Introduction
Lymphatic filariasis and the need for a quality of life measurement tool
The use of focus groups for item generation and instrument development
Methods
Study design
Research context
Community consultation
Sampling
Group (n) | Gender (n) | Years working with people with LF |
---|---|---|
Doctors (5) | M (4) F (1) | >1 (1) 1–4 (0) 5–10 (1) 11–15 (3) |
Nurses (6) | M (0) F (6) | Unrecorded (6) |
Other hospital staff (5) | M (4) F (1) | >1 (0) 1–4 (3) 5–10 (0) 11–15 (1) 16+ (1) |
Community volunteer health workers (5) | M (2) F (3) | >1 (0) 1–4 (1) 5–10 (1) 11–15 (0) 16+ (2) Unrecorded (1) |
Community leaders (14) | M (11) F (3) | Unrecorded (14) |
LF researchers/programmers (8) | M (7) F (1) | Unrecorded (8) |
Group (n) | Age | Disease stage/presentation | Location of residence |
---|---|---|---|
Male (6) | 20–29 (2) 30–39 (1) 40–49 (1) 50–59 (1) 60–69 (0) 70+ (1) | Lymphoedema only stage unknown (3) Lymphoedema and hydrocele (2) Hydrocele only (1) | Village (3) Town (3) |
Female (11) | 20–29 (0), 30–39 (2), 40–49 (4), 50–59 (5) | Stage 1 lymphoedema (1) Stage 2 lymphoedema (4) Stage 3 lymphoedema (3) Stage 4 lymphoedema (1) Stage 5 lymphoedema (1) Bilateral lymphoedema stage 2 & 3 (1) | Village (10) Town (1) |
Focus group design
In what ways do you think LF affects you/the lives of people that you work with? |
How does LF affect your/people’s ability to complete daily activities? |
Home, work, school |
How does LF affect your/people’s ability participate |
Family roles, community activities |
How well are you/LF patients supported |
By their families, community, health services |
How does having LF impact on your/the patients relationship with |
Families (prompt: spouse, in laws, children)
|
Friends, ability to get married |
How do people perceive and treat/interact with you/LF patients? |
Within the patients family, community, health system |
In what ways does LF affect your/the patient’s psychological health? In what ways? |
Are there any aspects of the LF that you/your patients find difficult to accept? What are the most difficult things to accept? |
Finally, in what other ways do you think that LF changes your life/the lives of people living with the condition? |
Focus group moderation
Data collection and analysis
Results
Domain | Themes from literature review | New themes from focus groups |
---|---|---|
Psychological | Depression | Feeling useless/valueless |
Feelings of shame/humiliation | Stress/anxiety | |
Low self-esteem/inferiority | Feeling unloved | |
Feeling unattractive/poor body image | Helpless | |
Ability to cope/strategies | ||
Grief/loss of former self | ||
Fear | ||
Wishing they were dead | ||
Embarrassment | ||
Feeling isolated | ||
Hopelessness | ||
Frustration | ||
Feeling inadequate | ||
Feeling like a burden | ||
Activities & Participation | Sexual functioning | Fine motor skills |
Work | Eating | |
Mobility | Gather/farm food | |
Childcare | Company/time spent with family | |
Domestic chores | Company/time spent with others/friends | |
Catch transport/cycling, etc. | Patient separates themselves from community | |
Self-care | Patient separate’s themselves from family | |
Sleep | Heavy work | |
Marriageability | Shopping–community CADLs | |
Personal relationships | Takes longer to complete daily activities | |
Attend social events | Role changes | |
Ability to go to school | ||
Environment | Teasing | LF reduced social status of family |
Avoided by others | Respect from community | |
LF reduced social status | Respect from family | |
Stigma within family | Fear of contagion from others | |
Stigma within community | Acceptance within community | |
Families as carers | Acceptance within family | |
Treatment availability | Support in community | |
Expense of treatment | Stigma/barrier in government system | |
Location of treatment | Neglected by family | |
Stigma within health system | Pitied by others | |
Stigma within school system | Inappropriate/dangerous treatment | |
Access to support groups | Abandoned by family | |
Hygienic home conditions | Abandoned by community | |
Hygienic work conditions | No place within society | |
Separated from family | ||
Separated from community | ||
Fear/mistrust of health services | ||
Housebound | ||
Hated by others | ||
Relationships with family deteriorate | ||
LF bringing shame to family | ||
Others feel annoyed by them | ||
Criticised by others | ||
Personal/other | Poverty | Abuse |
Education status | Smell of wounds | |
Pain | Weakness | |
Bedbound | ||
Itching | ||
Total items | 46 | 43 new items |
New theme | Drs1
| Nurses2
| Other3
| R/P4
| CL #15
| CL #26
| CH7
| Total |
---|---|---|---|---|---|---|---|---|
Psychological
| ||||||||
Feeling useless/valueless | 0 | 1 | 6 | 1 | 0 | 0 | 1 | 9 |
Stress/anxiety | 0 | 0 | 0 | 0 | 2 | 0 | 3 | 5 |
Feeling unloved | 0 | 0 | 1 | 0 | 0 | 0 | 1 | 2 |
Helpless | 0 | 0 | 2 | 0 | 0 | 0 | 0 | 2 |
Activities & participation
| ||||||||
Fine motor skills | 0 | 0 | 2 | 4 | 0 | 0 | 2 | 8 |
Eating | 1 | 0 | 1 | 0 | 0 | 6 | 2 | 10 |
Gather/farm food | 1 | 2 | 4 | 0 | 0 | 2 | 2 | 11 |
Company/time spent with family | 5 | 5 | 8 | 11 | 14 | 16 | 3 | 62 |
Company/time spent with others/friends | 0 | 0 | 1 | 2 | 0 | 4 | 1 | 8 |
Patient separates from community | 5 | 2 | 1 | 11 | 2 | 3 | 1 | 25 |
Patient separates from family | 1 | 1 | 1 | 3 | 1 | 3 | 2 | 12 |
Heavy work | 1 | 0 | 0 | 0 | 1 | 0 | 2 | 4 |
Shopping | 0 | 0 | 0 | 0 | 0 | 1 | 0 | 1 |
Takes longer to complete daily activities | 0 | 1 | 2 | 0 | 0 | 0 | 0 | 3 |
Role changes | 0 | 0 | 0 | 0 | 6 | 2 | 2 | 10 |
Environment
| ||||||||
LF reduced social status of family | 0 | 4 | 1 | 2 | 11 | 1 | 0 | 19 |
Respect from community | 1 | 3 | 11 | 0 | 8 | 5 | 3 | 31 |
Respect from family | 0 | 5 | 6 | 1 | 5 | 6 | 1 | 24 |
Fear of contagion from others | 3 | 7 | 8 | 8 | 4 | 2 | 11 | 43 |
Acceptance within community | 2 | 0 | 6 | 0 | 6 | 0 | 0 | 14 |
Acceptance within family | 1 | 1 | 6 | 0 | 0 | 0 | 0 | 8 |
Support in community | 0 | 0 | 0 | 0 | 0 | 1 | 0 | 1 |
Stigma/barrier in government system | 0 | 0 | 3 | 17 | 0 | 2 | 0 | 22 |
Neglected by family | 2 | 5 | 2 | 2 | 1 | 14 | 2 | 28 |
Pitied by others | 0 | 0 | 0 | 0 | 0 | 6 | 0 | 6 |
Inappropriate/dangerous treatment | 1 | 5 | 0 | 15 | 2 | 2 | 4 | 29 |
Abandoned by family | 1 | 5 | 4 | 0 | 3 | 1 | 1 | 15 |
Abandoned by community | 1 | 0 | 6 | 0 | 4 | 2 | 1 | 14 |
No place within society | 1 | 1 | 1 | 0 | 0 | 0 | 0 | 3 |
Separated from family | 0 | 5 | 4 | 7 | 0 | 7 | 3 | 26 |
Separated from community | 2 | 4 | 2 | 1 | 0 | 7 | 5 | 21 |
Fear/mistrust of health services | 1 | 1 | 2 | 0 | 0 | 0 | 0 | 4 |
Housebound | 0 | 0 | 0 | 0 | 0 | 0 | 1 | 1 |
Hated by others | 0 | 0 | 0 | 1 | 0 | 15 | 0 | 16 |
Relationships with family deteriorate | 3 | 9 | 1 | 4 | 3 | 7 | 8 | 35 |
LF bringing shame to family | 0 | 2 | 0 | 0 | 0 | 0 | 0 | 2 |
Others feel annoyed by them | 1 | 1 | 0 | 0 | 0 | 1 | 7 | 10 |
Criticised by others | 0 | 0 | 2 | 0 | 0 | 0 | 2 | 4 |
Other
| ||||||||
Abuse | 0 | 5 | 11 | 0 | 7 | 3 | 0 | 26 |
Smell of wounds | 3 | 0 | 0 | 9 | 0 | 0 | 0 | 12 |
Weakness | 0 | 0 | 0 | 0 | 1 | 3 | 2 | 6 |
Bedbound | 0 | 0 | 1 | 0 | 0 | 0 | 2 | 3 |
Itching | 1 | 0 | 0 | 0 | 0 | 0 | 2 | 3 |
Domain | Theme | Supporting Quote |
---|---|---|
Psychological | Feeling useless/valueless |
A concept grows in patients mind that it’s true that I am really a useless person
|
Stress/anxiety |
Tension [stress}, patient becomes fretful
| |
Feeling unloved |
They think, no one loves or accepts me
| |
Helpless |
Patient becomes hopeless and they breakdown
| |
Activities and Participation | Fine motor skills |
You are not able to do any type of hand related work
|
Eating |
It has been seen that he is not able to eat by his/her own [self]
| |
Gather/farm food |
They can’t do their own farming work
| |
Company/time spent with family |
No
one… wants to talk with the [LF] patient or accompany them/give them company
| |
Company/time spent with others/friends |
Patient thinks…I cannot gossip and talk with people.
| |
Patient separates from community |
If the swelling and smell is very bad then the patient isolates himself from the others.
| |
Patient separates from family |
They want to live alone, separated life. They become detached from family
| |
Heavy work |
They are not able to do any heavy work
| |
Shopping–community CADLs |
Also he cannot go shopping
| |
Takes longer to complete daily activities |
They take more time to do what we do normally
| |
Role changes |
He [LF patient] lost the participation [in family] that should be his
| |
Environment | LF reduced social status of family |
If a girl is affected then the marriage will happen with… a poorer family
|
Respect from community |
In society… they [LF patient] become less important and less important
| |
Respect from family |
“You are not able to work then what is the value of your opinion?” – family members think like that.
| |
Fear of contagion from others |
[People in the community say] you can be affected by LF if you mix with the patient.
| |
Acceptance within community |
They often lose their social and communal acceptance.
| |
Acceptance within family |
They haven’t any participation [within family] because they haven’t the acceptance
| |
Support in community |
Sometimes the community helps the patient, try and help the patient
| |
Stigma/barrier in government system |
They are not able to work [in the government sector]. They are not allowed abroad…it is a problem.
| |
Neglected by family |
I saw that no one took care of him. He was laying in the corner of the house with a blanket.
| |
Pitied by others |
Is very difficult to accept that people pity them. People don’t want for other people to pity them.
| |
Inappropriate/dangerous treatment |
Doctors do not treat the LF patient [properly]… because they don’t know about LF, how to treat it.
| |
Abandoned by family |
I saw that patient become outcaste/separated from his family
| |
Abandoned by community |
They are separated from community and helpless.
| |
No place within society |
He has no place in society
| |
Separated from family |
A patient becomes separated from family.
| |
Separated from community |
Family say “don’t go out, stay in your room”.
| |
Fear/mistrust of health services |
They [healers] give them [LF Patient] a frightful concept about LF and the hospital
| |
Housebound |
The patient feels shy to come out from the house.
| |
Hated by others |
Generally all people hate an LF patient
| |
Relationships with family deteriorate |
Of course the relationships become worse between patient and family
| |
LF bringing shame to family |
Family think that it is a shame to show/expose him [LF patient] to the relatives or outside
| |
Others feel annoyed by them |
People support the patient for 1 or 2 times but after that people become annoyed by them
| |
Criticised by others |
Family criticise the patient
| |
Other | Abuse |
Family members…abuse
|
Smell of wounds |
When the patient suffering at stages 4-5 then it smells bad
| |
Weakness |
They feel very weak
| |
Bedbound |
He/she lay down in bed all the day
| |
Itching |
Itching was a problem
|