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The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

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Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

Perspectives on assistive technology among older Norwegian adults receiving community health services

HALVORSRUD, Liv
HOLTHE, Torhild
KARTERUD, Dag
THORSTENSEN, Erik
LUND, Anne
2021

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Introduction: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment.

 

Methods: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon.

 

Results: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic med- ical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care.

 

Conclusions: This study reveals that older adults’ perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical per- spectives on AT implementation, is required for this group.

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

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Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.


Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.


Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.


Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach

THALEN, Marloes
VAN OORSOUW, Wietske M W J
VOLKERS, Karin M
TAMINIAU, Elsbeth F
EMBREGTS, Petri J C M
2021

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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Does the purpose matter? A comparison of everyday information and communication technologies between eHealth use and general use as perceived by older adults with cognitive impairment

JAKOBSSON, Elin
NYGÅRD, Louise
KOTTORP, Anders
OLSSON, Cecilia Bråkenhielm
MALINOWSKY, Camilla
2020

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Background and objective

Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use.

 

Methods

This cross-sectional study includes 32 participants (65–85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher’s exact tests. The significance level was set to p < .05.

 

Results

The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use.

 

Conclusions

In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.

The impact of special education resources and the general and the special education teacher’s competence on pupil mathematical achievement gain in inclusive classrooms

OPITZ, Elisabeth Moser
SCHNEPEL, Susanne
KRÄHENMANN, Helena
JANDL, Sarah
FELDER, Franziska
DESSEMONTET, Rachel Sermier
2020

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Research in inclusive settings is complicated by the nested relationships between the general education teacher (GET), the special education teacher (SET) and pupils. In this study, the impact of SET resource and selected variables of teacher competence (professional mathematical knowledge SET, attitude towards inclusion GET, classroom management GET) on the mathematical achievement gain of typically developing pupils (TYP) and pupils with intellectual disability (ID) was examined. Mathematical achievement was tested at the beginning of the school year (t1) and the end (t2) in 34 inclusive classrooms (sample ID: n = 42; sample TYP n = 525). IQ and gender – and the average mathematical achievement at class level in the sample TYP – were included as control variables. For pupils with ID, hierarchical regression modelling revealed that the mathematical knowledge at t1 explained most of the variance in mathematical achievement gain. For the group TYP, the results of a multi-level analysis showed that mathematical knowledge at t1, IQ and the average mathematical achievement at class level all had a positive effect on mathematical achievement gain. The more hours a SET was present in the classroom, the more the mathematical achievement of the group TYP increased. The other teacher competence variables had no apparent impact.

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

DAWES, Kate
CARLINO, Ashley
VAN DER BERG, Maayken
KILLINGTON, Maggie
May 2020

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Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.

 

Research design: Qualitative exploratory study using a phenomenological approach.

 

Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.

 

Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.

 

Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

TEKOLA, Bethelem
et al
May 2019

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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).

 

Autism 2020, Vol. 24(1) 51–63

https://doi.org/10.1177/1362361319848532

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

HAKOBYAN, Liana
NIEBOER, Anna P
FINKEN߆GEL, Harry
CRAMM, Jane M
2019

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Person-centered care (PCC) delivery and co-creation of care (establishing productive patient-professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person-centered care (PCC) and co-creation of care as well. This study aims to identify the relationship between PCC, co-creation of care and outcomes among informal caregivers of PWID. A cross-sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other

family member). All PWID were living in residential homes of a long-term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty-one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co-creation of care were positively related to informal caregivers’ satisfaction with care and their own well-being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well-being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co-creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well-being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co-creation of care matter for satisfaction with care and the well-being of informal caregivers of PWID.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

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Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities

HELLZEN, Ove
HAUGENES, Marit
ØSTBY, May
2018

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Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation.

 

Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabil- ities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used.

 

Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”.

 

Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

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