<abstract xmlns="http://www.w3.org/1999/xhtml">

<p>This article outlines a research protocol for investigating the health care experiences of people living with Myotonic Dystrophy Type 1 (Dytrophia Myotonica; DM1).</p>
<sec id="j_ajon-2022-003_s_001">
<h3>Introduction</h3>
<p>DM1 is a neuromuscular condition of highly variable presentation across the lifespan. It is a complex and variable condition which impacts many body systems. Care consensus, clinical experience and scientific genetic findings dominate much of the literature. Findings from the literature indicate health care input from multiple disciplines is recommended to help identify and prevent or minimise disability and early mortality. It is these recommendations for intense health care input and the perceptions people living with DM1 have of their health care that have prompted this enquiry.</p>
</sec>
<sec id="j_ajon-2022-003_s_002">
<h3>Objectives</h3>
<p>Investigate the experiences of health care from 3 different groups: people living with DM1, their family members, carers or support people, and health care providers. Potentially illuminating what we as nurses and health care providers do well or not so well.</p>
</sec>
<sec id="j_ajon-2022-003_s_003">
<h3>Intended methods</h3>
<p>Guided by Merleau-Ponty’s phenomenology of perception and triangulate these gathered experiences to ascertain if there is convergence or divergence between health care experiences of recipients and providers. This research will utilise a qualitative approach with methodology drawn from phenomenology. Semi-structured Interviews will be conducted with 3 different groups to gain insight into perceptions, experiences, and outcomes of health care interactions. People living with DM1, family members, carers and friends and health professionals providing services and care for people living with DM1 will be invited to participate.</p>
</sec>
</abstract>

This article outlines a research protocol for investigating the health care experiences of people living with Myotonic Dystrophy Type 1 (Dytrophia Myotonica; DM1).

Introduction
DM1 is a neuromuscular condition of highly variable presentation across the lifespan. It is a complex and variable condition which impacts many body systems. Care consensus, clinical experience and scientific genetic findings dominate much of the literature. Findings from the literature indicate health care input from multiple disciplines is recommended to help identify and prevent or minimise disability and early mortality. It is these recommendations for intense health care input and the perceptions people living with DM1 have of their health care that have prompted this enquiry.


Objectives
Investigate the experiences of health care from 3 different groups: people living with DM1, their family members, carers or support people, and health care providers. Potentially illuminating what we as nurses and health care providers do well or not so well.


Intended methods
Guided by Merleau-Ponty’s phenomenology of perception and triangulate these gathered experiences to ascertain if there is convergence or divergence between health care experiences of recipients and providers. This research will utilise a qualitative approach with methodology drawn from phenomenology. Semi-structured Interviews will be conducted with 3 different groups to gain insight into perceptions, experiences, and outcomes of health care interactions. People living with DM1, family members, carers and friends and health professionals providing services and care for people living with DM1 will be invited to participate.

Myotonic dystrophy Type 1: exploring the health care experiences of people living with DM1. A Research Protocol

Australasian Journal of Neuroscience

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

This article outlines a research protocol for investigating the health care experiences of people living with Myotonic Dystrophy Type 1 (Dytrophia Myotonica;...

Group 3 Health care professionals
Inclusion Criteria	Exclusion criteria
Have provided care to people living with DM1 in the past 12 months.Provided care directly related to the DM1 condition – e.g., symptom management, symptom monitoring (cardiac or respiratory tests, physical therapy).Have greater than 12 months experience in health care delivery for people living with DM1.	Less than 12 months experience of DM1 care provision.

Group 2 Support people: family, carers, friends of a person living with DM1
Inclusion Criteria	Exclusion criteria
Aged 18 years or over.Be able to speak, read and write in English.Able to give consent to participate on their own behalf.Have attended a health care appointment supporting a person with DM1 in the previous 12 months.	Under the age of 18 years.Has not assisted a person with DM1 in health care participation.

Group 1 People living with DM1 diagnosed by a medical specialist by positive genetic testing and/or recognised family inheritance.
Inclusion criteria	Exclusion criteria
Aged 18 years or over.Be able to speak, read and write in English.Able to give consent to participate on their own behalf.Have attended a health care appointment in the previous 12 months.Be willing and able to take part in a recorded interview for approximately 1 hour.	Under the age of 18 years.Have a known cognitive impairment that impacts on their ability to provide informed consent on their own behalf.

Myotonic dystrophy Type 1: exploring the health care experiences of people living with DM1. A Research Protocol

Publié en ligne: 11 juil. 2022

Pages: 13 - 24

DOI: https://doi.org/10.21307/ajon-2022-003

Mots clés
Myotonic Dystrophy Type 1, Health care provision, patient experience

© 2022 Shelia Jala et al., published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Figure 1:

j.ajon-2022-003.tab.003

j.ajon-2022-003.tab.002

j.ajon-2022-003.tab.001

Myotonic dystrophy Type 1: exploring the health care experiences of people living with DM1. A Research Protocol

Publié en ligne: 11 juil. 2022

Pages: 13 - 24

DOI: https://doi.org/10.21307/ajon-2022-003

Mots clésMyotonic Dystrophy Type 1, Health care provision, patient experience

© 2022 Shelia Jala et al., published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Figure 1:

j.ajon-2022-003.tab.003

j.ajon-2022-003.tab.002

j.ajon-2022-003.tab.001

Mots clés
Myotonic Dystrophy Type 1, Health care provision, patient experience