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

Brief description

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

Full description

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.

Notes

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.