| Abstract |
Objective: To study the knowledge, accessibility and utilization of the existing Medical rehabilitation services by the PWD (Persons with Disability) in a rural Goan community and their reasons for inaccessibility. Methods and Materials: Semi structured questionnaire with the interview technique was used. Systematic random sampling of families was done. This cross sectional study lasted from June 05 – Oct 06. Sample sizes of four thousand eight hundred six subjects were chosen from the 5 subcentres of RHTC (Rural Health and Training Centre) Mandur (Rural area in Goa). Results : One ninety PWD were found.77.9% of the disabled or the parent, guardian, family member of the disabled have knowledge, only 44.2% have accessibility, 24.2% utilize the rehabilitative services. In which 49.1% of disabilities are temporary in nature. Cataract is the commonest cause of temporary disability. Mental retardation is the commonest cause of permanent disability. Conclusion : There is a need to make people aware of the rehabilitative measures and distribute the rehabilitative appliances in the community set up at a subsidized rate. A CBR (Community based rehabilitation) worker is a must. People should also be made aware of various social welfare measures.
Keywords: Accessibility, disability, Goa, Knowledge, rehabilitation
| How to cite this article: Borker S, Motghare D, Kulkarni M, Bhat S. Study of knowledge, accessibility and utilization of the existing rehabilitation services by disabled in a rural Goan community. Ann Trop Med Public Health 2012;5:581-6 |
| How to cite this URL: Borker S, Motghare D, Kulkarni M, Bhat S. Study of knowledge, accessibility and utilization of the existing rehabilitation services by disabled in a rural Goan community. Ann Trop Med Public Health [serial online] 2012 [cited 2013 Jul 5];5:581-6. Available from: https://www.atmph.org/text.asp?2012/5/6/581/109284 |
| Introduction |
The real test of civilization is known by the services it offers for its downtrodden and disadvantaged group of people. Disabled people are people with most unmet needs in terms of financial, medical and physical needs for which Global data do not exist. [1] Rehabilitative services are a set of measures that assist individuals who experience or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments. [2] They include medical, social, vocational, psychological and physical rehabilitative services.
The 2 major sources of statistical information in the World related to disability prevalence are “World Health Survey (WHS)” and “Global Burden of disease (GBD)” both done in 2004. In the WHS done across fifty nine countries the prevalence rate in the age group of eighteen years and above was 15.6% (650 million PWD among 4.2 billion);18% in lower income countries and 11.8% in higher income. [3] The GBD survey done in seventeen sub-regions of the world estimated that 15.3% of the population had moderate to severe disability (978 million PWD of the 6.4 billion people in 2004) and 2.9% had severe disability (185 million PWD). [4] According to estimates of 2010 there were a billion PWD alive (15.6-19.4% PWD; of these 2.2-3.8% had severe disability). The prevalence here should not be taken as definitive but as an estimate. [3],[ 4]
According to World Health Organization (WHO) two seventy eight million people need hearing aids worldwide. [5] The international society for prosthetics and orthotics and WHO estimates that 0.5% of people in low income countries need these devices. Rehabilitation professionals, trainees, training services are deeply inadequate as compared to the need. [6]
Most visually impaired people in India are concentrated in relatively inaccessible rural areas. Patients tend to ignore diminished vision until blindness sets in. As regard to physical mobility, most handicapped did not cover a large distance unless they were escorted. [7] The accessibility of rehabilitative services is dependent on affordability, physical accessibility and acceptability of services and not merely adequate supply. [8] The disabled people have to be made economically active and socially included which can be possible with necessary social support services? The current study was undertaken in rural Goa since one of the record based studies there, stated that the current social welfare schemes do not penetrate the disabled effectively, even if they exist. [9]
Medical rehabilitative services offered in the study area are:
- GMC (Goa Medical College)
- Private tertiary hospitals
- Private general practitioners (GP).
- RTHC (Rural Health and Training Centre) Mandur (a medical officer in charge with MBBS qualification, MD postgraduates in PSM and interns)
- AYUSH (Ayurveda, Yoga, Unani, Siddha and Homeopathy) practitioners. There are special out patient departments (OPDs) held at RHTC (Tuesday Hypertension, Thursday Diabetes, Monday afternoon Ophthalmology).
- IPHB (Institute of Psychiatry and Human Behavior)- A part of GMC
Research about all disabilities and rehabilitative services for the disabled that too in a resource poor country like India is a rare venture and we thought will add immensely to public health field. This study was also undertaken to give medical benefits to the PWD in terms of speedy operative interventions by personal discussion with the treating doctor or making PWDs aware of social security measures. It is suggested that “no survey without service” should be adopted as a slogan for all epidemiological studies. [10]
| Aims |
To study the knowledge, accessibility and utilization of the existing rehabilitation services by the PWD
To find out common reasons for inaccessibility among them.
| Methods and Materials |
Goa has better demographic indicators compared to most other states in India. The total population of Goa as on 1 st March 2001 was 13, 43,998 (Census 2001). Of these, 64.64% were Hindus, 29.85% were Christians and the others constituted 5.53%. The languages spoken are Konkani, Marathi, Hindi and English. [11] The present study which lasted from June 2005- October 06 was undertaken, as a part of the first author’s Doctor of Medicine (MD) in PSM(Preventive and Social Medicine) dissertation, at RHTC Mandur, rural field practice area under the Department of Preventive and Social Medicine, Goa Medical College. Ethical approval was taken from the institutional ethics committee as well as approval from the village Panchayat was taken to conduct the field survey. It is twelve km away from Goa Medical College. The total population under RHTC Mandur was 36,180 according to the survey of Integrated Child Development Services (ICDS) Anganwadi workers (AWW = an honorary worker working under the ICDS unit in India. Angan literally means courtyard). There are in total eighteen villages and the area is served by 5 sub-centers. This study is the continuation of a study that was conducted to know the prevalence and types of disability in the same setting. [12]
According to pilot study estimates the prevalence of disability was found to be 7.6%. Accordingly the sample size for the main study was calculated with the formula. [13]
N (sample size) = 4pq/ l 2
(p = the crude prevalence obtained from the pilot study, q = 100-p, L= allowable error (10% of the crude prevalence)
This was chosen from the 5 sub-centers of RHTC Mandur. The population was chosen as fixed proportion to the population of the sub-centre ( SC ). Systematic random sampling of family as a unit was done. This was done as the sampling of single person was difficult. Sampling frame was obtained from the AWW registers. The families were systematically chosen and representative sample obtained. Each Anganwadi (AW) covers 1645 people in the area. The average family size was 5.35 persons/family. [Table 1] shows the details of the sampling done in the present study.
| Table 1: Sampling done in the current study Click here to view |
Disabilities studied were:
- Visual
- Hearing and speech
- Locomotor
- Mental illness
- Mental retardation
Definitions and assessment tool was taken from the official Gazette of India. [14]
In children the assessment of visual disability was done in following way. [15]
- For preverbal children (<2 years) eye closing test
- For verbal children (2-4 years) picture naming test
- For children above 4 years – Snellen’s test
The Rinne’s test and the Weber’s test were done in the person to assess for hearing disability
Hearing disability in children-The milestone delay was assessed Locomotor disability in adults- The person was assessed for locomotor disability using the detailed Goniometric evaluation technique. [16] If
- difficulty or loss of any locomotor function
- loss of limb or part of a limb
The detailed Goniometric assessment was done by referring the patient to a specialist and official gazette was followed for the same. The 3 components are the range of motion strength of muscle and loss of coordination of activity. The upper limb is divided in 2 components arm and hand, and lower limb into hip, knee, and ankle components. The shoulder, elbow and wrist were taken and range of motion for each movement was measured. The strength of muscle was checked by testing of power in the muscles and loss of coordination was tested by finger nose test. In the lower limb the loss of coordination was tested by knee heel test. A person is considered to have locomotor disability if the percentage of disability in either of the limbs exceeded 40%. In children milestone delay was used to assess for disability if any relevant history was obtained from the head of the family. [17]
For testing mental illness disability William Menninger’s question for warning signs of poor mental health questionnaire was used. [18]
For assessment of mental retardation as a disability milestone assessment was done
Materials used for assessment of disability were Snellen’s charts, picture charts in children, hand held stainless steel Goniometer, tuning fork, target milestone and mental illness questionnaire.Operational definitions used for the study were
A disabled person/family was considered to have knowledge of existing rehabilitative facility, if any one of the following is fulfilled
- Disabled/parent/guardian/family member has knowledge about the special clinics at rural health centre Mandur and their OPD days or
- If he/she/family member knows if a specialist is available at Goa Medical College
- If they know an appropriate private specialist who is competent enough to treat the condition.PWD is considered to have accessibility if all of the 7 criteria are fulfilled.
- Affordable in terms of finances
- Acceptable
- Easily available
- Can be availed in the presence of an escort
- Convenient in time
- Disabled feels need for the rehabilitative services and
- Minimum fright of rehabilitative interventions
PWD is considered to have utilized rehabilitative care appropriately if
- Disabled has met the concerned person who can rehabilitate him and
- Follows his advice regularly.
The operational definitions were first field tested before implementation among the pilot study subjects. The questionnaire used for assessing knowledge, accessibility was prepared in English, translated in Konkani language; data were collected and retranslated in English. For every individual case the decision of utilization of services were taken depending on the permanent or temporary nature of the disability.
| Results |
The total population of 4868 (936 families) were studied. Out of the 936 families studied 18.37 % (172 families) have one or the other disabled member in their family. The totals PWD were 190. The total disabilities found in the present study setting were 232. Out of these 97 (41.8%) disabilities were visual disabilities, 52 (22.4%) were hearing disabilities, 45 (19.4%) were locomotor disabilities and 38 were mental disabilities (16.4%). PWD having 1 disability were 140, with 2 disabilities were 17, 3 disabilities were 4 and 4 disabilities were 1.
The sex ratio was 1007 females/1000 males. The most of the study population are Hindus (65.72% of the study population) and Catholics 32.76%. The Muslims comprise 1.52%. 61.2% of the study population are married, 9.2% are widowed.
Among the total disabilities 49.1% are temporary disabilities. The other 50.9% disabilities are those in whom social/vocational rehabilitation is possible. All mental disabilities were permanent. Prevalence of Cataract was 1.7% (87.6% of visual disability). Efforts were made to refer these patients to GMC and operate them. The prevalence of presbyacusis was 0.8%. Efforts were made to provide them with appropriate hearing aids. The prevalence of fracture was 0.3%. Efforts were made to transport these patients in RHTC vehicle to the GMC orthopedics department and follow them up. Prevalence of mental disability was 0.7%. Efforts were made to refer these patients to IPHB or pediatrics department in GMC. PWD were also taught about various social welfare schemes and Non-governmental organizations (NGOs) working for disabled in Goa.
[Table 2] clearly states that there is a need to improve utilization of rehabilitative care services among the PWD. Currently only 46 PWDs are really utilizing the services that too they pay from their own pockets. Only 44.2% of PWD have access to services which is clearly highlighted.
| Table 2: Knowledge accessibility and utilization of services among the various types of disabilities Click here to view |
The current study shows that main reason for inaccessibility among PWD was unaffordability of rehabilitaion services(42%). Of these 70% of PWD told the authors that they could not afford operative or medical or physiotherapy interventions and they thought that these should be offered at affordable costs to them.
The other reasons cited were transport (17%) problems. As RHTC and surrounding areas are a bit interiorly situated, road transport is the only source to the Medical College. The PWD also mentioned that there were no buses which were disabled friendly and inconvenient to travel. One of the PWD even mentioned about the indecent behavior of the employed bus staff. One of the PWD mentioned that he worked as a librarian in a nearby private library; he was paid a meager amount, and did not receive his payment regularly. In which 9% of the PWD said that the time allotted was little inconvenient and they had to stand in a queue for a long time to avail the services. Among which 8% of PWD were staying single in their houses and had no escort. Elderly visually disabled PWD did not feel that they have to improve their visual acuity since they were not employed in professions which needed best vision. The authors also conducted a special pedagogic session for such people. The plight of the disabled could easily be assessed by the survey.
[Table 3] was made by taking opinions from various experts in their respective fields.
| Table 3: Distribution of disabilities according to the nature of benefit or treatment required (figures in bracket indicate percentage) $ Click here to view |
After this study the authors directly or indirectly could help fifty five PWD. The others either left their efforts or did not make any. Efforts were made to follow them up, but due to some bottlenecks this was stopped.
[Table 4] shows that most (42.6%) of PWD approach specialists for medical rehabilitation services. In Goa the annual per-capita income is Rs 23, 482 and the urbanization ratio is 41%. The total literacy rate was 82.32%. [11] This is reflected in this table as only 2.1% of PWD approached quacks for rehabilitation purposes. Only 9.5% had not availed any service previously.
| Table 4: Distribution of “Persons with disabilities” according to the Health facility approached for medical rehabilitation# Click here to view |
| Discussion |
Very few published studies in India could be traced, thus the current study was compared with international studies done on similar topic. The study was also compared with grey literature available.
In study done at an urban slum of Mumbai, the prevalence of visual impairment was 18%. Of these 43% were having low vision and 20% blind in one eye, 27% blind in both the eyes as per WHO criteria. Cataract (31%) was the major cause of visual impairment and blindness followed by refractory error (24%), Pthesical globe (19%) and corneal opacity (14%); other causes of blindness amounting to 12% were due to glaucoma (1%), optic atrophy (0.3%) retinopathy (1%), senile macular degenerations (6%) and uncorrected Aphakia (5%). [19]
In another study in same study setting found the prevalence of locomotor disability to be 5.6 %. [20] Both the study there was adequate knowledge among PWD but inaccessibility was the main problem. Since both the studies were conducted in slums (urban poor temporary settlements) the prevalence was found to be very high as compared to the current study.
Eide AH et al. did a study regarding living conditions of PWD in Namibia, South Africa in 2002. They found that only 1/4 th of the PWD received financial assistance through social welfare schemes, 1/3 rd of those who received grant had already an old age pension. Vocational training, counseling services, assistive devices, welfare services and educational services were only received by 30% of the PWD. In which 60% of PWD find public transport to be accessible and 25% feels school is accessible. Assistive devices were actually utilized by 1/5 th of PWD, while actually 2/3 rd were in dire need. [21] These findings were also supported by studies in South African areas like Zambia, Zimbabwe and Malawi where they found that cost, distance and lack of transport were prime reasons for inaccessibility among PWD. [22],[23],[24] Evaluation of these report are also available.
Chatterjee et al. did a study in India with persons suffering from chronic schizophrenia using a prospective treatment and comparison group design, the study found that the CBR model was more effective in reducing disability and within this group the compliant group had better outcomes than partially or non compliant individuals. [25] The present study conducted in our study setting stated that 9.4% person did not feel any need for any further rehabilitative interventions. Also 7.5% had fear of treatment which can only be taken care by rehabilitation at the community level. Appropriate CBR model still is not as yet existent in Goa.
Finnstam et al. did a study in a slum area (Kachi Abadi) in Pakistan . The questionnaire from the WHO manual in a house-to-house survey was used to gauge the prevalence of disability and identifying persons in need of intervention. Eighty two persons were trained and revaluated after 1-2 years using the WHO questionnaire and it was found that 66 (80%) had made improvement in one or more areas of the programme such as looking after self, moving around the house, attending school etc. [26] The current study found that all of the disabled could be benefited by one or the other rehabilitation interventions offered by the state government if properly availed. Gaps in availing rehabilitative care services were also found in the current study.
Vijaykumar et al. initiated a Community-based rehabilitation (CBR) programme for incurably blind persons in Theni district of southern Tamilnadu. They found that one-fifth (n=68, 17.00%) of incurably blind persons refused the services provided. The major reasons for refusal included old age and other illnesses (41.18%) and multiple handicaps (19.12%). Twenty-seven (6.75%) persons had either migrated or died, and twenty nine (7.25%) persons were already able to function independently. So they concluded that better understanding of barriers in service utilization is required. [27] In the current study setting there is no CBR programme which is the need.
Bhat G states that hearing aid was found to be more beneficial to subjects with severe hearing impairment. There is a need to bring forth newer and better varieties of hearing aids and other techniques. [28] In the current study we found that prevalence of hearing loss due to Presbyacusis was 0.76%. Thus hearing aids if distributed will be of much use to the community here. Low cost hearing aids were an urgent felt necessity in the current study setting.
Finally to conclude in Goa, where the health care is one among the best in the country; medical college is just 14 km away from the current study setting, still accessibility seems to be a distant dream. Thus the current study raises lots of doubts which need answers which can be only possible by further research in this field.
| Recommendations |
There is a need to distribute the rehabilitative appliances in the community set up. A CBR (Community based rehabilitation) worker is an urgent need in the current study area. Making the rehabilitative devices available at a subsidized price is the duty of the Government.
The need to make people aware about the various social welfare measures cannot be ignored. Social welfare department of the state in collaboration with medical colleges, media and education department must work hand in hand for this task. More such studies in Goa, India especially those discussing the health care inaccessibility among the disabled group will help in throwing adequate light to the Government of the state regarding this burning issue.
| Acknowledgement |
The authors would like to sincerely thank the
- Medical officer of RHTC Mandur -General support
- Anganwadi workers (AWW) acknowledgments of technical help
- The disabled people and their families
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DOI: 10.4103/1755-6783.109284
| Tables |
[Table 1], [Table 2], [Table 3], [Table 4]
