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Questionnaire content (adult)
Questionnaire content (child)
Overall content changes to PALS
Content changes to adult questionnaire
Content changes to child questionnaire
The role of the Census and the linkage to PALS
Data dissemination

Questionnaire content (adult)

The PALS questionnaire collects information on various aspects of the individual's every day life. Information gathered about these respondents assists the development of policies to further the quality of life for those who have an activity limitation or disability. Some of the different subject areas of questioning include:

  • Type of disability and severity
  • Aids and assistive devices
  • Employment history and training
  • Education characteristics
  • Main condition and cause
  • Care needed and received
  • Local and long distance transportation
  • Housing needs and modifications
  • Internet use
  • Social participation
  • Plus household information from the census

Questionnaire content (child)

Similar to the adult questionnaire, the child specific questionnaire collects information on the child. In this situation, the parents of the children are asked to respond to the questions. There are also questions that ask the parents about their impressions of how their lives are impacted by having a child with a limitation or disability.

The two questionnaires are separated because the issues and concerns surrounding adults and children when dealing with disability and limitation differ depending on age and circumstance. However, there are many modules of questions that are asked for both the adults and the children. Examples of this are the census filter questions and the PALS screening questions.

For the child questionnaire, the following information is collected:

  • Type of disability and severity
  • Aids and assistive devices
  • Main condition
  • Help received and needed
  • Diagnosis
  • Child care - type and satisfaction
  • Education - special education, unmet needs, transportation
  • Leisure and recreation
  • Home accommodations
  • Impact on the family
  • Plus household information from the census

Overall content changes to PALS

There have been some noteworthy modifications to both the child and adult questionnaires for the 2006 PALS. Throughout the content development process for the 2006 survey, it became clear through research and discussions with the advisory group that there was a need for additional information surrounding disability issues. Many of the already existing sections were enhanced by the addition of new questions focusing on specific issues not already explored.

A. Internet use

Access to information is a common barrier faced by persons with a disability or limitation. With the advancement in the areas of adaptive technology, internet use has become more user friendly to persons with activity limitations. Computer and the internet can impact both the access to information and leisure aspects of life for those with a disability.

In conjunction with the idea of access to information, the internet can also be used as a method to take part in training. This is an extremely viable solution for people who have difficulty in mobility and navigation. The internet can provide the same types of training courses as could be found in colleges and universities without the obstacle of mobility.

Taking into account the number of areas the internet could be used to aid a person with a disability, a line of questioning was recommended by the PALS advisory group. These modifications were suggested for both the child and adult questionnaire for PALS 2006 in order to establish the impact the internet has on the daily lives of Canadians with activity limitations and the level of importance such technology has become in their day to day lives.

B. Health utility index (HUI)

The Health Utility Index was another line of questioning that is new to PALS 2006 in both the child and adult questionnaires. This is a quantitative health measurement that fits nicely into the framework of PALS.

The HUI collects health status information on topics such as hearing, sight, speech and overall mental well-being. It is a generic health status index that is able to synthesize both quantitative and qualitative aspects of health. The index, developed at McMaster University's Centre for Health Economics and Policy Analysis, is based on the Comprehensive Health Status Measurement System (CHSMS). It provides a description of an individual's overall functional health, based on eight attributes: vision, hearing, speech, mobility (ability to get around), dexterity (use of hands and fingers), cognition (memory and thinking), emotion (feelings), and pain and discomfort.

The scores of the HUI embody the views of society concerning health status. Each person's preferences are represented as a numerical value. This index is also used by the National Population Health Survey.

The HUI has the robustness to provide a reliable quantitative measure for health. It was added to coincide with the more general questions pertaining to the respondent's health. Furthermore, it allows comparison of PALS to other surveys that also use the HUI. Finally, it serves as a tool of validation of the PALS filter questions.

C. False positive module

This was a new module for PALS 2006 for both the children and adults. A false positive occurs when a person indicates in one of the filter questions on the census form that he/she or someone in their household has a limitation and then reports on PALS that they do not. This line of questioning was added because PALS 2001 experienced approximately a 25% false positive rate between the Census and PALS. The false positive module inquires about the reasons a person reported a limitation on the Census but not on PALS. Understanding these reasons allows refinement of the sample design and sheds light on potential improvements for the future.

There are several different reasons for how false positives occur. It could be an issue of proxy when a person indicates a limitation on the Census but the actual respondent does not see themselves as having a limitation or disability. It may also be as simple as the person reading the question not fully understanding what it is asking. The majority of false positives were people recovering from injuries, illnesses or surgery at the time of the Census and who were no longer limited at the time that PALS took place.

Because this is a very important issue for PALS, a number of qualitative studies investigating the reasons for false positives took place in early 2007 shortly after collection ended. An analysis of the results from these qualitative studies has taken place. A full analysis of the false positive rate from PALS 2006 will take place in the upcoming months. Further information concerning false-positives from PALS 2006 can be found later in this document.

D. Care received and needed by the respondent

The modules concerning every day activities shifted focus slightly in order to gather more detailed information from the caregiver perspective. This was accomplished mainly by ensuring the modules themselves were "activity" specific and "caregiver" specific. By relating these two dimensions, a more clear and detailed picture is presented.

E. Aids and devices

As mentioned earlier, having proper access to technology is essential when having an activity limitation or disability. The requirement and maintenance of aids and assistive devices was an area to explore in PALS 2006. Additional content on this topic was added to the existing 2001 PALS material to examine the frequency of use of aids, payment of costs, service required, capacity to pay for service, replacement cycles, and capacity to pay for replacement.

In many cases, adaptive technology makes it possible for a person with a disability to accomplish daily tasks and take part in leisure activities. Establishing the costs and longevity of assistive equipment is essential in order to ensure policies are put in place to make certain that equipment is accessible to those who need it.

F. Housing

The housing module received some minor content additions to provide information on the sources of funding for housing modifications and payment arrangements, activities that may be limited by the design and/or layout of the home, and the impact of these limitations.

Consultations with researchers and stakeholders highlight the importance of understanding the dynamics involved in housing modifications for people with activity limitations. If proper modifications are not in place, it can make it virtually impossible for a person with an activity limitation to move throughout or function within their own environment.

Content changes to adult questionnaire

A. Work related training - experience and barriers

The work-related training portion of PALS was significantly enhanced to provide more detail on the amount and types of training available to people with activity limitations. Of particular interest were any barriers to training they may face, use of new skills and reasons for taking workplace training.

The advisory committee suggested increasing the workplace training content to better understand the dynamics of workplace training for people with activity limitations. The idea of work place training is not always the easiest task for an employee with a disability. In many situations, there are numerous barriers to employees with activity limitations receiving training due to lack of accessible materials and trainer sensitivity.

B. Short and long distance travel

Research has indicated that manoeuvring around the environment can be a major challenge for those who have a disability or limitation. It was suggested by the advisory committee to expand the line of questioning on both short and long distance travel for PALS 2006.

Public transit is not always accessible to those with varying disabilities or limitations. Improvements are slowly taking place and increasing accessibility, but this is an aspect of life for a person with an activity limitation that can have a major effect on movement around their environment and therefore has an impact upon their level of independence.

Additional questions on local travel can aid in providing detailed information on how people who are limited or disabled move around their environment. There are many different methods by which short distance travel can be done but in order to assist future programs and ensure continued advancements, it is essential to understand the issues preventing travel.

Information on long distance travel is just as vital as short distance travel. There are many obstacles that a traveler with a disability can face when attempting to take an air plane, train or bus. For example, the presence of a wheel chair or service animal can cause a significant difficulty for the person. As with short distance travel, it is crucial to understand a respondent's travel experiences, as well as the types of barriers they face.

These questions give the respondent the opportunity to express the type and frequency of the difficulties he/she may experience on a regular basis and which mode of transportation poses the greatest challenge and the reasons for the challenge.

C. Employment

The employment section of the PALS 2006 survey has undergone the greatest number of changes. PALS 2006 more clearly separates people who have retired from a job or business versus people who were not successful in the labour market and have stopped looking for work.

A drawback in the 2001 survey concerns the method by which the respondents were flowed to questions in the employment section. The 2001 PALS did not differentiate between people who had retired from a job or business verses those who had stopped looking for work but had indicated on PALS 2001 they were retired. The dynamics of these two groups are dramatically different and it was essential that these groups be differentiated in the 2006 survey.

There are many different issues facing these two very diverse groups of people. Those who are able to work but can not find work due to their limitation have a story quite different from those who are retiring. Often there is the desire to work but for different reasons: that is, they are unable to obtain employment. It is these barriers to employment that are vital to identify in order to find solutions.

Similarly, those facing the challenges of going through retirement with the presence of an activity limitation or disability will have a differing viewpoint on the experience from someone without a difficulty. In order to take this into account, additional content was added to the retirement module to examine the factors related to the decision to retire and the role that the condition may have played in the decision.

Previous research has illustrated the complexity of the retirement decision and how this decision can be further complicated by the presence of an activity limitation. It is on this basis that a decision to define these two groups differently was made.

Content changes to child questionnaire

As well as making some improvements to existing questions, PALS 2006 has also been updated with the addition of entirely new questions. This new content has been included to ensure that any gaps in information present in the previous PALS are not left unexamined in 2006.

A. Impact on the family of having a child with a disability

A line of questioning concerning the impact on the family having a child with a disability or limitation was new in 2006. Research has demonstrated that having a child with a disability can impact the family in many different ways and on many different levels.

The impact on a family of a child with a disability is multidimensional. In some cases one or both parents will leave their employment in order to stay at home with the child. This can lead to enormous financial burden on the family as well as family stress.

B. Experience and barriers in child care

The topic of childcare is at the forefront for many young Canadian families in our society today. Finding a suitable childcare arrangement for most families can be a difficult task when the child does not need any special accommodations. The process of finding appropriate childcare arrangements for children requiring special accommodations may be even more challenging.

Often it is difficult for a family to find a childcare provider who is able to offer the type of care required for a child with a limitation. Facilities may not offer the modifications to the environment needed to accommodate a child with severe physical disabilities. The childcare providers may not have the skills required to provide proper care. An example of this may include a deaf child who uses sign language to communicate.

Cost is always another important issue that needs to be explored. If children with activity limitations require a specialized childcare arrangement due to their limitation, it is important to understand the cost implications for the family. There are specific questions in the PALS 2006 that collect information on many realms of the childcare experience that will assist in providing a clearer overall picture.

C. Special education programs

Since 2001, there has been a significant growth in the integrated school system. Segregation is not as common in 2006 as it had been only 5 years ago. In many cases, the child with an activity limitation or disability can receive adapted courses and proper accommodations in a local school as opposed to having to travel far distances to attend a segregated school.

It was necessary for PALS to change the questionnaire in 2006 to reflect these types of changes to specialized education. Questions have been rephrased to be applicable to both children attending an integrated or a segregated school.

The role of the Census and the linkage to PALS

PALS respondents are advised at the time of collection that information they provide to the survey will be added to information already provided to the 2006 Census. Adding Census data to the PALS master file will allow the addition of information on the respondent's socio-economic and household characteristics. Furthermore, a No sample will be available that will allow comparison between persons who are disabled and non-disabled.

Data dissemination

The dissemination of the PALS survey will be in stages from December 2007 to September 2008. Because the household variables are taken from the census, PALS can not release this data until the census has released the equivalent variables.

The first release in December 2007 will provide disability rates for both children and adults. The May 2008 Release of data from PALS 2006 will include data concerning care, aids and assistive devices and impact on the family. Following the May release, the July 2008 Release will present data on education and employment. Finally, the last release in September 2008 will include income and housing data.

It is planned that each release will focus where possible on change from 2001 to 2006. Furthermore, also included will be a package of relevant tables by province, age, sex, type of disability and severity. Finally, it is intended to package these tables at the end to create profiles of disability by type of disability and by province.

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