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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.

Greek Secondary Education Teachers’ Views on Inclusive Education of People with Intellectual Disabilities

GIAVRIMIS, Panagiotis
2021

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Purpose: This paper aimed to investigate Greek secondary education teachers’ views on people with intellectual disabilities, their inclusion in the typical educational system, and the dimensions of social and educational exclusion that may be associated with it.

 

Method: The qualitative research design involved semi-structured interviews with 18 Greek secondary school teachers.

 

Results: It was revealed that people with intellectual disabilities face educational exclusion for two reasons. The first is because the structure of the education system itself cannot meet their increased needs, and the second is due to the fact that a percentage of secondary education teachers feel negative about their inclusion in the typical education system.

 

Conclusion and Implications: The implemented policy for the co-education of people with intellectual disabilities in Greece is not effective due to endogenous difficulties. It is necessary to orient the educational policy towards an education for all without "filters" of social exclusions.

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.

Preliminary Findings From a Nationwide, Multicenter Mental Health Service for Adults and Older Adolescents With Autism Spectrum Disorder and ID

HELVERSCHOU, Sissel Berge
BAKKEN, Trine Lise
BERGE, Heidi
BJØRGEN, Tale Gjertine
BOTHEIM, Henrik
HELLERUD, Jane Askeland
HELSET, Ingunn
ODDBJØRN, Hove
JOHANSEN, Per Anders
KILDAHL, Arvid Nikolai
LUDVIGSEN, Linn Beate
NYGAARD, Sissel
RYSSTAD, Anne
WIGAARD, Elisabeth
HOWLIN, Patricia
2020

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Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specic aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems.


Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC).


Results: Patients showed signicant (p < .001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no signicant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed signicant (p < .01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3.


Discussion: The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area.

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.

A person living with dementia learning to navigate an iPad: a case study

INGEBRAND, Elias
SAMUELSSON, Christina
HYDÉN, Lars-Christer
2020

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Purpose

This study challenges the notion that people living with dementia are unable to achieve novel learning without focussed intervention techniques. The purpose of this study is to explore how a woman living with dementia (Alzheimer’s disease) learns to use a tablet computer with support from communicative partners.

 

Method

The study is based on video recordings and the theoretical framework of learning as changing participation in joint activities. Quantitative and qualitative focus is on changes in the interactional organization over the course of six weeks in the activity of using an augmentative and alternative communication application.

 

Results

Over time, the participant living with dementia, relies less on the expertise and explicit instructions of her communicative partners when navigating the application, and more on the immediate feedback provided by the tablet computer.

 

Conclusions

The findings suggest that novel learning still is possible for people living with dementia, even without the implementation of focussed interventions. This study further emphasizes the procedural nature of learning for people living with dementia as the woman’s embodied actions were carried out in an increasingly more direct fashion.

Segregated education as a challenge to inclusive processes: a total population study of Swedish teachers’ views on education for pupils with intellectual disability

GÖRANSSON, Kerstin
BENGTSSON, Karin
HANSSON, Susanne
KLANG, Nina
LINDQVIST, Gunilla
NILHOLM, Claes
2020

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Many pupils with disabilities receive schooling in segregated contexts, such as special classes or special schools. Furthermore, the percentage of pupils educated in segregated settings has increased in many European countries. Studies suggest that there is high commitment to the general ideology of inclusive education among teachers in ‘regular’ education in many countries. This survey study investigates the views of teachers in segregated types of school about education. A questionnaire was sent out, in 2016, to all Swedish teachers (N = 2871, response rate 57.7%) working full time in special classes for pupils with intellectual disability (ID). On a general level results show that there is a strong commitment to preserving a segregated school setting for pupils with ID, a limited desire to cooperate with colleagues from ‘regular schools’ and a view that schooling and teaching are not quite compatible with the idea of inclusive education. The results highlight the importance of investigating processes of resistance within segregated schools to the development of inclusive schools and education systems. We argue that, while research and debate about inclusive education are important, both are insufficient without analyses of existing types of segregated schooling.

Changes in Living Conditions of People with ID: A Follow-Up after 16 Years

CARLSSON, Õie Umb
2020

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Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with ID born 1959–1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances, and social life.


Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with ID in a 16-year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups.


Methods: Information on the living conditions of people with ID for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with ID including housing, occupation, nances, recreational and cultural activ-
ities, family and social relations, society participation, and personal safety.


Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with ID. However, no differences related to gender and level of functional limitations were identied within the study group.


Discussion: Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with ID in community-based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with ID share welfare benefits over time.

Does the criminal justice system treat disabled people fairly? Inclusive justice: a system designed for all

EQUALITY AND HUMAN RIGHTS COMMISSION
April 2020

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The UK Equality and Human Rights Commission launched an inquiry to understand the experiences of disabled defendants and accused people in the criminal justice system. They looked at:

  • whether their needs are properly identified
  • the types of adjustments being made to accomodate their needs, and
  • whether they can fully participate in court processes and understand the charges they face.

Based on their findings, recommendations are made to UK Governments.

 

The use of video hearings was rapidly expanded in response to the coronavirus pandemic. In April 2020, interim findings from this inquiry were released to help mitigate the risks that this technology poses to disabled people in the criminal justice system.

Developing a Logic Model for the Triple-C Intervention: A Practice-Derived Intervention to Support People with Intellectual Disability and Challenging Behavior

TOURNIER, Tess
HENDRIKS, Alexander H C
JAHODA, Andrew
HASTINGS, Richard P
EMBREGTS, Petri J C M
2020

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Partly due to a lack of evidence-based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be “good practice”—to develop evidence based on practical knowledge. This study describes the Dutch practice-based intervention Triple-C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice-based nature of Triple-C means that many of the professionals’ actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple-C professionals and to develop an understanding of the mechanisms of change for Triple-C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple-C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple-C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence-based interventions such as Positive Behavioral Support and Active Support are described. Dening the underlying logic of a practice-based intervention like Triple-C is an important first step toward producing an evidence base for interventions developed from clinical practice.

Experiences of teaching sexual and reproductive health to students with intellectual disabilities

NELSON, Becky
PETTERSSON, Karen Odberg
EMMELIN, Maria
2020

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There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers’ experience is described through their efforts to ‘accept the challenge to coach special-needs students into adulthood’. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students’ shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students’ particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health.

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.

Content and Quality of Motor Initiatives in the Support of People With Profound Intellectual and Multiple Disabilities

VAN ALPHEN, Helena J M
WANINGE, Aly
MINNAERT, Alexander E M G
VAN DER PUTTEN, Annette A J
2019

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Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and to what level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of the motor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidence for their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including power-assisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small-scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven. Science and practice should cooperate to develop an evidence-based understanding to ensure more evidence-based support for the motor activation of people with PIMD in the future.

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