Disability,economic and work-role status of individuals with unilateral lower-limb amputation and their families in Bangladesh,post-amputation,and pre-rehabilitation: A cross-sectional study

Abstract

BACKGROUND:

Amputation has significant negative impacts on physical, psychological, social and economic wellbeing of individuals and families. This is potentially compounded by significant delays to rehabilitation in Bangladesh.

OBJECTIVE:

To quantify disability, occupation and socioeconomic status of people with unilateral lower-limb amputation (LLA) and their families in Bangladesh, post-amputation and pre-rehabilitation.

METHODS:

Between November 2017 and February 2018, people with unilateral LLA attending two locations of Center for the Rehabilitation of the Paralyzed, Bangladesh, for prosthetic rehabilitation were surveyed pre-rehabilitation, using the World Health Organization Disability Assessment Schedule (WHODAS-2.0) with additional socio-economic questions. Data were analysed descriptively, using cross-tabulation with Chi-square and Fisher’s exact tests.

RESULTS:

Seventy-six individuals participated. The majority had traumatic (64.5%), transtibial amputation (61.8%), were young adults (37.92±12.35 years), in paid work prior to LLA (80%), married (63.2%), male (81.6%), from rural areas (78.9%), with primary/no education (72.4%). After LLA mobility (WHODAS score 74.61±13.19) was their most negatively affected domain. Most (60.5%) did not return to any occupation. Acute healthcare costs negatively impacted most families (89.5%), over 80% becoming impoverished. Nearly 70% of previous income-earners became economically dependent changing traditional family roles.

CONCLUSIONS:

Following LLA, most participants experienced significant mobility impairment and became economically dependent. The impact of LLA extends beyond the individual, to families who often face challenges to traditional primary earner gendered roles. Improved access to timely and affordable rehabilitation is required to reduce the significant personal and societal costs of disability after LLA.

Keywords

Amputation disability socioeconomic factors occupational status Bangladesh

1 Introduction

In Bangladesh the incidence of lower-limb amputation (LLA) is estimated to be 75 per 100,000 population [1]; more than double the global trend estimate of 5.8–31 per 100,000 [2]. For traumatic amputation, the prevalence in East Asia (11.2 million) is the highest in the world [3]. The major cause of LLA in Bangladesh is trauma (i.e., road traffic or workplace accidents) which disproportionately affects young men in rural areas [4]. Most of these men have education limited to primary or early secondary school and work in physically demanding labouring jobs to support themselves and their families [4, 5].

Previous research has shown that LLA has a significant and negative impact on both the patients’ physical, psychological, social and economic wellbeing and that of their family [6 –11]. Many people with chronic illness experience major financial strain from the point at which acute medical care commences [12]. Bangladesh has limited social welfare or financial support systems to cover healthcare and living costs which often results in high levels of debt [13 –15].

In Bangladesh, families are traditionally reliant on the income of a male member, who financially supports a spouse, children and an extended family [5, 16]. When a male family member has an amputation, the risk of family poverty increases as women are rarely engaged in paid employment [17] and social welfare is limited [18]. In this patriarchal society, the loss of work-roles for men after LLA results in families changing their traditional roles. However, the adoption of the primary earner role by women results in very low wages given their low-literacy levels and a lack of vocational training [19] frequently leading to poverty [15 , 20].

Access to timely rehabilitation can reduce the disability, economic and work-role impact of LLA [21 –23]. Timely access to rehabilitation in Bangladesh is challenged by a range of factors that result in significant delays between amputation and rehabilitation that average 6.5 (range 0.3–60) years [4]. Barriers to rehabilitation include the limited availability of services with most located in the major cities [24], limited referral to or awareness of the role of rehabilitation in work re-integration [4, 25], high service costs [26], and concerns about ongoing costs of prosthetic fitting and maintenance [27].

While previous studies have identified delays in access to rehabilitation in Bangladesh [4 , 24–27], the domains of disability and economic status and changes in work-role after LLA on the impacted individuals and their families have not been explored [6 –11]. Understanding the functional domains affected by LLA (e.g., mobility, participation, cognition etc.) [28], changes in work-role [29], and the association with demographic, amputation, comorbidities and economic status, it is possible to help identify those most at risk of economic hardship as well as help develop priorities for rehabilitation in Bangladesh and other countries with similarly limited resources. The study aimed to quantify disability, occupation and socioeconomic status of individuals and their families in Bangladesh, post-unilateral LLA and pre-rehabilitation.

2 Materials and methods

A cross-sectional survey was completed by people after unilateral LLA and before commencement of their first rehabilitation at two divisional prosthetic rehabilitation centres of Center for the Rehabilitation of the Paralyzed (CRP), Bangladesh, one in the capital city, Dhaka, and the other in a city serving a regional area, Chittagong. The STROBE checklist for cross-sectional studies was used to guide the study reporting process [30].

2.1 Data collection

There were no data available about the size of the population of interest in Bangladesh to underpin sampling strategies. Data was collected between 1st November 2017 and 28th February 2018 using homogenous convenience sampling to recruit individuals with LLA attending for their first rehabilitation admission. Three research assistants (RA) were recruited for data collection, two working from CRP-Savar and one from CRP-Chottogram. All potential participants were approached confidentially in the waiting room by the RAs to enquire about their interest in participation and assess eligibility for study inclusion. Of those 81 people who arrived at the centres within the four-month timeframe and met the study eligibility criteria, five declined to participate.

Eligibility criteria included: being eighteen years or over, having a unilateral LLA (not only toe amputation/s), not having previously participated in rehabilitation, and being able to voluntarily consent to participate and answer questions in Bengali. Toe amputation/s alone were excluded as these amputations have been found to not have significant impact on functional mobility [31]. Ethics approval was received from Human Ethics Committee of La Trobe University, Melbourne, Australia (Human Research Ethics Committee No. HEC19297) and Ethics Committee of CRP (CRP-R&E-0401-222(2)) to conduct the research at their prosthetic rehabilitation centre.

Participants were surveyed using the validated 36-item interviewer-administered questionnaire Bangla version of the World Health Organization Disability Assessment Schedule (WHODAS)-2.0 [32, 33]. The WHODAS 2.0 tool identifies rehabilitation needs, matches treatments and interventions, measures outcomes and effectiveness, sets priorities and allocates resources [32, 33]. Additional demographic, economic and health-related questions were also included (See Appendix).

Following consent, the RA’s interviewed the participants for the survey using the questionnaire in a private room at the Centre. WHODAS survey responses were checked for completeness by the RA. Clinical and demographic data were re-checked for completeness against the centre’s medical records.

2.2 Data analysis

Following screening, data were entered into SPSS 25.0 (IBM Corp. ©, New York) for analysis. Using the validated process prescribed by the WHODAS [28] a ‘total disability score’ and ‘individual domain score’ in six domains (‘cognition’, ‘mobility’, ‘self-care’, ‘getting along’, ‘participation’, and ‘life activities’ involving household work and professional/educational activities) were calculated in 0–100 scale, where 0 indicates no disability and 100 indicates extreme disability. A categorical level of disability for individual domain scores (0 = No disability to 4 = Extreme disability) was also calculated [28].

Work-role and economic data were calculated from the survey responses: occupational status change after LLA (Yes/ No); economic difficulties managing acute care of LLA (Yes/ No); and change of financial role within the family after LLA (Yes/No).

The poverty line data calculation base used the statistical report of Bangladesh statistics 2017, at US$ 1.9/day [34] equivalent to 161.06 BDT/ day (US$ 1 = 84.77 BDT) [35] and then calculated 4836 BDT (US$57) in a month.

Given the relatively small sample and the number of different strata, some data were recoded into binominal groups for descriptive analysis. The hip disarticulation, transfemoral and knee disarticulation were recategorized into a single group called ‘amputations above-the-knee’. Age was recoded from continuous to categorical data results in dichotomous groups: <40 years (young to middle-aged) and ≥40 years (middle to older-aged) [29]. Based on the WHODAS total disability score, participants were dichotomised into either the ‘no and mild disability’ or ‘moderate and extreme disability’ groups. Educational years were grouped to understand the effect of education, as, no/ primary education (0–6 years) and secondary/ higher-level education (6+ years). Marital status categories were dichotomised as married or single (never married/ separated/ divorced/widowed) to identify if having a partner impacts economic outcomes. Cause of LLA were categorised as traumatic (road traffic accident/ other trauma) and non-traumatic (gangrene/ infection/ tumour/ vascular/ other) to identify if a primary/ acute LLA trauma experience compared to secondary/ illness or gradual onset of LLA impact outcome. Comorbidities categories were dichotomised into with or without having one or more of the following: diabetes mellitus/ hypertension/ heart disease/ bronchial asthma/ diabetes mellitus/ hypertension/ heart disease/ bronchial asthma/ other serious illness. The without comorbidity category included participants without any of these comorbid conditions. Participants economic variables were dichotomised based on economic factors, e.g., occupation categories paid (paid worker/ self-employed/ business) and non-paid (non-paid worker/ student/ household work/ unemployed) occupations. To evaluate whether the participants were experiencing poverty after LLA or not, monthly income was dichotomised as above or below the poverty line of Bangladesh. Participant’s financial role within the family was dichotomised to ‘earner’ (combining the two sub-categories of ‘primary-earner’ and ‘contributor’), or ‘dependent’, to better identify the economic impacts on roles. Similarly, ‘occupation’ was also dichotomised to ‘occupation with income’ or ‘occupation without income’ (e.g., home duties), to identify the economic impact on occupational identity.

Percentages and frequency were calculated for all variables. Bivariate analysis or cross-tabulation of variables with Chi-square test for associations (2×2) was undertaken to explore associations [36] given the categorical data and independence of observations. Where the minimum cell count was less than five, the Fisher’s Exact Test p-value was reported.

3 Results

Seventy-six people with LLA from 22 districts of Bangladesh met the study inclusion criteria. Most participants were: men, young-to-middle age, married, living in rural areas, with little or no primary education (Table 1).

Table 1
Participant’s socio-demographic, amputation and health characteristics

N = 76 %

Gender

Male 62 81.6

Female 14 18.4

Age (years - mean (SD)) 37.92 (12.35)

<40 years 42 55.3

≥40 years 34 44.7

Marital status

Married 48 63.2

Single 28 36.8

Never married 24 31.6

Separated 1 1.3

Divorced 1 1.3

Widowed 2 2.6

Geographical location

Rural 60 78.9

Urban 16 21.1

Education (years – mean (SD)) 5.53 (4.23)

No or primary 55 72.4

Secondary or above 21 27.6

Co-morbidities

No 50 65.8

Yes 26 34.2

Diabetic 19 25.0

Hypertensive 4 5.3

Heart disease 1 1.3

Bronchial asthmatic 2 2.6

Other serious illness 0 0.0

Level of amputation

Above knee amputation 25 32.9

Hip disarticulation 1 1.3

Trans-femoral amputation 21 27.6

Knee disarticulation 3 3.9

Below knee amputation 51 67.1

Trans-tibial amputation 47 61.8

Ankle disarticulation 1 1.3

Partial foot amputation 3 3.9

Cause of amputation

Non-traumatic 27 35.5

Infection/gangrene 22 28.9

Tumour 3 3.9

Vascular 1 1.3

Other 1 1.3

Traumatic- road traffic/other accident 49 64.5

	N = 76	%
Gender
Male	62	81.6
Female	14	18.4
Age (years - mean (SD))	37.92 (12.35)
<40 years	42	55.3
≥40 years	34	44.7
Marital status
Married	48	63.2
Single	28	36.8
Never married	24	31.6
Separated	1	1.3
Divorced	1	1.3
Widowed	2	2.6
Geographical location
Rural	60	78.9
Urban	16	21.1
Education (years – mean (SD))	5.53 (4.23)
No or primary	55	72.4
Secondary or above	21	27.6
Co-morbidities
No	50	65.8
Yes	26	34.2
Diabetic	19	25.0
Hypertensive	4	5.3
Heart disease	1	1.3
Bronchial asthmatic	2	2.6
Other serious illness	0	0.0
Level of amputation
Above knee amputation	25	32.9
Hip disarticulation	1	1.3
Trans-femoral amputation	21	27.6
Knee disarticulation	3	3.9
Below knee amputation	51	67.1
Trans-tibial amputation	47	61.8
Ankle disarticulation	1	1.3
Partial foot amputation	3	3.9
Cause of amputation
Non-traumatic	27	35.5
Infection/gangrene	22	28.9
Tumour	3	3.9
Vascular	1	1.3
Other	1	1.3
Traumatic- road traffic/other accident	49	64.5

Two-thirds reported no comorbidities (Table 1). Amputation affected all participants, was caused mostly by trauma, and most were at the transtibial level. LLA resulted in significant levels of mobility disability, economic challenges, and work-role changes post-LLA and pre-rehabilitation (see Fig. 1).

Fig. 1

Diagrammatic summary of results, including characteristics of the participant group pre-LLA, and their disability, economic and work-role status post-LLA and pre-rehabilitation.

3.1 Disability levels of individuals with LLA pre-rehabilitation

The mean total WHODAS 2.0 disability score was 37.35±8.38 (Fig. 2). Of the individual domains ‘cognitive function’ was least impacted. ‘Mobility’ was the domain with the greatest disability. The categorical descriptor of ‘mild levels’ of disability was reported for domains of ‘self-care’ and ‘getting along’. Females reported higher levels of disability across almost all domains compared to males except for the domain of ‘cognition’.

Fig. 2

Level of disability in different dimensions of life (mean and standard deviation) post-LLA and pre-rehabilitation.

3.2 Impact on family economy of managing acute care costs of LLA

Almost 90% of participants reported that the clinical costs of acute care for LLA resulted in economic difficulties for their family (Table 2). A number of factors were associated with economic difficulties of acute care cost on the family including: age at time of interview, (χ2(1) = 7.24, p = 0.007), marital status (χ2(1) = 9.86, p = 0.003), financial role within family (χ2(1) = 28.39, p < 0.001), occupational status (χ2(1) = 25.92, p < 0.001), cause of amputation (χ2(1) = 4.93, p = 0.045) and education (χ2(1) = 10.03, p = 0.005) (Table 3).

Table 2
Participants socio-economic variables

Pre-LLA (N = 76) Post-LLA- Pre-rehabilitation (N = 76)

N % N %

WHODAS measurement of the extent of disabilities

Working at a lower level - post-LLA

No- working at the same level 7 9.2

Yes- working at a lower level 69 90.8

Work in last 30 days (mean (SD))

Days totally unable to work 4.66 (3.75)

Days reduced work 15.4 (6.60)

Occupational status

Paid occupations 61 80.3 11 14.5

Paid worker 36 47.4 3 3.9

Self-employed/business 25 32.9 8 10.5

Non-paid occupations/unemployed 15 19.7 65 85.5

Non-paid worker 1 1.3 2 2.6

Student 9 11.8 7 9.2

Household work 5 6.6 10 13.2

Unemployed 0 0 46 60.5

Occupational status change

No- returned to same occupation 21 27.6

Yes 55 72.4

Returned to different occupation 9 11.8

Failed to return to occupation 46 60.5

Economic difficulties managing acute care cost of LLA

No 8 10.5

Yes 68 89.5

Monthly income*

Below the poverty line 1 1.7 51 85.0

No income 0 0.0 50 83.3

Income below poverty line 1 1.7 1 1.7

Above the poverty line 59 98.3 9 15.0

Monthly income change*

Total income loss (no income) 50 83.3

Partial/not reduced income 10 16.7

Not reduced income 2 3.3

Partial reduced income 8 13.3

Economic role within the family

Earner role 62 81.6 10 13.2

Primary earner 52 68.4 5 6.6

Secondary earner 10 13.2 5 6.6

Dependent role 14 18.4 66 86.8

Change of economic role within the family

No- *remained in the same role*** 19 25.0

Yes- changed from their usual role 57 75.0

Became secondary earner 5 6.6

Became dependent 52 68.4

	Pre-LLA (N = 76)	Post-LLA- Pre-rehabilitation (N = 76)
WHODAS measurement of the extent of disabilities
Working at a lower level - post-LLA
No- working at the same level			7	9.2
Yes- working at a lower level			69	90.8
Work in last 30 days (mean (SD))
Days totally unable to work			4.66 (3.75)
Days reduced work			15.4 (6.60)
Occupational status
Paid occupations	61	80.3	11	14.5
Paid worker	36	47.4	3	3.9
Self-employed/business	25	32.9	8	10.5
Non-paid occupations/unemployed	15	19.7	65	85.5
Non-paid worker	1	1.3	2	2.6
Student	9	11.8	7	9.2
Household work	5	6.6	10	13.2
Unemployed	0	0	46	60.5
Occupational status change
No- returned to same occupation			21	27.6
Yes			55	72.4
Returned to different occupation			9	11.8
Failed to return to occupation			46	60.5
Economic difficulties managing acute care cost of LLA
No			8	10.5
Yes			68	89.5
Monthly income*
Below the poverty line	1	1.7	51	85.0
No income	0	0.0	50	83.3
Income below poverty line	1	1.7	1	1.7
Above the poverty line	59	98.3	9	15.0
Monthly income change*
Total income loss (no income)			50	83.3
Partial/not reduced income			10	16.7
Not reduced income			2	3.3
Partial reduced income			8	13.3
Economic role within the family
Earner role	62	81.6	10	13.2
Primary earner	52	68.4	5	6.6
Secondary earner	10	13.2	5	6.6
Dependent role	14	18.4	66	86.8
Change of economic role within the family
No- remained in the same role**			19	25.0
Yes- changed from their usual role			57	75.0
Became secondary earner			5	6.6
Became dependent			52	68.4

*Excludes participants who did not disclose their monthly income (2.6%, n = 2) and those who had no income pre-LLA (18.9%, n = 14). **Includes dependents (18.9%, n = 14)- no changes observed pre and post LLA among this group.

Table 3

Cross-tabulations of socio-economic, health, amputation variables with outcome variables

Variable	Occupational status changes post-LLA (n = 76)		Economic difficulties managing acute care cost of LLA (n = 76)		Monthly income reduced compared to the poverty line post-LLA (n = 60)^*		Change of economic role within the family post-LLA(n = 76)
	No	Yes	No	Yes	No	Yes	No	Yes
	n (%)	n (%)	n (%)	n (%)	n (%)	n (%)	n (%)	n (%)
Age (at time of interview)	χ2(1) = 5.14, p = 0.023^**		χ2(1) = 7.24, p = 0.007^**∧		χ2(1) = 2.26, p = 0.175^∧		χ2(1) = 5.53, p = 0.019^**
Below 40 years	16 (21.1%)	26 (34.2%)	8 (10.5%)	34 (44.7%)	7 (11.7%)	22 (36.7%)	18(23.7%)	24 (31.6%)
40 years and above	5 (6.6%)	29 (38.2%)	0 (0%)	34(44.7%)	3 (5.0%)	28 (46.7%)	6 (7.9%)	28 (36.8%)
Sex	χ2(1) = 1.99, p = 0.158		χ2(1) = 0.21, p = 1.000^∧		χ2(1) = 0.12, p = 1.000^∧		χ2(1) = 1.01, p = 0.315
Female	6 (7.9%)	8 (10.5%)	1 (1.3%)	13 (17.1%)	1 (1.7%)	7 (11.7%)	6 (7.9%)	8 (10.5%)
Male	15(19.7%)	47 (61.8%)	7 (9.2%)	55 (72.4%)	9 (15%)	43 (71.7%)	18 (23.7%)	44 (57.9%)
Geographical location	χ2(1) = 2.63, p = 0.105		χ2(1) = 0.08, p = 0.672^∧		χ2(1) = 0.75, p = 0.403^∧		χ2(1) = 3.18, p = 0.074
Rural	14(18.4%)	46 (60.5%)	6 (7.9%)	54 (71.1%)	7 (11.7%)	41 (68.3%)	16 (21.1%)	44 (57.9%)
Urban	7 (9.2%)	9 (11.8%)	2 (2.6%)	14 (18.4%)	3 (5.0%)	9 (15.0%)	8 (10.5%)	8 (10.5%)
Education	χ2(1) = 1.59, p = 0.207		χ2(1) = 10.03, p = 0.005^**∧		χ2(1) = 0.75, p = 0.670^∧		χ2(1) = 1.71, p = 0.194
No/primary	13(17.1%)	42 (55.3%)	2 (2.6%)	53 (69.7%)	9 (15.0%)	39 (65.0%)	15 (19.7%)	40 (52.6%)
Secondary/higher	8 (10.5%)	13 (17.1%)	6 (7.9%)	15 (19.7%)	1 (1.7%)	11 (18.3%)	9 (11.8%)	12 (15.8%)
Marital status	χ2(1) = 3.01, p = 0.083		χ2(1) = 9.86, p = 0.003^**∧		χ2(1) = 1.44, p = 0.426^∧		χ2(1) = 4.53, p = 0.033^**
Married	10(13.2%)	38 (50%)	1 (1.3%)	47 (61.8%)	9 (15.0%)	36 (60.0%)	11 (14.5%)	37 (48.7%)
Single	11(14.5%)	17 (22.4%)	7 (9.2%)	21 (27.6%)	1 (1.7%)	14 (23.3%)	13 (17.1%)	15 (19.7%)
Level of amputation	χ2(1) = 0.36, p = 0.551		χ2(1) = 1.69, p = 0.259^∧		χ2(1) = 3.30, p = 0.143^∧		χ2(1) = 0.003, p = 0.956
Above knee	8 (10.5%)	17 (22.4%)	1 (1.3%)	24 (31.6%)	6 (10.0%)	15 (25.0%)	8 (10.5%)	17 (22.4%)
Below knee	13 (17.1%)	38 (50%)	7 (9.2%)	44 (57.9%)	4 (6.7%)	35 (58.3%)	16 (21.1%)	35 (46.1%)
Cause of amputation	χ2(1) = 1.74, p = 0.187		χ2(1) = 4.93, p = 0.045^**∧		χ2(1) = 0.35, p = 0.727^∧		χ2(1) = 0.62, p = 0.431
Traumatic	16 (21.1%)	33 (43.4%)	8 (10.5%)	41 (53.9%)	7 (11.7%)	30 (50.0%)	17 (22.4%)	32 (42.1%)
Non-traumatic	5 (6.6%)	22 (28.9%)	0 (0.0%)	27 (35.5%)	3 (5.0%)	20 (33.3%)	7 (9.2%)	20 (26.3%)
Comorbidities	χ2(1) = 0.01, p = 0.921		χ2(1) = 0.34, p = 0.708^∧		χ2(1) = 0.96, p = 0.471^∧		χ2(1) = 0.01, p = 0.913
No	14 (18.4%)	36 (47.4%)	6 (7.9%)	44 (57.9%)	8 (13.3%)	32 (53.3%)	16 (21.1%)	34 (44.7%)
Yes	7 (9.2%)	19 (25.0%)	2 (2.6%)	24 (31.6%)	2 (3.3%)	18 (30.0%)	8 (10.5%)	18 (23.7%)
Economic role within the family – pre-LLA	χ2(1) = 28.95, p < 0.001^**∧		χ2(1) = 28.39, p < 0.001^**∧		NA		χ2(1) = 37.18, p < 0.001^**∧
Earner	9 (11.8%)	53 (69.7%)	1 (1.3%)	61 (80.3%)			10 (13.2%)	52 (68.4%)
Dependent	12 (15.8%)	2 (2.6%)	7 (9.2%)	7 (9.2%)			14 (18.4%)	0 (0%)
Monthly income - pre-LLA^*	χ2(1) = 0.16, p = 1.000^∧		χ2(1) = 0.017, p = 1.000^∧		χ2(1) = 5.09, p = 0.167^∧		χ2(1) = 0.179, p = 1.000^∧
Below poverty line	0 (0.0%)	1 (1.7%)	0 (0%)	1 (1.7%)	1 (1.7%)	0 (0.0%)	0 (0.0%)	1 (1.7%)
Above poverty line	8 (13.3%)	51 (85.0%)	1 (1.7%)	58 (96.7%)	9 (15.0%)	50 (83.3%)	9 (15.0%)	50 (83.3%)
Occupational status- pre-LLA	χ2(1) = 32.57, p < 0.001^**∧		χ2(1) = 25.92, p < 0.001^**∧		NA		χ2(1) = 32.99, p < 0.001^**∧
Paid occupations	8 (10.5%)	53 (69.7%)	1 (1.3%)	60 (78.9%)			10 (13.2%)	51 (67.1%)
Non-paid occupations or unemployed	13 (17.1%)	2 (2.6%)	7 (9.2%)	8 (10.5%)			14 (18.4%)	1 (1.3%)
WHODAS total score	χ2(1) = 0.89, p = 0.387^∧		NA		χ2(1) = 0.21, p = 0.528^∧		χ2(1) = 5.67, p = 0.029^**∧
No/mild	3 (3.9%)	4 (5.3%)			1 (1.7%)	3 (5.0%)	5 (6.6%)	2 (2.6%)
Moderate/extreme	18(23.7%)	51 (67.1%)			9 (15.0%)	47 (78.3%)	19 (25%)	50 (65.8%)

^*Excludes participants who did not disclose their monthly income (2.6%, n = 2) or had no income pre-LLA (18.9%, n = 14). ^**p≤0.05; ^∧denotes where the Fisher’s Exact Test p-value was reported given the minimum cell count was less than five.

3.3 Impact of LLA on individual’s occupational status

All participants were involved in paid (80%) or unpaid (20%) occupational roles pre-LLA (Table 2). Following LLA, around 60% of participants did not return to any form of paid or unpaid occupation. Among the participants who returned to occupation, 28% returned to their pre-LLA occupation and 12% changed to another occupation (Table 2).

Participants who were paid employees pre-LLA were the most impacted with 78% of this group not returning to any occupation post-LLA, paid or unpaid (Table 2). The other paid occupational group (self-employed/ own business) comprised 32.9% (n = 25) of all participants pre-LLA, and only 8 of these participants resumed their work.

Table 3 describes a Chi-square test for association between different socio-economic, health, amputation variables with outcome variables. Change of occupational status after LLA were associated with age at the time of interview (χ2(1) = 5.14, p = 0.023), and financial role within the family (χ2(1) = 28.95, p < 0.001) and occupational status pre-LLA (χ2(1) = 32.57, p < 0.001) (Table 3).

3.4 Change to monthly income after LLA

Before LLA, 98% of participants reported monthly earnings above the official poverty line of Bangladesh [34] with an income range of 1,000–20,000 BDT (US$ 11.8–236.04) per month. By comparison, following LLA, only 15% of participants retained an income above the poverty line (See Fig. 1 and Table 2).

After LLA, participants monthly income was on average 966.67±2314.06 BDT (US$ 11.41±27.31) [35] and a range of 0–10,000 BDT (US$ 0–118.03). Most of the participants (80%) lost their entire income and 10% reported a partial loss. Only 2 participants reported no income reduction after LLA. (Table 2 and Fig. 1).

The study found no socio-economic, health or amputation variables to be associated with reduced income below the poverty line of Bangladesh following LLA and pre-rehabilitation (Table 3).

3.5 Change to financial role within the family

Prior to LLA, 80% of participants were categorised as either a primary or secondary earner within their families. Of those who were primary earners pre-LLA (69%), only 7% maintained this status, 55% became dependents and another 7% became secondary earners within their families. (Table 2 and Fig. 1). None of the pre-LLA secondary earners remained in that financial role post-LLA, all became dependent on their family for support.

Change of financial role within the family was associated with participant’s: age (χ2(1) = 5.53, p = 0.019), marital status (χ2(1) = 4.53, p = 0.033), pre-LLA economic role within the family (χ2(1) = 37.18, p < 0.001), occupational status (χ2(1) = 32.99, p < 0.001), and WHODAS score (χ2(1) = 5.67, p = 0.029) (Table 3).

4 Discussion

This study aimed to quantify disability, occupation and socioeconomic status of individuals and their families in Bangladesh, post-unilateral lower-limb amputation (LLA) and pre-rehabilitation. The results of this study highlight significant levels of disability challenges to returning to pre-LLA work-roles and associated negative impacts on economic status.

4.1 Rehabilitation potential

The unique characteristics of the individuals participating in the current study are in contrast to the global LLA population (i.e. affecting mostly older-aged with multiple other health conditions and associated with diabetes, vascular disease [2, 37]), supporting their potential for better outcomes following rehabilitation. The study participants were young, with fewer comorbidities, no cognitive impairments or complex disability compared to those with spinal cord injury or stroke [38], and LLA is usually associated with better rehabilitation outcomes [39] including return to work [8].

4.2 Mobility

A key finding was the significant level of mobility disability with several likely explanations. Firstly, participants were yet to receive prosthetic rehabilitation and as such were managing their lives without a prosthesis [40]. Secondly, public access for people with physical disabilities in Bangladesh is limited by the absence of sealed footpaths, uneven or muddy roads, poor drainage systems, inaccessible footbridges, road access blocked by illegal occupants [41, 42] and an absence of accessible public transportation [42].

4.3 Family and economy

Most people with LLA – and by extension, their families became impoverished (below the Bangladesh poverty line) creating a risk for multigenerational poverty and downgrading of socioeconomic class [43]. This change in social status is often associated with shame and embarrassment which is compounded by their ongoing need for personal care and feeling like a burden to their family [44]. In Bangladesh, a lack of financial support for healthcare means challenges arise in paying for acute care costs which impacts the whole family [13]. The impact of acute care-related financial hardship creates a barrier to rehabilitation access which is not experienced by those with LLA in many other settings and has not been previously researched. Individuals often leave acute care after LLA without referral to or awareness of rehabilitation [4], and live with multiple physical, psychological, social [45] and economic challenges [40] limiting opportunities for undertaking work [46] thus resulting in very significant financial difficulties.

4.4 Occupation

A substantial proportion of participants had not returned to their pre-LLA occupation or any occupation. This significant reduction in occupational participation is likely to reflect the physically demanding nature of the work undertaken by people with lower socioeconomic and educational characteristics (e.g., many people in labouring-type jobs) combined with factors like environmental challenges [5]. The absence of financial support and vocational retraining impacts all family members [47] requiring significant changes to traditional financial roles.

Changes in traditional financial roles within families post-LLA are culturally challenging [17, 44]. Given that males are almost always the primary income earner, their disability affects the whole family. Women taking on the primary-earner role often impacts children, particularly girls, who commonly leave school to provide full-time family care, contributing to the generational impact of disability, illiteracy and poverty [48 –50]. For women with LLA, the impact of a physical disability is complicated by cultural expectations that they continue to undertake home duties. However, without appropriate rehabilitation and home modifications, their capacity to undertake domestic roles is extremely limited [5]. Some children leave education to support their mother’s domestic duties or are required to take on paid employment to support the basic needs of the family [50].

4.5 Clinical and rehabilitation implications

The study findings suggest the impact of LLA is not limited to loss of limb(s) but also loss or disruption of mobility, occupational identity, economic status, and both individual and family roles. This further suggests a need for implementation of several important strategies to improve occupational rehabilitation, restoration and return to pre-LLA status [51]. In addition to improvements to clinical and rehabilitation processes, there is a need for economic support systems [52]. Strategies to assist should include provision of cost-accessible acute care and economic and social support systems to assist facilitation of occupational and family-role restoration [51]. Amputation and care plans should be developed with input from rehabilitation practitioners and consideration of patient and family contexts [52, 53]. Timely referral is required from acute to rehabilitation services to upskill this younger participant group, taking advantage of their cognitive abilities [8 , 39]. Rehabilitation should address both mobility and development of skills to improve occupational participation outcomes [52]. Individually focussed services should be designed to address disability and occupational loss within the context of individual, family, community and environmental characteristics [47, 52]. At a community level, considerations should include development of accessible public spaces, transport, and other facilities, to support improved engagement in personal and domestic activities, community access and work participation [18, 38].

4.6 Future research

Further exploration is required to understand the barriers to accessing rehabilitation and the factors contributing to disability pre-rehabilitation. Research is also needed to investigate the cost impacts of acute care and barriers to referral for timely rehabilitation after acute care. Research from the perspectives of people with LLA, rehabilitation clinicians, along with potential and current employers is also needed to inform the development of comprehensive programs to facilitate improved outcomes for individuals with LLA. Longitudinal research over a period sufficient to provide a sample of a size enabling power analysis would assist to provide evidence generalisable to similar population groups. This could be supported by a census of the total LLA population to assist with informing future sampling requirements.

4.7 Strengths and limitations

There are several strengths and limitations to this work that require discussion to help contextualise the results. The sample size was limited as only one or two eligible people post-LLA presented for rehabilitation each day at the centres where data collection took place. The unknown population size of all those with LLA who have not yet attended rehabilitation, and the relatively short window for data collection restricted the sample to the homogenous convenience group. Although the sample size was relatively small limiting the available statistical methods for analysis, it was adequate for a study of association and the homogeneity suggests better generalizability than that of conventional convenience samples [54]. Some readers may be concerned that the method of convenience sampling biased the sample generalisability [54] because those who were unable to attend the centre were not represented in the sample. We can have some confidence in the representativeness of the sample given the cohort were similar to other larger studies [1, 4] of the Bangladeshi LLA population, suggesting this is not a significant concern. The number of people in other strata (e.g., transfemoral amputation) was limited but this also reflects the global LLA population characteristics [2]. Most components of the survey used a validated and reliable tool (WHODAS), but some economic components were self-reported (income, acute care costs, financial status) which may limit reliability. The time between amputation and presentation for rehabilitation was not recorded; this would have been additional useful data to assist the analysis. Previous research in Bangladesh has identified an issue with lack of timely referral between acute and rehabilitations services, with an average delay of 6.5 years for those who eventually access services [4]. Regardless this is the first collection of data of this kind in Bangladesh and provides valuable insight into life after LLA and before rehabilitation.

5 Conclusion

Study participants experienced mobility impairment and disability in the period between LLA and prosthetic rehabilitation. During this period, most did not return to any occupation with subsequent loss of income resulting in economic hardship. Given that most of this population of people with LLA are relatively young with few comorbidities, they would likely benefit from early access to rehabilitation. Improved access to timely and affordable rehabilitation is required to reduce the significant personal, family, and societal costs of disability due to LLA. Findings from this study have potential implications for those with LLA in other low-income countries.

Conflict of interest

The authors of this study confirm having no conflicts of interest in the study.

Footnotes

Acknowledgments

Sincere thanks to the people with LLA who participated in this study, Al-Zamin Tanveer, Sumaiya Nasrin, and Md. Waliul Islam for their assistance with data collection, and Professor Wasimul Bari for assistance with initial data analysis of the WHODAS scales.

Appendix: Additional questions to WHODAS 2.0 - translated from Bangla for publication

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