Research Data

Using the Theory of Planned Behaviour to predict self-management of hereditary haemochromatosis


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Using the Theory of Planned Behaviour to predict self-management of hereditary haemochromatosis
Date Record Created
Date Record Modified
Date Coverage
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Time Period
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Geospatial Location
  • Australia
  1. Type: brief

    Data collection from qualitative (focus group) and quantitative (online questionnaire) for haemochromatosis honours project

  2. Type: full

    Qualitative (focus group) data collection

    Semi-structured focus group interviews were held in local community libraries to explore participant's experiences of living with haemochromatosis and their self-management strategies. This was the first phase of a sequential mixed-methods study and was used as a basis for the quantitative survey. 

    Data were transcribed verbatim, then de-identified and uploaded to NVivo data management software where they were descriptively coded and thematically analysed.

    Data files includes the audio recordings and the NVivo project as follows:

    Focus group recordings in Windows Media Audio (.wma) format:

    • Group 1 17:09:2014.WMA
    • Group 2 30:09:2014.WMA 

    Files are also saved in Waveform Audio File (.wav) format to ensure ongoing access and long-term preservation.

    Nvivo project saved in both Mac and Windows formats:

    • New Haemochromatosis focus groups.nvpx 
    • New Haemochromatosis focus groups.nvp

    Transcripts and free text answers exported from NVivo in PDF format:

    • Focus group 1.pdf
    • Focus group 2.pdf
    • Free text answers.pdf

    Quantitative (online questionnaire) data collection

    The next phase of the study used a national online survey to investigate factors associated with optimal self-management in individuals with haemochromatosis. Data from the focus groups, a systematic literature review and a guide to writing TPB (Theory of Planned Behaviour) questionnaires informed design. 

    Optimal self-management was defined using two dependent variables: a self-reported serum ferritin (SF) within normal range as well as the intention to continue to have venesections (VS) as necessary (both binary outcome yes versus no/unsure). Multiple choice questions included demographics and details of haemochromatosis diagnosis and management. Five-point Likert scales were used to explore the domains of TPB, with 1 being the most negative response through to 5 being the most positive. 

    Data analysis was conducted using SPSS version 23. Descriptive statistics were used to express frequencies of responses to demographic questions and details of diagnosis and management. The Likert scale results were analysed to find mean and standard error of mean for each variable. Independent TPB variables were correlated with each of the two depended variables using independent t-tests (Mann-Whitney=MWU). Two logistic regression (LR) models regressed TPB variables and selected sociodemographic variables onto each of the dependent variables.

    Data files include the questionnaire, SPSS data (.sav) and SPSS output (.spv) files:

    • Questionnaire appendix. docx

    SPSS data files:

    • Complete responses.sav
    • Incomplete removed.sav

    SPSS Output files:

    • 1405 Complete responses crosstabs.spv
    • Binary ferritin means 1904.spv
    • Binary VS means 1904.spv
    • LR Binary SF.spv
    • LR Binary VS intention.spv
    • MWU SF.spv
    • MWU VS intention.spv
    • T test SF.spv
    • T test VS intention.spv

    The questionnaire and SPSS output files are also saved in PDF format to ensure ongoing access and long-term preservation. The SPSS data files are saved in comma-separated values (.csv) format.

    The full methodologies are available in the publications shown in the Related Publications links below.



  3. Type: note

    The questionnaire (quantitative data collection) is available for download. Qualititative data cannot be shared as it is sensitive. Access to the other data (quantitative, SPSS data) may be negotiated with the data manager/primary contact. 

Related Publications
  1. Pearce, Jessica, Ray, Robin A., McKenzie, Suzanne (2018) The voice of haemochromatosis journeys in regional Australia: a qualitative study exploring self-management. AJGP, 47(1-2), pp. 64-68.
  2. Pearce, Jessica, Ray, Robin A., McKenzie, Suzanne (2018) Achieving optimal self-management in hereditary haemochromatosis. AJGP, 47(9), pp. 625-631.
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  1. Managed by: Miss Jessica Pearce , , College of Medicine & Dentistry
Primary Contact
Dr Jessica Pearce,
  1. Dr Robin Ray ,
(no information)
Fields of Research
  1. 1199 - Other Medical and Health Sciences (1199)
Socio-Economic Objective
(no information)
  1. Self management
  2. Haemochromatosis
Research Activity
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Research Themes
Not aligned to a University theme
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License - Other
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Access Rights/Conditions
Dataset contains confidential or sensitive information. No access to data is permitted. Contact data manager for more information.
Quantitative data only may be accessed via negotiation with the data manager/primary contact. Once access to the data has been obtained via negotiation with the data manager, use of the dataset is governed by the CC-BY-NC licence. If you have difficulty, please contact for assistance.
Data Location
Online Locations
  1. Questionnaire_appendix.pdf (Supporting Material, Public)
Stored At
Secure data section of the Tropical Data Hub (TDH) archive - eResearch Centre, James Cook University, Townsville, Queensland, Australia
Pearce, J. (2018): Using the Theory of Planned Behaviour to predict self-management of hereditary haemochromatosis . James Cook University. (dataset). aa96abff94e4840a2f9e3bccfd4a51a0