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Mental Health Services for Adults with Intellectual Disabilities - What Do Service Users and Staff Think of Them?
Abstract
The current qualitative study was funded by the Judith Trust to investigate service users', support staff and community team members' views of the services currently provided to adults with intellectual disabilities and mental health problems and what they consider to be desirable qualities for staff to possess.
In the first stage of the study, two focus groups were conducted with service users who have intellectual disabilities and mental health problems in addition to two focus groups with a variety of staff, all of who had recent experience of intellectual disabilities services. In the second stage, individual interviews were conducted with staff members employed in residential and community intellectual disabilities services. The number of participants totalled 54 (16 service users and 38 staff). A qualitative analysis (IPA) was adopted to identify dominant themes in the discourse of these stakeholder groups.
The analysis produced a number of themes that include: 'being interested', 'communication', 'competence-promoting support', 'past/present/future links', 'prevention', 'reviews and liaison', 'working with carers', 'looking after staff', 'staff training/supervision' and 'interface between services'.
A number of suggestions for improving services are identified and discussed in the context of current service policies and procedures.
... Small sample sizes (n = 6-30) were common with specific patient or population groups, eg, those accessing a particular service, such as mental health or community support. [35][36][37] Population-based studies were rare and relied on data gathered in a standard population-based survey, provided by proxy. 34 Cohorts included people with mild-moderate intellectual disability 5 or clinical population cohorts among people who had epilepsy, 1 congenital heart disease, 1 22q11.2 ...
... [38][39][40][41][42] Thirteen studies identified that purposeful recruitment of people with intellectual disability occurred via their healthcare provider, either as an inpatient, outpatient, or residential care client. 23,[35][36][37][38][39][40][43][44][45][46][47][48] By identifying potential participants through a care provider, it was possible to tailor the way in which information about participation was provided (based on a person's abilities). Support persons were often called about the project, which allowed for discussion about the individual's ability to provide information regarding their experience of care. ...
... Interviews and/or focus groups were used in 18 studies and 5 pieces of gray literature and were often conducted in conjunction with parent, carer, and/or clinician surveys. 23,35,37,39,41,42,44,[47][48][49][50][51][53][54][55][56][57]62,63,67,69,78 Strategies to gather interview data included in-person data collection, at the participants' home, and/or with a support person present. There was no direct evidence reported of the impact of these strategies on the quality of the content elicited, but the value of these strategies was described in terms of being able to make relevant adjustments to the data gathering process, eg, adjustments made to talking pace, length of sentences, words used, and the extent to which supporting visual materials were used. ...
... Another study highlighted how 'distant' or disengaged relationships with practitioners can prevent communication about risk and safety, often leaving service users to manage this alone (Coffey et al., 2017). One study found that service users felt practitioners were not interested in, nor took the time to get to know, them (Kroese et al., 2013). ...
... A further study suggested that mental health service users may see new social workers as a potential threat due to fear of hospitalisation (Bacha et al., 2020). Practitioners who breached confidentiality risked undermining service user confidence in them (Kroese et al., 2013). ...
... Two studies suggested this could undermine recovery-focused care (Simpson et al., 2016;Coffey et al., 2017). Some service users felt they could not influence or challenge professional decisions or were not listened to, particularly people with learning disabilities and mental health difficulties (O'Brien and Rose, 2010;Kroese et al., 2013;Krotofil et al., 2018). ...
Avoidable harm—that is, harm to service users caused by unsafe or improper interventions, practices or services and which could have been mitigated or prevented—is embedded in social care legislation and inspections. However, the concept of avoidable harm has largely been defined by policymakers, academics, practitioners, regulators and services, with little known about service users’ experiences of avoidable harm in practice. This survivor-controlled review maps and synthesises peer-reviewed literature on service users experience of social and psychological avoidable harm in mental health social care (MHSC) in England. The review was guided by an Advisory Group of practitioners and service users. Six databases were systematically searched between January 2008 and June 2020 to identify relevant literature. Following de-duplication, 3,529 records were screened using inclusion and exclusion criteria. This led to full-text screening of eighty-four records and a final corpus of twenty-two papers. Following data extraction, thematic analysis was used to synthesise data. Six key themes were identified relating to relationships and communication, information, involvement and decision-making, poor support, fragmented systems and power-over and discriminatory cultures. Impacts on MHSC service users included stress, distress, disempowerment and deterioration in mental health. We discuss our findings and indicate future research priorities.
... Healthcare providers (both primary and acute health care) may lack specialist training in this field. [20][21][22] Barriers to their training include time constraints, knowledge gaps, and uncertainties over specialist help. 23 Despite this, healthcare providers recognise the importance of such specialist training for people with intellectual disabilities and for others with communication challenges. ...
... [25][26][27] However, while such training may be essential, it may not be routinely undertaken owing to resource constraints. 22 ...
... Poor attitudes held by both healthcare professionals and non-health professionals, across both primary and acute healthcare provider settings, is a recurring theme in the review's identified studies. 22,[31][32][33] A warm, friendly, and caring attitude from healthcare providers enables service users to access healthcare facilities and discuss sensitive health concerns. 22,[34][35][36][37] ...
Background
Globally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice.
Aim
To investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs.
Design & setting
An integrative review was undertaken, which used systematic review methodology.
Method
Electronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies.
Results
Sixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes.
Conclusion
Adolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care.
... While the exact prevalence of mental illness in people with intellectual disability is still uncertain, current evidence suggests it is higher than in the general population and generally thought to be in the region of 40%, approximately double the non-intellectually disabled population (Cooper et al. 2007;Deb et al. 2001;Hatton & Taylor 2008;Krch-Cole et al. 2012;Longo & Scior 2004;Rose et al. 2012;Stenfert Kroese et al. 2013;Taylor et al. 2004). This increased vulnerability to developing mental illness can be attributed to numerous factors related to biological, environmental, and psychological impacts or stressors or just by the very virtue of the disability. ...
... 'The absence of their input from the discourse that contributes to the development of models surrounding caregiving creates a significant gap in the understanding of care relationships in the context of mental illness' (p 28). High response rates in the few recent studies does therefore indicate that people with intellectual disability are keen to be consulted regarding services and treatment they receive (Cleaver et al. 2010 Parkes et al. 2007;Scior & Longo 2005;Stenfert Kroese et al. 2013;Taua et al. 2014;Williams & Mfoafo M'Carthy 2006). ...
... Given the numerous complexities in recognizing and responding to the impacts of mental illness in people with intellectual disability it is critical that nurses (and other inpatient staff) have the communication, understanding and observation skills to identify both typical and atypical symptomatology; are aware of the impact negative life events may have on an individual; and are then able to amalgamate this information into an effective and holistic health plan (Taua et al. 2011). While several authors suggest that quality, understanding and knowledge base of staff working within mental health settings where people with intellectual disability are admitted is critical, gaps in the research evidence around effective assessment, decision making and proactive intervention remain (Ailey & Hart 2010;Chaplin 2004;Higgins 2004;Stenfert Kroese et al. 2013;Taua & Farrow 2009) While research is this field is increasing, some of it incorporating the views of people with intellectual disability as shown, much of it still appears to be in response to debate around the most appropriate site to deliver mental health care and the complexity of diagnosing and treating mental illness in this group and less about personal experiences of inpatient admission (Young & Chesson 2006). ...
This paper presents findings from a study exploring the mental health inpatient care of people with a dual disability of intellectual disability and mental health issues from the perspective of those people with the dual disability. A mixture of semi-structured interviews and focus group interviews were carried out with nine participants who had been admitted to an inpatient unit for mental health care exploring their experience of care. Interviews were transcribed and analyzed using open coding and Leximancer (an online data mining tool) analysis to identify dominant themes in the discourse. Results and recommendations Analysis revealed themes around 'Therapeutic and Meaningful Activity', 'Emotion Focussed Care', and 'Feeling Safe?' Participants were able to identify the aspects of inpatient care that worked for them in terms of coping with time in hospital. This research suggests that there are several factors that should be considered in providing effective mental health inpatient care for people with dual disability. A number of strategies and recommendations for responding to their needs are identified and discussed.
© 2015 Australian College of Mental Health Nurses Inc.
... Whilst knowledgeable nurses perform unseen, yet indispensible work on inpatient intellectual disability wards, often with little expectation of organizational support for their well-being, mental health services and care resources are rarely distributed in favour of individuals living and working with intellectual impairment (Kittay et al. 2005;Adnams 2010;Lewis & Stenfert-Kroese 2010;Friedman et al. 2012;Mckenzie et al. 2013;Stenfert Kroese et al. 2013a). Further complicating this dispersal of care is a well-documented nursing migration from South Africa, where nurses' voices in how they in turn are cared for remain unheard, to countries richer in care resources and policy. ...
... This forces us to reconsider factors that contribute to care migration. The voices, needs and well-being of nurses are instrumental to patient treatment outcomes (Stenfert Kroese et al. 2013a), and doing something important with what they have to say becomes urgent against a global care crisis backdrop (Kittay et al. 2005). ...
... Individuals caring for patients living with intellectual disability may find themselves sharing experiences of stigmatization and exploitation (Mitchell 2000). Job dependency may result in silent endurance and further subjugation as such work is rarely well paid, and appropriate training often unattainable (Kittay 2001(Kittay , 2009Tronto 2011;Stenfert Kroese et al. 2013a). Although South African nurses can specialize in psychiatric nursing at a post-qualifying level, and prequalifying student nurses in public service are assigned rotations on intellectual disability services wards, recognized specialist education in intellectual disability care is not yet available. ...
Background
Migrating nursing labour inadvertently reinforces South Africa's care drain, contributes to a global care crisis and forces us to reconsider migration motivation. This paper highlights issues that complicate psychiatric intellectual disability nursing care and identifies loci for change in an attempt to redress this care challenge.Method
An exploratory descriptive-interpretivist method investigated nurses' experiences of psychiatric intellectual disability work. Sixteen free association narrative interviews were collected in 2013. Thematic analysis allowed findings to emerge from the data.ResultsFindings reflect a number of themes: ‘relational interaction’, ‘care burden’, ‘system fatigue’, ‘infantilising dynamic of care’ and ‘resources for coping’.Conclusion
System fatigue contributes more to negative experiences of providing care than direct patient work, and nurses experience more relational reciprocity from patients than from institutional management. Organizations should meet nurses’ needs for burnout prevention, afford them impact in implementing institutional controls, and engage in a non-exploitative and non-exclusionary way.
... [14][15][16][17] Barriers to healthcare for persons with ID have been widely discussed in the medical literature and include factors relating to the person with ID, the healthcare professional, and the environment. Doherty et al 18,19,20 reviewed the barriers and facilitators to primary care for persons with ID and identified several important domains and barriers to consider when providing appropriate healthcare for persons with ID, including a lack of knowledge or awareness of the needs of persons with ID and a lack of reasonable adjustments in practice. 21,22 Other identified barriers include a lack of or inadequate communication skills of healthcare Inadequate communication with caregivers, failure to speak to the person with ID, 25 and provision of healthcare information that is not easily understood are some other examples of barriers to communication. ...
... Prolonged waiting times and the inability to express oneself during the short consult times are also important barriers to consider. 20,27 Locally, a cross-sectional survey of general practitioners (GPs) in Singapore was conducted to gauge their knowledge and challenges in the clinical management of persons with ID. Nearly 90 percent of the respondents identified the lack of communication skills in persons with ID as affecting the medical assessment during a consult. ...
Persons with Intellectual Disabilities (ID) have a higher prevalence of physical health impairments leading to morbidities and premature deaths. The common conditions implicated are epilepsy, gastrointestinal concerns such as constipation and dyspepsia, sensory impairments, musculoskeletal issues, and thyroid disorders. Chronic diseases including hypertension, type 2 diabetes, obesity, and metabolic syndromes occur at an earlier age and nearly half of these conditions are detected only by screening. Annual health checks by primary care teams in the community are being implemented in many countries. Comprehensive health checks using standard questionnaires and preventative health check guidelines specially designed for persons with intellectual disabilities are of great help to primary care physicians in busy clinical settings. Addressing the concerns raised by healthcare professionals on the lack of knowledge and understanding of health needs of persons with ID can be easily addressed by appropriate training programmes. Eliminating communication barriers can be achieved by appropriate training programmes and implementing the use of easy-read materials. Reasonable adjustments must be implemented in practices to facilitate better health experiences for persons with ID and their caregivers.
... [14][15][16][17] Barriers to healthcare for persons with ID have been widely discussed in the medical literature and include factors relating to the person with ID, the healthcare professional, and the environment. Doherty et al 18,19,20 reviewed the barriers and facilitators to primary care for persons with ID and identified several important domains and barriers to consider when providing appropriate healthcare for persons with ID, including a lack of knowledge or awareness of the needs of persons with ID and a lack of reasonable adjustments in practice. 21,22 Other identified barriers include a lack of or inadequate communication skills of healthcare Inadequate communication with caregivers, failure to speak to the person with ID, 25 and provision of healthcare information that is not easily understood are some other examples of barriers to communication. ...
... Prolonged waiting times and the inability to express oneself during the short consult times are also important barriers to consider. 20,27 Locally, a cross-sectional survey of general practitioners (GPs) in Singapore was conducted to gauge their knowledge and challenges in the clinical management of persons with ID. Nearly 90 percent of the respondents identified the lack of communication skills in persons with ID as affecting the medical assessment during a consult. ...
Persons with Intellectual Disabilities (ID) have a higher prevalence of physical health impairments leading to morbidities and premature deaths. The common conditions implicated are epilepsy, gastrointestinal concerns such as constipation and dyspepsia, sensory impairments, musculoskeletal issues, and thyroid disorders. Chronic diseases including hypertension, type 2 diabetes, obesity, and metabolic syndromes occur at an earlier age and nearly half of these conditions are detected only by screening. Annual health checks by primary care teams in the community are being implemented in many countries. Comprehensive health checks using standard questionnaires and preventative health check guidelines specially designed for persons with intellectual disabilities are of great help to primary care physicians in busy clinical settings. Addressing the concerns raised by healthcare professionals on the lack of knowledge and understanding of health needs of persons with ID can be easily addressed by appropriate training programmes. Eliminating communication barriers can be achieved by appropriate training programmes and implementing the use of easy-read materials. Reasonable adjustments must be implemented in practices to facilitate better health experiences for persons with ID and their caregivers.
... , suggesting a keen interest in expressing their views regarding various issues such as the services and treatments they receive (O'Brien & Rose, 2010;Scior & Longo, 2005;Stenfert Kroese et al., 2013). Most research on people with intellectual disabilities and their experiences of in-patient psychiatric treatment has been conducted in western countries (Donner et al., 2010;Longo & Scior, 2004;Scior & Longo, 2005) which identified themes of disempowerment, lack of meaningful activities and not being informed about treatment options. ...
... However this is largely neglected by service providers and people with intellectual disabilities are found to have few friendships, lack support in activities with their friends in institutionalized setting and few have non-disabled friends in the community (Emerson & McVilly, 2004). People with intellectual disabilities are capable of making close friendships and enjoying mutual activities together (Knox & Hickson, 2001), which suggest that service providers should work on The personal qualities of mental health professionals have an impact on the relationships and interactions with this population who prefer mental health professionals who are willing to take time to listen and understand them and help them to promote their competency (Lloyd et al., 2013;Mattock et al., 2020;Stenfert Kroese et al., 2013). This was also found in previous research, people with intellectual disabilities are frustrated with the limited amount of time with their healthcare professionals during which their concerns are not adequately addressed (Wilkinson et al., 2013). ...
Purpose
This study aims to explore the experiences of people with intellectual disabilities in Singapore receiving inpatient mental health treatment. To date, there has not been any research that examines the views and experiences of this population in Singapore. The research examines how the participants view their mental health problems and their experiences of the services they received.
Design/methodology/approach
A qualitative design was chosen to address the research question. Six adult men with intellectual disabilities were recruited from the tertiary hospital and interviewed. The transcripts of these interviews were analysed using interpretative phenomenological analysis.
Findings
Four super-ordinate themes were identified; awareness of mental health problems; yearn for a life outside the ward; interacting with other people and finding purpose.
Originality/value
The participants reported that they struggled with being segregated from their families and communities following an inpatient admission. They were able to report on the emotional difficulties that they experienced and hoped to find employment after their discharge from the hospital. They talked about reconstructing their self-identity and forming friendships to cope with their hospital stay. This research is one of its kind carried out in a non-western society and the findings are discussed in the light of how mental health professionals can best support people with intellectual disabilities during their inpatient treatment.
... Our project provides further documentation that there are not enough community-based supports and services for young adults with IDD-MH (Kroese, Rose, Heer, & O'Brien, 2013;Lunsky, Garcin, Morin, Cobigo, & Bradley, 2007). Many young adults shared that they were hospitalized or provided medication against their will. ...
... respect for the autonomy and dignity of people with IDD-MH (Barelds et al., 2010;Bonell et al., 2012;Donner, Mutter, & Scior, 2010;Kroese et al., 2013;Lunsky et al., 2007). Young adults and families who participated in our storytelling sessions and web survey emphasized that providers should learn how to communicate with young adults with IDD-MH and their families. ...
Introduction: The Intellectual and Developmental Disability Mental Health (IDD-MH) Research Partnership was created to learn about the experiences and needs of young adults with IDD-MH while accessing and using mental health services. Our national partnership consists of six young adults, five professionals, researchers at Boston University, and representatives from Self Advocates Becoming Empowered and The Arc of the United States. Our partnership worked together virtually for one year.
Methods: We designed and conducted a web survey with young adults with IDD-MH ages 18–30 living in the United States (n = 76). We also completed four national storytelling sessions (1 in person, 3 virtual) that included young adults with IDD-MH (n = 10) and parents of young adults with IDD-MH (n = 6).
Results: We identified eight priority topic areas for young adults with IDD-MH: Transition to Adulthood, Insurance & Financial Resources, Professionals’ Competence, Understanding the Experiences of People who Communicate Differently, Hospitalization, Medication, Alternatives to Medication, and Social Supports.
Conclusions: Using what we learned, we generated recommendations to advance research and practice in areas important to young adults with IDD-MH. These recommendations highlight the importance of community-based options, choice, autonomy, and control for young adults with IDD-MH.
... Published research that specifically describes the attributes required of generalist mental health professionals is lacking. A qualitative study by Kroese, Rose, Heer, and O'Brien (2013) reports broadly on the qualities of staff working within services that support people with an intellectual disability and mental ill health rather than specifically generalist mental health services. In response to this gap, the researchers initiated the Intellectual Disability Mental Health Core Competencies (IDMHCC) project. ...
... This study asked family members and support persons of people with an intellectual disability and co-occurring mental ill health about the attributes that they thought make an effective generalist mental health professional for people with an intellectual dis- Table 3). The attributes identified in this study may assist in overcoming some of the negative experiences reported by people with an intellectual disability when trying to access mental health services (Donner, Mutter, & Scior, 2010;Kroese et al., 2013;Longo & Scior, 2004;Lunsky & Gracey, 2009;O'Brien & Rose, 2010). ...
Background:
Generalist mental health professionals are inadequately equipped to meet the rights of people with intellectual disability. A better understanding of the attributes of effective professionals may assist in the development of workforce capacity in this area.
Methods:
Twenty-eight family/support persons of people with intellectual disability participated in four focus groups. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework.
Results:
Participants described attributes that aligned with current professional expectations such as working together and new attributes such as differentiating between behaviour and mental health. An unexpected finding was the need for professionals to be able to infer meaning by interpreting multiple sources of information. Participants also wanted professionals to acknowledge their professional limitations and seek professional support.
Conclusion:
Family/support persons identified a range of attributes of effective mental health professionals to support people with intellectual disability. Further research is necessary, particularly from the perspective of people with intellectual disability.
... The initial findings of our analysis resonate with the literature related to individuals with co-occurring IDD and mental illness. Research has found that the co-morbid health needs of people with IDD are not met to the extent necessary by community services (Cooper et al., 2007;Kroese, Rose, Heer, & O'Brien, 2013). Cooper et al. (2007) proposed further work to examine the factors that perpetuate the health inequalities experienced by people with IDD, which our findings make strides in identifying within the context of policy. ...
... Our findings suggest that mental health services and supports need to address the unique needs of people who have both IDD and mental illnesses. In order to meet these needs, mental health service providers need additional training for working with people with IDD through their professional education programs or continuing education (Kroese et al., 2013), as well as interventions to address public stigma enacted (often inadvertently) by service providers in health, education, and other social services (Ali et al., 2016). In addition to addressing mental illness directly, this training can include practices that foster positive disability identities, which can potentially mitigate the self-stigma internalized by people with IDD through their interactions with these services and supports, and with people in their communities. ...
Introduction: Stigma is widely identified as an issue affecting the health and well-being of people with intellectual and developmental disabilities (IDD), and those with mental illnesses. To address this issue, a population mental health strategy, which includes a focus on reducing stigma and discrimination, was developed by the government of Ontario, Canada. Methods: Drawing on a critical policy analysis approach, we examined how stigma and mental illness are problematized and addressed in this strategy, and the implications for people with co-occurring IDD and mental illness. Results: Our analysis revealed that implicit understandings of exclusion, dependency, and inadequate economic participation have shaped how the explicitly identified issues of stigma and discrimination related to mental illness are problematized in the strategy. These implicit understandings have shaped courses of action (e.g., mental health promotion and anti-stigma programs) that may have positive consequences (e.g., skills for managing one’s own mental health, decreased discrimination related to mental illness), but may have unintended negative consequences (e.g., stigma of being different and doing different than people without IDD and/or mental illness, and not being able to support oneself). Conclusions: Acknowledging disability discrimination and emphasizing other ways of participating and being included in communities that are not predominantly focused on independence and productivity can potentially contribute to reducing the stigma experienced by people with concurrent IDD and mental illness, and improve their health and well-being.
... Over the last decade this gap has been recognised to some degree, and there has been a growing momentum of researchers seeking the views of people with intellectual disabilities. The intellectual and functional difficulties that people with intellectual disabilities and mental health problems encounter are likely to compound their mental health difficulties (Stenfert Kroese, Rose, Heer and O'Brien, 2013), suggesting an additional level of need compared to people with mental health needs without intellectual disabilities, for example around issues of consent, understanding of symptoms and related experiences, communication, and practical daily living skills. 'Valuing People' (Department of Health, 2001) states that people with learning disabilities should be treated within mainstream mental health services rather than specialist services where possible. ...
... It is, therefore, not surprising that establishing a good relationship was found to be important in the O'Brien and Rose study, as was giving the service user choice and control over their life. Stenfert Kroese, Rose, Heer, and O'Brien (2013) examined the experiences of services of people with intellectual disabilities and mental health problems. They found that mainstream mental health services for people with intellectual disabilities lacked quality and ease of access. ...
Purpose
– Research into the views of people with dual intellectual and mental health difficulties is sparse. The purpose of this paper is to gain a greater understanding of how individuals with mild intellectual disabilities living in the community understand their psychotic symptoms and experiences.
Design/methodology/approach
– Five participants with intellectual disabilities and psychotic symptoms living in the community were interviewed. The interview schedule explored key areas: understanding and experiences of having an intellectual disability and a psychotic disorder, and of services provided. The data were analysed using Interpretative Phenomenological Analysis.
Findings
– The analysis elicited three main themes: self-concept: “How I understand and see myself”, incorporates what participants understood about their labels, their experiences, and how these labels fitted in with their self-concept; Impact: “How having mental health problems and learning difficulties affect my life”, encompasses communication barriers, lack of control, and stigma and vulnerability. The third main theme was coping: “How I cope with my mental health and learning difficulties”.
Research limitations/implications
– The findings suggest that the participants, rather than identifying with specific psychiatric labels perceive themselves as having individual and specific needs. The analysis highlights areas that can be developed to help with coping; ensuring people are respected and heard, empowerment through the development of positive social roles, and psycho-education. These results are a step towards developing understanding of this group of service users.
Originality/value
– There has been no previous research into the perspective of this service user group in the community. The study makes recommendations for future person-centred interventions.
... Participants expressed worries regarding positive changes not being maintained. Kroese et al. (2013) investigated service users' and other stakeholders' views of services for adults with an ID and mental health problems and the qualities that staff should possess. Participants identified having a genuine interest in working with people and building positive relationships, having good therapeutic interpersonal and communication skills, providing support and enabling individuals and being able to understand and acknowledge important past events. ...
... Previous research exploring the views of individuals with an ID of their experiences of therapy has also used IPA (e.g. Kroese et al., 2013;Pert et al., 2012). ...
There is a general lack of self-report data from service users with an intellectual disability (ID) about their views of psychological interventions. This research explored the views and experiences of female inpatients, with a diagnosis of a personality disorder and an ID, about dialectical behaviour therapy (DBT). Semi-structured interviews were used with 10 women, recruited from two independent mental health hospitals. The interviews were analysed using interpretative phenomenological analysis. Participants showed varying levels of understanding of DBT. Findings highlight the need for a standardized approach with a suitably adapted structure and curriculum to meet the needs of inpatients with an ID. Factors such as the therapeutic relationship were identified as playing a role in participants' motivation, engagement and participation in DBT.
... This item reflects the finding that support workers feel their role is to promote empowerment by upholding the rights of individuals with ID whilst also protecting them from risks, such as to their health. This supports Yazbeck et al. (2004) who found that disability workers acknowledged the importance of empowering individuals and upholding their rights and Kroese et al. (2013) who discovered that support workers emphasize the importance of allowing service users to gain independence by placing them central to all decisionmaking. Thus, from the evidence, it seems that support workers hold positive attitudes towards individuals with IDs. ...
... Thus, from the evidence, it seems that support workers hold positive attitudes towards individuals with IDs. It is important that support workers' attitudes towards their role as a carer are measured as it has been shown that staffs' attitudes affect the people with intellectual disabilities' quality of life (Kroese et al., 2013). By including items in an attitude scale that measure attitudes towards their role, it can be seen whether any guidance or training is needed to enhance support workers' delivery of services, which promote empowerment and independence. ...
The aim of this study is to explore support workers' attitudes and knowledge towards individuals with intellectual disabilities (IDs) to see whether a new attitude scale needs to be developed.
Support workers from a charitable organization located in the West Midlands in the United Kingdom participated in one of four focus groups conducted in late 2013. Thematic analysis was then conducted which identified the emergent themes from the focus groups.
Five themes emerged from the analysis, namely, discrimination of people with IDs, attitude change, impacts of integration, their role as a carer and the impact of training. Only one theme, 'the impacts of integration', is clearly represented in current attitude scales; 'their role as a carer' and 'discrimination of people with IDs' are partially represented.
These results suggest that current attitude scales do not accurately measure the attitudes of support workers; therefore, a modified attitude scale could be developed to incorporate findings from this study.
© The Author(s) 2014.
... While it is not the remit of this paper to comment upon the efficacy of the intervention, it is clear that this method of service delivery was acceptable for the participants who took part in this study. This suggests that such interventions, delivered in day services by trained support staff, could offer an effective method of increasing access to psychological therapies for a group of people who, although their psychological needs are greater, rarely have access to appropriate mental health services (Stenfert Kroese et al. 2013). As in previous studies (MacDonald et al. 2003; Hays et al. 2007; Pert et al. 2013), it was the shared social experiences and developing positive relationships with the lay therapists and other group members that the majority of participants responded most positively to, rather than specific elements of the CBT intervention. ...
... It seems likely that, particularly with an established group, adopting a focus group methodology can support participants in their attempts to recall and discuss their experiences. Moreover, in order to adhere more closely to a social constructionist approach, future studies may involve service users in developing the interview schedule and in conducting the interviews or (as in Stenfert Kroese et al. 2013) the focus group discussions. In conclusion, according to service-users' accounts, the 'I'm In Control' anger management intervention provides valued opportunities for participants to learn new skills and develop positive relationships. ...
Background
People with intellectual disabilities (ID) are rarely asked about their experiences as users of psychological services and little is known about the views of clients with ID who have undergone cognitive behavioural therapy (CBT). This study aimed to gather the views of adults with ID who had recently taken part in a cluster randomised control trial (RCT) of a staff-delivered manualised CBT anger management group intervention. MethodA qualitative method, Interpretative Phenomenological Analysis (IPA), was employed and eleven participants were interviewed. The interviews took place after the intervention, within two weeks of the end of the group, to gain an understanding of service users' experiences of participating in a CBT group. ResultsIPA of the interview transcripts indicated that the intervention was experienced as effective and enjoyable and a number of themes were identified including: the importance of relationships', a new me', new and improved relationships', presenting myself in a positive light' and what the group didn't change'. Conclusions
The results will be discussed in the context of applying group CBT for adults with ID and implications for service development.
... mental health needs of individuals with learning disabilities is the lack of training that staff, who are employed in services for people with learning disabilities, receive regarding mental health issues(Stenfert Kroese et al., 2013). Therefore, it is crucial that staff, especially those without recognised qualifications in health or social care, have sufficient training in mental health issues(Costello, Hardy, Tsakanikos, & McCarthy, 2010).Additional points noted during the research with Ted, and other participants, were the importance of daytime occupational activities(O'Brien & Rose, 2010), and person-centred planning in relation to mental health care(NICE, 2016), in supporting service users with learning disabilities and mental health issues. ...
Accessible summary
This is a case study about a man with learning disabilities who has mental health issues.
The case study describes the way that he told a researcher about his life.
Thirty years of his earlier life were spent in a long‐stay hospital in England, UK and more recently he has lived in a community setting with five other people.
This research is important as it assists us to understand the experiences of people with learning disabilities who have mental health needs.
Abstract
Background
Historically, the emotional lives and mental health needs of adults with learning disabilities received scant attention, especially when the policy of institutionalisation was at its zenith in the UK.
Materials and Methods
This case study employed biographical narrative interviews based on a psychosocial approach. The main sources of data production were two loosely structured, audio‐taped, interviews with a man with learning disabilities. This approach uses free association to elicit an individual's stories about his lived experiences. Additional information was acquired from consultations with key care staff and clinical records maintained by the man's service provider.
Results
Data revealed insights into the biography of this man who had a diagnosed mental health disorder. These data recall his personal journey through the care system which took place during an important historical period encompassing both long‐term institutionalisation in segregated settings, and the subsequent implementation of the policy of community care in the UK. He recalls positive and negative experiences while residing in a long‐stay hospital, and the related thoughts and feelings about his life in a community setting in more recent years.
Conclusion
This case study contributes to an increasing body of studies that perceive the use of in‐depth interviewing of individuals with learning disabilities as having high ecological validity in the development of authentic knowledge, not readily available through other methods used in the co‐production of data.
... As for treatment, the highest number of notes concerned the need for organisation/collaboration and structure/predictability, both of which have been emphasised in previous studies (Bhamuik et al. 2008;Hall et al. 2006;Kroese et al. 2013). Thus, adapting treatment strategies for individuals with intellectual disabilities appears to involve translating these strategies into organisational endeavours, starting from a shared understanding of the individual and their difficulties across different systems and levels of care. ...
Background
Individuals with intellectual disabilities are at increased risk of mental health disorders, but may struggle to access appropriate services. While assessment/treatment may need to be adapted, knowledge is limited about what such adaptations may entail.
Method
During a service development project, the participants (33 professionals, 13 family members) were asked to identify the characteristics/associated factors of individuals with intellectual disabilities and co‐occurring mental health disorders. Using thematic analysis, 1103 participant responses were analyzed to identify the needs for adaptation in assessment/treatment.
Results
Three core themes were identified: (1) A broader assessment: Gaining an accurate and comprehensive understanding of the individual's history, abilities and difficulties, (2) Adjusting/modifying existing treatment strategies, (3) Ensuring that the individual's day‐to‐day needs are met.
Conclusions
According to the participants, assessment/treatment of mental health disorder in this population requires more time and broader assessments are necessary. Family/caregiver involvement and cross‐service organisation/collaboration represent other important adaptations.
... (b) Significant persons who should be involved in SDM in psychotropic drug prescribing according to clients with intellectual disability (n = 53), support professionals (n = 9) and representatives (n = 13). [Color figure can be viewed at wileyonlinelibrary.com] qualitative study on views of clients and staff of intellectual disability service providers on the quality of mental health services (Kroese et al., 2013). Here, service users and support staff indicated that mental healthcare service providers should ensure that their staff demonstrate genuine interest in their clients, should have knowledge on issues related to having an intellectual disability and should be trained in communicating with them. ...
Accessible summaries
People with intellectual disabilities are often prescribed medication for mental or behavioural disorders.
It is important that healthcare professionals listen to the views of people who are prescribed this medication.
However, people may not be involved enough when decisions are made about their medication. They might not have enough information about their medication in a way that they understand.
We wanted to know the views of clients with intellectual disability about their psychotropic medication use.
We invited clients, their representatives and paid carers of a specialist mental healthcare centre to take part in a survey.
Questions were about:
(1) The relationship with their doctor.
(2) If they were given the right information.
(3) Involvement in medication evaluations.
(4) Involvement in decisions regarding their medications.
Seventy‐eight service users (57 clients and 21 carers) completed the questionnaire.
Answers were that:
(1) Service users were satisfied with the overall care from their doctor.
(2) Service users were satisfied with the information about the prescription of medication that was provided verbally.
They were less satisfied about written information that they received about their psychotropic medication.
(3) Most service users reported being involved in medication decision‐making, but fewer than half were completely satisfied with this.
(4) Most service users wanted to be more involved in decisions about their medication.
Our findings mean that healthcare professionals need to do more to involve service users with learning disabilities in decisions about their medication.
... Despite the reported importance of mental disorders, there is limited evidence regarding the specific experiences of health care workers and caregivers in caring for people with LD and mental health problems in the field of mental health care (Chiang et al., 2022;Schmidt & Uman, 2020). Some of these studies focus on presenting people's experiences of mental health services (Kroese et al., 2013;Whittle et al., 2019) and psychotherapy (Evans & Randle-Phillips, 2020;Lewis et al., 2016;Ramsden et al., 2016). Other studies include investigations of the perspectives of caregivers, direct support staff, social workers, nurses, health professionals, mental health professionals, and therapists in general or in relation to mental health services and inpatient mental health care for people with LD (e.g., Araten-Bergman & Werner, 2017;Ee et al., 2021Ee et al., , 2022Fredheim et al., 2013;Lee & Kiemle, 2015;Rose et al., 2012). ...
Little is known about OCD in people with learning disabilities (LD) in general and in terms of current and professional support. In this study, we examined caregivers' perceived challenges and strategies practiced in institutionalized settings in managing OCD in people with LD and derived implications for research and practice. We studied individual cases of people with LD (n = 7). Each case included group discussions (n = 28) and semi-structured interviews with caregivers (n = 20). We used qualitative content analysis to analyze the data. Our findings reveal the following challenges for caregivers: recognizing and classifying ambiguous behaviors, recognizing emotional well-being and needs through nonverbal signals, finding and applying effective strategies, being unqualified regarding additional needs, managing inappropriate institutionalized conditions, and lacking external specialization. We identified five strategies for dealing with compulsive behavior: tolerating and allowing, accepting and supporting, involving, limiting the compulsive act, and stopping the act. Collaboration among psychiatric, therapeutic, and caregivers in institutionalized settings is critical for early identification and support of OCD. Challenges arise from caregivers' lack of training on the additional needs of people with LD and OCD, highlighting the urgent need for disorder-specific guidelines for identification and support.
... People with ID have a higher vulnerability toward developing mental health problems and poorer access to services (Bhaumik et al., 2008;Hatton, 2016), thus it is therefore important to explore the views of relevant stakeholders to consider how the mental health problems of this population can be addressed. A number of western studies have included the views of service users to explore ways to improve the mental health services (Lloyd et al., 2013;Lunsky & Gracey, 2009;Stenfert Kroese et al., 2013). Others have focused on the perspectives of family carers and professional staff to evaluate the quality of services for people with ID and identify desirable attributes of mental health professionals working in specialist services (Lunsky et al., 2008;Weise et al., 2017;Weiss & Lunsky, 2009). ...
Introduction
This research investigated the views of different stakeholders regarding the specialist mental health service for people with intellectual disabilities (ID) in Singapore.
Method
Interviews were conducted with mental health professionals, family carers and service users with ID. Framework analysis was adopted to identify common dominant themes among the different participant groups.
Results
Analysis revealed four themes 1) Giving choice and autonomy; 2) Training to become competent; 3) Respect and 4) Part of the community
Conclusions
People with ID living in Singapore have limited opportunities to express their choices and autonomy especially when it comes to treatment planning. Family carers have a significant influence on the level of community presence of their relatives with ID. Participants identified employment for people with ID as a way to improve public perceptions. There was no mention of people with ID developing social relationships. Recommendations are discussed in the context of current service provision.
... The MMHP participants did recognise the need to move beyond concentrating on mental health problems and viewing their clients in a holistic manner, taking into account their strengths, including their relationships and interactions with their family and community. Skills relevant to partnership, collaboration and good communication were identified in previous western studies (Weise et al. 2017) as well as warmth, openness and gentleness to promote empowerment and foster genuine relationship with people with intellectual disabilities (Stenfert Kroese et al. 2013). ...
Background: Generic mental health staff often have contact with people with intellectual disabilities when they access mainstream mental health services. To date, there has not been any research conducted in non-western countries to explore their views. This paper investigates the views and experiences of mainstream mental health professionals regarding the mental health services for people with intellectual disabilities in Singapore.
Methods: Eight staff members from generic mental health services were interviewed. Thematic analysis was used to identify main themes.
Findings: The main themes are related to their work experiences, perceptions of people with intellectual disabilities, ideal staff characteristics and service recommendations.
Conclusions: Participants identified a lack of experience and knowledge when working with this population. They highlighted the challenges they face promoting choice and autonomy for people with intellectual disabilities. The discussion includes recommendations for improving staff knowledge through training opportunities, consideration of non-pharmacological approaches and early collaboration with caregivers during the treatment process.
... Verschillende studies hebben ook het perspectief van mensen met een verstandelijke beperking en psychiatrische problematiek op de ondersteuning die zij krijgen onderzocht. Het ging hierbij om ondersteuning binnen de reguliere of gespecialiseerde geestelijke gezondheidszorg of binnen een forensisch (psychiatrische) setting (Clarkson et al., 2009;Donner, Mutter, & Scior, 2010;Longo & Scior, 2004;Griffith, Hutchinson, & Hastings, 2013;Murphy, Estien, & Clare, 1996;Stenfert Kroese et al., 2013). Hieruit bleek dat relaties met begeleiders die gebaseerd waren op vertrouwen, eerlijkheid, geduld en oprechte interesse hoog gewaardeerd werden. ...
... This is a promising result and in line with other studies [18,19] indicating that the common rights stipulated by the UN (2006) are increasingly respected. However, the theme also points towards remaining challenges such as frustration, uncertainty and stigma, which previous studies also have shown [20,21]. The participants found discussions about having a partner and becoming a parent as the most challenging. ...
Background:
Different types of staff support individuals with intellectual disability (ID) in their daily life, in schools, leisure activities and in special accommodations. This study aimed to gain a deeper understanding of experiences and perceptions regarding sexual and reproductive health and rights (SRHR) among staff.
Methods:
Data were collected in mid-Sweden in four focus groups with altogether 20 participants, 18 women and 2 men aged between 18 and 65 years. They had different professions and worked among youth and adults with ID aged 18-40 years in schools, accommodations and with leisure activities. Their working experience varied from 3 years to more than 20 years. Interviews were audio recorded, transcribed and analysed with content analysis.
Results:
The participants generally described positive attitudes towards sexuality for people with ID, both among themselves and in society. However, many situations such as ensuring privacy, balancing between waiting and acting, issues around contraception and reproduction were difficult to address and participants had hesitations about childbearing. They described different strategies such as showing respect, enhancing self-esteem and decision making ability and using interprofessional support to cope with frustrating situations. They lacked a clear mandate from managers as well as written guidelines and policies. They requested education and support from peers, supervisors and other professionals.
Conclusion:
Participants in the study were generally open-minded and accepting towards sexuality among young people with ID. They thought it was difficult to deal with reproduction/parenthood and felt unprepared and frustrated in certain situations. The participants requested a clear mandate from managers, organizational guidelines, more education and inter-professional support. We believe these findings can inform the development of policy and support the implementation of SRHR related guidelines to support staff working with young people with ID.
... Several researchers have examined how people with intellectual disability and additional psychological problems perceive the support they receive from specialist mental health services, forensic services for people with intellectual disability and mainstream mental health services (Clarkson, Murphy, Coldwell, & Dawson, 2009;Donner, Mutter, & Scior, 2010;Longo & Scior, 2004;Griffith, Hutchinson, & Hastings, 2013;Murphy, Estien, & Clare, 1996;Stenfert Kroese, Rose, Heer, & O'Brien, 2013). Relationships with staff that are based on qualities such as trust, honesty, patience, a genuine interest and a caring attitude were highly appreciated. ...
... Collaborations with other professionals and stakeholders were considered standard practice by a majority of psychologists. This is consistent with a recommended systemic approach to intellectual disability care involving partnerships with carers, support staff, and other professionals while synthesizing knowledge of the client and clinical expertise (Kroese, Rose, Heer, & O'Brien, 2013). In relation to partnerships with carers, the impact of cultural factors on service access and interactions would also be important to consider. ...
Working with individuals with dual disabilities can be a complex process in the presence of limited evidence base to guide clinical practice. The aims of this qualitative study were to investigate perceptions of best practices of Australian psychologists who work with this specialist population. Thirty-eight Australian psychologists working in the intellectual disability field participated in eight semistructured focus groups. Perceptions of evidence-based practice for individuals with intellectual disabilities and in relation to mental health assessment were explored. Psychologists demonstrated resourcefulness in adapting to limits in available evidence-based practice and in modifying mainstream practice to suit the needs of individuals with dual disabilities. Findings suggest the necessity of practice-based evidence in contributing to the evidence base, and person-centered approaches in relation to best practice for people with intellectual disabilities. Implications for strengthening psychologists’ clinical competency and bridging the research and practice gap are discussed.
... Several researchers have examined how people with intellectual disability and additional psychological problems perceive the support they receive from specialist mental health services, forensic services for people with intellectual disability and mainstream mental health services (Clarkson, Murphy, Coldwell, & Dawson, 2009;Donner, Mutter, & Scior, 2010;Griffith, Hutchinson, & Hastings, 2013;Longo & Scior, 2004;Murphy, Estien, & Clare, 1996;Stenfert Kroese, Rose, Heer, & O'Brien, 2013). Relationships with staff that are based on qualities such as trust, honesty, patience, a genuine interest and a caring attitude were highly appreciated. ...
Background
To enhance social inclusion of people with intellectual disability, policy is aimed at increasing informal support networks. Nevertheless, staff continue to play a vital role in their support networks.
Method
Six individuals with mild intellectual disability, living in community‐based settings, were interviewed following a semi‐structured format. In‐depth accounts of participants’ support experiences were established using Interpretative Phenomenological Analysis.
Results
Three main themes were identified: relationships with staff placed within a personal history, relationships with staff within an organisational context, and staff support and interviewees’ place in the world.
Conclusions
Relationships with staff were often one of the closest and most significant social relationships participants had. As living in the community had not necessarily led to meaningful inclusion for participants, the findings point at the important role of staff in supporting and facilitating friendships and close relationships of people with intellectual disability.
... Participants valued being 'understood' and 'listened to' by others and wanted support to be as independent as possible. Stenfert Kroese et al. (2013) similarly found the qualities which individuals with intellectual disabilities value in staff and services are staff who are genuinely interested in service users' experiences, good communication skills, and support which promotes competence rather than reliance. Some participants found living with others who have intellectual disabilities improved their hospital experience. ...
Objectives
Services supporting individuals with intellectual disabilities are changing in the UK with a drive towards community care and reducing inpatient provision. More needs to be known about the experiences and opinions of individuals living in inpatient settings. Women with intellectual disabilities and offending behavior are a particularly complex, under-represented group affected by these organizational changes. This research aims to consult women with intellectual disabilities, living in a secure hospital, to explore their housing experiences and hopes for future home and care environments.
Method
Seven participant’s experiences, and the meaning they assign to these experiences, were explored through semi-structured interviews. Their narratives were analyzed utilizing Interpretive Phenomenological Analysis.
Results
Four superordinate themes emerged from the analysis (i) hospital as helpful (ii) hospital as undesirable (iii) a sense of belonging (iv) ‘I want to be as independent as I can.’ The subtheme ‘importance of people’ emerged throughout with illustrations of why people are important relating to each superordinate theme.
Conclusions
The women interviewed experienced living in hospital as both helpful and undesirable. They wanted to live as independently as possible in the community. However, they identified several helpful aspects of hospital including receiving specialist support for their complex needs. They desired independence, freedom to choose, personal space, familiarity, and support from individuals who understand their needs. Whilst it is recognized that hospitals cannot be homes for people, they do have a function in providing helpful specialist support to some individuals with intellectual disabilities who have committed serious crimes and/or cannot safely be supported in the community.
... Providing training to paid mental health care staff and non-paid care givers can give way a better competence in management of mental problems which is also important for improving the quality of life and reducing the prevalence of those mental disorders (19). ...
The rapid growth in the number of individuals living with intellectual and developmental disabilities (IDD) along with their increased longevity present challenges to those concerned about health and well-being of this unique population. While much is known about health promotion and disease prevention in the general geriatric population, far less is known about those in older adults with IDD. Effective and efficient health promotion and disease prevention strategies need to be developed and implemented for improving the health and quality of life of older adults living with IDD. This is considered to be challenging given the continued shrinkage in the overall health care and welfare system services due to the cut in the governmental budget in some of the western countries. The ideal health promotion and disease prevention strategies for older adults with IDD should be tailored to the individuals’ health risks, address primary and secondary disease prevention, and prevent avoidable impairments that cause premature institutionalization. Domains of intervention should include cognitive, mental and physical health, accommodations, workplace considerations, assistive technology, recreational activities, and nutrition.
Background
Fragile X Syndrome (FXS) is an X-linked neurodevelopmental disorder that leads to intellectual disability (ID) along with cognitive-behavioral difficulties. Research on psychosocial treatments in individuals FXS and ID is still lacking. This study aimed to investigate the effectiveness of a combined neuropsychological and cognitive behavioral group therapy (nCBT) among young adults with FXS.
Method
Ten young adults diagnosed with FXS took part in the second stage intervention of "Corp-osa-Mente" (CoM II), a group nCBT program previously outlined by Montanaro and colleagues in an earlier study, with the participants being the same as in the previous research. This report details the outcomes of an additional twelve-month group sections aimed at enhancing the ability to manage emotions and the socio-communicative skills of these young adults. Caregivers completed measures of adaptive functioning, emotional and behavior problems, executive function, communication skills and family quality of life at pre-treatment (T0) and post-treatment (T1).
Results
CoM II showed a decrease in depressive and anxiety symptoms from T0 to T1, along with increased socio-pragmatic and communication skills from pre-test to post-test intervention. Additionally, our analysis revealed improvements in the adapative behavior of participants and in the family quality of life.
Conclusions
These preliminary findings suggest that young adults with FXS and ID experienced positive outcomes through participation in CoM II, a group nCBT. However, it is recommended to undertake additional methodologically rigorous studies, such as randomized controlled trials (RCTs), to substantiate these initially promising findings.
Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers’ experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population.
Lay Abstract
Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to ‘fight’ for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families.
Definitions of adulthood for people with intellectual disability are often complicated, with milestones being markedly different for this population. This is then associated with difficulties for both the people with intellectual disability and their parents, who are closely involved in this transitional period. This paper aims to report on parents’ perception and experience of adulthood for their son or daughter with an Intellectual Disability (ID). Qualitative data were collected through 30 − 60-minute phone interviews with eight parents of a person with an intellectual disability aged 15 or older (mean parent age = 60; mean child age = 23). Thematic analysis found that Perception of Adulthood encompassed themes of Independence and Normality. Experiences of Adulthood were categorised under Government Services, Responsibility and Social Supports. Findings of this research provide information for the growing literature around adulthood for people with intellectual disability, as well as how to amend policies and procedures for services that cater to people with intellectual disability and their parents during this transition.
Background
Mental health professionals play an important role in providing care and treatment for adults with intellectual disabilities. A number of studies use qualitative methods to explore the experiences of these professionals and their perspectives regarding the mental health services for this population. A systematic review using meta-ethnographic approach was undertaken to summarise this research.
Method
A systematic search found 14 relevant studies which were critically appraised. Key themes from these studies were extracted and synthesised.
Results
Three main themes were identified: 1) Understanding the person, 2) Relational interaction and 3) Organisational factors.
Conclusions
The findings of this review identified the issues mental health professionals raised in relation to their work. They described the complex presenting problems as intense yet fulfilling therapeutic relationships with their clients and their wish to improve their knowledge and skills. They identified organisational issues that need to be addressed to improve staff morale and efficiency.
Purpose
Recent guidelines from the National Institute of Health and Care Excellence highlight that service users (SUs) with intellectual disabilities and co-occurring mental health problems rarely get the opportunity to share their experiences of mental health services. Over the past 20 years, policy documents have stated that these individuals (SUs) must be included in decisions about their care. Research suggests that often this is not the case. Therefore, this paper aims to create a space for SUs to share their experiences of mental health services, and what they found helpful.
Design/methodology/approach
A focus group was held with five SUs, two psychologists and two researchers. The audio recording of the discussion was transcribed and analysed using thematic analysis.
Findings
Three main themes were identified, namely, “relationships with others”, “inclusion and communication” and “challenges”. This focus group highlighted that although some SUs felt supported, they reported having little control in their lives and wanted to be listened to.
Research limitations/implications
Including a SU in the planning and facilitation of the focus group would have made this research more inclusive.
Practical implications
The implications of this research suggest that by listening to and involving SUs and developing more person-centred services, recovery rates may increase as the services provided would be more targeted.
Originality/value
Very little research has previously been conducted to explore SUs’ experiences. This paper highlights the value of being heard and the knowledge that is often lost if the authors do not take the time to listen to the people for whom a service is designed.
Background
In 2015, approximately 2.16% of adults were recorded as having intellectual disabilities. UK government policy is that adults with intellectual disabilities should access mainstream health services. However, people with intellectual disabilities experience challenges when accessing primary and community health services that can lead to inequalities and shorter life expectancy.
Objectives
To map and review the evidence on access to primary and community health-care services for adults with intellectual disabilities and their carers. To identify influencing factors for gaining access to primary and community health-care services. To determine which actions, interventions or models of service provision improve entry access to these services for people with intellectual disabilities and their carers. Finally, to identify the gaps in evidence and provide implications for health care and recommendations for research.
Data sources
MEDLINE, The Cochrane Library, Web of Science, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Applied Social Sciences Index and Abstracts (ASSIA) and Education Resources Information Center (ERIC) were searched from 2002 to 2018.
Review methods
The mapping review methodology included an extensive literature search, article selection and data extraction of relevant abstracts. Findings from the mapping review informed the scope of the targeted systematic review. Methodology for the targeted systematic review included an extensive literature search informed by the mapping review, article selection, data extraction, quality appraisal and narrative synthesis.
Results
The mapping review included 413 studies with data extraction completed on abstracts. The targeted systematic review synthesised the evidence from 80 studies reported in 82 publications. During the review process, the team identified three key points at which people with intellectual disabilities potentially interacted with primary and community health-care services: identifying needs, accessing services and interaction during a consultation. In addition, there were a number of papers about interventions or innovations to improve access. Evidence from the studies was synthesised within the four clusters. Influencing factors were identified: staff knowledge/skills, joint working with learning disability services, service delivery model, uptake, appointment making, carer/support role, relationship with staff, time, accessible information and communication. The influencing factors were cross-cutting through the literature, with certain factors having more importance in certain clusters.
Limitations
The main limitation was the weak evidence base. The studies generally had small samples, had study designs that were open to potential biases and measured only short-term outcomes.
Conclusions
Health checks were found to help identify health needs and improve the care of long-term conditions. Important factors for accessing health services for adults with intellectual disabilities were consistency of care and support, staff training, communication skills and time to communicate, and provision of accessible information. Health professionals need to ensure that there is joint working between different services, clear communication and accurate record-keeping. Future research questions centre on the need to develop and value creative study designs capable of addressing the complex issues identified in the findings of the review for this complex population.
Funding
This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research ; Vol. 8, No. 5. See the NIHR Journals Library website for further project information.
Accessible summary
Dramatherapy groups are being used to help people with learning disabilities move from hospital back to their homes.
The staff who support people to attend the groups talked about their experiences.
The staff felt the groups help people stay well, build friendships and get support quickly if needed.
The staff felt that the groups were helpful for themselves too as they felt supported and learned new skills.
Abstract
Background
The UK Government's Transforming Care Agenda for people with learning disabilities has struggled to meet its goals of reducing inpatient beds and building community‐based support. This article reports on the experiences of support staff who attended dramatherapy groups developed to assist transitions from an inpatient hospital and to prevent re‐admissions through post‐discharge support. The groups provide ongoing support and a place where relationships can be developed between supporter and those supported.
Materials and Methods
A focus group with a purposive sample of paid support staff. The data was synthesised using a thematic framework approach.
Results
Themes include: (a) new way of supporting and (b) hospital connection. The groups helped improve social interaction, friendship building, communication and self‐confidence. Additional benefits include the pooling of support and a connection with professionals that enables difficulties to be caught early.
Conclusions
Support workers valued these dramatherapy groups, recognising how the intervention enabled people with learning disabilities to develop relationships and provide easy access to mental health professionals. Support staff also found benefits for themselves which included shared support and an increased understanding and insight into the people they support.
Purpose
Catatonia is increasingly recognised as a comorbid syndrome of Autism Spectrum Disorder (ASDs). The assessment and management of individuals with comorbid ASD and intellectual disability (ID) adds a further dimension to this already complex presentation, with few cases identified in the literature. The paper aims to discuss these issues.
Design/methodology/approach
This paper presents four cases of catatonia in individuals with comorbid ASD and ID. The diagnostic challenges, response to treatment and prognosis are discussed whilst comparing with the existing literature.
Findings
A high index of suspicion is required to recognise the subtle catatonic features seen in patients with ASD and ID. Clinicians should be particularly vigilant following stressful events in young adults. The assessment of catatonia in ASDs and ID requires a pragmatic approach given the lack of suitable diagnostic tools and difficulties completing investigations. Caution is advised when using rating scales as they are not validated in ID. The mainstay of treatment is lorazepam, although responses vary.
Originality/value
The discussion of these four cases strengthens the existing literature, and highlights the implications a comorbid diagnosis of ID has on the assessment and management of catatonia in ASDs.
Purpose
The majority of adults with intellectual disabilities (ID) are prescribed at least one, if not multiple medications, with psychotropic medications being the most commonly prescribed. Direct care staff play an important role in psychotropic medication administration and monitoring, yet little is known about their knowledge and comfort with medication. The paper aims to discuss this issue.
Design/methodology/approach
A 15-item survey, focusing on self-reported knowledge and comfort with psychotropic medication, was completed by 152 direct care staff employed at three agencies providing residential services for individuals with ID across Ontario.
Findings
In total, 62 per cent of staff respondents reported that psychotropic medications were among the top medications regularly taken by the individuals they support, with behaviour listed as the most commonly reported reason for taking this medication. The majority of staff reported monitoring medication, however, the frequency of monitoring varied considerably. Generally, staff reported feeling comfortable and knowledgeable about medication use, but, most reported a desire for additional medication training.
Originality/value
This is the first Canadian study to examine staff knowledge and comfort regarding medication use, and the first study to assess PRN (“as needed”) as well as regularly administered medications.
Background:
Psychotropic medication is widely prescribed to treat mental illness. However, it is controversial when used as a chemical restraint (CR) to manage challenging behaviours (CBs) of adults with intellectual disability (ID). CR has potentially negative consequences and affects human rights.
Method:
Qualitative research conducted between 2014 and 2015 explored the views of 'guardian' decision makers appointed under unique Queensland legislation oversighting the use of CR.
Results:
Findings included (1) negative conceptualization of CR, (2) concerning relationships with prescribers and disability sector staff, (3) challenges to information seeking about people with ID prescribed CR and (4) problematic implementation of positive behaviour support plans.
Conclusion:
According to guardians, CR may be used in lieu of community supports, and prescribers sometimes diagnose mental illness to avoid CR legislative requirements. Guardians, prescribers and professionals would benefit from training that addresses the intersection between physical and mental health, CB and CR.
Fully revised, this new edition reviews the most up-to-date and clinically relevant information on the mental health and behavioral problems of people with intellectual, developmental and learning disabilities, also previously known as mental retardation. Providing the latest evidence base from the literature and embracing clinical experience, it covers the essential facts and concepts relating to coexisting medical and psychiatric disorders, with new and updated chapters on mental health and epilepsy, schizophrenia spectrum disorders, personality disorders, and mental health problems in people with autism and related disorders. The disorder-based chapters are complemented by chapters on carer and family perspectives, possible future developments and contributions highlighting the principles of assessment, management and services from global and historical perspectives. This is essential hands-on practical advice for psychiatrists, psychologists and all other mental health professionals including nurses, therapists, social workers, managers, service providers and commissioners.
Fully revised, this new edition reviews the most up-to-date and clinically relevant information on the mental health and behavioral problems of people with intellectual, developmental and learning disabilities, also previously known as mental retardation. Providing the latest evidence base from the literature and embracing clinical experience, it covers the essential facts and concepts relating to coexisting medical and psychiatric disorders, with new and updated chapters on mental health and epilepsy, schizophrenia spectrum disorders, personality disorders, and mental health problems in people with autism and related disorders. The disorder-based chapters are complemented by chapters on carer and family perspectives, possible future developments and contributions highlighting the principles of assessment, management and services from global and historical perspectives. This is essential hands-on practical advice for psychiatrists, psychologists and all other mental health professionals including nurses, therapists, social workers, managers, service providers and commissioners.
This paper presents findings from a study exploring the nurses' experience of caring for adults with intellectual disability and mental health issues in inpatient settings. Semi structured interviews were undertaken with 13 nurses from various regions of New Zealand. Methods suggested by an Appreciative Inquiry methodology were used to explore the nurses' positive experiences of their role. Interviews were transcribed and analysed using open coding and Leximancer (an online data mining tool) analysis to identify dominant themes in the discourse. Analysis revealed themes around 'Contextualising behaviour', 'Communication', 'Confidence to care' and 'Time'. Participants reflected upon their experiences offering personal interpretations in identifying the aspects of nursing that mattered and that worked. What is shown is that nurses were able to describe a range of creative and adaptive ways of nursing in responding to numerous complex factors they faced in their roles. This suggests a strong foundation on which to advance nursing care in this field.
Australia’s implementation of the National Disability Insurance Scheme promises a new era characterised by person-centeredness, choice, self-determination, human rights, consumer directed care, and equity for people with disabilities. This shift to personalisation assumes a connection to increasing levels of independence and autonomy. Central to this endeavour is the emergence of new and innovative ways to support people with disabilities, which move away from block-funded inflexible group services and toward provision based on individualised preferences. A key litmus test in this promised new era is how the scheme caters to those who have the most complex support needs. This group is define as those who face a number of inter-related challenges which may include intellectual disability; health conditions; mental health issues; behaviours that are a risk to self or others; substance misuse; insecure or inadequate housing; cultural, circumstantial or intergenerational disadvantage; family and domestic violence and contact with the criminal justice system. Individuals with complex support needs are often marginalised and disadvantaged within the current service system and in the community.
This chapter addresses the intersection of the operational logics of the NDIS as an insurance scheme, the human rights approach underpinning it, and their application to people with disability and complex support needs. The chapter addresses questions including: how do people with significant decision making limitations experience quality support in the NDIS world? How can professionals support decision making but not make decisions for? How do the most vulnerable or those with high-risk lifestyles access the scheme, and to what extent will the marketplace offer supports to those with complex support needs? Case examples are used to illustrate these questions, and the pivotal role and challenge for case management is highlighted throughout.
This article reports on the findings of a scoping review of peer-reviewed research that investigates the formal support experiences of adults with an intellectual disability and mental health problems. Seven databases and 21 sources of grey literature were searched and 17 articles were retained for review, demonstrating the dearth of literature in this area. Key findings were organized in terms of service types studied and social justice issues. Findings indicate that people with an intellectual disability and mental health problems often experience distress and alienation in both mainstream and specialist psychiatric inpatient units, and in emergency departments. Since respect for personhood is central to positive experiences of formal support the significance of service users’ appeals to be treated with dignity and respect should not be underestimated. A new “integrated” model of inpatient care offers the potential of redressing some of the shortcomings of conventional care, but further research is needed. Despite well-documented challenges in conducting research with people with an intellectual disability, the authors conclude that the use of inclusive research designs must be expanded in order to enhance the formal support experiences of people with an intellectual disability and mental health problems.
The purpose of this systematic review was to determine the effectiveness and implementation of advanced allied health assistant roles.
A systematic search of seven databases and Google Scholar was conducted to identify studies published in English peer-reviewed journals from 2003 to 2013 and reporting on the effectiveness and implementation of advanced allied health assistant (A/AHA) roles. Reference lists were also screened to identify additional studies, and the authors' personal collections of studies were searched. Studies were allocated to the National Health and Medical Research Council hierarchy of evidence, and appraisal of higher-level studies (III-1 and above) conducted using the Centre for Evidence Based Medicine Systematic Review Critical Appraisal Sheet for included systematic reviews or the PEDro scale for level II and III-1 studies. Data regarding country, A/AHA title, disciplines, competencies, tasks, level of autonomy, clients, training, and issues regarding the implementation of these roles were extracted, as were outcomes used and key findings for studies investigating their effectiveness.
Fifty-three studies were included, and most because they reported background information rather than investigating A/AHA roles, this representing low-level information. A/AHAs work in a range of disciplines, with a variety of client groups, and in a number of different settings. Little was reported regarding the training available for A/AHAs. Four studies investigated the effectiveness of these roles, finding that they were generally well accepted by clients, and provided more therapy time. Issues in integrating these new roles into existing health systems were also reported.
A/AHA roles are being implemented in a range of settings, and appear to be effective in terms of process measures and stakeholder perceptions. Few studies have investigated these roles, indicating a need for research to be conducted in this area to enable policy-makers to consider the value of these positions and how they can best be utilized.
This research aimed to investigate staff knowledge and attitudes towards working with adults with both a learning disability and a mental health difficulty. Government policy in the UK suggests a shift in service provision such that the treatment of people with a learning disability who have mental health problems should be undertaken by mainstream mental health services rather than specialist learning disability services.Staff members from both specialist and mainstream services took part in a series of focus groups to discuss their experiences and attitudes about working with this group of people. The transcriptions of the groups were analysed to identify common themes. Findings from the study suggest that staff within mainstream services currently feel that they are inadequately trained to deal with the often complex mental health needs of this group. Conversely, staff in learning disability services expressed concern about losing their specialist skills in generic services.The implications of the themes raised are discussed, particularly in relation to future service provision. Care will need to be taken if service redesign is to be achieved without detriment to service users.
Family-centred service (FCS) is a popular phrase widely used to encompass a set of ideas about service delivery to children and their families. Despite the increasing adoption of the concepts of FCS, however, many clinicians may remain uncertain about exactly what FCS means. This review article has four purposes. The first section presents a brief review of the history and ideas behind FCS. Second, the authors present a new framework of FCS, blending the elements of this approach into a set of ideas that have immediate clinical applicability. The third focus of this paper is to review the research evidence that supports FCS and to point to areas where further research is needed. Finally we consider the implications for service providers of the move to FCS, and the potential uses of the FCS framework as a guide for teaching and research.
To investigate the prevalence and classification of potentially reversible conditions in a prospective memory clinic cohort of younger and elderly patients with cognitive symptoms.
1000 consecutive patients referred during a period of 54 months to a university hospital multidisciplinary memory clinic based in neurology.
All patients were referred for diagnostic evaluation and treatment of cognitive symptoms. The multidisciplinary staff prospectively established a standardised consensus report for each patient based on the results of clinical and ancillary investigations with classification of cognitive profile, primary underlying cause, and concomitant conditions.
The mean age of the patients was 66.1 years (range 17-98) and 43% met diagnostic criteria for dementia. A potentially reversible primary aetiology for cognitive symptoms was identified in 19% and a potentially reversible concomitant condition in 23% of all patients. In the subgroup of patients with dementia, 4% had a potentially reversible primary aetiology. Careful clinical examination, routine laboratory tests, and cranial computed tomography identified most of these conditions.
Reversible conditions are most often encountered in patients with mild cognitive disturbances. Although treatment may not always result in full reversal of cognitive symptoms, potentially reversible conditions should be identified in the diagnostic evaluation of the patient.
Social support for parents is primarily seen as promoting parental competence and well-being. Yet, social support may have a negative influence that can seriously inhibit effective parenting performance. Enthnographic research on mildly retarded parents is used to examine interpersonal aspects of social support to develop a multi-dimensional model of social support and parenting. The model, based on the assumption that the mere existence of a support network is not sufficient to predict parental coping and competence, distinguishes between support that promotes child caretaking competence and support that inhibits competence. Furthermore, it is argued that competence promoting support is developed in the context of a low level of environmental strain in the support system, a positive perception of parental caretaking competence, and the extent to which the system provides support directly to the parent, rather than directly to the child.
The application of the systemic approach in working with people with learning disabilities, their families and their support systems has grown over the last decade in the UK. The way in which the family, support systems and wider contexts interact with each other may affect how the person with learning disabilities presents for help to services, and will also affect engagement, expectations and possible solutions to crises. If the relationship in focus is the person's behaviour in a family setting, family therapy may be useful to explore relational difficulties within the family. This article considers the issues that might benefit from using this model, explains how to include the adult with learning disabilities in the process, and summarises the evidence of its effectiveness.
SummaryA wide range of prevalence rates of psychiatric disorders in people with learning disabilities has been reported, and as yet, there appears to be no general consensus on how to improve the process of diagnosis in order to achieve better agreement. Distinguishing behavioural disturbance from psychiatric disorders is clearly problematic, and empirical and conceptual issues concerning the nature of these disorders brings into question the validity and reliability of psychiatric diagnosis in people with learning disabilities. Concern has been widely expressed about the high frequency with which psychotropic medication is prescribed to this client group. The present paper reviews some of the recent literature, and questions whether psychiatric diagnosis and the use of psychotropic medication are sufficiently evidence-based to be justified practice.
Background Care staff play a key role in identifying individuals with intellectual disabilities and additional mental health problems. Yet, few receive training in mental health, and evidence about the effectiveness of training is scant.
Materials and Methods A pre–post study is reported, using a mental health screen and a self‐report questionnaire to examine staff awareness of mental health problems and to measure whether training improved knowledge of psychopathology, attitudes towards mental health services and referral decisions.
Results Prior to training, deficits in awareness were evident. The Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS‐ADD) Checklist detected significant psychopathology in approximately one‐third of the individuals judged to have no mental health problems according to staff. Four months after the delivery of training, significant improvements in knowledge, attitudes and referral decisions were observed.
Conclusion Brief training interventions may improve awareness of mental health problems, but further research is needed to understand the referral process and to demonstrate the role of training in influencing actual staff behaviour.
This paper argues that the critical social scientist can employ the focus group – group discussions focused by a facilitator around a particular topic or area of experience – to recast radically both the social relations and the object of the research process. I explore the potential of the focus group to cultivate the sociological imagination in both the facilitating social scientist and the participants: in Bhaskarian terms, a ‘transformtional act', raising consciousness and empowering participants, rupturing rather than reproducing underlying relations of exploitation and domination. The hitherto dominant forms of focus group research are criticised as being embedded in the epistemological and methodological assumptions of positivism, behaviourism and empiricism, and in social relations which service power. The qualities of the focus group which have attracted the marketer and advertiser – access to the experiential knowledge, opinions and world-view of the participants, in a context of synergic interaction – are examined. The paper argues for an alternative, radical use of focus groups, based on the new politics of knowledge associated with movements of social resistance. The relationship between this radical conception of focus groups and both Habermas's theory of communicative action and Bhaskar's critical realism is discussed and examples of the potential for focus groups to democratise governance and service provision are offered.
Health checks for people with intellectual disabilities (ID) have been recommended as one component of health policy responses to the poorer health of people with ID. This review summarises evidence on the impact of health checks on the health and well-being of people with ID.
Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with ID.
A total of 38 publications were identified. These involved checking the health of over 5000 people with ID from a range of countries including a full range of people with ID. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs.
Health checks are effective in identifying previously unrecognised health needs, including life-threatening conditions. Future research should consider strategies for optimising the cost-effectiveness or efficiency of health checks.
Maladaptive behaviours are known to present as a feature of dementia amongst people from the general population, but there has been little research to examine whether this has implications for people with learning disabilities who develop dementia. Out of 143 people with learning disabilities aged 65 years and over living in Leicestershire, England, 134 (93.7%) participated in the study. Twenty-nine people diagnosed as having dementia were compared against 99 people without dementia; six people with possible dementia were excluded from the analysis. Comparisons were made on the results of a checklist of maladaptive behaviours. Seventeen out of the 22 maladaptive behaviours examined were found to be more prevalent amongst the people with dementia. The behaviours which were significantly more prevalent in the group with dementia included lack of energy, lack of sense of danger, sleep disturbance, agitation, incontinence, excessively uncooperative, mealtime/feeding problem, irritability and aggression. Dementia is becoming more prevalent amongst people with learning disabilities because of their increasing life span. Maladaptive behaviours are commonly associated with dementia. This can cause a significant burden for individuals and their carers, which may influence the viability of a person's residential placement.
Adults with intellectual disability (ID) and mental illness may use general or specialist psychiatric services. This review aims to assess if there is evidence for a difference in outcome between them.
A literature review was conducted using a variety of electronic databases and hand-search strategies to identify all studies evaluating the outcome of people with ID and mental illness using general psychiatric services.
There is no conclusive evidence to favour the use of general or specialist psychiatric services. People with ID stay less time on general psychiatric than specialist inpatient units. People with severe ID appear not to be well served in general services. Older studies of inpatient samples suggest a worse outcome for people with ID. Novel specialist services generally improve upon pre-existing general services. Assertive outreach in general services may preferentially benefit those with ID. Recent studies suggest similar lengths of stay in general psychiatric beds for people with and without ID.
Although 27 studies were located, only two were randomized controlled trials. The evidence is poor quality therefore further evaluation of services employing a variety of designs need to be employed to give more robust evidence as to which services are preferred.
Reported prevalence of mental ill-health among adults with intellectual disabilities ranges from 7 to 97%, owing to methodological limitations. Little is known about associations.
To determine the prevalence of mental ill-health in adults with intellectual disabilities and to investigate factors independently associated with it.
Population-based study (n=1023) with comprehensive individual assessments modelled using regression analyses.
Point prevalence of mental ill-health was 40.9% (clinical diagnoses), 35.2% (DC-LD), 16.6% (ICD-10-DCR) and 15.7% (DSM-IV-TR). The most prevalent type was problem behaviours. Mental ill-health was associated with more life events, female gender, type of support, lower ability, more consultations, smoking, incontinence, not having severe physical disabilities and not having immobility; it was not associated with deprived areas, no occupation, communication impairment, epilepsy, hearing impairment or previous institutional residence.
This investigation informs further longitudinal study, and development of appropriate interventions, public health strategy and policy. ICD-10-DCR and DSM-IV-TR undercount mental ill-health in this population compared with DC-LD.
To examine the most recently published studies on the co-morbidity of medical and mental-health problems in people with intellectual disabilities.
Studies that have been published in the review period have advanced our understanding and strengthened the evidence base on how to meet the complex healthcare needs of people with intellectual disabilities more effectively and reduce their health inequalities, as compared with the general population. In particular, there is much emphasis on epidemiology, epilepsy, dementia, use of psychotropic medications and health-screening intervention.
In view of the common interface of medical and mental-health problems in people with intellectual disabilities, and the disparity in health they often face, initiatives should be taken to enhance their healthcare. Family carers, social-care providers, primary-care practitioners and specialist psychiatric teams can all play an important role in recognizing ill health and navigating access to the appropriate health services that people with intellectual disabilities need.
Investigating staff knowledge and attitudes towards working with adults with intellectual disabilities and mental health difficulties Advances in Mental Health and Intellectual disabilities 1, 3 Family-centred service: a conceptual framework and research review
- Rose J Rose
- O Brien
- A Rose
- J Rosenbaum
- P King
- S Law
- G Evans
Rose J. (2011) Audit of learning disability teaching at Birmingham University 2009/10. In: Health Mental Services for Adults with Learning Disabilities Judith Trust, London. Rose N., O'Brien A. & Rose J. (2007) Investigating staff knowledge and attitudes towards working with adults with intellectual disabilities and mental health difficulties. Advances in Mental Health and Intellectual disabilities 1, 3. Rosenbaum P., King S., Law G. & Evans J. (1998) Family-centred service: a conceptual framework and research review. Physical and Occupational Therapy in Paediatrics 8, 1–20.
Interpretative Phenomenological Analysis – Theory, Method and Research Psychiatric diagnosis and the use of psychotropic medication for people with learning disabilities who have psychological problems – help or hindrance?
- J A Smith
- P Flowers
- M Larkin
Smith J. A., Flowers P. & Larkin M. (2009) Interpretative Phenomenological Analysis – Theory, Method and Research. Sage, London. Stenfert Kroese B., Holmes G. & Dewhurst D. (2001) Psychiatric diagnosis and the use of psychotropic medication for people with learning disabilities who have psychological problems – help or hindrance?. British Journal of Learning Disabilities 29, 26–33.
Psychiatric diagnosis and the use of psychotropic medication for people with learning disabilities who have psychological problems - help or hindrance?
- Stenfert Kroese
Family‐centred service: a conceptual framework and research review
- Rosenbaum P.