twofold: (i) to present a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) to come to a more in-depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan.

Access source material through DOI

Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges: NG11

This guideline covers interventions and support for children, young people and adults with a learning disability and behaviour that challenges. It highlights the importance of understanding the cause of behaviour that challenges, and performing thorough assessments so that steps can be taken to help people change their behaviour and improve their quality of life. The guideline also covers support and intervention for family members or carers.

The guidelines stress the importance of carrying out thorough assessments to identify the multiple factors that are likely to contribute to any challenging behaviour. Any assessments should include assessment of the person, their environment and any biological predisposition, together with a functional assessment. Any intervention should be to improve the overall quality of the person's life. Key priorities for implementation cover general principles of care; support and interventions for family members or carers; early identification and assessment of behaviour that challenges; psychological and environmental interventions; and medication.

Original source (some source materials require subscription or permission to access)

Adults with a learning disability living with elderly carers talk about planning for the future: aspirations and concerns

The majority of adults with a learning disability live with family carers, many of whom are ageing and have support needs of their own. Planning for the future thus becomes the key to preventing a crisis situation when family care is no longer viable because of death or ill health. Existing knowledge and practice are largely based upon the perspective of professionals and carers. This study explores the views, aspirations and concerns of adults with a learning disability, about living at home and planning for the future. Findings show that participants were very aware of the need for alternative housing or support in the future and had clear preferences about their future options. However, they also showed extensive concern for their family carers and this often impacted on their willingness to plan for the future or to move to alternative housing. Their demonstrable awareness of the inevitable death or ill health of family carers, and willingness to engage with the implications, emphasize the importance of involving adults with a learning disability in planning for their future, as well as providing them with bereavement support.

Access source material through DOI

Carer's choir - giving carers a voice through art

A creative initiative to address the isolation felt by many carers in South Wales is described. The initiative involved keeping a personal journal of original art work, poetry and thoughts.

Original source (some source materials require subscription or permission to access)

Access to health and social care services and information

Aim: The aim of this study was to explore carers' perceptions of their ability to access a range of health and social care services, including information about the services. Method: A total of 151 participants, who were all members of a charity set up and run by informal carers of people with learning disabilities, were given semi-structured questionnaires, which yielded qualitative and quantitative data. Further data came from two focus groups. Results: The majority of carers (131) had good access to their GPs and dentist, but approximately two thirds found accessing occupational therapists, speech and language therapists, psychologists or counselling services 'very difficult or impossible'. More than two thirds had difficulties accessing, changing or upgrading equipment. Conclusion: Professionals responsible for supporting carers must be adequately trained to provide timely, full and appropriate information to carers about these services, and effective help in accessing them.

Access source material through DOI

Food for thought: people with learning disabilities and family carers share their experiences of healthy eating

In this DVD people with learning disabilities and their family carers tell their story of healthy eating. Their stories show how some people and families have overcome barriers to healthy eating. As well as healthy eating, the DVD also covers enjoying cooking and eating, having choice and control about what you eat, where you eat and who you eat with. It shows that healthy eating works best when everyone works together.

Original source (some source materials require subscription or permission to access)


The article presents a letter from the editor of the journal discussing the articles presented within, which are centered on the subject of the lived experience of intellectual disabilities. The author summarizes the articles individually, which include research on the interactions of mothers with a learning disability with professionals, and the views of informal carers on a variety of topics.

Access source material through DOI

Current perceptions of respite care: experiences of family and informal carers of people with a learning disability

Access to regular, high-quality respite care has a beneficial impact on a carer’s ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers’ perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on ‘respite care’; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided.

Access source material through DOI

Growing older together: ageing and people with learning disabilities and their family carers

Purpose – This article aims to explore the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. Though this issue has been acknowledged by government, much more needs to be done to provide people with learning disabilities and their families with the necessary support to enjoy a healthy and active old age. 

Design/methodology/approach – This article draws on the work of the authors for over a decade in this field. 

Findings – Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families. 

Practical implications – More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down. 

Originality/value – The article draws together data from the fields of ageing, learning disability and family care to highlight the increasing challenge, which this growing, but neglected, population presents both for policy and practice. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group.

Access source material through DOI

Down's Syndrome and Dementia: A Resource for Carers and Support Staff

The article reviews the book "Down's Syndrome and Dementia: A Resource for Carers and Support Staff," by Karen Dodd, Vicky Turk, and Michelle Christmas.

Induction award: supporting people who have a learning disability: trainer pack with CD-ROM

The pack includes: introduction with information on: learning disability qualifications and standards; supporting assessment; involving people with learning disabilities and family carers in training; session plans; CD-ROM containing: activity sheets PowerPoint presentations video clips, and pdfs of all four study books with guidance on how to link learning to the relevant NVQ/SVQ.

Original source (some source materials require subscription or permission to access)

Developmental psychiatry - insights from learning disability

The Blake Marsh lecture, an annual lecture on learning disability, was endowed in 1963 in memory of Dr Blake Marsh, the former medical superintendent of Bromham House Colony in Bedford. The first lecture was given in 1967. To review the speciality of the psychiatry of learning disability and how it is currently practised in the UK. Clinical, service, research and educational issues in learning disability psychiatry are reviewed and illustrated. Key issues which emerge in all four areas include the importance of communication skills, consultation with users and carers, professional education and partnership. The psychiatry of learning disability is a complex, varied and stimulating branch of psychiatry with a strong developmental focus.

Access source material through DOI

Learning disability nursing: user and carer perceptions

It is frequently asserted that the views of patients or service users should inform the structure and delivery of health and social care services. In the UK, patient participation, the expertise of service users and user involvement in the design and outcomes of research have been repeatedly emphasized as producing services which are more responsive, better coordinated and less stigmatizing. The NHS has highlighted the importance of involving service users in education and training. This article reports on user and carer views about learning disability nursing. Data were collected as part of a larger project considering the changing roles and education of learning disability nurses in England.The article concludes with a series of challenges for future educational and service development.

Access source material through DOI

In-patient psychiatric care: what we can learn from people with learning disabilities and their carers

There has been much debate about the most appropriate site for in‐patient psychiatric care for people with learning disabilities. The evidence base for service delivery for this group is very scant. Even less is known about the experiences of service users and their carers, as their voices have been largely absent from this debate among service providers and policy makers. This article summarises results from a study into the experiences of adults with learning disabilities who were admitted for in‐patient psychiatric care. Their carers' views were also investigated. Differences between generic and specialist provision are considered, and implications for service delivery are discussed. Generic services in particular would appear in need of considerable improvements if they are to meet the needs of people with learning disabilities in line with current policy guidelines. Recommendations for improvement include greater sensitivity of staff to the needs of this group, increased provision of accessible information about treatment options and medication, and more careful consideration of the need to involve regular carers during the admission.

Access source material through DOI

Expert knowledge: a carer's perspective

In this chapter the author recounts her personal experiences of being a carer for her son and her interaction with social services in Scotland. The author's son is now over 30 years old and is on the autistic spectrum, has obsessive compulsive disorder and a learning disability. She recounts the early difficulties she had in dealing with health and educational professionals as she tried to achieve the best possible care for her son. Many of the professionals she encountered were unable to appreciate the importance of integrating her son into as many normal daily activities as possible. Communicating with health professionals was difficult and at times she felt ignored or treated as a token presence. Gradually she became more involved in support groups for carers, using her own experiences to advising on training matters and act as advocates for carers. She is now a member of the Carers and User Group at the University of Dundee.

Broadening horizons

The author argues that more people with learning disabilities and their carers would opt for individual budgets if they were given better support to make them work. Two short case studies are presented where parents explain how individual budgets have proved successful for their sons, each of who have complex learning disabilities.

Original source (some source materials require subscription or permission to access)

Journey to independence: how to run your life with direct payments

Presents an easy read guide to obtaining direct payments and choosing a carer. A Direct Payment is a cash payment from a Local Authority, to enable people to purchase their own services. The power to make Direct Payments is given to Local Authorities under the Community Care (Direct Payments) Act 1996, which came into force on the 1st April 1997. Guidance to accompany the Act specifically included people with a learning disability.

Does he have sugar in his tea? Communication between people with learning disabilities, their carers and hospital staff

Purpose – This study seeks to evaluate a Hospital Passport tool designed to provide information and improve communication between people with learning disabilities and hospital staff.

Design/methodology/approach – This paper is a qualitative study, which explores people's experiences of good and bad communication in hospital and their experiences of how a Hospital Passport impacts on that process of communication.

Findings – The paper finds that a Hospital Passport can act as a useful multi‐agency resource to improve communication and continuity of care for people with learning disabilities.

Originality/value – The study leads to insights and suggestions for health and social care professionals and organisations as to how communication can be improved to benefit vulnerable groups in hospital.

Access source material through DOI

Supported housing for people with Down's syndrome

There has been limited research on the attitudes of family carers and the part they play in helping people with a learning disability choose accommodation. A postal questionnaire was sent to family carers of people with Down's Syndrome, to identify their attitudes to supported living, their experience of the application process, and the support they provided to residents. It was found that main family carers of people with Down's Syndrome in supported living were generally satisfied with the housing and support provided, particularly with respect to activities of daily living. There was less satisfaction with the help received with managing finance and employment. There had been a mean of 2 years delay between application and securing accommodation. The large number of people providing care at home who wished their family-member to move into supported living suggests that there is a large unmet need for this type of accommodation. Almost all family carers continued to provide support after participants moved into supported living, particularly with more complex tasks such as financial management, and with responding to crises and ill-health. This indicates that people with a learning disability in supported living who do not have active contact with their family may be vulnerable financially and less likely than others to receive help at times of crisis. The proportion of residents in supported living who experience such problems will increase as family carers die or otherwise become too infirm to continue to provide support.

Access source material through DOI

An education programme for social care staff: improving the health of people who have a learning disability and epilepsy

This article will describe and examine course feedback from a local training initiative, which contributes to the improvements in the health status of people with a learning disability, who have epilepsy. The aim is to analyse how an education programme that focused on epilepsy and its management, together with a borough wide epilepsy protocol developed the skills of the local workforce. This education programme provided a framework for social care staff, enabling them to work both safely and effectively in their support of individuals with learning disabilities that have epilepsy. Learning disability nurses led this training initiative, in response to the health needs of people with learning disabilities. Success was achieved through the collaborative working across a number of agencies and through consultation with family carers and people with learning disabilities. For the purpose of this article the term social care staff refers to people employed within the community residential/day services both in statutory and nonstatutory agencies.

Access source material through DOI

'He will finish up caring for me' : people with learning disabilities and mutual care

Until recently, the carer's perspective has dominated research on families who include someone with a learning disability and recent legislation has underlined the carer's rights. Previous research has found that some more able people with learning disabilities were very aware of their parents' growing needs, and were taking on responsibilities within the family to help and support their carer/parents. However, recent legislation still dichotomizes family members into carers and cared-for people. The present paper is based on a research study of the impact of the UK Carers Act 1995 on families with someone with a learning disability. It involved canvassing the views of people with learning disabilities about their experience of assessments and their relationships within the family. The present authors found that many people with learning disabilities expressed empathy for their carer's point of view and that several people (including some who had high support needs themselves) were performing care tasks for their elderly parents. However, no one appeared to recognize the situation as one of mutual care, and parents generally carried on defining themselves as carers since they took responsibility and exercised control. The present authors conclude that mutual caring is far more common than is recognized and includes people with severe learning disabilities. A more holistic approach to assessment of needs is required that can take into account the complex web of interdependence within a family. Rather than categorizing people into ‘carers’ and ‘cared-for’, the present authors suggest a model that recognizes mutually supportive partnerships within the family.

Access source material through DOI

Young carers' needs

Dear Editor, For too long, the needs of young carers have fallen between the growing gap that separates adults’ and children’s services. Recent news coverage has once again highlighted the needs of these children but it is time to move forward and look at implementing solutions.

Access source material through DOI

The same as you? A review of services for people with learning disabilities

This review began by looking at services, especially in social and healthcare, and their relationship with education, housing, employment and other areas. However, its focus changed to include people’s lifestyles. That is what matters. Services are there to support people in their daily lives. The Learning Disability Review has succeeded in involving many of those with an interest, especially those who use services and their carers, at different points in the journey. The focus of the report is consistent with existing policies on community care. ‘Modernising Community Care’ wants better results for people through quicker and better decision-making, greater emphasis on care at home and agencies working more closely together.

Original source (some source materials require subscription or permission to access)