Design and evaluation of technique and nursing care in pediatric radiotherapy

Project description

This funding application is an expansion (Study 2) of the ongoing multi-center study “Design and evaluation of technique and care environment in pediatric radiotherapy” (Study 1) (Appendix 2). The studies, collaboration between the Umeå Institute of Design, the Departments of Nursing and Radiation Sciences at Umeå University, and the radiotherapy (RT) clinics at Karolinska, Akademiska and Umeå University Hospital, focuses on the development of new innovative methods to reduce anxiety and worry among parents and children undergoing RT.
To evaluate the design interventions in the RT environment we have set up a comprehensive set of measures (interviews, surveys and scales) with focus on both parents and children. We have also arranged a dedicated course focusing on improving the pediatric RT experience with design masters’ students in Umeå. In the ongoing project, these interviews, surveys, scales and interactions with the designers are all means to reach the goal of creating new innovative methods with proven benefit, but the outcome of the methods does in itself hold a scientific value. To our knowledge there are currently no published comprehensive investigations into how parents and children cope with RT, which tools and strategies that are most common and important. Though studies are performed in the field of preparations before magnetic resonance imaging 1. In addition, there is very limited descriptive literature on the integration of this knowledge into the design of healthcare environments, technologies, and support materials.
In the present project (Study 2) we want to make use of all the surrounding material collected in our ongoing project (Study 1) to gather, translate, and disseminate knowledge about the tools and techniques currently used and needed for the alleviation of anxiety and discomfort in children and families during the RT process. The understanding of these aspects will be of fundamental importance for the development of the national care strategy for pediatric RT, within the Scandion Clinic.
Specific aims
1. Analyze and describe children’s and parents experiences of going through the RT process.
2. Explore staff’s experiences of helping children and families to manage the RT process.
3. Synthetize the gathered knowledge of children’s’ and families’ needs during pediatric RT into key insights and opportunities for innovation using a human-centered design approach.

Figure 1. Diagram of the difference between the initial project and the aims of this extended project proposal.




Background


Radiotherapy per se is a non-invasive treatment; although it can be both stressful

and challenging for children. Children are exposed to a new, unknown, and highly technological environment with large radiation equipment, and the child can be threatened by requirement of remaining alone in a room during treatment, which can cause stress and

anxiety2,3. For both parents and children, the difficulties of understanding how radiation works and as well as expected effects and side effects, can give birth to anxiety-ridden feelings. In particular, anxiety can increase when an immobilization device is required to ensure a fixed position for radiation2,4. Anxiety can make it difficult or impossible for children to be left alone during treatment, and as a result, sedation and anesthesia are sometimes utilized to put the child to sleep for the procedure. However, there are several advantages to RT treatment without sedation or anesthesia 4,3. The child experience decreased side effects, less disturbance in daily life, especially with sleep and nutrition, and RT without anesthesia is less expensive 3. Psycho-educational programs5, audiovisual interventions6, and hypnosis 7 are interventions that have all been shown to reduce the need for anesthesia during RT for young childhood cancer patients.
Although the RT process is an encounter between the most advanced technology in health care and a child, few studies have investigated the child’s and the families’ view of this specific procedure. We found one study where children with brain tumors undergoing RT in UK described it as “a drag”: the boredom of waiting and the discomfort of treatment8. They suffered from fatigue, nausea, headaches and other symptoms. Play and school rooms, toys, and organized activities helped maintain normality and distraction during RT treatment. The children suggested improvements in the environment including specialized waiting areas, ward décor, and games, in addition to having a parent close by, which provided the children comfort, support and helped them sleep at night.
In the Swedish context there are, to our knowledge, no published descriptive studies on children’s and parents’ experiences of going through RT, nor are there descriptions from the staffs’ perspective. There is also a paucity of studies where mothers’ and fathers’ experiences of being with their child in the RT department are captured separately. In addition, while the treatment technologies have been proven to cause anxiety in children, the transfer of this knowledge into the designs of these technologies and environments, as well as the preparation and support materials provided to children and their parents, is also sparsely described within healthcare research. It is, however, being investigated by individuals from within other domains, such as human-centered design research9,10.



Working plan, methods
The majority of the material is collected in Study 1. The additional data collection for Study 2 will be the interviews with the personnel and structured evaluation of the design process. The analyses of the comprehensive data will be performed within Study 2. Table 1 below summarizes the raw data. The proposed extended study has a multi-method design where both qualitative data from semi structured interviews with families and staff and quantitative data from measurements of anxiety and health related quality of life (HRQoL) will be analyzed, merged together with ethnographic data from the human-centered design approach, and synthesized into a comprehensive description of different perspectives of going through the RT process and into design directions.

Table1. Overview of the raw data used in the proposed project. The columns marked # gives the planned number of participants for each activity.
Qualitative # Quantitative #
Children Interviews(1) Drawings (2) 36 Scales(3)), Verbal description of worry (4) 140
Parents Interviews(1) 36x2 Scales(5), Surveys(6) 140x2
Personnel Interviews(1) 15(*)
Designers Observation, Interviews
(1) Semi-structured interviews by professional interviewers (end of treatment period)
(2) Child drawings during the interview
(3) FAS/VAS scales depending on age (4 times during treatment period)
(4) Verbal descriptions of the child’s worry (4 times during treatment period)
(5) VAS scales (4 times during treatment period)
(6) PedsQL survey (3 times during treatment period)

(*) Raw data collected within the proposed project
The families included in the interview part of the study are stratified based on gender, age of the child, and treatment site.
The interviews will be recorded and transcribed verbatim for the research group, who will listen to the recordings and/or read the transcripts continuously during the data sampling period. Essential content from the interview text will be sorted out into categories and themes elucidating similarities and differences in important parts of the personal experiences described by the families, i.e. a content analysis will be performed11. During the interviews, children ages 5-11 years old will also be asked to draw a picture, and the drawing will be evaluated according to the Swedish version of the Child Drawing: Hospital Manual12.

A self-report of perceived worry will be obtained for children ages 3-10 years old by the Facial Affective Scale (FAS)13. For adolescents and parents, the Visual analogue Scale-Anxiety (VAS-Anxiety) 0-10 cm will be used instead14. Verbal descriptions of current worry will also be obtained from the child at each FAS/VAS evaluation and categorized as either “no worry = 0, a little worry = 1, much worry = 2”15. The PedsQL™ Family Impact Module16, an instrument designed to measure the impact of pediatric chronic health conditions on parents and the family, will be given to and scored by both parents. It measures parent self- reported physical, emotional, social, and cognitive functioning, communication, and worry.
The instrument is available in English, Spanish, Arabic and Swedish. The VAS/FAS ratings, HRQoL scores and verbal descriptions of worry for the control and intervention group will be compared. The need for general anesthesia or other sedatives for the child during RT will be recorded and compared between groups.

In using a combination of data collection methodologies that focus on children of different ages, developmental stages, and communication strengths -- talking during individual interviews, drawing a picture, describe their feelings in combination with pointing at a facial rating scale -- an overall picture or ‘mosaic’ of the child’s experience might be captured8. To describe different aspects of the phenomenon “safe children and families”, a mixed methods interpretation of data will be performed17. The quantitative measures will give information on perceived worry within the patient population and the qualitative data will highlight individual unique experiences of going through the RT process. Interview data expressing significant findings will be extrapolated and compared to quantitative ratings, i.e. significant distress or satisfaction in RT situations and experiences of the interventions implemented.

Human-centered design (HCD) places emphasis upon understanding human needs and how design can respond to these needs. HCD processes focus on creating new solutions for the world, beginning with examining the needs, dreams, and behaviors of the people we want to affect with our solutions18. The collaborating design students from Umeå Institute of Design has employed a commonly utilized HCD research approach, ‘quick’ ethnographic methods, to understand and problematize pediatric RT for the children and their parents undergoing this experience. ‘Quick ethnography’ is a method for collecting and analyzing high-quality ethnographic data in a shorter timeframe than standard ethnography, i.e., 90 days or less, and it will enable the design students to gather rich data without direct interaction with the objects of study19. After aggregating, editing and condensing the insights, the students have now identified opportunities for innovation within this clinical environment and created an intervention that has been installed within the participating RT clinics. The implementation of interventions has started February 2014.

International and national collaborations
As described in the introduction the study is designed as a unique collaboration between three Swedish pediatric RT centra, the Swedish working group for pediatric RT, nursing researchers and the well-known Institute of design at Umea University with its international students and researchers. Collaboration is also initiated with the research group at Lunds University (E Törnqvist) running a project within the same field.

Ethical reflections
The preliminary results reveal that the families where a child is going through RT have a hard time and to participate in a study could be seen as another burden for the child and the parents. Though to our experience telling about difficult situations in an interview mostly is perceived positive and as an ease. The ratings of anxiety and the scales are perceived as quick and easy to fill in.
Five chosen publications from the research group
VL and co-applicants do not yet have publications in the specific topic of experiences of RT and psychological preparation for children and families during RT. VL has publications on experiences of going through surgery, distraction (guided imagery), and alleviation of pain during procedures in children and infants and health related quality of life in children. VL has also submitted manuscripts on family systems nursing. TN has published on human-centered design research approach to improving the cancer patient experience during RT. CÅ-B has made her thesis on interviewing children with cancer and their parents on experiences of comfort. JL and KN have publications in the field of pediatric RT within the Swedish working group for pediatric RT. GE has made here theses based on interviews with adolescents diagnosed with cancer regarding coping and their experiences about consequences of the disease.


1. Rullander A-C, Isberg S, Karling M, Jonsson H, Lindh V. Adolescents' Experience with Scoliosis Surgery: A qualitative study. Pain Management Nursing 2013 Mar;14(1):50-9.
2. Mullaney T, Pettersson H, Nyholm T, Stolterman E. Thinking Beyond the Cure : A Case for Human Centered Design in Cancer Care. Int. J. Design Vol 6, No 3 (2012)
3. Angström-Brännström C, Norberg A, Strandberg G, Söderberg A, and Dahlqvist V. Parents' experiences of what comforts them when their child is suffering from cancer. J Pediatr Oncol Nurs. 2010 Sep-O ct; 27(5):266-75
4. Kristensen I, Agrup M, Bergström P, Engellau J, Haugen H, Martinsson U, Nilsson K, Taheri-Kadkhoda Z, Lindh J, Per Nilsson. Assessment of volume segmentation in radiotherapy of adolescents; a treatment planning study by the Swedish Workgroup for Paediatric Radiotherapy. Acta Oncologica 04/2013
5. Engvall G, Cernvall M, Larsson G, von Essen L, Mattsson E. Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis. PLoS One 2011 6(12):e29001.
References to the project plan

1. Törnqvist E. Going Through Magnetic Resonance Imaging: Patient’s Experiences and the Value of Information and Preparation for Adults and Children, Lunds University; 2010.
2. Bucholtz JD. Comforting children during radiotherapy. Oncol Nurs Forum. Jul 1994;21(6):987- 994.
3. Filin A, Treisman S, Peles Bortz A. Radiation therapy preparation by a multidisciplinary team for childhood cancer patients aged 31/2 to 6 years. J Pediatr Oncol Nurs. Mar-Apr 2009;26(2):81-85.
4. Scott L, Langton F, O'Donoghue J. Minimising the use of sedation/anaesthesia in young children receiving radiotherapy through an effective play preparation programme. Eur J Oncol Nurs. Mar 2002;6(1):15-22.
5. Haeberli S, Grotzer MA, Niggli FK, et al. A psychoeducational intervention reduces the need for anesthesia during radiotherapy for young childhood cancer patients. Radiat Oncol. 2008;3:17.
6. Willis D, Barry P. Audiovisual interventions to reduce the use of general anaesthesia with paediatric patients during radiation therapy. J Med Imaging Radiat Oncol. Jun 2010;54(3):249-255.
7. Bertoni F, Bonardi A, Magno L, et al. Hypnosis instead of general anaesthesia in paediatric radiotherapy: report of three cases. Radiother Oncol. Aug 1999;52(2):185-190.
8. Soanes L, Hargrave D, Smith L, Gibson F. What are the experiences of the child with a brain tumour and their parents? Eur J Oncol Nurs. Sep 2009;13(4):255-261.
9. Mullaney T, Nyholm, T., and Edvardsson, D. . Wellbeing in Healthcare Environments: A Human-Centered Design Research Approach to Improving the Cancer Patient Experience during Radiation Therapy. 1st European Conference on Design 4 Health. Vol In Proceedings 255-265. Sheffield; 2011.
10. Mullaney T, Pettersson, H., Nyholm, T., Stolterman, E. . Thinking beyond the Cure:
A Case for Human-Centered Design in Cancer Care. International Journal of Design 2012;6(3).
11. Graneheim U, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. Feb 2004;24(2):105-112.
12. Wennstrom B, Nasic S, Hedelin H, Bergh I. Evaluation of the Swedish version of the Child Drawing: Hospital Manual. J Adv Nurs. May 2011;67(5):1118-1128.
13. McGrath PA, Seifert CE, Speechley KN, Booth JC, Stitt L, Gibson MC. A new analogue scale for assessing children's pain: an initial validation study. Pain. Mar 1996;64(3):435-443.
14. Crandall M, Lammers C, Senders C, Savedra M, Braun JV. Initial validation of a numeric zero to ten scale to measure children's state anxiety. Anesth Analg. Nov 2007;105(5):1250-1253, table of contents.
15. Peterson C, Noel M. 'I was just screeching!': comparing child and parent derived measures of distress. Stress Health. Oct 2012;28(4):279-288.
16. Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2:55.
17. Ostlund U, Kidd L, Wengström Y, Rowa-Dewar N. Combining qualitative and quantitative research within mixed method research designs: A methodological review. Int J Nurs Stud. Nov 2010.
18. IDEO. Human-centered design toolkit: An open-source toolkit to inspire new solutions in the developing world p 6. Chicago: IL: IDEO.; 2011.
19. Handwerker WP. Quick ethnography: A guide to rapid multi-method research. Walnut Creek, Ca: Alta Mira Press; 2