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BackgroundThe Beach Center Family Quality of Life Scale was developed and validated in different languages in different countries. However, this scale is not yet validated in the Ethiopian Amharic language context. Therefore, this study aimed to investigate the cross-cultural validity of the Beach Center Family Quality of Life Scale, among Ethiopian families of persons affected by leprosy and podoconiosis.MethodologyWe explored the semantic equivalence, internal consistency, reproducibility, floor and ceiling effects, and interpretability of the Beach Centre Family Quality of Life Scale in Amharic. After translating, and back-translating the instrument, a cross-sectional study was conducted. A total of 302 adult persons affected by leprosy and podoconiosis, who have a view of their family life were asked about their level of satisfaction using the Beach Center Family Quality of Life Scale. In addition, 50 participants were interviewed again two weeks after the first assessment to check the reproducibility of the scale. Participants were recruited in the East Gojjam zone in Northwest Ethiopia.ResultsThe findings of this study showed that the Beach Center Family Quality of Life Scale had high internal consistency (Cronbach’s alpha of 0.913) and reproducibility (intra-class correlation coefficient of 0.857). The standard error of measurement was 3.01, which is 2.4% of the total score range. The smallest detectable change was 8.34. Confirmatory factor analysis showed adequate factor loadings and model fit indices like the original scale. The composite reliability and average variance extracted from the scale were acceptable. No floor and ceiling effects were found.ConclusionsOur findings indicate that the Amharic version of the Beach Center Family Quality of Life scale has adequate cultural validity to assess the family quality of life in Ethiopian families of persons affected by leprosy and podoconiosis.Author SummaryThe presence of persons with disabilities in the family can affect a family’s quality of life. Neglected tropical diseases such as leprosy and podoconiosis can lead to disabilities and have been found to influence Family Quality of Life. To adequately assess the family quality of life of persons affected by leprosy and podoconiosis, we have selected the Beach Center Family Quality of Life scale. However, this scale has not been validated in the Ethiopian context previously. In this study, the authors aimed to investigate the cross-cultural validity of the Beach Center Family Quality of Life scale in families with one or more persons affected by leprosy and podoconiosis in Ethiopia.A total of 302 participants were included in this study. The results show the scale to be adequately reliable and valid in the target country’s culture and language. Based on the findings, the authors recommend using this scale among families of persons affected by leprosy and podoconiosis.

eHealth applications are increasingly being used in services for people with intellectual disabilities (ID). DigiContact is an online support service that uses videoconferencing techniques to enable people with ID to contact a team of specially trained support workers 24/7. In this qualitative and participatory study we aimed to explore the experiences of independently living people with ID with what it is like to be supported online. Five online support users were each interviewed twice and the transcripts were analysed using a phenomenological hermeneutic method. Choice and control played a central role in their shared experiences, as well as the relationship with online support staff. The results indicate that the suitability of online support depends on the needs, capabilities and preferences of each individual support user. This underlines the importance of a personalised approach to the planning and delivery of online support. Points of interest In this research we interviewed five persons from the Netherlands about what it is like for them to be supported by the online service DigiContact. They felt that DigiContact helped them to have access to sufficient professional support. Without DigiContact this would have been impossible, because of a reorganisation of the national long-term care system and cuts in care budgets. They also felt that DigiContact gave them control over their support and stimulated them to take on an active role towards solving their problems. Online support felt relatively impersonal, because they had contacts with different support workers. We conclude that online support seems not to be equally suitable for everybody. Whether online support is suitable, and in what form, depends on someone’s personal needs, wishes and preferences in support. Service organisations should look carefully at each individual person when planning the use of online support.

Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time.

Service organizations for people with intellectual and developmental disabilities (IDD) increasingly use telecare applications to improve their services. This study explored the usefulness of offering the 24/7 online support service DigiContact within a broader mix of professional services for people with IDD living independently. We employed a qualitative multiple case study, in which the cases of nine online support users were reconstructed through semistructured interviews with both support users and their case workers. Thematic analysis showed that online support was used as an addition to regular onsite support to enable a more tailor-made delivery of professional supports. Online support can be valuable for its users by increasing the accessibility of professional support and creating opportunities for more self-direction in support.

Background Due to a predominant focus on mothers, fathers of children with disabilities are greatly overlooked in research. One could argue that there is a lack of research on the multifaceted nature of fatherhood altogether. Therefore, this study aims to gain insight into the perceived experiences of fathers of children with disabilities. Methods These perceptions were studied by analysing data generated through semi-structured interviews, which were conducted with 12 Dutch fathers of children or young adults with disabilities. Results Categories found during our data analysis were similar to those illustrated in the 'conceptual framework on responsible fathering' by including role identification, commitment, employment characteristics, cultural expectations and social support. Conclusions Overall, the fathers in this study reported similar experiences, but this study identified new life perspective as an additional category, which might be specific for fathers of children with disabilities. This new life perspective included a positive attitude, living in the moment, appreciation of the little things and transformation of expectations. Some fathers expressed that their child(ren) has enriched their lives, which positively influenced their fathering experience.

Quality of life is a concept that has had robust development and application in the field of intellectual disability in recent decades. It functions as an apt goal for individuals to enhance their lives, as well as for policy and disability support. Quality of life helps address ethical issues by acting as a key guidepost in ethical considerations. Current philosophical and human rights approaches to disability support the view that intellectual disability is no reason to assume poor quality of life. Moreover, individuals with intellectual disabilities themselves typically rate their own quality of life quite high. Similarly, families perceive disability as contributing to family quality of life in some ways, although this is tempered by social constructs, especially normalcy, that support marginalization and discrimination. Disability Studies, and critical disability theory that constitutes much of its foundation, offer an alternative perspective of intellectual disability that values its contribution to larger society-intellectual disability as a positive and necessary aspect of the diversity within the human mosaic. It is argued that this perspective of intellectual disability negates the necessity of new eugenics practices.

Service organizations for people with intellectual disabilities (ID) increasingly look for technological applications to improve their services. DigiContact is an online support service developed by Philadelphia Care Foundation in the Netherlands which enables independently living people with ID to contact specially trained support workers 24/7. The purpose of this study was to explore the support needs for which people with ID use online support. We first conducted interviews with 21 individuals with ID who use the online support service. Transcriptions of the interviews were analyzed using inductive thematic analysis. Second, online support workers registered items regarding the support needs when in contact with support users. These data were analyzed to assess which and how often the support needs were present. Online support is used for a broad variety of issues. Four themes emerged during analysis of the interviews: mental health, social contacts (conflicts with others as well as lack of contacts), practical issues, and physical health. Analysis of the support workers' data showed that making a connection with someone and talking about worries and stress are the two most frequent support needs. Most support needs did not differ across the time of day or across the week. The results suggest that 24/7 online support is a useful way of providing services to independently living people with ID. Unlimited access to support has multiple advantages. It appears to have a signaling and a preventive function with regard to emotional and behavioral problems.

In this exploratory case study based on qualitative research, we explore the perspectives and experiences of autistic self-advocates in the Netherlands regarding autism, (self-)advocacy, and consumer-run organizations. The focus of our study is a consumer-run organization by and for adult Persons on the Autism Spectrum in the Netherlands: PAS-Nederland or PAS for short. Our analysis reveals four themes relevant to the acceptance and integration of adults with autism into society and work: (1) invisibility of autistic adults; (2) diversity of the autism spectrum; (3) autistic leadership; and (4) collaboration between people with and without autism. We discuss the practical implications of our findings for the inclusion of people with autism in work and society. Our study underscores the importance of putting autistic people at the center of decision-making processes and solutions aimed at improving their outcomes in society, in general, and in the workplace specifically.

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0–80), the SARI stigma scale (range 0–63) and the Beach Centre Family Quality of Life scale (range 0–125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p, Author summary A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. Family-based support may be a sustainable and feasible strategy to practice self-management. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We collected data on physical impairments, activity limitations, stigma and family quality of life, and conducted in-depth interviews and focus group discussions. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings. A total of 275 persons affected attended at least one session with a family member. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved. In addition, family quality of life significantly improved, and stigma levels significantly decreased after the intervention. Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma.

In these research notes, we present the results of a roundtable and a subsequent process of reflection on the challenges facing researchers in disability studies using creative methods. The roundtable took place at a conference on disability, “Diversity & Belonging: Celebrating Difference” in Athens in 2018. The aim of the roundtable was to explore with other researchers in disability studies the challenges and joys of academic research using creative research methods. Even though the commitment to inclusive research is common in disability studies, the use of creative research methods still feels like pioneering and unconventional. The purpose of the roundtable was to discuss how we can extend the use of creative research methods so that more people can join in research work. In these research notes, we discuss some reflections on the material that came out of our roundtable and from the reflective session we held after the roundtable. From studying these conversations, we identified four insights on the use of creative methods in disability studies: embodiment, discomfort, connection and plurality of voices. Samenvatting In deze research notes presenteren we de resultaten van een roundtable en het daaropvolgend proces van reflectie over de uitdagingen van het toepassen van creatieve onderzoeksmethoden in disability studies. De roundtable vond plaats op het disability-gerelateerd congres “Diversity & Belonging: Celebrating Difference” in Athene, 2018. Het doel van de roundtable was om samen met andere onderzoekers in disability studies de obstakels en kansen van creatieve onderzoeksmethoden in academisch onderzoek te verkennen. Hoewel onderzoek steeds meer inclusief vormgegeven wordt voelt het gebruik van creatieve methodes nog steeds aan als pionieren, baanbrekend en onconventioneel. Het doel van de roundtable was om met andere onderzoekers samen te exploreren hoe we het gebruik van creatieve onderzoeksmethoden kunnen uitbreiden zodat meer mensen kunnen meedoen in onderzoek. In het artikel gaan we in op de resultaten van de roundtable en ons reflectieproces daarna. Door deze gesprekken te bestuderen, identificeerden we vier inzichten over het gebruik van creatieve methoden in disability studies onderzoek: rond embodiment, ongemak, verbinding en meervoudigheid van stemmen.

Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.

Diversity is a current buzzword in politics, but in the EU, people with disabilities are not achieving the gains made by women and ethnic minorities. This research examined barriers and facilitating factors through a literature review and interviews with politicians and political activists in five European countries. Six categories of barriers and facilitating factors were found: networks, recruitment and mentoring, resources (money, time and energy), the “hierarchy of impairments,” accessibility of political spaces and activities, and laws and policies. Key recommendations include removing access barriers to political participation, from voting to holding office, including physical and procedural barriers in political spaces; ensuring that equalities legislation covers politicians; eliminating barriers imposed by benefits systems; promoting direct support for political activists, candidates and office-holders with disabilities, including access to necessary services and supports; encouraging parties to recruit and mentor disabled people with leadership potential; and considering quotas and job-sharing. Points of interest Not many disabled people are active in politics. In the EU, about 15% of people have an impairment, but only around 1% of politicians do. Inclusion at school and in social groups makes it easier to get into political jobs or to try to get elected. Some disabled political activists, volunteers, candidates and office-holders don’t get the support they need. Political parties can help by finding disabled people, supporting them, and helping them get involved in politics. Our article provides several ideas about how to make it easier for disabled people to run for office and work in politics.

Accessible summary The research was conducted by a team of researchers. Some of the researchers have experience of living with a disability. The researchers created training for other research teams that include experts by experience. The training has six parts. To decide what happened in the training, the researchers read articles and asked the research teams they trained about what problems they had and what they wanted to know about. The article tells why and how the training was made. It also says what training is needed for researchers with and without disabilities to learn and work together in a way that feels safe and useful. In developing and providing the training, it was very crucial to search for a safe and welcome space for all people involved (Figure 8). As we don't know what is "safe" for the other, this means we have to search together, in respect and with enough time to get to know each other. Background Researchers collected questions and needs for training from 10 inclusive research projects in the Netherlands. Based on literature research and the information collected, six training modules were developed. Researchers sought to learn how to develop and provide training and coaching to inclusive teams on organising collaboration in the different stages of their research projects. Method An iterative training development process to support inclusive research projects was initiated by a research duo backed by a transdisciplinary team including researchers, trainers and designers. Some members of the team have experiential knowledge based on living with a disability. Results Literature research resulted in four guiding theories, including Universal Design for Learning, Derrida's concept of Hospitality, post-materialist theory looking at agency as an assemblage, and Romiszowski's model situated within Instructional Design theory. Insights gained during development of the training modules are documented with text, figures and vignettes. A core finding was the need to add "Level Zero" to Romiszowski's model: a collective term created for all the interacting issues trainers had to consider because of research group diversity. Conclusions Hospitality formed the heart of "Level Zero." Creating a failure-free space for learning is an important pre-condition for the development and organisation of training. Training can inspire exploration and reflection on collaboration and can illuminate how to conduct research within transdisciplinary teams. Essential practices included working with nonverbal research methods, as these are (more) fit for purpose when including the knowledge of experts by experience and incorporating practice- and stakeholder-based knowledge.

Background Leprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life. Methods A cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25–125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0–63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0–80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis. Results A total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between the FQOL and SALSA scores. Conclusions Family quality of life is an important area to address because neglected tropical diseases often affect the whole family. It is therefore important in order to provide appropriate support for persons affected and their family members. Efforts to improve the quality of life of families in which a family member is affected by leprosy, podoconiosis or LF should give priority to women and families with a smaller family size.

Background During the COVID‐19 outbreak, service providers in the Netherlands had to switch towards providing remote support for people with intellectual disabilities living independently. This study aims to provide insight into the use of online support during the outbreak. Methods We analysed quantitative data on planned and unplanned contacts between the online support service DigiContact and its service users. Results The results indicate that the COVID‐19 outbreak and the related containment measures had a strong impact on online support use, specifically on the unplanned use of online support. Conclusion Offering online support as a standard component of services for independently living people with intellectual disability enables service providers to be flexible and responsive towards fluctuations in both support needs and onsite support availability during a social crisis such as COVID‐19.

With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

Family quality of life (FQoL) is an emerging concept to understand and improve the well-being and quality of life (QoL) of families. While there has been a lot of effort to conceptualize life domains of families and measurement tools are devised, few studies concentrate on an in-depth understanding of FQoL. The specific aim of the current study is to understand the relation between individual QoL and FQoL, by studying families with a child/children with intellectual and developmental disabilities (ID/DD) in the Netherlands. This can contribute to a stable foundation of the concept of FQoL. Methods: An explorative case study design was used, in which the parents, sibling, and child with ID voiced their thoughts on their FQoL. The presented case has been analysed through thematic and narrative analysis. A father and a mother with a child with an intellectual disability have joined the research team as co-researchers. The relational dynamics found within the family illuminated an interactive pattern in which the son with ID acted as an Emperor, creating a Golden Cage for other family members and Umbilical Ties among them. The family portrait shows that FQoL is a dynamic and relational concept. By making strict distinctions between individual QoL and FQoL, the dynamics between family members and the way they work alone and/or together to ensure the well-being of the family and its members can easily be overlooked. In addition to the common-sense notion that FQoL and QoL support each other, conflicts and tensions can occur.

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.

Het doel van het VN Verdrag voor de Rechten van Mensen met een Beperking is een inclusieve samenleving. Geen fysieke, wettelijke en sociale barrieres meer voor mensen met een beperking. Wordt het een wereld van verschil? ‘Ja, uiteindelijk wel’, zeggen (ervarings)deskundigen.

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants’ personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building.

Purpose: There is very little demographic or prevalence data regarding persons with disabilities in Ethiopia, let alone data on more in-depth factors such as access to services or quality of life. This study aimed to find out about the current quality of life of persons with disabilities in Southern Nations, Nationalities, and Peoples’ Region (SNNPR), Ethiopia. Method: The WHO CBR Indicator Survey was used to measure quality of life, and the Washington Group Short Set was included to allow disaggregation of the data by different types of functional limitations. Interviews were conducted with 966 persons with disabilities in 10 towns in SNNPR. The majority of data collectors were persons with disabilities themselves. Results: People with disabilities who were surveyed generally regarded their health as good (65.9%). Very few had significant levels of education (16.5% were completing higher education). Only 6.7% were working for wages and 45.2% were reportedly working on their own account. Hardly any of them (2.9%) stated that their money was sufficient for their needs. Only a small group (38%) felt valued in their community. Just over half of the respondents (56.6%) were members of a Disabled Persons’ Organisation (DPO) or any other self-representing group. Conclusion: Persons with disabilities scored relatively or extremely low in all areas of life measured with the CBR Indicator Survey (health, education, livelihood, social and empowerment). The survey will be repeated after a few years in the same communities to measure changes over time, and persons without disabilities will be included in order to draw comparisons. Implications: Public and private organisations in SNNPR need to become more accessible and inclusive of persons with disabilities so as to improve their quality of life.

This study looks at the equality challenges and opportunities for women with disabilities in low and middle income countries (LMICs) to participate and succeed in education, employment and motherhood. It is based on a systematic review of the literature from academic and non-governmental organization databases. The search of these databases yielded 24 articles, which were subsequently passed through open, axial, and selective coding. The resulting review found that women with disabilities in LMICs have severe difficulty participating and succeeding in education, employment and motherhood due to a number of interrelated factors: (i) hampered access to education, employment, intimacy and marriage, (ii) stigma and cultural practices resulting in discrimination and prejudice, and (iii) lack of support from family, teachers and institutions—all of which are exacerbated by poverty. Support from families, communities, the government, and non-governmental organizations improves women’s ability to fulfil their social roles (as students, employees and mothers), resulting in a better quality of life. Strategies that create awareness, minimize poverty and facilitate justice may improve the opportunities for women with disabilities in LMICs to participate in education, employment and motherhood, as well as their ability to succeed in these domains.

This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society's denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society's prejudices toward disability.

The need for quality of life, both as a concept and as a measure, to be applied to policy and practice has been noted in the disability literature for several years. In 2012, Schalock and Verdugo introduced a conceptual model to help service organizations evaluate if congruence exists among their systems, policies, and practices and, if misalignments exist, to make changes through policy and systems change. Their model focuses on two levels, system-level processes and organization-level practices, at three consecutive stages of use: inputs, throughputs, and outputs. In this article, the authors extend the work of Schalock and Verdugo by adding a third level of application, individual- and family-level living, and propose the inclusion of outcomes as a fourth stage of use representing a consequence of outputs. We recognize the dynamic interaction among all components of the conceptual framework and, like Schalock and Verdugo, argue for alignment both vertically (system, organization, and individual and family living levels) and horizontally (inputs, throughputs, outputs, and outcomes) within our revised conceptual framework. Based on this, the authors propose that quality of life outcomes (the ongoing effects of outputs) should be an ultimate focus of service organizations and policy development if quality of life is to be enhanced for individuals with intellectual and developmental disabilities and their families.

BackgroundThe active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research.MethodA total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round.ResultsThis consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research.ConclusionsConsensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

This editorial presents the theme and approach of the themed issue “Humanity as a Contested Concept: Relations between Disability and ‘Being Human’”. The way in which the concept of humanity is or must be related to disability is critically investigated from different disciplinary perspectives in the themed issue, which is, moreover, situated in the field of disability studies and related to discussions about posthumanism. The argument is made that humanity is a concept that needs to be constantly reflected upon from a disability studies perspective. Finally, the contributions of the themed issue are briefly outlined.

This special issue on quality of life (QOL) and family quality of life (FQOL) is the first part of two special issues, with the second to appear in the Journal of Policy and Practice in Intellectua...

Professional services for persons with intellectual disabilities (ID) have begun to attach more importance to their environment. The concept of (family-related) quality of life proved to link very well with this idea and lent itself to constructing and evaluating services. One outcome was the emergence of equal partnerships between families, service providers, and other parties in the community. Within this context, the authors explored and described positive practices in supporting young adults with IDs by realizing their personal future plans based on partnerships, the concept of quality of life, and community support. Nine families were followed over a 2-year period (2004–2006). Face-to-face interviews and a survey were conducted with young adults, family members, and professional supporters. Each family was individually supported in the realization of a personal future plan by an “intermediary” or go-between. The results indicated the importance of partnerships among the participants. In creating such partnerships, all participants can be in control, although all parties involved needed extra support to enhance quality of life.

In the past few decades both the structure and the culture of the Dutch health-care system have changed. A new insurance system was introduced as well as new legislation. Both were mainly cost-driven, but were also influenced by changing visions. These changes also had implications for the intellectual disabilities field. Quality assurance was introduced, first to monitor and improve health-care processes; later on quality assurance became outcome-oriented. The concept of Quality of Life (QoL) proved to be a useful concept in a sensitizing, organizing and reflecting way. In policy development in the intellectual disabilities field, the concept of QoL meant a paradigm change (sensitizing), implying changes in views and roles of several stakeholders at micro, meso and macro level in the field (organizing). The concept of QoL is used in a reference framework at a national level, as well as in a memorandum at an EU level (reflecting). In practice, the concept of QoL is applied by several organizations in the disabilities field as a sensitizing concept (as seen by the renewing of mission statements and general objectives), with best-practice resulting in organizations refocusing services and programmes. The outcome orientation in the disabilities field has led to the use of the concept of QoL as a reflecting model. The task for the next decade is to internalize, align and broaden the described practices so as to strive for an enhanced quality of life for people with intellectual disabilities.