Alice Schippers | VUmc Amsterdam (original) (raw)

Academic journal articles by Alice Schippers

a school of commerce, addis ababa University college of business and economics, addis ababa, ethi... more a school of commerce, addis ababa University college of business and economics, addis ababa, ethiopia; b ts social and behavioral sciences, Department of Human Resource studies, tilburg University, tilburg, the Netherlands; c ts social and behavioral sciences tranzo, scientific center for care and Welfare, tilburg University,

Family quality of life (FQoL) is an emerging concept to understand and improve the well-being and... more 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 Nether-lands. 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.

Journal of Policy and Practice in Intellectual Disabilities, 2009

Professional services for persons with intellectual disabilities (ID) have begun to attach more i... more 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.

Medische Antropologie, 2010

Disability Studies as an area of research, training and education, was recently launched as an or... more Disability Studies as an area of research, training and education, was recently launched as an organization in The Netherlands (November 6, 2009)

Journal of Intellectual Disability Research, 2005

Actual practice in the Netherlands has shown the need of an instrument to evaluate the quality of... more Actual practice in the Netherlands has shown the need of an instrument to evaluate the quality of support plans. This article describes the development of an instrument for such evaluation. The concept of quality of life (QOL) domains were used to develop an instrument to evaluate the quality of support plans within a QOL conceptual and measurement model. Information from the literature and client files was used along with expert judgement. Views on support can be divided in two dimensions: an emphasis on the person and an emphasis on relationships. With this information an instrument was developed for self-evaluation and one that is intended for the drafters of support plans. Data from 268 respondents demonstrated the instruments reliability and validity.

Disability researchers recognise the significance of knowledge exchange among participants. Incre... more Disability researchers recognise the significance of knowledge exchange among participants. Increasing value is attributed to the importance of life experiences. It is surprising therefore, that no literature exists about participation of people with learning difficulties in disability conferences. To address this gap, Disability Studies in Netherland (DSiN) 1 designed and implemented a 'Buddy Project' for a 2013 conference in Amsterdam. Relevant concepts were explored in literature, one group interview and eleven individual interviews were conducted. Participants with learning difficulties were sent a list of questions the day before. The Buddy Project assisted people with learning difficulties in both meaning and language translation. Although, people with learning difficulties had some sense of belonging at the conference, and understanding was increased, they felt they were not heard. The project was partially successful in increasing participation of people with learning difficulties, but less successful in facilitating mutual exchange of knowledge. If people with learning difficulties had been involved in its design, it would have been more successful, as they would have provided useful suggestions.

This special issue on Quality of Life: Exploring New Grounds, is the second part of two special i... more This special issue on Quality of Life: Exploring New Grounds,
is the second part of two special issues. The first one is published
in the Journal of Intellectual and Developmental Disability, Brown
& Schippers (Eds.) 2016, 4(4). The two issues are complementary
and together give a broad overview of both developments and
challenges in the field of quality of life and family quality of life.
Over the past decades, the concept of Quality of Life (QOL)
has received an international or global perspective (Brown, Schalock,
& Brown, 2009; WHO, 1993). Quality of life can be considered
as a concept that gives a general idea of what is important in
life, “what it is all about.” Living a quality life is equally important
for people with and without disabilities.

This study focused on parent-initiated supported living schemes in the South of the Netherlands a... more 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

Papers by Alice Schippers

Frontiers in Sustainability

With the increased attention to disability as a vulnerability criterion in the Sustainable Develo... more With the increased attention to disability as a vulnerability criterion in the Sustainable Development Goals, international organizations and NGOs within the international development sector have started to pay explicit attention to persons with disabilities, including the collection of data on persons with disabilities. The Washington Group Short Set of Questions, which focuses on functional limitations, has been gaining popularity as an assessment tool for disability. This set of questions reflects a categorization of disability that does not necessarily correspond with subjective disability assessments, such as the yes/no question (“do you have a disability?”) which many development actors have used in their assessment tools when they collect disability data This study compares the subjective and the functional limitations assessment tools for disability to answer the question: do they identify the same individuals as persons with disabilities? Based on a survey carried out among...

PLOS Neglected Tropical Diseases

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilitie... more 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...

Journal of Intellectual Disability Research, 2018

Background The active involvement of people with intellectual disabilities in research, or inclus... more Background The 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. Method A 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. Results This 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. Conclusions Consensus was reached on how to design and conduct inclusive health research.

Journal of Intellectual Disability Research, 2020

Background Due to a predominant focus on mothers, fathers of children with disabilities are great... more 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.

Universiteit voor Humanistiek, Oct 7, 2021

Social Sciences

The original adage of the movement of people with disabilities ‘Nothing about us without us’ is f... more The original adage of the movement of people with disabilities ‘Nothing about us without us’ is fortunately more and more adopted in the research world. There is, for example, increasing recognition of the importance and value of actively involving people with intellectual disabilities in research projects on topics that are relevant to them. In a current doctoral research project, a co-researcher with an intellectual disability was recruited to work together with the doctoral researcher. Now that this project is nearing completion, it is time to look at some aspects of their collaboration and see what we can learn from this process. In several (joint) meetings, the researchers reflected on their personal experiences with working and researching together. Our reflections are presented using three overarching themes: preparations for the collaboration, collaborating as a complex process, and conducting research together. The discussion focuses on what can be inferred from these perso...

The Routledge History of Disability, Oct 25, 2017

Journal of Social Intervention: Theory and Practice, 2009

Book chapters by Alice Schippers

Enhancing the Quality of Life of People with Intellectual …, 2011