What helps adolescents with cerebral palsy to be physically active? Developing a program to support youth based on focus groups.

In Brief ©Aniek Claassen and Jan Willem Gorter, 2011

In this communication we want to share our study protocol as part of a program to support physical activity for youth with cerebral palsy (CP) using a focus group methodology. In paediatric rehabilitation the use of focus groups is relatively new but gaining popularity. Focus groups can give adolescents with CP the opportunity to voice their opinions on physical activities.

What do we know about physical activity in adolescents with cerebral palsy (CP)?

  • CP is the most common form of childhood physical disability and comes with limitations in mobility; the teenage years are often associated with an increase in these limitations (Brunton & Bartlett, 2010; Orlin et al., 2010; van Eck et al., 2008).
  • On average adolescents with CP have lower fitness and physical activity levels than their healthy age related peers (van den Berg-Emons et al., 1995; van Eck et al., 2008).
  • Reduced physical fitness is likely to increase the risk of later life health problems, such as obesity and poor cardiovascular health (Morris, 2008).
  • Fitness training alone for adolescents with CP is not effective enough for them to stay physically active (Verschuren et al, 2008).

Why are we doing this study?

  • Interventions that promote physical activity and fitness in combination with an approach that encourages mobility and an active lifestyle are needed for adolescents with CP.
  • To develop such a program (which we have named Stay-FIT) we need to understand more about factors influencing physical activity behaviour in adolescents with CP. As researchers of the Stay-FIT study, the research question we would like to answer is: "What makes it easy or hard for adolescents with CP to become and to stay physically active?"

Why did we choose focus groups?

  • Focus groups are exploratory in nature and apply to the study population and research question (ambulatory and non-ambulatory youth with CP in an age range 10 to 18 years),
  • Focus groups on physical activity have not been used with this population to date. During a focus group, adolescents get the opportunity to voice their own opinion and also hear the opinion of others.

What is a focus group?

  • Focus groups are semi-structured group meetings, which intend to gather information on a certain topic based on the participants' interactions.
  • Focus groups are unique because they allow the investigator to collect data from both individuals and the individual as part of a larger group.

Focus group preparation

  • In preparation for the focus groups, participants will be sent a demographic form, a questionnaire about physical activity, and a consent form. The answers to the questions will be used as a starting point for the focus group discussions.
  • Participants that are under the age of sixteen will be asked to sign an assent form as they are not legally authorized to sign their own consent for participating in this study. A legally authorized representative will also sign the assent form alongside the signature of the participants that are under sixteen.

Focus group procedure

  • Prior to the start of the meetings, the facilitator and the assistant of the focus group will introduce themselves to the participants. Informal conversation will be used to help the participants feel comfortable and to better understand each participant.
  • Ideally, the more passive participants should be placed across from the facilitator. The more dominant people should be placed next to the facilitator.
  • The focus groups will be audio and videotaped for recording purposes.

How to organize a focus group?

Participants

  • This study will aim for six to eight participants per focus group. If there are fewer than 5 participants, group dynamics and interaction could be limited. If there are more than 10 participants there may not be enough time to let every participant express their view.
  • During a focus group the aim is to reach saturation (i.e. no new ideas or themes emerging) on a certain topic. A minimum of 4 to 5 focus groups is usually required to reach saturation (Crabtree & Millers, 1999). This study plans to have 6 focus groups where saturation will be checked following each meeting. If saturation is reached, we will stop recruiting participants for new focus groups.

Facilitators

  • The focus groups will be lead by two persons; a facilitator and an assistant.
  • A focus group facilitator plays an essential role in conducting the group and will guide the discussion.
  • In conducting a focus group, a facilitator requires both observational and facilitating skills, which helps the facilitator to engage all participants in the discussion (both very active participants and the more passive ones), keep the conversation on topic, ensure smooth transition between topics, and keep the group enthusiastic.
  • The assistant will make notes, take care of audio and video recordings and add topics of discussion to the flipchart. The assistant will also observe the body language of the participants and take note of points that should be explored further.

Content focus group

During the focus group we aim to answer the following questions:

  1. What are you doing to be physically active and what helps you to stay physically active?
  2. What is keeping you from doing the activities you want to do?
  3. What could be a solution for the things that keep you from being physically active?

  • On the flip-chart the different themes identified from the questionnaires will be listed. There will be one column addressing the things that make it hard to be physically active and one column addressing the things that assist with being physically active. During the focus group new ideas can be added and solutions can be discussed.
  • In order to build on previous research on the barriers and supports of physical activity four themes were identified (motivation, physical support, social support, attitudes), which will be mentioned if participants do not raise these themes themselves.
  • The focus group discussion will end with an open-ended question period asking about what the optimal PA program would look like.

Data management and analysis

  • Audiotapes from the video recordings will be transcribed into textual data.
  • A content analysis approach will be used to analyze the transcripts. This approach involves coding statements based on their key concepts, combining these coded concepts into themes, and refining the identified themes.

Want to know more? Contact:

Jan Willem Gorter, MD, PhD, FRCPC gorter@mcmaster.ca

Acknowledgements

This pilot-project is part of the Stay-FIT study and is funded by the Ontario Federation for Cerebral Palsy. The following members of the Stay-FIT study Group participate in the research program: Robert Palisano, Brian Timmons, Virginia Wright, Peter Rosenbaum. We also thank Maureen MacDonald, Marilyn Wright and Denise McArthur for their valuable contributions to the project.

  • Click here for list of references

    Brunton, L. K., & Bartlett, D. J. (2010). Description of exercise participation of adolescents with cerebral palsy across a 4-year period. Pediatric Physical Therapy : The Official Publication of the Section on Pediatrics of the American Physical Therapy Association, 22(2), 180-187.

    Crabtree, B. F., & Millers, W. L. (1999). Doing qualitative research, second edition (second ed.). United States of America: Sage Publications, Inc.

    Morris, P. J. (2008). Physical activity recommendations for children and adolescents with chronic disease. Current Sports Medicine Reports, 7(6), 353-358.

    Orlin, M. N., Palisano, R. J., Chiarello, L. A., Kang, L. J., Polansky, M., Almasri, N., et al. (2010). Participation in home, extracurricular, and community activities among children and young people with cerebral palsy. Developmental Medicine and Child Neurology, 52(2), 160-166.

    van den Berg-Emons, H. J., Saris, W. H., de Barbanson, D. C., Westerterp, K. R., Huson, A., & van Baak, M. A. (1995). Daily physical activity of schoolchildren with spastic diplegia and of healthy control subjects. The Journal of Pediatrics, 127(4), 578-584.

    van Eck, M., Dallmeijer, A. J., Beckerman, H., van den Hoven, P. A., Voorman, J. M., & Becher, J. G. (2008). Physical activity level and related factors in adolescents with cerebral palsy. Pediatric Exercise Science, 20(1), 95-106.

    Verschuren, O., Ketelaar, M., Takken, T., Helders, P. J., & Gorter, J. W. (2008). Exercise programs for children with cerebral palsy: A systematic review of the literature. American Journal of Physical Medicine & Rehabilitation, 87(5), 404-417.