Author
Study Design: A qualitative phenomenological method to investigate the conversations which may or may not have occurred prior to the commencement of NIV when the respiratory muscles started to fail in MND. Families, significant others and clinicians will be asked to recall their experiences surrounding the communication and experiences surrounding the initiation and ultimate removal, of NIV.
Primary aim: The anticipated outcome of this research is an improved understanding of the communications
which surrounds the decision whether to initiate or refuse NIV, and include communication and discussions regarding the eventual withdrawal of NIV. The impact such understanding this study aims to provide, may assist health professionals with the difficult conversations surrounding the terminal phase of the disease and to assist to communicate clear information to patients and their families explaining the implications of the commencement and withdrawal of NIV
Data collection and analysis: Data will be collected from two distinct sources. Firstly families and significant others who have lived with a person with a diagnosis of MND, will be asked to recall their experience(s) of the conversations which rnay (or may not) have occurred prior to the commencement of NIV for the patient diagnosed with MND. The method design incorporates an invitation to take part in the research and acceptance to participate via an explanation of the research and invitation to participate, posted on the Motor Neurone Disease Association
of Western Australia (MNDA WA) website. Clinicians will be invited to recall their experiences and will be invited to partake in the research by their association with MND, palliative care services, hospitals, specialist centres (neurologists, respiratory physicians and specialist nurses) and invited by email, letter or face-to face discussion to partake in the research.
It is anticipated that by using a personal semi structured interview method, the researcher will be able to obtain in-depth responses which will be transcribed verbatim. An interpretive phenomenological analysis (IPA) is the method used to describe the experience of participating in the study. The method of analysis will include thematic review post interview and narrative collection using the NVivo1p software package.
Other initiatives with which this proposed study links: Presently, the research is aimed to link to studies being undertaken in the UK and at universities in Perth.
Feasibility (including costs and support): The majority of the cost will be on transport to wherever the participant wishes to be interviewed. This is impossible to cost at present due to the unknown places the researcher will be required to travel to within Western Australia. As the researcher presently works full time, loss of earnings will be substantial.
- Lottie Chapman1
- Edith Cowan University1
2014
ExcerptStudy Design: A qualitative phenomenological method to investigate the conversations which may or may not have occurred prior to the commencement of NIV when the respiratory muscles started to fail in MND. Families, significant others and clinicians will be asked to recall their experiences surrounding the communication and experiences surrounding the initiation and ultimate removal, of NIV.
Primary aim: The anticipated outcome of this research is an improved understanding of the communications
which surrounds the decision whether to initiate or refuse NIV, and include communication and discussions regarding the eventual withdrawal of NIV. The impact such understanding this study aims to provide, may assist health professionals with the difficult conversations surrounding the terminal phase of the disease and to assist to communicate clear information to patients and their families explaining the implications of the commencement and withdrawal of NIV
Data collection and analysis: Data will be collected from two distinct sources. Firstly families and significant others who have lived with a person with a diagnosis of MND, will be asked to recall their experience(s) of the conversations which rnay (or may not) have occurred prior to the commencement of NIV for the patient diagnosed with MND. The method design incorporates an invitation to take part in the research and acceptance to participate via an explanation of the research and invitation to participate, posted on the Motor Neurone Disease Association
of Western Australia (MNDA WA) website. Clinicians will be invited to recall their experiences and will be invited to partake in the research by their association with MND, palliative care services, hospitals, specialist centres (neurologists, respiratory physicians and specialist nurses) and invited by email, letter or face-to face discussion to partake in the research.
It is anticipated that by using a personal semi structured interview method, the researcher will be able to obtain in-depth responses which will be transcribed verbatim. An interpretive phenomenological analysis (IPA) is the method used to describe the experience of participating in the study. The method of analysis will include thematic review post interview and narrative collection using the NVivo1p software package.
Other initiatives with which this proposed study links: Presently, the research is aimed to link to studies being undertaken in the UK and at universities in Perth.
Feasibility (including costs and support): The majority of the cost will be on transport to wherever the participant wishes to be interviewed. This is impossible to cost at present due to the unknown places the researcher will be required to travel to within Western Australia. As the researcher presently works full time, loss of earnings will be substantial.