Chart 1.
Themes and categories derived from interviews with informal caregivers
| Examples of recording units | Units of analysis | Themes | Categories |
|---|---|---|---|
| “I wake up early to make breakfast, take care of things like cleaning, serving breakfast, administering medications and leaving everything in order.” [P01] | Domestic activities/direct care | Being a caregiver vs. household chores | Description of the caregiver’s work routine: a double workload |
| “After serving breakfast, I clean the house, make food […], I live like a slave.” [P02] | Domestic activities/direct care | ||
| “It’s always me in this house. I take care of him, make breakfast, wash clothes, clean the house, do everything. I feel tired, stressed; I can’t take it anymore.” [P09] | Domestic activities/direct care | ||
| “I wake up early to take care of my dependents and do household chores. […]” [P10] | Domestic activities/direct care | ||
| “I give him a bath, and move him back to his wheelchair, […] Then I do all the housework, like cleaning the house, the bathroom […]” [P04] | Domestic activities/direct care | ||
| “After giving him breakfast, I have to clean the house, make food […], in addition to bathing and feeding him, I do all of that alone.” [P11] | Domestic activities/direct care | ||
| “In addition to my caregiving activities, I have a small shop to supplement my family income. At noon, I bathe him, feed him, and organize the house […] and then I go back to the shop again.” [P07] | Work activities/direct care | Being a caregiver vs. other work activities | |
| “Most of the time I’m alone. It’s very difficult, but it’s a job I have to do; he’s my father.” [P01] | Emotional overload | Emotional distress of solitary care | Physical, mental and emotional exhaustion of caregivers |
| “I take care of him all by myself […] everything is difficult. I feel like giving up on everything, but who could I leave my father with?” [P08] | Emotional overload | ||
| “There are days when I think I’m going to run down the street naked because I’m so stressed. It’s a headache, it’s stress […]” [P01] | Mental overload | Mental exhaustion in the daily life of a caregiver | |
| “I’m already stressed out with all of this; taking care of the house isn’t easy. Imagine what it’s like for a sick person who can’t walk. I’ve been having to do everything alone for almost 3 years.” [P02] | Mental overload | ||
| “I live exhausted, I live with stress. I feel angry sometimes, so for me this is no good.” [P03] | Mental overload | ||
| “It’s difficult to take care of him because I can’t handle it, so for me it’s difficult, it’s suffering.” [P04] | Mental overload | ||
| “I can’t handle doing very much anymore […], but getting him to pee, to bathe him, is very difficult, stressful.” [P05] | Mental overload | ||
| “…nobody helps me. I don’t want this life anymore […]” [P10] | Mental overload | ||
| “Because she’s heavy I sometimes feel it here in my lower back.” [P06] | Physical symptoms | Pain and physical exhaustion in the daily life of a caregiver | |
| “I’m overwhelmed by everything. I get tired, I have a headache, I need someone to help me take care of myself.” [P08] | Physical symptoms | ||
| “She’s too heavy, she can’t do anything on her own, I need help […]” [P10] | Physical symptoms |