Introduction
Lymphatic filariasis (LF) is targeted for global elimination as a public health problem
by interrupting transmission with mass drug administration and providing an essential
package of care to people affected by the debilitating lymphedema and hydrocoele conditions
[1]. In recent years, many LF endemic countries have scaled up their morbidity management
and disability prevention (MMDP) programmes with a new focus on universal health coverage,
primary healthcare strengthening, and integrated management of skin neglected tropical
diseases (NTDs), with the aim of fully integrating quality services for LF MMDP into
national health systems to ensure sustainability [2].
The positive impact of MMDP interventions for patients has been documented [3–6];
however, no research has been conducted on the wider societal benefits, including
the impact on the people who care for patients, i.e., caregivers. Ton and colleagues
[7] calculated that the burden of depressive illness in LF patient caregivers was
229,537 disability-adjusted life years (DALYs). Other studies have documented a negative
socioeconomic impact on the caregivers of people affected by filarial and nonfilarial
leg lymphedema and those who experience painful secondary bacterial infections, acute
adenolymphangitis [8–10].
Hydrocoele is the most common LF clinical manifestation, which affects approximately
19 million men worldwide and can be cured by surgery [11]. In Malawi, recent large-scale
patient mapping and modelling estimate that at least 14,000 men have hydrocoele across
the country. In 2015, surgical campaigns were initiated to address the burden, together
with a study to highlight the significant positive impact of surgery on men in highly
endemic areas [4].
We advocate that the positive impact of this surgical intervention can extend beyond
the patient to include their caregivers, who are likely to be family members (predominately
female) and have their own time, work, and quality of life affected.
Evidence from the field
Ethics statement
Ethical approval was obtained from the Malawi National Health Sciences Research Committee
(Protocol 15/3/1406) and the Liverpool School of Tropical Medicine Research Ethics
Committee (Protocol 15.047). All adult participants provided written informed consent;
no children participated in the study.
Methods
To provide evidence of the wider societal benefits of surgical intervention, we extended
the study in Malawi by Betts and colleagues [4] to include a small retrospective survey
on caregivers, 6 months postsurgical intervention, to better understand their (i)
characteristics and relationship to the hydrocoele patient; (ii) level of assistance
provided: number and type of physical activities they assisted with; (iii) impact
on time and work: number of days per month they provided care and took off work; (iv)
impact on the quality of life in relation to their usual activities (3 questions),
social issues (3 questions), and psychological health (4 questions) using a similar
scale-based scoring system, adapted from the Lymphatic Filariasis Quality of Life
Questionnaire (LFSQQ) [12,13] to quantify problems, i.e., no problem = 0, mild = 1,
moderate = 2, and severe = 3, with individual total scores ranging from 0 = no problem
to 30 = severe problem in all 10 questions. Average scores for each question across
the 3 domains were also calculated. All questions were asked twice by a trained field
research team member: first for the caregiver to recall the situation presurgery when
the patient had his hydrocoele and second to state the situation postsurgery after
the patient’s recovery. Caregivers were also asked if they provided additional care
during the recovery period immediately after surgery, the number of days they provided
additional care, and time taken off work during the recovery period.
Results
Caregiver characteristics
We surveyed 40 randomly selected caregivers. The majority were female (75%); median
age 36 years (female 39 years; male 27 years); approximately half had no schooling
and were illiterate (55%), and one-third (35%) had primary school level education.
Most caregivers were wives (65%) of the patient. Other female caregivers included
daughters (n = 2), a granddaughter (n = 1), and a sister (n = 1). Male caregivers
included brothers (n = 3), fathers (n = 2), sons (n = 3), a grandson, (n = 1), and
a cousin (n = 1), thus highlighting the wide involvement of the extended family.
Assisted activities
The number of physical activities the caregivers assisted the patient with pre- and
postsurgery is summarised in Table 1. Presurgery, 11 (27.5%) caregivers reported that
they provided no additional physical help on a specific activity for the patient,
which increased nearly 3-fold postsurgery to 31 (77.5%). Presurgery, 17 (42.5%) caregivers
assisted with 3 or more activities to patients, which decreased postsurgery to 5 (12.5%)
caregivers.
10.1371/journal.pntd.0009701.t001
Table 1
Level of assistance caregivers provided to patients pre- and postsurgery.
Number of activities assisted
Presurgery
Postsurgery
n
%
n
%
No assistance needed
11
27.5%
31
77.5%
1 activity
5
12.5%
2
5.0%
2 activities
7
17.5%
2
5.0%
3 activities
5
12.5%
2
5.0%
4 activities
3
7.5%
1
2.5%
5 activities
6
15.0%
0
0.0%
6 activities
2
5.0%
2
5.0%
7 activities
1
2.5%
0
0.0%
Total
40
40
Presurgery, the activities that caregivers (n = 29; 72.5%) physically assisted with
most frequently included farming (n = 24; 82.8%), cooking (n = 21; 72.4%), cleaning
(n = 15; 51.7%), laundry (n = 12; 41.4%), and least frequently shopping and fishing
(n = 1; 3.4%). When considering male caregivers only who provided care presurgery
(n = 8; 80%), the majority reported assisting with farming (n = 6; 75.0%) followed
by cooking (n = 4; 50%), suggesting that male caregivers were not more likely to assist
with certain activities, compared with female caregivers. However, given the small
sample size, further data are needed to understand the implications of gender on caregiving
responsibilities. Postsurgery, across all tasks, fewer caregivers stated that they
provided assistance with each specific task as shown in Fig 1.
10.1371/journal.pntd.0009701.g001
Fig 1
The types of activities caregivers assisted the patient with pre- and postsurgery.
Impact on time and work
Presurgery, caregivers (n = 29) assisted the patient with physical activities for
an average of 25.3 days per month or a total of 733.0 caregiver days. Postsurgery,
only 5 caregivers continued to assist with activities for an average of 26.2 days
per month or a total of 131.0 caregiver days. Presurgery, the caregivers were unable
to go to work due to caring responsibilities for an average was 8.2 days per month.
Postsurgery, no caregivers took time off work to assist the patient. During the initial
recovery period postsurgery, 20 caregivers provided additional help. This recovery
period lasted an average of 30.8 days postsurgery, with caregivers providing care
for an average of 24.7 days or a total of 494 caregiver days. During this recovery
period, 18 (90%) of the 20 caregivers were unable to work for an average of 13.7 days.
Quality of life
Presurgery, the majority of caregivers reported mild, moderate, or severe problems
when supporting the hydrocoele patients, with individual overall quality of life scores
ranging from 0 to 17. Average scores for questions on usual activities ranged 0.6
to 0.95, social issues 0.4 to 0.575, and psychological health 0.325 to 0.625. A summary
of presurgery proportions of problem level for each question is below and included
in S1 Table. Postsurgery, all caregivers, except 2 (question on their own job), reported
that they no longer had problems, with scores decreasing significantly to 0 (paired
t test; p < 0.05). The significant changes pre- and postsurgery are visually highlighted
in colour coded Fig 2 and differences in average scores in S1 Table.
10.1371/journal.pntd.0009701.g002
Fig 2
Quality of life responses across 3 domains colour coded by the level of problem caregivers’
experiences presurgery and postsurgery.
Presurgery summaries
Usual activities: Did helping cause problems in doing your (1) own job (mild 47.5%,
moderate 20%, and severe 2.5% problem), (2) own household activities (mild 50% and
moderate 17.5%), and (3) usual leisure activities (mild 45% and moderate 7.5%)?
Social issues: Did you have a problem with (1) joining in regular social activities
outside your home (mild 37.5% and moderate 10%), (2) inside your home (mild 40% and
moderate 15%), or (3) your romantic relationships (mild 20% and moderate 10%)?
Psychological health: Did you feel (1) worried about your own health (mild 17.5% and
moderate 20%), (2) your future (mild 22.5% and moderate 20%), (3) neglected by friends
and family members (mild 35% and moderate 12.5%), and (4) unable to make plans for
the future (mild 22.5% and moderate 5%)?
Quotes
Caregivers provided additional comments on the positive changes to their lives following
the patient’s surgery:
He is able to work, and we are working together to help the home (wife, 45 years).
He helps with household work now (wife, 21 years).
He is able to take care of me as a husband now (wife, 24 years).
Now, he is able to satisfy me sexually (wife, 36 years).
Now, we are able to face the community with no shame since my father is well (daughter,
23 years).
My friends stopped laughing at me (son, 19 years).
I am no longer worried about the future (wife, 36 years).
Conclusions
These preliminary data on caregivers highlight the wider burden of filariasis morbidity
on families and endemic communities if left untreated. Like the struggles that patients
face before interventions, caregivers have their daily living activities, own time,
and ability to work negatively affected by providing additional assistance on a range
of tasks in and around the home. Further, there was a negative psychosocial impact,
with caregivers’ friendships and intimate relationships thwarted, and many felt neglected,
shamed, and concerned for the future [7,14].
Importantly, these preliminary data highlight the significant positive change that
a surgical intervention can have on many aspects of caregivers’ lives, especially
female family members. This has additional wide-ranging societal and economic benefits.
It helps to address gender inequalities, which have been highlighted with lymphedema
[10], and are vital to making progress towards the Sustainable Development Goal 5,
in recognising and valuing unpaid care and domestic work [15]. It also suggests that
the high benefit–cost ratio of 24.5 of surgery recently calculated for hydrocoele
patients by Sawers and colleagues [16] could potentially be doubled if caregivers’
postsurgery economic productivity was included in the calculations. This highlights
the value of this intervention, and a clear message of “buy 1 surgery and get 2 people
back to work” may convince international donors and ministries of health to continue
to invest. For example, in Malawi, this would mean that at least 28,000 people would
benefit from 14,000 surgeries.
Therefore, we advocate that the continued support and scale-up of LF MMDP activities
will have comprehensive physical, social, psychological, and economic benefits to
patients, their families, and the endemic communities in which they live. This will
further help national elimination programmes address the requirements of universal
healthcare as part of WHO NTD Road Map, help families and communities get out of the
poverty cycle, and ensure that no one is left behind [1].
Supporting information
S1 Table
Summary of the frequency, percentage, and mean of domain scores of the 40 caregivers
pre- and postsurgery.
(DOCX)
Click here for additional data file.