Women Caring for Husbands Living with Parkinson’s Disease: A Phenomenological Study Protocol
Abstract
:1. Introduction
2. Background
Stages | Parkinson’s Disease (PD) Symptoms | Implications for Activities of Daily Living (ADLs) | Caregiver Responsibilities for People Living with PD |
---|---|---|---|
1 | Unilateral symptoms but can also involve the neck and spine, usually no noticeable tremor. | No symptoms different from aging, no observable disability, no observable impairment, usually unaware of disease. | Life as normal, diagnosis is usually not made at this stage, disease mistaken for process of aging. |
2 | Bilateral symptoms but no noticeable impairment of postural reflexes, mild tremor could be present. | Mild symptoms, slower movement and minor balance issues, some mild cognitive confusion such as “brain fog”. | Some assistance might be required for balance issues, when tremor is present, diagnosis is more likely. |
3 | Bilateral symptoms, mild to moderate impaired postural reflexes, physically independent, tremor. | Mild to moderate symptoms, postural instability, freezing with movement; noticeable tremors; cognitive decline. | Minimal assistance with movement for balance issues, increased risk for falls, ADLs are usually independent. |
4 | Severe disability, but still able to walk or stand unassisted. | Severe symptoms, difficult to stand/walk without assistance, not able to live independently. | Assistance for movement, usually with a walker, some ADL assistance. |
5 | Wheelchair required or bedridden without assistance. | Severe symptoms, physically disabled, hallucinations and/or delusions possible. | Complete care, confined to bed or wheelchair; most ADLs require assistance. |
3. Caregiver Burden and Benefit
4. Conceptual Framework for Caregiving
4.1. Caregiver Identity Theory
4.2. Self-Determination Theory
4.3. Theory of Human Caring
5. Purpose of the Study
6. Methods
7. Study Design
8. Setting
9. Sampling and Recruitment
9.1. Sampling
9.2. Inclusion and Exclusion Criteria
9.3. Recruitment
10. Data Collection
11. Data Analysis
12. Trustworthiness and Rigor
Reflexive Bracketing
13. Ethical Considerations
13.1. Contact
13.2. Consent
13.3. Data Security and Confidentiality
13.4. Digital Data Management
13.5. Participant and Researcher Risks
14. Discussion
15. Limitations
16. Results
17. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Interview Question | Evidence Sources | Construct(s) |
---|---|---|
Tell me about your experiences of caring for your husband with Parkinson’s disease. | Opening the conversation | Grand question |
Please describe your experiences working with the physicians to manage the Parkinson’s disease physicians. How have they helped or hindered you? (Prompt: Are you addressed during visits? What can the physicians do to help you?) | Boersma et al., 2017 [23] Dekawaty et al., 2019 [64] | Wife caregiver Caregiver burden Caregiver benefit |
What was your experience when your husband was first diagnosed with Parkinson’s disease? (Prompt: How did you feel? What did you think?) | Hoogland et al., 2019 [5] Schwartz et al., 2020 [63] | Wife caregiver |
What disease symptoms are most challenging for you to manage? How do you deal with them? (Prompt: What might make these easier for you to manage?) | Boersma et al., 2017 [23] Smith et al., 2019 [12] | Caregiver burden Fatigue |
Where do you find your strength? Please describe your inner strength. (Prompt: What helps you continue caring?) | Boersma et al., 2017 [23] | Caregiving Wife caregiver |
Please describe what you normally do during the time you are caregiving. (Prompt: What does caring mean in the context of your work with your husband?) | Bakof et al., 2021 [36] Kang et al., 2020 [35] Theed et al., 2017 [26] | Caregiving Fatigue Wife caregiver |
What is it like to go from being a wife and spouse to a full-time caregiver for a person living with Parkinson’s disease? | Balash et al., 2019 [11] | Caregiving Caregiver burden |
Please describe your experience related to the progression of your husband’s Parkinson’s disease. (Prompt: What has been difficult?) | Juneja et al., 2020 [6] Smith et al., 2019 [12] | Caregiving Wife caregiver |
As a caregiver for a person living with Parkinson’s disease, describe how your life has changed. (Prompt: Good, not so good, bad?) | Smith & Shaw, 2017 [32] | Caregiver burden Caregiver benefit |
What is your experience with outside support you have received from the community, agencies, friends, and/or health providers? | Dekawaty et al., 2019 [64] Turney & Kushner, 2017 [31] Walga, 2019 [33] | Caregiving Caregiver burden |
What are your experiences with adapting your life to your spouse’s Parkinson’s disease? | Dekawaty et al., 2019 [64] Hellqvist et al., 2020 [102] | Caregiving |
In your own words, explain how you deal with the burden, or stress, of caring for your husband? (Prompt: Are there any benefits?) | Walga, 2019 [33] | Caregiver burden Caregiver benefit |
Please explain in your own words what drives you to continue caring for your spouse? (Prompt: What are your motivators?) | APA, 2021 [40] Champagne & Muise, 2021 [34] | Caregiver benefit Wife caregiving |
Is there anything else you would like to add? | Closing remarks | Final question |
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White, D.R.; Palmieri, P.A. Women Caring for Husbands Living with Parkinson’s Disease: A Phenomenological Study Protocol. J. Pers. Med. 2022, 12, 659. https://doi.org/10.3390/jpm12050659
White DR, Palmieri PA. Women Caring for Husbands Living with Parkinson’s Disease: A Phenomenological Study Protocol. Journal of Personalized Medicine. 2022; 12(5):659. https://doi.org/10.3390/jpm12050659
Chicago/Turabian StyleWhite, Dawn R., and Patrick Albert Palmieri. 2022. "Women Caring for Husbands Living with Parkinson’s Disease: A Phenomenological Study Protocol" Journal of Personalized Medicine 12, no. 5: 659. https://doi.org/10.3390/jpm12050659