The Use of Focus Groups in the Development of the KIDSCREEN HRQL Questionnaire

Abstract

There is increasing interest in the public health sector in the health-related quality of life (HRQL) of healthy children. However, most HRQL instruments are developed for children with a chronic illness. In addition, existing questionnaires are mostly based on expert opinion about what constitutes HRQL and the opinions and views of healthy children are seldom included. In the European project KIDSCREEN, a generic questionnaire was developed for children between the ages of 8 and 18 on the basis of children’s opinions about what constitutes HRQL. Focus group discussions were organised in six European countries to explore the HRQL as perceived by children. There were six groups in each country, stratified by gender and age. The age groups were 8–9 years, 12–13 years, and 16–17 years, with 4–8 children in each group. Experienced moderators guided the discussions. The full discussions were audiotaped, transcribed and content-analysed. The discussions went smoothly, with much lively debate. For the youngest group, the most important aspect of their HRQL was family functioning. For both younger and older adolescents, social functioning, including the relationship with peers, was most important. Children in all groups considered physical and cognitive functioning to be less important than social functioning. These key findings were taken into account when designing the KIDSCREEN HRQL questionnaire for healthy children and adolescents, with more emphasis being placed on drawing up valid scales for family and social functioning. In addition, items were constructed using the language and lay-out preferred by the youngsters themselves. We conclude that focus groups are a useful way of exploring children’s views of HRQL, showing that an emphasis should be placed on constructing valid social and family scales.

Annex 1

Dimension 1: Physical well-being

This dimension explores the level of a child’s/adolescent’s physical activity, energy and fitness. The level of physical activity is examined with reference to the child’s/adolescent’s ability to get around the home and school and to play or do physically demanding activities such as sports, since a child’s/adolescent’s impairment does also affect physical activity. The dimension also looks at a child’s/adolescent’s capacity for lively or energetic play. In addition, the extent to which a child or adolescent feels unwell and complains of poor health is examined.

Dimension 2: Psychological well-being

This dimension examines the psychological well-being of the child/adolescent, including positive emotions and satisfaction with life. It specifically reveals the positive perceptions and emotions experienced by the individual. The questions look at how much a child/adolescent experiences positive feelings such as happiness, joy, and cheerfulness. They also reflect the person’s view of their satisfaction with life so far.

Dimension 3: Moods and emotions

This dimension deals with the extent to which the child/adolescent experiences depressive moods and emotions and stressful feelings. It specifically reveals feelings such as loneliness, sadness, sufficiency/insufficiency and resignation. Furthermore, this dimension takes into account how distressing these feelings are perceived to be. This dimension shows a high score for quality of life if these negative feelings are rare.

Dimension 4: Self-perception

This dimension explores the child’s/adolescent’s perception of self. It includes whether the appearance of the body is viewed positively or negatively. Body image is explored by questions about satisfaction with looks as well as with clothes and other personal accessories. The dimension examines how secure and satisfied child/adolescents feel about themselves as well as their appearance. They are meant to reflect the value somebody assigns to him/herself and the perception of how positively others value him/herself.

Dimension 5: Autonomy

This dimension looks at the opportunity given to a child or adolescent to determine what they do with his/her own social and leisure time. It examines the child’s/adolescent’s level of autonomy, which is seen as an important developmental issue for creating an individual identity. Autonomy refers to the child’s/adolescent’s freedom of choice, self-sufficiency and independence. In particular, the extent to which the child/adolescent feels able to shape his/her own life as well as being able to make decisions about day-to-day activities will be considered. The dimension also looks at whether the child/adolescent feels sufficiently provided with opportunities to participate in social activities, particularly in leisure activities and pastimes.

Dimension 6: Parental relations and home life

This dimension examines the relationship with the␣parents and the atmosphere in the home of the child/adolescent. It explores the quality of the interaction between the child/adolescent and parent or carer, and the child’s/adolescent’s feelings towards parents/carers. Particular importance is attached to whether the child/adolescent feels loved and supported by the family, whether the atmosphere at home is comfortable or not and also whether children/adolescents feel they are treated fairly.

Dimension 7: Social support and peers

This dimension examines the nature of the child’s/adolescent’s relationships with other children/adolescents. Social relationships with friends and peers are considered. The dimension explores the quality of the interaction between the child/adolescent and peers as well as their perceived support. The questions examine the extent to which the child/adolescent feels accepted and supported by friends and the child’s/adolescent’s ability to form and maintain friendships. In particular, aspects concerning communication with others are considered. It also explores the extent to which the person experiences positive group feelings and how much he/she feels part of a group and respected by peers and friends.

Dimension 8: School environment

This dimension explores a child’s/adolescent’s perception of his/her cognitive capacity, learning and concentration and feelings about school. It includes the child’s/adolescent’s satisfaction with his/her ability and performance at school. General feelings about school, such as whether school is an enjoyable place to be, are also considered. In addition, the dimension explores a child’s view of the relationship with his/her teachers. For example, questions include whether a child/adolescent gets along well with his/her teachers and whether the teachers are perceived as being interested in the student as a person.

Dimension 9: Social acceptance

This dimension covers the aspect of feeling rejected by peers in school. It explores both the feeling of being rejected by others as well as the feeling of anxiety towards peers.

Dimension 10: Financial resources

The perceived quality of the financial resources of the child/adolescent is assessed. The dimension explores whether a child/adolescent feels that he/she has enough financial resources to allow him/her to engage in a lifestyle comparable to other children/adolescents and provides the opportunity to do things together with peers.