Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"The influence of context on the conceptualization, measurement, and application of the concept of quality of life","authors":"Marco Lombardi,&nbsp;Claudia Claes,&nbsp;Valerie J. Bradley,&nbsp;Robert L. Schalock","doi":"10.1111/jppi.12508","DOIUrl":"https://doi.org/10.1111/jppi.12508","url":null,"abstract":"<p>The influence of context on the conceptualization, measurement, and application of the quality of life concept was acknowledged in the principles contained within the original <i>Quality of Life Consensus Document</i> published in 2002 and validated in 2004. Since that time, there has been a substantial increase in our understanding of both the QOL construct and the multidimensional properties of context. The purpose of this article is to report on a multi-step process conducted in 2019 by a group of international quality of life experts to review, critique, and update where necessary the QOL principles that were originally developed in 2002. Updated principles for conceptualization, measurement, and application are provided. An understanding of the role of context on the QOL concept allows for measurement guidelines to accompany the measurement principles, an understanding of the application conditions associated with a person- or family-centered approach to QOL, and implementing guidelines regarding both the development of QOL-related policies and practices and their monitoring and evaluation.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140952952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Limits on quality of life: Who has the answer?","authors":"Antonia Coppus,&nbsp;Jannemeis van Berkel","doi":"10.1111/jppi.12506","DOIUrl":"https://doi.org/10.1111/jppi.12506","url":null,"abstract":"<p>Taking care of persons with intellectual and multiple disabilities (IMD), especially when vulnerability and medical intervention increase, can lead to the question: to what extent is there still quality of life? In the search for answers, caretakers and families are confronted with unsolvable dilemmas such as how can we identify the meaning of this life or recognise when there is suffering? How does one understand and give meaning to quality of life where fragility is present? Society, on the other hand, which rates successful living as the standard, avoids the discussion on limits to quality of life by labelling it as a medical ethical issue. It has recently been argued that the medical perspective is leading in this discussion and is the deciding factor in giving meaning to quality of life. Such statements worry IMD healthcare professionals and caregivers. This article therefore aims to offer an insight into the professional, practical and personal care experience of both authors, to explore the issue in more depth and start a nuanced dialogue without losing sight of the immense complexity of the subject. To do this, we first outline the social context in which the healthcare practice has to take place, explaining the reality of it and the difficulties faced.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140949271","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Ikigai framework: Supporting meaning in life","authors":"Joann Douziech","doi":"10.1111/jppi.12505","DOIUrl":"https://doi.org/10.1111/jppi.12505","url":null,"abstract":"<p>This article describes the elements of a support framework based on the Japanese concept <i>Ikigai</i>, “that which gives your life meaning and purpose.” The basic assumption is that understanding and attaining life meaning and purpose are both the main goal and the main pathway to achieving optimal quality of life. The Ikigai framework recognizes the characteristics of people with disabilities—both their capabilities and their limitations—and contends that these need to match expectations for autonomy and choice making, but always supported and enhanced by lifelong learning. The three main pillars of the framework (environment, skills, and approaches) offer an outline for effective support planning that reduces the need for behavior support plans and enhances opportunities to develop life meaning and thus optimal quality of life.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140648095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health and health care are essential to the quality of life of people with intellectual disability","authors":"Alice Bacherini,&nbsp;Laura E. Gómez,&nbsp;Giulia Balboni,&nbsp;Susan M. Havercamp","doi":"10.1111/jppi.12504","DOIUrl":"https://doi.org/10.1111/jppi.12504","url":null,"abstract":"<p>Health represents the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment. Health is essential for the quality of life (QoL) of all individuals, including those with intellectual disability (ID). People with ID experience health inequities and barriers to quality health care that must be addressed to foster the QoL of this population. This paper illustrates how poor health negatively impacts each of the eight domains of the QoL model proposed by Shalock and Verdugo (2002) (e.g., health conditions limit work performance, decreasing opportunities for <i>personal development</i> and <i>self-determination</i>). Suggestions for healthcare practices and behaviors that would improve the quality of healthcare provided to people with ID, and thus their health and QoL, are offered (e.g., engaging people with ID in the medical conversation, talking to them in plain language and without jargon enhances the <i>personal development</i>, <i>self-determination, interpersonal relationships</i>, and <i>social inclusion</i> domains of QoL). Finally, we suggest actions that people with ID and their families might implement to maximize their health and wellness (e.g., maintaining a healthy lifestyle, and using the health promotion resources provided by disability organizations).</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140553004","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Practitioners' experiences of delivering parenting interventions remotely: A mixed-methods study","authors":"Lida Papakonstantinou Rodi,&nbsp;Richard P. Hastings,&nbsp;Kylie M. Gray,&nbsp;Jeanne Wolstencroft","doi":"10.1111/jppi.12482","DOIUrl":"https://doi.org/10.1111/jppi.12482","url":null,"abstract":"<p>Group Stepping Stones Triple P (GSSTP), is an evidence-based intervention for parents of children with intellectual disability that aims to improve child behavioural difficulties. GSSTP was designed to be delivered face-to-face, but during the COVID-19 pandemic some services started delivering it remotely. The evidence base for remote intervention is growing, but few studies have focused on the experiences of practitioners delivering the interventions and the consequences of their service provision. We aimed to explore UK practitioners' experiences of delivering remotely GSSTP. The objectives were to identify the advantages and disadvantages of remote GSSTP, to determine whether adjustments were made to enable delivery, and to assess perceived acceptability. Participants were identified using consecutive sampling from the Triple P UK practitioner network. Eleven practitioners, who had experience of delivering GSSTP remotely and face-to-face, reported their experiences in an online survey. Ten participants also took part in semi-structured interviews. Interviews were transcribed verbatim and analysed using thematic analysis. According to 55% of practitioners, parent attendance had increased with remote delivery, and 73% of practitioners found remote GSSTP equally or more effective than face-to-face. Survey findings about managing parent engagement remotely were mixed and building rapport with patients was considered equally or more difficult remotely. The key themes from the thematic analysis were the practitioners' ‘sincere enthusiasm’ over the advantages of the remote GSSTP provision, the ‘person-centered strategies’ that characterised their practice, the emergence of ‘remote delivery as the way forward’ for parenting services and finally, the ‘challenges of remote delivery’. Remote GSSTP was perceived to be acceptable to participants and practitioners; the advantages of remote delivery appeared to outweigh the disadvantages. Practitioners reported strategies to prompt engagement and recreate group interactions in the remote setting that could be integrated in the practice of other group parenting providers.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12482","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140537707","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A perspective on policies and practices regarding access to and quality of healthcare for people with intellectual disabilities in Zambia","authors":"Makambe Namulwanda,&nbsp;Kim Nijhof,&nbsp;Helen Mwembeshi,&nbsp;Richard Kunda,&nbsp;Kamima Ng'uni,&nbsp;Kirsten Bevelander,&nbsp;Fleur Heleen Boot","doi":"10.1111/jppi.12495","DOIUrl":"https://doi.org/10.1111/jppi.12495","url":null,"abstract":"<p>Zambia is a low-income country on the African continent which is facing a high rate of health inequalities. Although the government has made efforts to reform the organization of healthcare to reduce inequalities, the practical implementation of disability policies remains challenging. Specifically, people with intellectual disabilities (ID) face barriers to accessing healthcare services in Zambia, due to geographic or socioeconomic factors, stigma, and limited specialized health professionals. This perspective paper provides an overview of the current policy and organization on the healthcare provision for people with ID. It presents the key challenges people with ID face in Zambia to access quality healthcare services. Additionally, we provide examples of good practices with a community approach. We discuss policy implementation of disability rights, including access to healthcare, the impact of raising knowledge and awareness about people with ID, and how gathering contextual information through research can help to reduce inequalities. Community and culturally sensitive approaches to improve access to healthcare for people with ID in Zambia are crucial. We call for close collaboration between the fields of research and practice to combine expertise and strengthen the impact and possibilities of scaling good practices within Zambia.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12495","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140181729","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The importance of personal factors in assessing quality of life","authors":"Ivan Brown","doi":"10.1111/jppi.12502","DOIUrl":"https://doi.org/10.1111/jppi.12502","url":null,"abstract":"<p>Quality of life has emerged as a dominant concept in the field of intellectual and developmental disabilities, and has been conceptualized, measured, and applied in various ways. To date, the importance to quality of life assessment of personal factors that take on extraordinary prominence in people's lives has only been superficially recognized. This article argues that four main types of personal factors are sometimes extraordinarily prominent and consequently become dominant factors in assessing quality of life: those that are important to all people but have become particularly important to some individuals and families; those that are not very important to most people but are extremely important to some, often because of specific interests and talents; those that result from both positive and negative, often temporary, situations that emerge in life; and those that are a consequence of personal characteristics. It is purported that measurement and application methods that recognize the importance of personal quality of life factors need to be developed and used as a component of an overall quality of life paradigm.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mental age and intellectual disability: Psychologists' perspectives on the use of the term ‘mental age’ as it relates to adults with an intellectual disability","authors":"Elaine M. Rogers,&nbsp;Brian E. McGuire","doi":"10.1111/jppi.12498","DOIUrl":"https://doi.org/10.1111/jppi.12498","url":null,"abstract":"<p>Despite the growing international move away from the term ‘mental age’, the term continues to be used in some settings with adults with an intellectual disability. Arguably, the construct of ‘mental age’ conflicts with current rights-based approaches yet its continued use suggests that it may have certain utilities. This study aimed to explore the use of the construct of mental age in the context of supporting adults with an intellectual disability in Ireland, and its perceived value and limitations in clinical practice. Forty-three psychologists in Ireland responded to a 10-item online survey using a mix of closed and open-ended questions. Descriptive statistics were used and analysis was informed by reflexive thematic analysis. Twenty of the 43 respondents reported that mental age continues to be used in clinical practice. Analysis was informed by reflexive thematic analysis and identified five main themes: (1) negative connotations, (2) inconsistent with best practice, (3) supporting the person with an intellectual disability, (4) communicating about the person with intellectual disability and (5) moving on from mental age. The findings suggest that this construct is considered problematic and limited in its meaning and while there is a desire for change, there are challenges in finding an alternative method of communicating information about ability in a brief and easily understood way.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12498","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114257","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Synthesis: International perspectives on healthcare for people with intellectual and developmental disabilities","authors":"Marian E. J. Breuer,&nbsp;Tim Pelle,&nbsp;Geraline L. Leusink,&nbsp;Christine Linehan,&nbsp;Jenneken Naaldenberg","doi":"10.1111/jppi.12500","DOIUrl":"https://doi.org/10.1111/jppi.12500","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The organization of healthcare for people with intellectual and developmental disabilities (IDD) varies across countries. Each country has developed unique practices embedded in their historical and organizational context. Understanding and sharing these practices across borders facilitates mutual understanding about healthcare needs of people with IDD and facilitates the adoption of effective strategies in other countries.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To provide a synthesis across the country-specific papers in the JPPID special edition and thereby identify underlying trends, challenges, and best practices in healthcare for people with IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The papers in this special edition, which describe the organization of healthcare for people with IDD in 13 countries, were qualitatively analyzed using thematic content analysis, focusing on general characteristics, history, and context, organization of healthcare for people with IDD, challenges, and best practices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Each paper described a specific national history of evolution of healthcare for people with IDD, but our analysis showed that countries face similar challenges in healthcare for people with IDD. These challenges cover (1) access to healthcare, (2) quality of healthcare, (3) implementation, and (4) visibility of people with IDD. Consequently, people with IDD continue to face significant health disparities. Several best practices have been developed, ranging from making mainstream healthcare more accessible and suitable to providing specialized services, and advocating and raising awareness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This synthesis is the first paper to include perspectives on healthcare for people with IDD across 13 countries. We identified that, despite differences in context, countries face similar challenges in improving healthcare for people with IDD. International collaboration and networking can provide essential tools in reducing health disparities that people with IDD face, starting with the challenges identified in this synthesis. This will require effort to especially include low- and middle-income countries.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12500","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114261","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare for people with intellectual disabilities in the Netherlands","authors":"Sylvia Huisman,&nbsp;Dederieke Festen,&nbsp;Esther Bakker-van Gijssel","doi":"10.1111/jppi.12496","DOIUrl":"https://doi.org/10.1111/jppi.12496","url":null,"abstract":"<p>In this article, we describe the healthcare system for people with intellectual disabilities (ID) in the Netherlands. The general background about healthcare for people with ID is the same worldwide: their health needs are often unrecognized and unmet. We delineate, from a historical perspective, the steps the Netherlands has taken to change the situation for them. The Netherlands crossed a milestone in 2016 when it ratified the UN Convention on the Rights of Persons with Disabilities. Despite challenges in establishing numbers, an estimated ID prevalence of 1.45% was determined. The Dutch healthcare system has different levels, is funded through six distinct laws, and is complicated. The Netherlands has a spectrum of disability care services that increasingly collaborate in shaping the care of people with ID. People with ID and their representatives are increasingly involved in the process of shaping this care. The general practitioner plays a central role in the Dutch healthcare system, serving as the gatekeeper to medical specialists. Furthermore, the Netherlands recognizes the role of a physician for people with ID as a medical specialization. The core competencies of the ID physician include knowledge of the etiology and consequences of ID and associated health problems. The ID physician also knows how to deal with diagnostic and therapeutic barriers. Key challenges facing ID healthcare in the Netherlands include difficulties supporting people with ID due to the increasing complexity of society, concerns about continuity of care at the transition age (18−/18+), inadequate reach of population screening programs for people with ID, and limited availability of (routine) data for research on the ID population. The Dutch government encourages research in the ID field to overcome these challenges by financially supporting academic collaboratives. Substantial progress has been made, but key challenges remain, showing that there is still great room for improvement.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 2","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12496","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}