There is ‘no cure for caregiving’: the experience of women caring for husbands living with Parkinson’s disease

Figures & data

Table I. Semi-structured interview guide with evidence sources.

Interview Question	Evidence Sources	Construct(s)
Tell me about your experiences of caring for your husband with Parkinson’s disease.	Open the conversation with the participant	Grand question
Please describe your experiences working with your husband’s physicians. How did they help or hinder? (Prompt: How are you addressed during visits? How can they help?)	Boersma et al. (2017) Dekawaty et al. (2019)	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) Schwartz et al. (2020)	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) Smith et al. (2019)	Caregiver burden Fatigue
Where do you find your strength? Describe your inner strength. (Prompt: What helps you continue caring?)	Boersma et al. (2017)	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?)	Kist Bakof et al. (2021) Kang et al. (2020) Theed et al. (2017)	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)	Caregiving Caregiver burden
Please describe your experience related to the progression of your husband’s disease. (Prompt: What has been difficult?)	Juneja et al. (2020) Smith et al. (2019)	Caregiving Wife caregiver
As a caregiver for a person living with Parkinson’s disease, how your life has changed? (Prompt: Good, not so good, bad?)	Smith et al. (2019)	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) Turney et al. (2018) Walga (2019)	Caregiving Caregiver burden
What are your experiences with adapting your life to your spouse’s Parkinson’s disease?	Dekawaty et al. (2019) Hellqvist et al. (2020)	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)	Caregiver burden Caregiver benefit
Please explain in your own words what drives you to continue caring for your spouse. (Prompt: What are your motivators?)	Champagne et al. (2022)	Caregiver benefit Wife caregiving
Is there anything else you would like to add?	Closing remarks	Final question

Table II. Demographic characteristics of women caregivers of male spouses living with Parkinson’s disease.

Pseudonym	Age	Education	Years Married	Job Status	Children	Relative <20 Miles	Caregiving Years	Caregiving Hours (weekly)	Medical Training
Carnation	80–89	Bachelor	51	Not Working	1	Yes	12	80 +	No
Crocus	50–59	Bachelor	55	Not Working	2	Yes	3	80 +	No
Daisy	70–79	Bachelor	14	Not Working	2	Yes	9	50–59	No
Iris	70–79	Associate	52	Not Working	2	No	2	50–59	No
Lavender	60–69	Bachelor	8	Not Working	2	Yes	11	50–59	No
Lilac	60–69	Master	30	Not Working	1	No	8	50–59	No
Lily	60–69	Bachelor	25	Not Working	0	Yes	18	80+	No
Magnolia	70–79	Master	54	Not Working	1	Yes	5	80+	No
Pansy	80–89	Bachelor	60	Not Working	2	Yes	1	50–60	No
Petunia	70–79	Bachelor	57	Not Working	2	Yes	17	80+	No
Poppy	60–69	Associate	34	Not Working	3	Yes	12	80+	No
Rose	70–79	Bachelor	52	Not Working	3	Yes	4	80+	No
Violet	70–79	Bachelor	44	Not Working	2	No	20	80+	No

Table III. Themes and subthemes from phenomenological analysis of interview data.

Themes	Subthemes
Caregiver who?	Early years More caring less curing Living in the shadows
Taking it day by day	Golden years Who’s gonna help me? Climbing the mountain
Not sure what to do next	It’s my way now Nursing without a degree Emotional rollercoaster
Just too much	Physical and mental overload I’m just so angry Managing the craziness
Caring is your soul’s growth	Please, God, help me Finding my inner strength How can I help you?

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