The National Disability Authority (NDA) Act (1999) sets out NDA's responsibility to undertake and commission research to assist in the development of information to support "the planning, delivery and monitoring of programmes and services for persons with disabilities" in Ireland.
NDA has a strong commitment to quality and integrity of the research process, and these guidelines are one among many NDA initiatives, which aim to ensure the highest standards in the research endeavour. In 2002 NDA issued guidance on good practice in consultation with people with disabilities and we focused our 2002 annual research conference on developing capacity in participatory methodologies. In 2003 NDA worked to develop ethical guidelines to guide disability research in Ireland; consultation on these guidelines was the subject of NDA's 2003 Annual Research Conference and we are working currently to establish a National Ethics Committee to advise on ethical challenges in social policy research in the disability field. Other quality initiatives include our work in 2004 to develop protocols to ensure that our internal research commissioning processes adhere to best practice.
Working with children demands special care to ensure that their rights are never compromised by participation in research. Children with disabilities can be particularly vulnerable in the research process owing to diminished communication and understanding capacities. In our efforts to gain new knowledge, and new insight into the experience and needs of children with disabilities we must be vigilant that the integrity and autonomy of the child remains central. These guidelines, which are organised according to the stages which usually make up the research process from planning and implementing the research, to analysing the data and disseminating it, aim to support researchers working with children to ensure the engagement with the research process is empowering, respectful and beneficial for all.
The Guidelines were developed in consultation with a broad range of stakeholders - researchers, policy makers and service providers in the disability sector, the youth sector and the broad social policy arena. We are grateful to all those who participated in workshops and seminars, and to all those who commented on the drafts of the guidelines. In particular we are grateful to Dr. Jean Whyte, Senior Research Fellow at The Children's Research Centre, TCD for her excellent work in bringing this important initiative to life.
M. Claire O'Connor,
Director,
National Disability Authority.
This section provides an Executive summary of the Discussion Paper written to accompany the Guidelines and Checklist for those undertaking research with children with disabilities. It is hoped that readers will be encouraged to read the complete paper - this is intended to be but a foretaste with the aim of setting the context for the Guidelines and Checklist. Advances are being made in research and in our thinking about research all the time. This set of documents is intended to reflect concerns current at the time of publication, but its recommendations are not set in stone. Some of these concerns will endure and it is hoped that the suggestions in the documents will offer support to those dealing with them. New concerns may arise and it is hoped that the principles underlying the documents will be helpful in finding solutions, which are acceptable.
These documents are set in the context of a re-evaluation of the status and role of children in society in Ireland as well as advances in the field of disability studies and in the context of the development of a rights-based approach in Irish disability policy (NDA, 2002b). Historical attitudes and presumptions about the nature of childhood have resulted in children being seen as vulnerable; legal notions often depict childhood as a period of powerlessness and irresponsibility; but it must also be recognised that there are differing cultural perspectives on childhood and dependence. Childhood and how it is understood have changed over space and time; children's rights are only gradually being recognised in Ireland since the ratification by Ireland of the United Nations Convention on the Rights of the Child. These rights include not only the rights to survival, development and protection but also basic civil rights - the right to freedom of expression, religion, conscience, association, information, physical integrity and to participation in decisions on matters of concern to them. However, participation does not necessarily equate with autonomy, nor with a lessening of parental responsibility - though this should be exercised in a manner which is consistent with the child's developing capacity.
In the area of social research, new approaches are developing which give greater emphasis to children as social and cultural actors instead of treating the child as subject. Researchers are now asked to ensure that opportunities are provided for children to speak for themselves and supports for so doing are, if necessary, specifically provided, especially where the situation involves children with disabilities. The rights of the child with disabilities need to be protected and also promoted because historically, they have lacked acknowledgement to an even greater extent that those of other children, and this has been due to a certain extent to the models of disability underlying approaches to service provision.
Individual and medical models of disability focus on the health status of the individual. The individual's health condition, whether it is a physical, sensory, intellectual or mental health condition or a combination of some or all of these, is seen as underlying all outcomes in terms of life situation and social experiences. This may result in people with disabilities being represented primarily in terms of what they lack rather than in terms of who they are and these models have been characterised as disempowering and as reinforcing rather than challenging social exclusion. (Good, 2003)
The British social model focuses more on society's shortcomings in making or failing to make adequate provision for people all the way along the continuum of human endowment in terms of physical and mental health and well-being. 'Disability' is defined variously as the social oppression or exclusion, which results from society's treatment of people with needs outside the mainstream, rather than the form of impairment (Shakespeare and Watson, 2001). Disability is seen as a social construct which is built upon impairment but is not a necessary consequence of impairment. The focus in this model is on society and its disabling structures rather than on the person or persons with impairment (Good, 2003). It has been suggested that the social model's central concern with the deconstruction of power dynamics that create and reinforce the experience of exclusion for disabled people raises some challenging issue for researchers wishing to engage in disability research (McCarthy, 2002).
A further development in recent years has been the generation of The International Classification of Disability, Functioning and Health (ICF). This model was developed by the WHO in consultation with disability NGOs and other experts during the 1990s. It conceptualises disability as 'a dynamic interaction between health conditions (diseases, disorders, injuries, traumas etc.) and contextual factors' (WHO, 2001:8; DPI, 2003). This interaction is seen as being an experience common to all humans across their life span; the conceptualisation thus does not make exceptions of those with disabilities and it rejects the notion of the assumed norm which underpins previous understandings of disability (Good, 2003). It sees every person as having a place on the same continuum and does not make 'special cases' of those with different functioning and different support needs. The model has four dimensions - body structures and functions, environmental and personal factors with activity and participation being the measures of disability. This model attempts to combine the better elements of the medical and social models and is currently in use.
Attempting to define disability can lead one rapidly into a maze, but it needs to be confronted. The National Disability Authority (NDA) offers the following based on the UPIAS definition ' [Disability is] 'the disadvantage or restriction of activity caused by contemporary social and cultural organisations which take little account of people who have impairments and thus exclude them from mainstream social and cultural activities' (NDA, 2002b, p.76). Impairments can be physical, sensory, mental health or intellectual and can have social or other causes or unexplained origins. Impairments have been recognised in the literature as having the potential to affect any or all aspects of functioning - physical, cognitive, emotional, psychological - depending on the circumstances and the supports available.
A review of disability-related research in Ireland 1996-2001was published by the National Disability Authority (NDA, 2002b). The authors grouped the research projects which they identified under the thematic headings of Generic, Education, Employment and Training, Health, Income Adequacy and Transport. They drew attention to the prevalence of un-coordinated idiosyncratic studies, the paucity of studies emanating from the social model of disability and the finding that very few of the 400+ pieces of research identified reflected a rights-based approach in their methodology. There was concern about the low rate of participation of people with disabilities in the research process as distinct from acting as respondents - perhaps because many of the studies appeared to be based on the medical model, - concern in a few cases about the awareness of disability issues and terminology used and regret that so few studies used qualitative approaches or sought individual testimonies of experience and feelings.
The voices of children with disabilities have been largely absent from research on children, not only in Ireland but internationally. There has been much criticism about research carried out with (or usually about) children with disabilities in terms of its aims (not often child-centred), in terms of it not being rights-based and in terms of its lack of provision for supporting participation in the research process. The poor extent of dissemination of this research is also criticised especially in the field of disability studies, and that they should be considered to be moral agents capable of having viewpoints. Since 1996 the picture has changed somewhat especially in the U.K. There is a growing recognition that children's voices have not been listened, to especially in the field of disability studies; some research projects have addressed this issue directly in a qualitative way and more acknowledgement has also been given to the children's capacities to develop complex and multiple identities.
New approaches are being developed (empowering, emancipatory, participative) and are advocated by the NDA for research with people with disabilities (NDA, 2002a, 2002c). These models, with their emphasis on participation by people with disabilities and the development of more equal partnerships with non-disabled researchers, are seen as a response not only to the exclusion of people with disabilities from the research process up until very recently, but as a necessary reaction to the oppression of people with disabilities in society and the systematic denial of their rights. It is seen as essential that disability research accurately reflects the perspectives of people with disabilities and remains focused on the issues of greatest importance to them. The difficulties underlying the new approaches are many and challenging and the NDA has developed a series of Guidelines for those trying to develop more equal partnerships (NDA 2000a, 2002b)
Issues need solutions and the principles guiding the researcher towards solutions should be clear, familiar and accepted by all the parties concerned. The Children's Research Centre in Trinity College has proposed in its document (Notes on ethical issues in research with children, TCRC, 2002) that these principles be derived from a set of core values as follows:
These are intended to guide the researcher in making decisions on issues which may arise in the course of a research project.
There has been some debate about whether research with children and with children with disabilities necessarily raises unique questions about ethics and methods. It has been proposed (Lindsay 2000) that research with children poses the same ethical questions as apply to other types of research, but that there are also concerns specific to children and young people. These focus upon informed valid consent and ways of ensuring that this is attained, but also that the child is included meaningfully in the decision-making process. In addition there is a duty to ensure that research is not carried out on children unnecessarily and that the degree of intrusion is minimised.
It is probably impossible, and it would be inadvisable, for researchers to determine alone the appropriate solutions to the dilemmas, which may arise in doing research with children with disabilities. The NDA has recently issued guidelines on ethics in disability research (Good, 2005) As part of their support system; it is recommended that researchers should have access to an Advisory Group and also to an independent Ethics Committee. Research projects involving children with disabilities should in all cases have ethical approval.
Key issues are grouped in the Discussion Paper under the following headings which correspond to the main relevant components of the research process and key considerations are summarised at the end of each section.
Disabilities studies and research have made great strides since the early 1990s. Although there are many difficulties associated with research in this field, the research effort is vital and it is hoped that would-be investigators are not deterred by the magnitude of the task as it might appear from the Discussion Paper and these Guidelines and Checklist. A range of strategies has been identified which should ease their way. Forewarned is forearmed and in Ireland there is enormous potential for the development of a solid core of data which will be useful not only for the generation of policy and the assessment of practice in this country, but which will contribute to progress in the field overall. It is hoped that the range of issues and proposed solutions, as presented in the Discussion Paper and the Guidelines and Checklist will make a contribution to the thinking behind the activities which will result in that progress.
These guidelines are based on a model of childhood that sees children as active interpreters of their world with the right to be consulted on matters concerning them. The guidelines are intended for those involved in doing social research with children with disabilities and aim to inform those commissioning such research and those participating in it of best practice in the area. They have been drawn up following an extensive review of the literature and in consultation with past and potential participants in the research - children with disabilities and their parents. It is hoped that a summary of key points from the guidelines will be prepared separately for children.
The guidelines aim to be comprehensive and to suggest principles that will guide the researcher on points that may not be specifically included. They should be read in conjunction with the accompanying discussion paper on issues to be considered by those carrying out research with children with disabilities.
The principles and values underlying guidelines such as these should be clear and they should be shared and agreed by all concerned as outlined in the previous section (see also Notes on ethical issues in research with children, (TCRC, 2002)).
The guidelines are organised according to the sequence of stages that usually make up the research process, as follows:
These stages and the guidelines suggested for each stage will apply whether the research project is a broadly based, epidemiological-type study using psychometric measures with a large sample or a total population, or a smaller, but equally valuable qualitative-type study. Some of the issues raised will cause difficulties and the researchers concerned will have to make decisions based on their knowledge of best practice. At each stage, specific elements of the research process will require attention and will involve making decisions. In an attempt to provide a model that is easy to remember and to implement, these elements have been identified for the purposes of these guidelines as being: