Introduction
Methods
Study overview
Step one: formative qualitative work
Step two: translation of the SVI into Kiswahili
Step three: Delphi procedure
Step four: exploration of potential SVI-Kenya items in qualitative work
Step five: rating and ranking of potential SVI-Kenya items
Thematic analysis of qualitative work
Results
Study population
Characteristic N (%) or median (range) | FGD 1 (11/24/17) n=7 | FGD 2 (11/27/17) n=8 | FGD 3 (11/29/19) n=11 | FGD 4 (1/21/20) n=8 | Overall n=34 |
---|---|---|---|---|---|
HIV status | Positive | Positive | Negative | Positive | -- |
Age in years | 53 (50–55) | 52 (50–62) | 51 (42–66) | 53 (50 –56) | 52 (42–66) |
Country of birth | |||||
Kenya | 5 (71.4) | 7 (87.5) | 11 (100) | 7 (87.5) | 30 (88.2) |
Uganda | 2 (28.6) | 0 (0) | 0 (0) | 0 (0) | 2 (5.9) |
Tanzania | 0 (0) | 1 (12.5) | 0 (0) | 1 (12.5) | 2 (5.9) |
Religion | |||||
Protestant | 4 (57.1) | 4 (50) | 5 (45.4) | 5 (62.5) | 18 (52.9) |
Catholic | 2 (28.5) | 3 (37.5) | 2 (18.2) | 2 (25) | 9 (26.5) |
Moslem | 1 (14.2) | 1 (12.5) | 4 (36.4) | 1 (12.5) | 7 (20.6) |
Marital status | |||||
Never married | 0 (0) | 1 (12.5) | 3 (27.3) | 0 (0) | 4 (11.8) |
Currently married | 0 (0) | 1 (12.5) | 4 (36.4) | 4 (50) | 9 (26.5) |
Widowed | 7 (100) | 6 (75) | 2 (18.2) | 4 (50) | 19 (55.9) |
Divorced | 0 (0) | 0 (0) | 2 (18.2) | 0 (0) | 2 (5.9) |
Years of education | 7 (3–12) | 7 (0–10) | 12 (5–14) | 7.5 (0–12) | 8 (0–14) |
Number of pregnancies | 4 (1–6) | 3.5 (2–6) | 3 (1–6) | 3 (0–4) | 3 (0–6) |
Characteristic N (%), median (range) | Expert panel I (10.24.19) n=6 | Expert panel II (1.23.20) n=8 | Overall n=14 |
---|---|---|---|
Age in years | 59 (40–64) | 50 (28–64) | 52 (28–64) |
Country of birth | |||
Kenya | 6 (100) | 8 (100) | 14 (100) |
Religion | |||
Protestant | 5 (83.3) | 5 (62.5) | 10 (71.4) |
Catholic | 0 (0) | 1 (12.5) | 1 (7.1) |
Moslem | 1 (16.7) | 2 (25) | 3 (21.4) |
Marital status | |||
Never married | 2 (33.3) | 4 (50) | 6 (42.9) |
Currently married | 2 (33.3) | 3 (37.5) | 5 (35.7) |
Widowed | 2 (33.3) | 1 (12.5) | 3 (21.4) |
Divorced | 0 (0) | 0 (0) | 0 (0) |
Years of education | 16 (15-18) | 16 (12-18) | 16 (12-18) |
Emergent themes
Physical impairment with aging
Hypertension and diabetes were the most common non-communicable diseases reported. Cognitive complaints included memory loss.“It is true that as you age the energy that you had reduces. You can’t accomplish the chores that you once did, the speed you had. Now you feel that you are fatigued, your knees are hurting.” – HIV-negative woman, FGD 3
There was such general sharing of physical complaints and health concerns that one woman asked:“I can keep keys in a place then begin to look for them everywhere and I can’t find them yet am all alone, and everyone has gone to school … only to find them when I am looking for something else. I told myself age is catching up with me” – HIV-positive woman, FGD 4
“Is old age sickness?” – HIV-positive woman, FGD 2
Decreased family support
For many, children had moved away after they grew up and were not always supportive, although some continued to visit.“Apart from not having husbands, some of us don’t even have other people whom we live with.” – HIV-positive woman, FGD 1
“An old lady is supposed to be assisted, but nowadays there is no assistance forthcoming from the children, unlike in the days gone by when women used to be assisted.” – HIV-positive woman, FGD 4
In contrast, women who still had children or grandchildren at home found this to be an important source of motivation and satisfaction:“For some women their children have rented for them houses and they live apart, but they come around to pay them visits” – HIV-negative woman, FGD 3
“I take care of my child. If it were not for that I would just die” – HIV-positive woman, FGD 2
A turn to religion and social groups
“When one gets old that is when one gets too involved in church matters simply because most of her tasks are gone so it’s her and the church.” – HIV-positive woman, FGD 4
“Merry-go-round” groups in which women regularly contributed a small sum to a fund that was paid out to members on a rotating basis were common and helped meet financial needs. While these social support groups were helpful to most women, some women described gossip and back-biting that led them to not participate.“There are meetings organized on Tuesdays, Wednesdays, there are some organized by pastors, there are those organized by women to talk about issues of life, so you can get to learn something you didn’t know. You get to learn a lot.” – HIV-negative woman, FGD 3
“There are no groups because you go and get filled with useless talk until when you get out you don’t even understand yourself.” – HIV-positive woman, FGD 2
Lack of a financial safety net
The financial challenges some women experienced led to them not being able to afford more than one meal a day. This led to stress and worry:“I hear if you go there, they ask for your ID card and if they look at ID, they say you do not qualify.” – HIV-positive woman, FGD 4
“You can only sleep if you know that you have someone who can provide for you. But for us, if you are aging and you don’t have someone who will provide for you, you start losing sleep.” – HIV-negative woman, FGD 3
Mixed support from healthcare providers
Most women found providers to be sources of motivation and support as they navigated their chronic health problems. While interacting with the health system was mostly positive, however, some women complained of not being taken seriously:“There are clinics such as this one where they offer health talks; those too work as you educate them in a language they understand” –HIV-negative woman, FGD 3
For others, the utility of seeking care was limited by their financial ability to pay for visit fees and medications:“You see like me, I used to be very sick quite often, and I saw some arrogance. It’s like I had gone there so many times and they were tired of me. Such that when you go there … the doctor says you are not sick … You see, you are ignored...you are ignored and your body is very weak, you are sick.” – HIV-positive woman, FGD 1
“For that you need to see the doctor and if you don’t have the money to see the doctor so that you can get help … . and on that I still haven’t sought help.” – HIV-negative woman, FGD 3
HIV stigma as an added burden
Notably, no women mentioned physical impairments caused by HIV itself, and some women said the challenges that women with and without HIV face as they age are similar.“Someone will know that truly I have been infected. She will go and tell other people all over in the village.” – HIV-positive woman, FGD 2
“They don’t have HIV but struggling with all the other diseases, so we are all the same, I don’t see a difference.” – HIV-positive women, FGD 4
Domain | Original SVI by Andrew, et al. | SVI-Kenya draft from October 2019 | SVI-Kenya final | Average importance rating (Range 1-5) | Ranking within domain |
---|---|---|---|---|---|
Barriers: Physical impairment | Does your hearing cause difficulty when you visit with friends? | Does your hearing cause difficulty when you visit with friends? | 1.67 | 5.17 | |
Are you able to read? | 1.83 | 4.67 | |||
Are you able to see well enough to recognize a friend across a street? | Are you able to see well enough to recognize a friend across a street? b | 2.17 | -- | ||
Barriers: Physical safety | Have you experienced any physical violence at home? | Have you experienced any physical violence at home? | 1.17 | 2.00 | |
Do you feel safe at home? | Do you feel safe at home? | 1.83 | 3.00 | ||
Do you feel you have control over things that happen to you? | Do you feel you have control over things that happen to you? | 1.5 | 4.00 | ||
Do you feel safe in your neighborhood? b | 2.17 | -- | |||
Do you think most people can be trusted? | Do you think most people can be trusted? b | 2.83 | -- | ||
Support from family | Do you live alone? | Do you live alone? | Do you live alone? | 1.5 | 1.00 |
How many relatives do you see at least once a month? | How many relatives do you see at least once a month? | How many relatives do you see at least once a month? | 1.83 | 2.00 | |
What is your marital status? a | -- | -- | |||
Do you live in an old people’s home? b | 2.67 | 2 | |||
Group participation | Do you participate in any groups? | Do you participate in any social groups, such as “merry-go-rounds”? | Do you participate in any social groups, such as “merry-go-rounds”? | 1.67 | 1.50 |
How often do you attend religious services? | How often do you attend religious services? | 1.83 | 2.50 | ||
Do you do any regular work, whether volunteer or paid?a | -- | -- | |||
Instrumental support | If you were sick, is there someone who could take you to see a doctor? | If you were sick, is there someone who could take you to see a doctor? | 1.5 | 1.50 | |
Do you have anyone to help with things like shopping or picking up medications? | Do you have anyone you can send for shopping or picking up medicine when you need it? | Do you have anyone you can send for shopping or picking up medicine when you need it? | 1.83 | 2.67 | |
Are you able to find somebody to help with daily chores when needed? | If there is something you need help with at home, are you able to get help? b | 2.7 | -- | ||
Could you find someone to care for your house or belongings if needed? | In an emergency or if you are not around, can you have someone take care of your belongings? b | 2.17 | -- | ||
Emotional support | Do you feel loved? | Do you feel loved? | 1.83 | 2.17 | |
Do you have somebody to talk to about important decisions? | Are there people (relatives, neighbors, friends) who you can talk to about important decisions? | Are there people you can talk to about important decisions? | 1.67 | 3.17 | |
Do you know somebody you can turn to with a personal problem? | Do you know somebody you can turn to with a personal problem? | Do you know somebody you can turn to with a personal problem? | 1.33 | 3.67 | |
When you are lonely, do you have someone to talk to? | When you are lonely, do you have someone to talk to? | When you are lonely, do you have someone to talk to? | 1 | 4.67 | |
How many people do you feel close to? | How many people do you feel close to? | 1.67 | 5.17 | ||
How often do you meet or talk with family or friends? | How often do you meet with or talk to family or friends? | 1.67 | 5.67 | ||
Is there at least one person whose advice you trust? | Is there at least one person whose advice you listen to and respect? | 1.83 | 6.33 | ||
Do other people talk to you about decisions important to them? | Are there people (relatives, neighbors, friends) who come to you for advice? b | 2.83 | -- | ||
How many close friends do you have? a | 1.67 | -- | |||
Financial security | Do you feel that your income is enough to do all your expenses and save? | Do you feel your income is enough to do all your expenses and save? | 1.17 | 3.17 | |
Are you medically covered? | Are you medically covered? | 1 | 3.83 | ||
Do you receive a pension or other regular income? | 1.17 | 4.30 | |||
In the last 12 months, how often did you run out of money for your basic needs? | In the last 12 months, how often did you run out of money for your basic needs? | 1.67 | 4.50 | ||
In the last 12 months, how often have you had to borrow money from a friend or relative to survive financially? | 1.83 | 5.33 | |||
Approximately how much income does your household have each month? | Approximately how much income does your household have each month? | 1 | 5.67 | ||
Do you receive any services from the government? | 1.67 | 5.67 | |||
In the past four weeks, did you go to sleep at night hungry because there was not enough food? | 1.33 | 6.17 | |||
Would you say that financially your future is secure or uncertain? | 1.5 | 6.30 |
Question | Answer | Score |
---|---|---|
1. Do you feel safe at home? | Yes (0) No (1) | |
2. Do you feel you have control over things that happen to you? | Yes (0) No (1) | |
3. Have you experienced any physical violence at home? | No (0) Yes (1) | |
4. Are you medically covered? | Yes (0) No (1) | |
5. Do you feel your income is enough to do all your expenses and save? | Yes (0) No (0.5) No income (1) | |
6. In the last 12 months, how often did you run out of money for your basic needs? | Never (0) Once or twice (0.33) Few (0.67) Many (1) | |
7. Do you have anyone you can send for shopping or picking up medicine when you need it? | Yes (0) No (1) | |
8. If you were sick, is there someone who could take you to see a doctor? | Yes (0) No (1) | |
9. Do you live alone? | No (0) Yes (1) | |
10. Do you participate in any social groups, such as "merry-go-rounds"? | Yes (0) No (1) | |
11. How many relatives do you see at least once a month? | Many (0) Few (0.5) None (1) | |
12. How often do you attend religious services? | Daily (0) Sometimes (0.33) Weekly (0.67) Never (1) | |
13. Do you feel loved? | Yes (0) No (1) | |
14. Are there people (relatives, neighbours, friends) who you can talk to about important decisions? | Yes (0) No (1) | |
15. Do you have someone you can go to with a personal problem? | Yes (0) No (1) | |
16. When you are lonely, do you have someone to talk to? | Yes (0) No (1) |