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Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are one of the most disadvantaged and marginalised groups in contemporary Australian society and until relatively recently, the history of intellectual disability in Australia has been neglected. Methods: Using semi-structured, life story oral history interviews, the life stories of three people with intellectual disabilities were analysed and the importance of intellectual disability in Australia as a subject for further historical analysis highlighted. Results: In this article it has been argued that embedded in the historical detail of these life stories, we can ascertain some of the key structural patterns that have shaped the experiences and forged the identities of people with intellectual disabilities in Australia. Conclusion: By analysing and comparing the narrative structures and dominant themes in life stories of individuals with intellectual disability, this article demonstrates something of the changing and immensely varied experience of people with intellectual disabilities in Australia over the last 50 years. [ABSTRACT FROM AUTHOR]

While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and 17 people with intellectual disabilities. Four distinct advantages of shadowing are presented: it is flexible, gives unique insight in daily life experiences, can aid in giving "voice" to people with intellectual disabilities, and can aid in the pursuit of inclusive research. Three challenges of shadowing research were also identified, relating to ethical approval, privacy and role confusion. Shadowing is a promising method for intellectual disability research, as it allows researchers to garner data virtually inaccessible with other methods. It is particularly useful for research questions about everyday life and interpersonal relationships. [ABSTRACT FROM AUTHOR]

This study reports the findings from a Dutch study, exploring care workers' knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Three themes were derived from the data: (1) The clients' online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place. Care workers have limited knowledge of clients' online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists. [ABSTRACT FROM AUTHOR]

Autistic people commonly report differing sensory experiences. This research aimed to find out about sensory issues and the sensory environments of autistic adults who did and did not have intellectual disabilities. Online questionnaires were designed to identify sensory needs. The survey was completed by 138 autistic adults who self-reported and 58 informants reporting about autistic adults who had intellectual disabilities. Autistic adults self-reported high numbers of sensory needs compared with informant reports of the needs of autistic adults who had intellectual disabilities. It is possible that informants under-reported issues for autistic adults with intellectual disabilities. Some sensory needs are harder to observe and people with intellectual disabilities may find it difficult to communicate such needs. The authors propose that better methods of supporting communication of "harder to observe" sensory needs should be developed. Further research is needed. [ABSTRACT FROM AUTHOR]

Identifying the students with intellectual disabilities and deciding the required services would not be sufficient without parental involvement. The purpose of this study was to understand the perspectives of the parents of students with intellectual disabilities about the Guidance and Research Centres (GRCs) and reveal the parents' experiences at the GRCs. In this qualitative study, unstructured interviews were conducted. Twenty-one parents who had a child with an intellectual disability were asked about their experiences during their visit to the GRCs. Content analysis with an inductive approach was used to analyse the data. Most of the parents reported problems regarding educational evaluation, and communication and collaboration. The participants provided their suggestions about evaluation procedures, professionalism, and institutional practices. The problems at the GRCs must be considered by educators and other stakeholders to better provide educational evaluation, support services, and guidance to the students and their parents. [ABSTRACT FROM AUTHOR]

Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk. The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support. [ABSTRACT FROM AUTHOR]

Body experience is an important facet of psychosocial functioning and health. However, to date no test exists to measure body experience in adults with mild intellectual disability and borderline intellectual functioning (MID-BIF). We therefore adapted the Body Experience Questionnaire (BEQ) to this group, resulting in the BEQ-mb, and evaluated its usability, comprehensibility, and reliability. The BEQ-mb was developed in five stages: concept development, focus group, verbal reports, pilot testing, and evaluation. The BEQ-mb is applicable in, and comprehensible by, adults with MID-BIF. Internal consistency is good for the total scale and the body awareness and body satisfaction subscales, but low for the body attitude subscale. Test–retest reliability is excellent for the total scale and the subscales. The BEQ-mb unlocks new opportunities for clinical examination and research on body experience. Future research is needed to investigate its structural validity. [ABSTRACT FROM AUTHOR]

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

Background: This article aims to present the results of a study on the facilitators and obstacles to community participation in inclusive settings for people with intellectual disabilities (ID) in Québec City (Canada), as perceived by adults with ID and key individuals involved in their daily lives. Method: Semi-structured interviews were conducted, followed by an inductive thematic analysis process. Results: Twenty participants shared their perspectives on the factors that influence community participation of adults with ID in inclusive settings. Overall, they revolved around physical and financial accessibility, openness of the members of the groups attended, as well as the adaptations and support provided to promote the people's active participation. Conclusions: Offering social support and interventions that truly help adults with ID create meaningful relationships is crucial. Training community members is also fundamental to creating environments where people with ID can feel that they belong. [ABSTRACT FROM AUTHOR]

Psychomotor therapy (PMT) is often applied in Dutch clinical practice to address aggressive behaviour in individuals with mild intellectual disabilities or borderline intellectual functioning. However, the literature on clients' experiences is lacking. An interpretative phenomenological analysis was used to analyse the semi-structured interviews of seven participants (19–60 years; four male, three female) who completed PMT targeting anger regulation problems. According to the participants, becoming aware of increasing tension and/or learning to downregulate the tension were the main goals of PMT. They emphasised both the possibility to learn by doing and the therapeutic alliance as essential to create a safe context, where participants can experiment with alternative behaviour. After completing PMT, participants perceived fewer aggressive outbursts and an increased self-esteem. Participants in our sample experienced PMT as being helpful in targeting anger regulation problems and aggressive behaviour. The experiential nature of the program was perceived as a valuable aspect of PMT. [ABSTRACT FROM AUTHOR]

Background: Paperwork can transform organisational aims into action in group homes, but it can also be problematic for staff. The aim of this study was to explore frontline staff perspectives on paperwork in group homes for people with intellectual disability. Methods: Constructivist grounded theory methodology guided the study. Data were collected from 29 participants through semi-structured interviews, participant observations and journaling. Coding and sorting methods were used to analyse participants’ perspectives. Results: Staff have nuanced paperwork perspectives. They described and evaluated paperwork in terms of its value and fit with resident-focused practice. They identified gaps in paperwork and reimagined its design and use. Conclusions: Frontline staffs’ reflection suggests some paperwork hinders them from supporting residents well. This suggests organisations could consult better with staff to design paperwork that has a goodness of fit to their practice. Further research could explore how staff manage the limiting characteristics of paperwork. [ABSTRACT FROM AUTHOR]

The feasibility and acceptability was explored of the newly-constructed Attachment Strengths and Needs Interview for parents of children with severe or profound intellectual disabilities. A partially mixed methods approach (with focus on the quantitative data) was used to clarify parents' and professionals' viewpoints regarding the acceptability of the interview through websurvey-ratings. Parents generally felt appreciated during or after the interview, were motivated to work on the proposed goals and felt the interview covered their actual needs, but were, however, more neutral on the aspects of reflection and learning. Professionals indicated that the interview gathered sufficient information on most elements of interest at the start of an intervention trajectory, but generally missed information on the origins of parents' questions and the families' expectations towards taking part in an intervention. The current study showed preliminary support for the feasibility and acceptability of the Attachment Strengths and Needs Interview, as part of a broader intake procedure, to inform attachment-focused interventions for parents of children with disabilities by identifying their strengths and needs. [ABSTRACT FROM AUTHOR]

With the introduction of the National Disability Insurance Scheme (NDIS), creation and implementation of participants' plans are becoming a research focus. As many families facilitate the implementation of plans, it is important to understand the enablers and barriers to this process. This study investigated the experiences of 20 family groups with adult participants with intellectual disability as they implemented their NDIS plans. Data were collected through semi-structured interviews and analysed qualitatively. Results are reported in themes of increased opportunities, navigating bureaucracy, building partnerships and impact on families. Implementing NDIS plans was complex. Funding was appreciated and enabled some adults to work towards their goals. Bureaucracy and the availability of suitable services and support workers were seen to be barriers. Further investigation about how families balance multiple roles as they work with their adult during planning and implementation is needed. Evaluations of the NDIS should include family experiences. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to examine if integrative dance classes have the potential to improve the postural stability in individuals with intellectual disability. Methods: A quasi-experimental, pretest-posttest research design was used to assess changes in postural stability of 16 individuals with intellectual disability. Postural stability was evaluated in bilateral stance with eyes open and eyes closed using a Wii Balance Board and variables of stability were assessed utilising centre of pressure measurements. Results and discussion: Between-group significance from pre- to post was found in both conditions with the experimental group demonstrating significant improvements as compared to the control. These data indicate preliminary evidence of improved postural stability following an intervention of integrative contemporary dance. [ABSTRACT FROM AUTHOR]

Background: The use of eHealth in support for daily functioning of service users with intellectual disability (ID) is a rather unexplored domain. Therefore, the current study identified the a) level of familiarity, b) advantages/disadvantages, and c) facilitating/impeding factors for the use of eHealth in support for daily functioning of people with ID according to service users, relatives, and professionals. Method: Four focus groups and one semi-structured qualitative interview were conducted. Results: Participants were familiar with numerous eHealth applications. Benefits were related to service users (e.g., increased independency) and relatives/professionals (e.g., providing more efficient support). Adequate informing and involving all stakeholders and centrally positioning the needs and possibilities of service users were reported as important facilitators. Contrary, impeding factors were malfunctioning Internet, expenses of eHealth, and lack of proper IT-support. Conclusions: The results provide imperative information for future eHealth implementations and to direct its use more specifically to people with ID. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic significantly affected families who have children with intellectual disabilities (ID). Our aim was to explore the pandemic's impact on Dutch migrant families who have children with ID, by interviewing these families' support workers. A descriptive qualitative methodology was employed, which resulted in semi-structured telephone interviews with 34 support workers. We selected interview transcripts that pertained to 27 Dutch migrant families who have children with ID and identified themes and subthemes using thematic analysis. Two main themes related to the pandemic emerged: (1) Work of support workers during the COVID-19 pandemic and (2) Impact of the COVID-19 pandemic upon migrant families who have children with ID. The present study demonstrates that support workers particularly struggled to stay in touch with migrant families who have children with ID during the COVID-19 pandemic. Therefore, support workers should tailor their support to the needs of migrant families. [ABSTRACT FROM AUTHOR]

Background: Research about the psychometric properties of the Behavioural Appraisal Scales (BAS) in people with profound intellectual and multiple disabilities (PIMD) is limited. This study evaluates invariance in factor structure, item bias and convergent validity of the BAS. Methods: Data on the BAS from two studies (n = 25; n = 52) were analysed using the oblique multiple group method. The scale structure and item ordering were compared in the two groups. Convergent validity was assessed by correlating scores on the BAS with scores on two other instruments. Results: Of all items, 16–18% correlated stronger with other subscales of the BAS than the subscale they were originally assigned to. Scale structure and order of difficulty differed between groups. Correlations between the BAS and two other instruments varied from low to excellent (r =.48–.85). Conclusions: The results support the construct validity of the BAS. Removing, reassigning and adapting items may enhance construct validity. [ABSTRACT FROM AUTHOR]

Background: Social workers play a central role in service delivery for parents with intellectual disability (ID). Within Israeli Muslim society, men with ID are likely to marry non-disabled women and create families. This study adds to scarce research on how social workers view these families, and how they might better serve their needs. Method: A thematic analysis was conducted on nineteen semi-structured interviews with social workers. Results: Family characteristics are described. Findings illustrate the complicated position of the Israeli Arab Muslim social workers in balancing patriarchal and traditional cultural values against professional values such as social justice and equality. Although personally opposed to these marriages, they feel that they are unable to act against either their professional ethics or social boundaries. Conclusions: Social workers should be trained to support their clients' transition to marriage and parenthood. Policy makers should promote support services for non-disabled wives of husbands with ID. [ABSTRACT FROM AUTHOR]

Background: Individuals with intellectual disability (ID) and autism spectrum disorder (ASD) are at increased risk of sexual abuse. However, little is known about facilitating detection and disclosure. One year after discharge from a specialised psychiatric ward, a young man with mild ID and ASD disclosed previously unknown sexual abuse. The aim of the present study was to explore clinicians' perceptions of their failure to detect abuse. Method: Interpretative phenomenological analysis was used to explore five staff members' perceptions, with data being collected through an individual, semi-structured interview. Results: Staff reported behaviours that, in retrospect, they understood as possible indicators of abuse and/or attempts by the patient to disclose. Factors contributing to non-detection included insufficient trauma sensitivity, lack of exploration, and diagnostic overshadowing. Conclusions: Symptoms of trauma should be routinely explored in individuals with ASD and ID referred for psychiatric assessment – even in the absence of known trauma or abuse. [ABSTRACT FROM AUTHOR]

Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL. Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way. The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making. [ABSTRACT FROM AUTHOR]

The role of support workers in self-advocacy groups is complex. The lack of transparency about who controls the agenda within groups is problematised by commentators but the evidence is limited about how supporters act, exercise power and are regarded by self-advocates. This study investigated the work of supporters in independent self-advocacy groups and how their work was understood by members. Grounded theory methodology was used. Semi-structured interviews were conducted with 25 members of 6 independent self-advocacy groups, in Australia and the UK, and 10 supporters. Supporters had three roles: supporting empowerment, managing operations, and leading strategic planning. They exercised power, controlling many group activities, but did so in ways that enabled groups to flourish, and scaffolded members' sense of control. Supporters shaped groups, developing and resourcing them while promoting empowerment and enabling self-advocates to perceive partnerships; regarding supporters work as complementary to their own. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability and chronic and complex support needs often require unique models of care that are intensive and expensive. How these supports can be continued within a rapidly changing policy and funding context in Australia, has not been fully determined. Method: This descriptive study utilised a retrospective electronic case-file audit design. Demographic details, chronic health conditions, medications, behaviours of concern, and overall support needs profile were mapped for 41 participants. Results: The profile is one of an ageing cohort, with high levels of chronicity and polypharmacy that requires a specialised workforce to fully meet their support needs. Conclusion: As the people with ID in this cohort age, the training needs of the current and future workforce will need to adapt as different issues become more prominent. How the national disability health and policy settings can best accommodate these support needs remains unclear. [ABSTRACT FROM AUTHOR]

Background: Research into parents' experiences of living with a family member with intellectual disability and challenging behaviour does not specifically address what parents say about themselves and their lives. This paper explores "I-statements" parents made about their day-to-day actions in life with their family member. Methods: Semi-structured interviews were conducted with 26 parents, of which 91% were mothers. "I-statements" were analysed using process analysis from systemic functional linguistics and thematic analysis. Results: "I-statements" showed that parents enacted a range of complex and sometimes extreme activities across a variety of life domains. Parents spoke about: managing relationships with services; educating themselves and others; seeking support; resisting poor service delivery; assisting others; and making both small and significant changes. Conclusion: The paper provided insights into the complex lives of these families and offered observations on the implications of the potential misalignment between the supports the data suggests are needed and those that, in reality, are available to them. [ABSTRACT FROM AUTHOR]

Background: A faith-based (pseudonym, Adam's House - AH) and a non-faith-based care service (pseudonym, Greenleaves - GL) were explored to find out if and how spiritual support was provided for people with intellectual and developmental disabilities (IDDs). Method: Six months were spent volunteering within each service and a mixed-methods approach was utilised including applied and ethnographic methods to explore and describe if and how spirituality was embedded within the two services. Results: Themes found included community of value; homely functional care; and barriers to spiritual care. GL staff tended to provide what we termed "religious spiritual care" while AH staff administered both "religious" and "non-religious" spiritual-based support. This difference may be related to the type of training found only at AH which included spiritual dimensions. Conclusion: Services could benefit from acknowledging the importance and significance of spiritual care training and education for effective and varied spiritual care for people with IDD who desire such support. [ABSTRACT FROM AUTHOR]

Background: Information regarding how the Special Olympics programs affect volunteers' self-esteem and attitudes towards individuals with intellectual disability (ID) is limited. We conducted a quasi-experimental study to address this gap. Method: The intervention group participants (n = 120) were Chinese volunteers for the Special Olympics Eunice Kennedy Shriver University Day. They were asked to attend a pre-service training program and provide a half-day service. Results were compared with a control group (n = 123). Results: Our findings showed that the volunteers' self-esteem and attitudes immediately improved after intervention. In addition, change in participants' self-esteem contributed to their positive attitude change. Conclusions: The Special Olympics may provide an avenue for promoting the volunteers' self-esteem and attitudes regarding inclusion towards individuals with ID. Future research should include follow-up tests to examine the lasting effects of intervention. [ABSTRACT FROM AUTHOR]

Background: Australian publicly funded mental health services play a significant role in the assessment and management of mental illness for people with intellectual disability. However, there is limited knowledge on their preparedness to meet the needs of this population. Method: Public mental health professionals (n=566) completed an online survey that explored their attitudes, confidence, and training needs in the area of intellectual disability mental health. Descriptive analyses were undertaken. Results: Participants agreed that people with intellectual disability have the right to receive good mental health care, and have the same access to their service. They viewed treating them as part of their role, but given the resources available it was not possible to provide comprehensive care. Participants reported low confidence in key clinical areas and insufficient training. Conclusions: A comprehensive workforce development strategy is required to facilitate the engagement and capacity of public mental health professionals in this area. [ABSTRACT FROM AUTHOR]

Background: Researchers contend that religious and spiritual communities may provide a conduit to friendship for people with IDD. This research explored the interface between social networks and spirituality for individuals with IDD living in either a faith or non-faith based service. Method: A mixed-methods approach was used including semi-structured interviews, the Social Network Guide and the Spiritual Belief Inventory-15R with individuals with IDD (or staff members who provided their opinions of what individuals who lacked capacity to consent would say if they had capacity). These findings were corroborated with extensive field notes generated from participant observation. Results: The faith-based group had a higher network size (m = 78) compared to the non-faith based group (m = 44). Those with larger social networks also reported higher SBI-15R scores. Conclusion: Findings highlight the possible role of social, religious and spiritual activities for expanding individuals’ social networks. [ABSTRACT FROM AUTHOR]

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst. Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment. Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist. Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities. Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene) [ABSTRACT FROM AUTHOR]

Background In Sweden, a process involving the deinstitutionalisation of services and the establishment of community-based settings for people with intellectual disability has meant changes in meal arrangements. In the present study, we focus on the social arrangements of meals in community-based settings. Method Participant observations were used to study the meals as social events for 32 participants, 9 of whom lived in supported living and 23 in group homes. Results Breakfast and dinner were often eaten alone, while lunch at the daily activity centre and the food eaten between meals (snacks) were mostly shared with other people. Meals for participants in supported living were seldom social, and meals for participants in the group homes often hierarchical. Conclusion The participants were often limited in choosing their company at meals, which typically consisted of other people with intellectual disability and staff. If they made such choices, they were dependent upon staff support to realise them. [ABSTRACT FROM AUTHOR]

Background Little is known about child disability and dynamic aspects of poverty. Method Analysis of data collected over a 12-month period for families (a) supporting a child with intellectual disability ( n = 370), (b) supporting a child with other disability ( n = 1,418), and (c) supporting a child with no disability ( n = 7,215). Results When compared to families not supporting a child with disability, families supporting a child with intellectual disability were (a) more likely to be poor, (b) more likely to become poor, (c) less likely to escape from being poor. Half of poverty transitions were associated with identifiable potential trigger events. Conclusions There were few differences between families supporting or not supporting a child with disability with regard to either levels of exposure to potential trigger events or to the strength of the association between exposure and poverty transitions. [ABSTRACT FROM AUTHOR]

Background Often communication training has been directed at the communication practices of staff members working with people with multiple learning disabilities. To date, the thinking habits of staff members, which also influence interactions, have not been addressed. We identified the issues staff members perceived as important for their development as communication partners after participating in a communication training program. Method Six key staff members participated in semistructured interviews that explored the insights they had gained during participation in the Finnish communication training program OIVA. Results Participating staff members identified issues relating to the communication practices and thinking habits they had acquired during the training. Both communication practices and thinking habits were important for the staff members' development as communication partners. Conclusions The findings of this study suggest that it is important to give staff members the opportunity to learn new practices and to explore the thinking that underpins the actions they perform during communication training. [ABSTRACT FROM AUTHOR]

BackgroundThis phenomenological study explores the perceptions, hopes, and dreams of relationships and parenting of women with a genetic intellectual disability. MethodFive women with both 22q11.2 deletion syndrome (22q11DS) and intellectual disability took part in semistructured interviews. Their subjective interpretations were analysed using interpretative phenomenological analysis. ResultsFour main themes emerged: (a) challenges and acceptance of having 22q11DS, (b) desire for social acceptance and normality, (c) welcoming of emotional and practical support, and (d) individuation. The themes describe the discordance between the challenges and acceptance of having a genetic disorder, the need to be “normal,” the importance and appreciation of social support, and the women’s aspirations for independence. ConclusionsYoung women with 22q11DS approach their adulthood with a sense of optimism and personal competence yet recognise their unique challenges. Parental support is valued despite the need for independence. The findings provide insight into the lived experience of women with 22q11DS. [ABSTRACT FROM PUBLISHER]

Background: The aim of this study was to explore how educated Bedouin women perceive the causes and meaning of their marriages to Bedouin men with intellectual disability (ID). Methods: In-depth semi-structured ethnographic interviews were utilised in data collection from 15 educated Bedouin women who were married to Bedouin men with ID. The interviews were recorded, transcribed verbatim, and then translated into English. Themes were generated using thematic analysis. Results: Six main reasons are presented: the need for independence; age; family and societal pressures; receiving social protection of the husband or man; destiny; and the desire for children. Conclusions: The research findings offer an intra-cultural insight into the reasons for marriages from the point of view of the women. These reasons have a cultural and community basis. These results provide a valuable conceptual understanding of the phenomenon of the marriage of educated Bedouin women to Bedouin men with an ID. [ABSTRACT FROM AUTHOR]

Background In this study we evaluated the long-term impact of a project in which families were individually supported in the realisation of personal future plans in the city of Almere, the Netherlands (2004–2006). Method We used fourth-generation evaluation principles. Data collection consisted of semistructured interviews with family members and adults with intellectual disability as well as focus groups with both groups. Photovoice was used as a strategy to engage 4 young adults with Down syndrome in the research. The results of the photovoice were presented to the community at a town hall meeting. The data were coded and common themes were created. Results The majority of the participants evaluated the project as having a positive impact on their quality of life. Conclusions The results of the study support individual future planning for young adults with intellectual disability and their families in the transition to adulthood. [ABSTRACT FROM AUTHOR]

BackgroundMeasures of quality of life (QOL) must be appropriate for specific groups but comparable across groups. In this paper, we compared how QOL is measured in research with older adults with and without an intellectual disability (ID). MethodsMeasures used in 2 population studies of older adults with and without ID (Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing [IDS-TILDA], and The Irish Longitudinal Study on Ageing [TILDA]) were examined. Framed by Schalock’s Quality of Life Framework, conceptual content of measures of emotional wellbeing and self-determination were compared. The acceptability and concurrent validity of IDS-TILDA measures were evaluated. ResultsThe same measures of emotional wellbeing were identified in both surveys. However, measures of self-determination captured different aspects of the construct. Concurrent validity between self-determination and emotional wellbeing measures in IDS-TILDA was weak. ConclusionsResearch with adults with and without ID is limited by the nature of current inclusive QOL measures: Instruments are required that have adequate conceptual coverage and are comparable across groups but appropriate and feasible to use. [ABSTRACT FROM PUBLISHER]

BackgroundThe present study examined how parents assess the significance of friendship for quality of life in adolescents with mild intellectual disability. MethodThe study was based on qualitative semistructured interviews with 6 mothers. A thematic structural analysis was used to identify the themes. ResultsThe mothers compared their children with typically developing peers to examine to what extent their children’s relationships were working optimally. Social support and a better understanding of friendship were found to be essential conditions for establishing friendship. Development of independence and a sense of belonging with others were factors that were reported to be highly important in determining quality of life outcomes for their adolescent children. ConclusionsFrom a parental view, friendship in adolescents with mild intellectual disability seems to be highly important for their quality of life in the long term. However, well-functioning and lasting friendship for this group of people appears to require substantially more effort for their parents than for typically developing offspring. [ABSTRACT FROM PUBLISHER]

BackgroundMany people with intellectual disability have limited sexual knowledge. Several assessment tools have been developed to assess the sexual knowledge of people with intellectual disability. This paper examines how clinicians’ are using these tools. MethodThis research uses a constructivist grounded theory approach. Semistructured qualitative interviews were conducted with clinicians who use sexual knowledge assessment tools. Findings and DiscussionAssessment of sexual knowledge is not routine in disability service provision. Sexual knowledge is typically only assessed when there has been an incident of problematic sexualised behaviour. This reactive approach perpetuates a pathological sexual health discourse. ConclusionsClinicians using assessment tools said that they need the tools to support work they do in relation to sexual health of people with intellectual disability. However, they also reported that the tools have gaps and are not fully meeting their needs or the needs of people with intellectual disability. [ABSTRACT FROM PUBLISHER]

BackgroundRespiratory disease is common in people with intellectual disability (ID). The inhaled route is preferred for medication administration in treating respiratory diseases, including asthma. People with ID often need assistance with taking medicines due to cognitive, physical, and sensory impairments; in supported accommodation this assistance is provided by direct support professionals (DSPs). MethodA qualitative study design was used to explore DSPs’ experiences with asthma medication management. Data were collected via in-depth, semistructured, face-to-face or telephone interviews. ResultsKey findings included the complex balance of duties undertaken by DSPs, and a lack of consistency in asthma management processes across sites. ConclusionsThis exploratory research suggests that DSPs are involved in asthma management and required to use clinical judgement, but are not provided with education and tools to manage asthma in, and foster correct inhaler use by, their clients. This highlights the need for tailored guidelines that integrate with the principles of the National Disability Insurance Scheme. [ABSTRACT FROM PUBLISHER]

BackgroundThe lifespan of women with intellectual disability (ID) has been steadily increasing, bringing new and unique challenges to these individuals and those who support them. Understanding these issues will help to improve support services for this population. MethodsUsing inclusive research methods, 15 older women with ID were interviewed about their wellbeing and their views on growing older. ResultsInterview data were analysed using the grounded theory approach. The core phenomenon identified through data analysis was “changes in life.” ConclusionThe women reported a growing loss of independence as well as changes in their health and activities. Analyses revealed factors important for wellbeing as well as different coping strategies used by the women to deal with the age-related changes in their lives. [ABSTRACT FROM PUBLISHER]

BackgroundDespite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. MethodsIn-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. FindingsThrough their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. ConclusionsThis study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society. [ABSTRACT FROM PUBLISHER]

Background Factors that enhance the social exclusion and limit the social inclusion of adults with intellectual disability undermine their health and wellbeing. Thus it is important to reduce the impact of such factors. This may be achieved by deepening the understanding of the enablers and barriers to social inclusion, which were explored in this study using a multidimensional framework (O'Brien, J. (1989). What's worth working for? Leadership for better quality human services. Lithonia, GA: Responsive Systems Associates. Retrieved from http://thechp.syr.edu/wp-content/uploads/2013/02/whatsw.pdf) and the reports of young adults with intellectual disability, and family members, who were involved in an inclusive community leisure program. Method Interview data from 4 young adults and a parent and a sister were (1) thematically analysed, and (2) the resulting thematic structure was further analysed for enablers and barriers to social inclusion using the multidimensional framework. General observations conducted by the researcher on most participants, which were member checked, were used to validate the information gathered in the interviews. Results Seven primary themes emerged from the initial thematic analysis. Further analyses of the initial thematic structure using the multidimensional framework revealed 24 enablers and 10 barriers to the social inclusion of young adults. Conclusion Social inclusion of the young adults was influenced by enablers and barriers appearing across multiple dimensions. Implications for best service practice with young adults and their families to enable movement toward social inclusion are discussed. [ABSTRACT FROM AUTHOR]

Background There is a lack of evidence in Canada surrounding the costs to parents and society to raise a child with intellectual disability. Knowledge of these costs is necessary to ensure appropriate governmental support to families and to assess the financial impact of new diagnostic tests and treatments. Method We adapted 2 paper-based cost diaries into an online retrospective survey and evaluated it using a small pilot study of individuals with Down syndrome. Results Parents completed the survey with apparent ease, giving answers requiring little clarification; they used comment fields to add data that elaborated on both financial and emotional costs. Costs appeared concordant with those reported in other countries. Conclusion The survey successfully documents care time required, impact on employment, and other expenses. Minor modifications were made as a result of this pilot, and the survey is now available for wider use. [ABSTRACT FROM AUTHOR]

Background A major milestone in the transition to adulthood is leaving the parental home, known as launching. This study explored the experiences of 2 young people with intellectual disability during launching into individual supported living, including the impact of a Western Australian (WA) funding approach. Method Two case studies employed interviews, documentation review, and observations. Three staff members of the WA Disability Services Commission participated. Results The transition period was stressful for parents. Gaining independence occurred gradually for the young adults and was influenced by parent involvement. All parents desired more formal support. Social isolation was a major issue for the young adults. Conclusions Families need long-term assistance to prepare for launching, and parents may need reassurance as they withdraw from their caring role. More consideration is needed into how young people with intellectual disability may be best supported to develop friendships. [ABSTRACT FROM AUTHOR]

Background This paper explores how group home staff in Victoria, Australia, responded to residents with an intellectual disability (ID) as residents developed age-related health conditions. Method The analysis was based on a longitudinal study that followed 17 ageing group home residents over a 3-year period. Eighty-three interviews were conducted with 30 group home staff in 17 group homes. Dimensional analysis, a variant of grounded theory, guided data collection and analysis. Results Findings revealed that the organisations all had systems in place to address health issues. However, the results also suggest an inability of staff to differentiate between significant health conditions and normal age-related changes, thus contributing to delays in care for serious medical conditions. Conclusions Lack of knowledge about normal ageing and an absence of organisational policies influence timeliness of diagnosis and treatment for people with ID. Group home staff could be more effective advocates for older residents, leading to improvements in health outcomes, if they had basic knowledge about normal ageing and symptoms of common age-related illnesses and if group home agencies provided clearer guidance to their staff. The study has implications for staff education and organisational policy development for group homes. [ABSTRACT FROM AUTHOR]

Background Many standardised balance measures are unsuitable for people who are unable to comprehend test requirements. We report on the development, administration, interrater reliability, and concurrent validity of a video-based balance measure for people with intellectual disability called the Balance Scale for Persons with Intellectual Disabilities. Method Video recordings of 25 people performing 7 common motor tasks, identified from stakeholder consultation, were made, and rated using standardised scoring criteria. Concurrent validity, assessed against the Tinetti Gait and Balance Instrument and the modified Gait Abnormality Rating Scale (GARS-M), and interrater reliability of the scale was evaluated with 19 physiotherapists. Results Scores suggested no ceiling or floor effects. Excellent interrater reliability (ICC = .9) was demonstrated. Concurrent validity was good against the Tinetti (ρ = .98) and the GARS-M (ρ -.87). Issues around lighting for video-recording a lack of steps or stairs in the home setting were encountered. Conclusion The new measure may be useful in trials assessing the effectiveness of interventions aimed at improving the balance capabilities of people with intellectual disability. [ABSTRACT FROM AUTHOR]

Background Throughout history women with intellectual disability have been commonly subjected to involuntary sterilisation. Involuntary sterilisation involves debate about fundamental human rights, such as the right to maintain fertility and to have children. In this paper, the experiences of a small group of Icelandic women with intellectual disability with regard to the issue of sterilisation are discussed. Method The research was based on 6 life stories of women with intellectual disability born between 1946 and 1965. Additional participants included 3 siblings of these women. Results The findings of the research indicate that the sterilisation procedures resulted in a deep emotional impact on all of the women who participated in this research. The women expressed a range of emotions, such as sadness, anger, and grief, especially those who had been sterilised without their knowledge. Conclusion Despite the negative consequences experienced by the women as a result of sterilisation, the women did not portray themselves as victims but rather as survivors. The findings reiterate the importance of respecting the women's sexuality and right to self-determination. [ABSTRACT FROM AUTHOR]

Background Sexuality and relationship education for adults with an intellectual disability has failed to include them in roles other than as learners. This paper reports findings from a study of the experiences of peer educators with an intellectual disability who co-facilitated a respectful relationships education program. Method Qualitative data were collected about the experiences of 16 peer educators through in-depth interviews and observations of their work in delivering the program. These data were thematically analysed. Findings Peer educators reported that peer education gave them a sense of empowerment, positioned them as credible sources of information about relationships, enabled them to help others, and gave them an opportunity to learn new knowledge about respectful relationships, community resources and supports, and new skills. Conclusions This study presents an alternative approach to relationship education that involves people with an intellectual disability as peer educators and that benefits these people. [ABSTRACT FROM AUTHOR]

Background Sexual health remains one of the most overlooked areas of life for people with intellectual disability. In recent years there has been an increasing expectation that this issue will be addressed by disability service providers. In this paper we examine the barriers to sexual health provision of people with intellectual disability as experienced by disability service providers and clinicians. Method This research uses a constructionist grounded theory approach. It was conducted in 2 phases using semistructured qualitative interviews to collect data from disability service managers and clinicians working with people with intellectual disability in New South Wales, Australia. Findings and Discussion Key themes within the interviews -- including funding shortages and a lack of policy guidelines -- were identified as significant administrative barriers to sexual health provision. Myths about the sexual health of people with intellectual disability, family attitudes, and lack of staff training were also identified as barriers. [ABSTRACT FROM AUTHOR]