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

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

    Data Record Details
    Data record related to this publication Using the Theory of Planned Behaviour to predict self-management of hereditary haemochromatosis
    Data Publication title Using the Theory of Planned Behaviour to predict self-management of hereditary haemochromatosis
  • Description

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

  • Other Descriptors
    • Descriptor

      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.

       

       

    • Descriptor type Full
    • Descriptor

      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. 

    • Descriptor type Note
  • Data type dataset
  • Keywords
    • Self management
    • Haemochromatosis
  • Funding source
  • Research grant(s)/Scheme name(s)
  • Research themes
    Not aligned to a University theme
    FoR Codes (*)
    SEO Codes
    Specify spatial or temporal setting of the data
    Temporal (time) coverage
  • Start Date
  • End Date
  • Time Period
    Spatial (location) coverage
  • Locations
    • Australia
    Data Locations

    Type Location Notes
    Physical Location Secure data section of the Tropical Data Hub (TDH) archive - eResearch Centre, James Cook University, Townsville, Queensland, Australia
    Attachment Questionnaire_appendix.pdf Questionnaire - quantitative data collection (PDF format)
    The Data Manager is: Jessica Pearce
    College or Centre
    Access conditions Restricted: no access
  • Alternative access conditions
  • Data record size 2 zip files: 616 MB
    Select or add a licence for the data
    The data will be licensed under
  • Other Licence
  • Statement of rights in data 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 researchdata@jcu.edu.au for assistance.
  • Data owners
      James Cook University
    Citation Pearce, Jessica (2018): Using the Theory of Planned Behaviour to predict self-management of hereditary haemochromatosis . James Cook University. https://research.jcu.edu.au/data/published/b8f03c9652fa609ce81b17fe9c8d1582