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Applying Mixed Methods: Understanding The Child and Adolescent Perspective of THe Illness Experience
Transcript of Applying Mixed Methods: Understanding The Child and Adolescent Perspective of THe Illness Experience
St. Jude Children's Research Hospital
Applying Mixed Methods: Understanding The Child and Adolescent Perspective of the Illness Experience
The Good Day Study
This study represents the first to employ a mixed methods approach to explore QoL in children on active therapy for ALL
Quantitative analysis provided insights not found with the qualitative analysis
New domains to be included in future QoL Instruments
Spiritual functioning and meaning of illness
Changing themes through treatment
Differences among age, gender, risk group, and across time
Can aid the development of future instruments sensitive to age and gender in QoL
The effectiveness of using a simple QoL measure: asking two simple questions to get insight into QoL
Useful for practitioners who do not have enough time
Many instruments have been used to study Quality of life (QoL) in children with cancer.
Most of them lacked feedback from children through the development of items.
Do not expand on the different perspectives of QoL in different age groups, genders, and through time.
Quality of Life
Proposed to address methodological issues in assessing QOL in pediatric oncology.
“The combination of elements of quantitative and qualitative research approaches for the broad purposes of breadth and depth of understanding”
No studies utilizing this approach in QOL measurements in pediatric oncology patients
Can help address some shortfalls of other designs.
Part of a larger quality of life measurement objective within an institutional protocol.
Children with Acute Lymphocytic Leukemia (ALL).
Assessments were completed at 6 time points:
Children were asked to answer two questions:
Exploratory Sequential Design
Qualitative data were collected and coded to establish a codebook of children's responses.
Quantitative analysis to identify and test the codes generated from the qualitative phase.
To measure differences in code frequencies according to the variables included in the study.
What Makes a Good Day for You?
How Has Being Sick Been for You?
Coding was completed by 5 pediatric oncology nurses
Participated in eight training sessions facilitated by two of the researchers
Inter-coder agreement : 81-100%
Initial interviews coded jointly and were the basis for the coding dictionary
None of the codes occurred consistently with other codes.
Codes were distributed on 6 domains (categories) of QoL
Total codes identified and included in codebook was 52.
Each question captured an identified set of codes in response to the question.
Qualitative data were collected from all enrolled patients at the designated time points
Coded using the codebook
Each response was coded by three researchers to ensure consistency of coding
Data collection phase ran from 2002 until 2012.
Total coded text: 2200
19 responses could not be coded using our codebook
Coded responses entered into QDA miner program
A mixed-model qualitative data analysis software package for coding, and analyzing large collections
Comparisons based on inter group differences
Data were analyzed using descriptive frequencies and Chi-square, F-tests.
Do Usual/Go Places/Be Normal/At Home
No Sick/More Rest/Energy
No Hospital/Short Stay/Smooth
Good Mood/ Meanfl. Interactions
Boring/can’t do what I want
Good/Good Change/Good Place
New Experience/Not expected
Being Able to Eat
Just live / Spirit
No Friend/No Home/No like
Not bad/Used to it
Trust in God/Good thought
Children were more likely to state a good day as “Doing Usual” (p<.008).
“Playing my video games and watching TV and running around playing with her [my little sister]”
Saw a "Benefit" from their treatment than adolescents (p< .049).
Expressed that they were "Fine" more frequently (p< .026)
Females in comparison to males emphasized a good day as “Not Being Sick” (p<.005).
“When I feel good, when I can play, when I laugh a lot, not having to be here [St. Jude] all the time”
Emphasized having “Energy” (p=.048).
“Having lots of energy, being able to go out places, not feeling nauseated, seeing my friends and my sister”
"Energy" was more frequently mentioned in the Standard/High risk Arm (p< .008)
“Not Being Sick” was correlated with Standard/High risk arm (p=.021)
“Just if nothing goes wrong--like no bad muscle cramps, no joint pain, no headaches. You know, just doing okay”
“When I have no pain in my neck. Days like this--it just felt like a good day”
Adolescents expressed that being sick had changed their lives more than children (p=.005).
“It has actually made me a better person. I have always been tense, angry and selfish. I feel I need my family more. I'm more emotional, I cry more (teary eyed). I just have a better attitude towards life.
Saw it as a "New Experience" more than children (p=.004).
“Being sick has really changed my life a lot. The medicine makes you very emotional so you cry a lot and have mood swings and have good days and bad days”
“An unforgettable experience”
Stressed "Missing Home" (p=.016) more than children.
“I miss my house because I haven't been able to see it in two months. I miss my normal life, friends, family school and being at home.”
Adolescents had a higher emphasis on “Being Normal” (p<.005)
“When I feel like a normal kid.”
“When I do not hurt or ache. When my life becomes close to normal or feel normal”
Stressed on “Not Being Sick” (p<.005) as making a good day, when compared to children
“Not having to go to the hospital”
“Everything going right. No complications”
Expressed having "Energy" as making a good day for them more frequently than children (P< .0005)
Males had more emphasis on "Doing Usual" more frequently (p< .018)
Mentioned "Short Stay" as making a good day more frequently (p< .024)
Expressed seeing more "Benefit" (P < .049)
"Short Stay" significantly decreased through each time point (P< .0001)
T1:4.1% T4: 0%
" No Hospital" Decreased significantly (P < .0001)
T1: 10.1% T6: 0%
" No Sick" (P< .001)
T1: 16.2% T6: 8.1%
Females said it was " Bad Hard" more frequently (P< .002)
Mentioned "Can't Do" more frequently (p< .009)
Expressed it was "Harder" more frequently (p< .022)
Males described being "At the Hospital" more frequently (P< .006)
Said it was "Not Bad" more frequently (P< .0001)
Females mentioned "No Friends" more frequently (p< .038)
Mentioned "Bad Sick" more frequently (p< .39)
Expressed a "Good Change" more frequently (p< .024)
Children expressed getting "Benefit" more frequently (p< .021)
More emphasis on "Doing Usual" (p= 0.001).
Being "At Home" (p=.028)
The High/Standard Risk arm reported significantly more "Hard" than the Low Risk arm (p< .0001)
"No Home" significantly decreased as patients progressed in their treatment (p< .0001)
Code Book: 52 Codes
Total Patients= 150
Number of coded text: 2200 codes
2002 - 2012
6 time points
Day 40 Induction
Week 7 Consolidation
Week 48 Continuation
Week 120 Maintenance
Week 146 Maintenance (Boys)
2 years post treatment.
1) What makes a good day for you?
2) How has being sick been for you?
1)Symptoms (disease and treatment-related)
6)Meaning of being ill.
2)Age: Children (8-12 yrs) Vs. Adolescents (13-18 years)
3)Risk group: Low Vs. Standard/High
4)Time: data collection points
No conflicts of interest to be declared