THE NURSING NEEDS OF
PERSONS WITH DISABILITIES IN
NEPAL
- A CAREGIVERS PERSPECTIVE
FRANZ - JOSEF BJÖRCK
PHILIP SÖRENBY TUNELD
THE NURSING NEEDS OF
PERSONS WITH DISABILITIES IN
NEPAL
- A CAREGIVERS PERSPECTIVE
FRANZ - JOSEF BJÖRCK
PHILIP SÖRENBY TUNELD
Björck, F & Sörenby Tuneld, P. The nursing need of persons with disabilities in Nepal - a caregivers perspective. Degree projet in nursing 15 högskolepoäng. Malmö University: Faculty of Health and Society, Department of health science, 2018.
Background: There is a lack of studies made on the needs of caregivers of persons with disabilities in south asia. The study will hopefully lead to better care for persons with disabilities and work environment for the caregivers. Aim: The aim was to describe the experiences from caregivers about caring for people with disabilities. Methods: Semi-structured taped interviews were conducted with caregivers. Eight caregivers were interviewed, one was a physiotherapist, three were employed caregivers and four were relatives. Six interviews were in nepali with a translator and two in english. Caregivers were defined as anyone above eighteen years at any level of education with experience of providing care for persons with disabilities. The interviews were conducted in two shelters, one hospitals and one rehabilitation centre in Kathmandu. The english data was transcribed in verbatim and analyzed using qualitative content analysis. Results: The discovered subcategories were daily life, organization, long term life changes and perceptions. Conclusions: Accessibility to education, rehabilitation,
employment and public transport is needed. Increased access to assistive devices is also requested. A societal change with improved knowledge about disabilities, increased acceptance and structures to avoid a loss of income.
OMVÅRDNADSBEHOV AV
PERSONER MED
FUNKTIONSHINDER I NEPAL
- FRÅN VÅRDGIVARENS
PERSPEKTIV
FRANZ - JOSEF BJÖRCK
PHILIP SÖRENBY TUNELD
Björck, F & Sörenby Tuneld, P. Omvårdnadsbehov av personer med funktionshinder i Nepal - från vårdgivarens perspektiv. Examensarbete i omvårdnad 15 högskolepoäng. Malmö universitet: Fakuluteten för hälsa och samhälle, instutionen för vårdvetenskap, 2018.
Bakgrund: Det är brist på studier av vårdgivarnas behov i södra Asien. Studien kommer förhoppningsvis att leda till bättre vård för personer med funktionshinder och arbetsmiljö för vårdgivarna. Syfte: Beskriva vårdgivares erfarenheter i vård av funktionshindrade. Metoder: Semi-strukturerade bandade intervjuer
genomfördes med vårdgivare. Vårdgivare definierades som vem som helst över arton år på alla utbildningsnivåer med erfarenhet av vård av funktionshindrade. Intervjuerna genomfördes i två boenden, ett sjukhus och ett rehabiliteringscenter i Katmandu. Den engelska data transkriberades i verbatim och analyserades med hjälp av kvalitativ innehållsanalys. Resultat: De upptäckta kategorierna var dagliga livet, långsiktiga förändringar, organisation och uppfattning. Slutsatser: Tillgång till utbildning, rehabilitering, sysselsättning och kollektivtrafik behövs. Ökad tillgång till hjälpmedel är också efterfrågad. En samhällsförändring med förbättrad kunskap om funktionshinder, ökad acceptans och strukturer för att undvika inkomstförlust.
INDEX
INTRODUCTION 4
BACKGROUND 4
Health care 5
The BAS organization 5
Disability 6 Nursing profession 8 PROBLEM AREA 8 AIM 8 METHOD 9 Method description 9 Study design 9 Setting 10 Participants 11
Data collection procedure 11
Data management and analysis 11
Ethical considerations 13 Pre-understanding 13 RESULTS 13 Challenge 14 Coping 16 DISCUSSION 18 Methods discussion 18 Results discussion 21 CONCLUSION 24 FURTHER RESEARCH 24 REFERENCES 25
INTRODUCTION
Persons with disabilities have a basic need for nursing and cannot always take their own action. This means that they are more vulnerable and nurses need to have a deeper understanding of the conditions under which persons with disabilities live to meet their wishes and autonomy with respect and integrity. From prior experience working in home care and during placement within clinical education, we have met people with disabilities. We have identified there is a certain lack of knowledge and insecurity in caring for patients with disabilities even in Sweden. Therefore, it is important to learn more about the nurse's role and function in the care of these people.
The Swedish Development Agency (Sida) offers scholarship for Minor Field Studies (MFS) to students at higher education in Sweden to conduct a MFS project in prioritized countries, such as Nepal, situated in south Asia. In order to gain access to a field of interest the investigators of this degree project in Nursing at Malmo University contacted the non-governmental organization Brahmasthani Awareness Society (BAS) in Nepal in order to identify any particular problem area related to nursing. BAS reported that they had identified a need for more knowledge about the care and nursing needs of people with disabilities. Nursing care for persons with disabilities is an important and challenging area for
registered nurses worldwide. Given the opportunity to carry out a MFS project in cooperation with BAS a deeper knowledge about care needs for persons with disabilities that also can be transferable to patients in Sweden will be gained. Knowledge that we can use in our future profession as registered nurses.
BACKGROUND
Nepal is a country in south Asia with a population of 29 million. Kathmandu is the capital city. The country stretches along the Himalayan mountain chain, which forms the border between Nepal and Tibet. The topography rises from low
altitudes of 70 meters to the highest point in the world at 8,848 meters, the Mount Everest (CIA 2017).
There is a great diversity of ethnic groups, languages and religions in Nepal with more than a 100 different groups and languages. Nepali is the language spoken by 47 % of the population. The majority have Hindu as their religion (CDC 2017). According to the U.N. Development Program-index in 2013, Nepal is amongst the least educated countries in the world and has an adult literacy rate of 65% which is almost 30% lower than the world median (Countryfacts 2017).
Nepal is one of the world's poorest countries. A long war has resulted in poor economy, infrastructure and widespread poverty. A powerful earthquake hit the
country in 2015, houses were completely destroyed and thousands of people lost their lives (Red Cross 2017).
Health care
“The ultimate goal of primary health care is better health for all.” (WHO 2017a). WHO has identified five elements of achieving better health for all. These
consists of reducing exclusion and social disparities in health care, organizing health services around people's specific needs, integrating health into all sectors, pursuing collaborative models of policy dialogue and increasing stakeholder participation (WHO 2017a).
The International Council of Nurses (ICN) defines nursing as autonomous and collaborative care of individuals of all ages, families, groups and communities, sick or well and in all settings. This includes the promotion of health, prevention of illness, the care of ill, persons with disabilities and dying people. Promoting education is also a key in nursing (ICN 2012).
Health care services in Nepal are provided by both the public and private sector and is by international standards in poor state due to lack of funding. In the year 2014 Nepal had only approximately 0.6 physicians and 2.0 nursing and midwifery personnel per 1000 people (WHO 2018a) with 3 hospital beds for every 10,000 people in 2012 (WHO 2018b). Proper medical facilities and services are
centralized in the capital Kathmandu and patients from all around the country are referred there. Many rural areas in the country are hard to access and medical assistance might be hours if not days away. Even though the Nepalese government subsidizes poor patients with minimal cost treatments, many are unable to access these public funds. There are also great challenges of locating doctors in the specific fields (BAS 2017). The situation became worse in 2015 after the
earthquake (Reuters 2015). Nepalese government is unprepared to take care of the rising amount of persons with disabilities, which will only rise in the aftermath of the natural disaster. There are however suggestion on how to increase
preparedness in case of another such event (Landry 2015; Landry et al 2016; Sheppard et Landry 2016).
The BAS organization
Brahmasthani Awareness Society (BAS) is a non-governmental organization in Kathmandu, Nepal. BAS’s primary focus is the health sector and to accommodate patients who cannot afford to be hospitalized for their treatment. The organisation currently runs a shelter that can house over 50 patients. The patients at the shelter are offered food, medical supplies, education, physical therapy and transport to and from the hospital. At the shelter, BAS practices equal rights and self empowerment. The aim is to encourage the persons with disabilities to become self-reliant and to be able to live a normal life. The organization aims to be the representative of those who are unable to care for themselves and to be the voice of those who are unaware of their rights in society (BAS 2017).
In cooperation with the government of Nepal, BAS is planning to expand and set up shelters for persons with disabilities in every state and one transit home for
every district hospital. By working with the government instead of
non-governmental organisations, the president of BAS is hoping that the shelters and transit homes will become permanent establishments. As of April 2018, BAS are in early negotiations with the government about a collaboration and have been looking at five different properties around Kathmandu that could potentially suit BAS’s needs. By opening further shelters many more patients and persons with disabilities would be able to complete their treatment at the nearby hospital.
The investigators of this study have been in contact with the current president of BAS, and were invited to interview caregivers about their needs in regards to caring for persons with disabilities. The knowledge gained will be used in organizing the care at the BAS home with the Nepal government.
Disability
WHO defines disabilities as impairments, problem in body function, activity limitations and participation restrictions in life situations. Disability is not considered a health problem. It is a complex phenomenon with interaction
between a person’s body and the society in which the person lives in. People with disabilities have the same health needs as people without disabilities. But due to poverty, lack of education and social exclusion, persons with disabilities are more vulnerable to secondary conditions, such as pressure sores or urinary infections (WHO 2017b).
The Nepalese constitution defines persons with disabilities as persons who are mentally or physically unable or incompetent to lead a normal life. The term includes persons whose mobility is impaired, who suffer from spinal curvature, have visually impaired in one or both eyes, have hearing impairment, are unable to speak properly, or whose hands, legs, or fingers are impaired or missing. A person with any disability; including the amputation or paralysis of both legs; amputation of both hands; blindness, or inability to work due to impaired vision; amputation or paralysis of one leg; inability to walk, requiring the use of a wheelchair , hearing impairment, or intellectual disability. Persons with
disabilities are seen as a burden to the family and there is very little opportunity to support oneself. An acute lack of trained and skilled professionals in the field of habilitation and rehabilitation is severely impacting medical, psychological, social and vocational support for the disabled community. Instead, personal care workers with limited or no formal training are left to care for persons with disabilities (UN Nepal Information Platform 2017).
To improve the living conditions of persons with disabilities 164 countries have ratified United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), among them India but not Nepal (UN Geospatial Information Section 2018). Articles 9 and 27 of UNCRPD deal with accessibility respectively work and employment, by striving implement the UNCRPD basic human rights can be achieved for persons with disabilities (UN Division for Social Policy and
A study from India (Ramachandra et al 2016) has shown that disability had a prevalence of almost 7.5 times the official sources in India. The study was
conducted with 4134 participants in rural India, out of these 431 (10.4%) reported disability. The prevalence of impairment was 4.7% mobility, 2.1% seeing and 1.8% fine motor skills. The conclusion of Ramachandra et al. (2016) that those with disability have low employment and poor socioeconomic status and recommended central and state level facilities to help improve their condition. Anotherstudy from India (Saigal & Narayan 2014) showed that persons with disabilities face difficulty in accessing basic amenities such as canteens, elevators and toilets within the workplace 50% out of the 50 respondents had difficulty accessing the restroom and2% had access to the library.
Cerebral palsy
Cerebral palsy (CP), is a neurological conditions that affect muscle control and movement (Alvarez 2018). CP is caused by brain injury that occurs prior to birth or during the delivery of the child. Symptoms include the inability to tighten and relax muscles, tremor, ataxia, dysfunctional bladder and bowel control, seizures, drooling, and problems with feeding and swallowing and learning disabilities. Vision and hearing might also be affected. Since the level of disabilities varies from person to person, there is a big difference in what treatments and care they need. The treatments should focus on increasing mobility and strengthening muscle control. Such treatments include physiotherapy. A person with disabilities associated with cerebral palsy face grave limitations and restrictions in daily life and are often incapable of caring for themselves. The most important person in the lives of persons with these disabilities are their caregiver. The caregiver must be able to recognize the person's needs and adjust the level of care to the person's abilities (ibid).
Limited research has been conducted in Nepal regarding CP. But according to Shresta et al (2017), the overall quality of life is fairly good in patients with CP in Nepal. However, pain and disability hinders quality of life and these persons are reported to experience reduced physical quality of life. However the prevalence of Cerebral palsy in Nepal is unknown.
Autism
Autism is a neurological developmental disability that affects the way the brain processes information (Klasen McGrath 2009). Symptoms commonly found in persons diagnosed with autism are cognitive difficulties, limitations in social interactions, lack of spoken language, avoiding eye contact, difficulties in planning and reasoning, repetitive mannerisms, dysfunctional motor skills and special interests (ibid.)
The treatments should be based on knowledge of the diagnosis and how it affects the person's ability to learn. The more the caregiver learns about the diagnosis and the disabilities coming with it, the easier it will be to manage daily life. Since persons diagnosed with autism often have difficulty to process information and
impressions, the person requires a predictable and calm calm environment (Klasén McGrath 2009).
As stated by Hossain el al (2017) the prevalence of autism in many South Asian countries is still unknown. Research on the prevalence of autism in this region has only been done by three countries. These studies reports a prevalence of 0,09% in India; 0,8% in Bangladesh and 1,07% in Sri Lanka. The prevalence of Autism in Nepal is unknown.
Nursing profession
Nursing care for persons with disabilities is an important and challenging area for registered nurses worldwide. By carrying out a MFS in cooperation with BAS in Nepal we hope to gain deeper knowledge of how the working conditions of caregivers can be improved to improve the care given to persons with disabilities. Knowledge that is transferable and that can be used in our future profession as registered nurses. According to ICN Code of Ethics the nursing profession consists of continuous education (ICN 2012). Through this study we hope to educate ourselves and by spreading the study and strengthen the nursing profession.
One aspect of nursing is to promote an environment in where human rights, values, customs and beliefs are respected (ICN 2012). The investigators hope for a deeper understanding of nursing in a different culture and in a less developed country. The cultural learning might be applicable when meeting patients from diverse socioeconomic situations and with multicultural backgrounds in Sweden providing a more holistic care.
PROBLEM AREA
There is a lack of research about the caregiversexperience of need in regards to the care for persons with disabilities in southern Asia. By exploring the experience of needs of caregivers care for persons with disabilities, goals to improve the working conditions of caregivers can be formulated and achieved thereby improving the care for persons with disabilities.
AIM
● The aim was to describe the experiences from caregivers about caring for people with disabilities.
● The objective was also to describe the perception of needs for care of persons with disabilities.
METHOD
First is the method description followed by the study design, setting, participants, data collection, data management and analysis. Even though Polit and Beck (2014) raises the lack of a common vocabulary for quality in qualitative research, we have chosen to use the proposed “‘gold standard’” (Polit & Beck 2014, p322) as defined by Guba and Lincoln (1994) throughout the following parts.
Method description
To collect the subjective perspective of the informants the method chosen was descriptive qualitative study. Qualitative studies aims to explore the subjective reality of the informants (Polit & Beck 2014). By focusing on the subjective realities of the informants a holistic understanding could be striven for. While the time spent in Nepal was not enough to get any deeper cultural understanding as specified in ethnographic studies, the investigators aimed to have as a deep
cultural understanding as possible to try to increase the authenticity and credibility of the study, especially due to the investigators coming from different culture.
Study design
The chosen study design to gather data was through semi-structured interviews. Semi-structured interviews are conducted with a topic guide to ensure that the chosen areas of focus are addressed and allows for in-depth, open ended questions (Polit & Beck 2014) and at the same time gives the investigators flexibility in what order, how the questions were asked and ask follow-up questions when deemed that they would garner more information (Green & Thorogood 2014). Semi-structured interviews were chosen for the opportunity for the interviews to be focused while at the same time allowing for more time to have more
informants over the course of the study. By allowing for both more informants and in-depth questions the credibility, dependability and authenticity of the study was aimed to be increased (Holloway & Wheeler 2010).
The questions in the topic guide (Appendix A), aimed to be open-ended, non-judgemental and non-leading. They were chosen by the investigators and then modified with a few iteration after getting feedback from the university. By having a topic guide it allowed the informants to speak freely while at same time allowing the interviewer to direct the interview towards the aim and objective of this study. The interview guide is the appropriate tool to achieve this (Holloway & Wheeler 2010).
The analysis process was decided to be qualitative content analysis. This is used to analyze narrative material and to be able to identify themes and categories within the data. This is done by breaking down data into smaller pieces and codes. According to Polit & Beck (2014), this is the proper proper analytic procedure in an ethnographic study.
Setting
The study was conducted in Kathmandu, Nepal. The first week was dedicated to try to get a cultural understanding to minimize cultural misunderstandings and improve authenticity. Four different locations were used. To keep confidentiality code names will be used. All were situated within Kathmandu. Henceforth named location A - D.
Location A is a shelter. The roads leading to and from the shelter are rocky and uneven making transportation with wheelchair difficult, especially during rain. Since the shelter is situated away from the main road, the sounds from daily traffic is somewhat lessened. The third floor of the shelter is occupied by eight persons with disabilities. The patients are diagnosed with either cerebral palsy or autism. All of these patients have become permanent residents of the shelter. Some of the patients were abandoned by their families at the nearby hospital. Since the hospital could not care for them on a permanent basis and reached out to the shelter for assistance.
Due to these patients physical and mental disabilities they depend on the
caregivers in their daily life in various degrees. All the caregivers of location A are volunteers. None of them have any formal education in caring for persons with disabilities or any kind of healthcare. Some of the caregivers are family members of former patients and some are former patients of the transit home. The
caregivers are paid in food and accomodation. A day in the shelter starts at 4 am in the morning and begins with assisting the persons with disabilities with breakfast. Most of them have to be fed by the caregivers. The day continues with changing diapers, bathing, trimming of nails, cleaning of ears, doing the laundry, oil massage, physical therapy and reading to the persons with disabilities. Location B is a shelter and is a non-governmental organisation (NGO) and nonprofit organization with a focus on the welfare of children with disabilities. Specially those afflicted with cerebral palsy and other disabilities, both physical and mental. The shelter is staffed by two persons as caregivers for the,
approximately ten, children around the clock. The home however lacks both supplies and equipment, the funding the organization gets from donations is usually needed for food.
Location C, is situated in the east part of Kathmandu valley, this hospital admits patients whom serve within the military and their relatives. To clarify:no staff was selected for interview. A caregiver to an admitted patient was selected.
Location D is a rehabilitation Center. The center provides physical rehabilitation to persons with disabilities, such as persons diagnosed with cerebral palsy,
amputees and stroke victims. The persons with disabilities come to the center on a regular basis for their therapy. Walking aids and prosthesis are assessed and distributed. The goal of the center is to enhance physically mobility and enhance the living conditions of these persons.
Participants
Inclusion criteria for the informants were any caregiver with experience of caring for persons with disabilities, in order to get holistic data. A caregiver was defined as a person who provides direct care to persons with disabilities. These include health professionals of any level of education, such as nurses, doctors, orderlies, physiotherapist, volunteers etc. This to reach the broadest possible level of experience, background, age and gender among the informants to increase the credibility and dependability of the study and possibly even transferability between professions. Other inclusion criteria was 18 years of age or older, given informed consent, English speaking or Nepali speaking with a translator present. The president of BAS acted as our key informant enabling access to the field. From the first visited location only three informants were recruited. Snowball sampling was then used to get more informants. Eight informants in total were included in the study. All were female. All lived in Kathmandu. Four of the informants were caregivers to their relatives on full time. Three of the informants were working at a shelters on full time. One informant was a physiotherapist. Two of the informants were english speaking. To protect the informants confidentiality no further background information on the informants will be included.
Data collection procedure
First the study was introduced and potential informants recruited. Usually the time for the interview was scheduled to be held in the same day as it was suggested by the informants. A suitable environment was chosen with a focus on a quiet private area, both for confidentiality and recording quality. Before starting the interview the study was introduced again and the informed consent form signed.
One, previously chosen, investigator conducted the interview. The second
investigator took fieldnotes. After the first interview the topic guide (Appendix A) was revised since a couple of questions produced one and the same answer. These questions were considered redundant. For the later interviews the revised topic guide was used. To make sure the necessary areas were explored, in some cases the investigator conducting the interview consulted the second investigator, in regards to possible further questions or areas to explore. Six interviews were held in Nepali with a translator, chosen with the help of BAS, with experience in both spoken and written nepali and english and two interview were held in english. The interviews had an estimated duration of 10 to 20 minutes.
During the interviews, questions were expanded upon while encouraging the informants to talk freely and narratively. By conducting the interviews this way honest opinions and answers hopefully were obtained (Green & Thorogood 2014).
Data management and analysis
After each interview, the audio recording was transferred to two different code-locked USB-sticks. Thereafter the recording was transcribed verbatim as a word file. In the cases where the interview was conducted in Nepali, only the english part was transcribed. The word files were stored on the USB-sticks, kept in a safe
place only accessible by the study managers. To maintain confidentiality each informant was allocated a random letter (e.g. A, B, C etc.).
After interviewing eight informants, due to time constraints and difficulty of getting more informants, the next phase was initiated. Due to the language barrier the investigators could not judge if data saturation had been achieved. As per the instruction to content analysis as described by Lundman and Hällgren Graneheim (2017) the transcripts were read through to get a general feeling for the material. Then the investigators started coding together to ensure that the interpretation was unanimous. After coding had been completed the investigators divided the coded material and started creating subcategories. Then the sorted codes were then compared and adjusted to create accordence between the investigators subcategories and coding. Lastly the subcategories were divided into the categories that also is the result of this study. In the end no coding was in two categories. No dissonance was found in regards to the given categories. When creating the categories the context of the study was taken into consideration (ibid).
Table 1. Examples to illustrate the analysis process and coding
After the exam paper is approved by the home institution at Malmö university all data on the USB-sticks and the digital voice records and field notes will be destroyed.
Transcript Code Subcategor
y Category
“She thinks thats she has a hope that one day he will be able to stand on his feet. So the hope for her son and the sense of satisfaction for the rest of the kids are positive things that she finds in her work. -
Interview C
Hoping that he can stand on his own feet is the positive thing.
Perceptions Coping
“She has a lot of troubles in her family. She lives alone. And it is cuz of the child that everyone doesn't want to accept her back in her family. So she has to take care of a lot of things by herself and that's very, very challenging for her, to be
disconnected from the family and taking care of everything by herself.” - Interview
E
She is caring for the person on her own and her family does not want to accept her because of the disability.
Long term
Ethical considerations
Before leaving for Nepal an ethical review of the MFS-study proposal was done by the Ethical council at the faculty of Health and society, Malmö University. On the 20th of March 2018, ethical approval was given. Application number HS 2018 nr 2.
In Nepal the informants were handed the information letter and the consent form in English during the introductory meeting. The letter was verbally translated into Nepalese by the translator. The investigators were accessible to answer any questions that the informants may have had before, during and after the interview. The informants were informed that participation was voluntary and that they could stop participating at any time. The letter of consent was either signed with a signature or a thumbprint. To ensure the confidentiality of the informants, the translator also signed an agreement of confidentiality.
The investigators kept all information so that no unauthorised person may access the material. Neither the informants or the key informants names will appear in any report resulting from the study. After the study is completed and the exam paper is graded all the material will be destroyed. The study will be published in Malmö University Electronic Publishing and Swedish Council for Higher Educations Minor Field Studies-publishing platform. Additionally the study will be mailed to the current president of BAS in Nepal.
Pre-understanding
Both investigators are 3rd year students in the Bachelor programme in Nursing at
Malmö University, and had completed two years of nursing education before initiating the study. Both had practical and theoretical pre-understanding of nursing care of persons with disabilities within the program and from several years of working with people with disabilities in Sweden.
RESULTS
The collected data consisted of eight interviews in total, six of the interviews were conducted in Nepali with a translator and two in English. Only the english part of the interviews conducted in Nepali were transcribed.The interviews totaled 164 minutes of recorded material and 22 pages of transcribed text. From the content analysis two major categories were identified: Challenge and coping, see Table 2. Some of the quotations used are in first-person voice when the interview was conducted in english and some in third-person voice when a translator was necessary.
Table 2. Categories and subcategories after content analysis Categories Subcategories
Challenge Daily life Organization
Coping Long term life changes Perceptions
Challenge
The category Challenge refers to the different aspects of challenges that the caregivers experience when caring for person with disabilities. It involves
activities in daily life, mobility, accessibility, transport, lack of knowledge, social activities, rehabilitation, manpower/time and lack of physical space. These points were divided into the subcategories; Daily life and Organization.
Daily life
Activities in daily life (ADL) are basic needs such as cooking, cleaning,
showering, brushing teeth, toilet habits. These are assisted by either a relative or a caretaker at the shelters. The attitude is one of acceptance of their duties. The persons with disability are viewed like children that need the help in their life. “They are to be taken care of all their needs. So, feeding them, could be bathing them, trimming their nails, cleaning their ears or changing diapers, bring dirty clothes to the laundry, bringing them upstairs, taking them down. ” - Interview A Moving to and from the bed, bathroom or outside is a challenge. By the use of aids, such as crutches, wheelchairs or even bikes, where accessible most of the obstacles could be overcome. However not everybody can afford any type of aid. A few informants opined a view on how the public space is constructed. Stairs and steep hills are everywhere.
“Most of our structures are not yet disabled-friendly. So even in the shelter we don’t have anything to lift them up. Or like a ramp to roll them up. Or you know anything uhm, to just lift them down from the bed to the uhm chair. So it all has to be done manually and it’s quite though sometimes” - Interview A
Social activities pertains to entertainment, play and anything to keep from boredom. Being isolated and not being able to freely move around is a
psychological issue. TV and playing were two reported ways of managing this obstacle. One informant reported the need for variety, that TV as sole source of entertainment was not sufficient and wished for more volunteers at the shelter to be able to give social exchange.
The mode of transport around the country is by bus with one way trips taking up to twelve hours, with damaged roads and traffic jams it is not unusual that the time is even longer, making transport to and from Kathmandu an almost insurmountable problem. Within the city the option are increased with
microbuses, tuk tuks and taxis. Microbuses are usually fully filled with people already and neither buses or microbuses are too willing to bring on a person with disability since it takes time and space from other passengers. The small tuk-tuks have usually all their 6 seats filled, with some passengers even standing up. Spending money on a taxi is usually out of the question with the price being almost twenty times as much as a bus ticket. Since physical therapy needs to be done daily the transport is a big issue.
“In peak hours its very, very difficult to find a space in the bus to sit down. So she might have to be standing with this girl in the arms and that's very difficult. You can opt for a taxi but that's very expensive.” - Interview F
Daily rehabilitation was also described as a challenge. Physical therapy is important for increased mobility and has the most beneficial effect if it can be done daily. Both caregivers and relatives reported that they conducted daily physical therapy on their own based on what they had seen the physical therapist do.
“If he could have some physiotherapy help, kind of thing from someone else, then maybe it would help his condition.” - Interview E
Organization
There was a corresponding relationship between the amount of workers and the amount of time that can be given to the task at hand. If not enough workers were present then something would not be done or would have been done hastily. The caregivers usually make due with the given amount work each day, nevertheless they reported that more could be done if they were one more. Not only does this affect the shelters and the daily care for the persons with disabilities but also in ways the accessibility to therapy and care in the rural areas. One of the tasks that needed to prioritize was whether to help persons with disability who can come to you or to go out and those who could not. The family members who acted as caregivers had to choose to either work and get an income or to take care of their ward.
“...one more person were supposed to be recruited but still it has not happened yet. Yes, if the other person come then definitely time will be managed. Specially when you have to go for field visits and mobile camps.” - Interview H
“So the difficult thing for her is also that they are engaged in agriculture back home. But now since he is here she also needs to be there to take care of him. Now she has left all the agricultural things that they earn for living. So it is quite difficult for her to manage.” - Interview B
Most of the caregivers do not have any education on caring about persons with disabilities. Not much is needed when helping with ADL since the majority of caregivers had experience with taking care of children and transferred that experience to taking care of the persons with disabilities. Also by teaching and training persons with disabilities how to do ADL, caregivers try to increase the persons with disability autonomy and independence. However in regards to other areas outside of ADL, such as what to do if somebody becomes sick, more education was desired. Generally there is a misconception on what physiotherapy is and how it works, medication is usually requested instead in hope that it will cure instead of only improve. Firstly this marks another area where knowledge is needed and secondly it leads to a lack of motivation to participate in
physiotherapy.
“They don’t really know much about physiotherapy and things like this like rehabilitation. For them medicine is very important. So when we usually go for camps, mobile camps in to rural areas as well. So when we go there we see them, they come for the camp, we give all sort of advertisement and all that. They come, they expect us to give medicine to heal them. For their pain and for their
disability. So thinking the awareness is still lacking.” - Interview H
Most, if not all, of the shelters are NGO, nonprofit and dependent on donations. The buildings that the organizations have in their disposal are the ones that were donated, so the organizations have to make due with locales that are not built for purpose. This means that the persons with disability have to share bathrooms and bedrooms sometimes regardless of gender. Another consequence is that there is little to none space to play in. There are only a few places offering physical therapy and even fewer are affordable. This leads to crowding and almost nonexistent privacy due to the rooms having to be used for multiple activities at the same time. One unfortunate consequence is that the amount of activity serves as a distraction, especially when physiotherapy is given to pediatric clients. “There is no space here for...for play for the children. So she needs more space here she said that.” - Interview C
“So, specially pediatric, uuh, we need to provide them with a very, you know, peaceful environment without any disturbance. But usually there are lot clients coming there so assessment is going on there so others are doing exercise here. So they get very much distracted because of that. So the hamper is there
comparatively.” - Interview H
Coping
The category Coping refers to the different aspects of met and unmet needs that the caregivers experience when caring for person with disabilities. It involves family attitudes, education, society's attitudes, income and hope for positive change. These points were divided into the subcategories; Long term life changes and Perceptions.
Long term life changes
Several informants addressed the need of family support when being a caregiver to a person with disabilities. It was reported that attitudes within some families are lacking in understanding and empathy for persons with disabilities. Persons with disabilities are seen as a burden to the family. In these cases families do not accept persons with disabilities in their family and the mother is blamed for the situation. This can be explained from a religious context in Nepal. Giving birth to a child with disabilities is seen as shameful and the mother is accused of having bad Karma and is being punished by religious powers for past actions. The mother is sometimes left to act as the sole caregiver and without family support. In the cases where the caregiver had strong family support, it was experienced as a highly positive component in the care of the persons with disability.
“She has a lot of troubles in her family. She lives alone. And it is cuz of the child that everyone doesn't want to accept her back in her family. So she has to take care of a lot of things by herself and that's very, very challenging for her, to be disconnected from the family and taking care of everything by herself.” - Interview E
In regards of education, the informants expressed a wish and a need for persons with disabilities to be educated and get professional help with speech therapy, growth and development. This would improve the living situation. The schools systematically refuse to admit persons with disabilities. Reasons given are that the schools are not properly adjusted for these persons specific needs and that the other children in the class would be disturbed by their presence. In the cases where schools do accept persons with disabilities, the persons with both physical and mental disabilities are put in the same class together. Due to varying needs and abilities of the students the teachers have difficulty to adjust their class
towards their individual students which leads to the quality of education suffering. “If it was not like that, if it would be open for everyone, to let their child go into school, normal school or separate school for just people with disabilities it would be very good for her.” - Interview F
Several informants addressed society's negative attitudes towards persons with disabilities. Living as a person with disabilities in Nepal was described as difficult and that they are blamed for their situation and are unable to function in society. Persons with disabilities in Nepal are often seen as a burden to society and are therefore not admitted to schools and have have difficulties finding employment. There was a wish amongst the informants that society’s attitudes needs to improve and become more friendly towards persons with disabilities.
“The most challenging thing for persons with disabilities would be, on a macro-level, the acceptance from society. Society is not very open to accept people with disabilities.” - Interview A
In the cases where a relative acted as an unpaid caregiver, a lack of income and a desire for employment was expressed. Due to their relatives disabilities and need
of care, the informants had either reduced their work hours or foregone a career and abandoned their livelihood to become caregivers on full time without payment. In some cases the caregiver also had to step in and take over their relatives duties on the family farm and taking care of the cattle. It was expressed that this left little or no time for taking on a paying job outside the home. This leaves the caregivers in an economically vulnerable situation.
“If she could find a proper place or daycare where she could take her disabled child to care the she would be like free. Then she could go for some kind of work so she could earn.” - Interview E
Perceptions
The feeling of hope for improvement in the conditions of the persons disabilities arose. Many of the caregivers reported seeing the possibility of positive change as the most satisfactory part of their daily work. Hope for future improvement in mobility was specified. While the majority of the informants reported hope for positive change, feelings of hopelessness for improvement due to the lack of family support and the negative attitudes towards persons with disabilities was reported.
“She thinks thats she has a hope that one day he will be able to stand on his feet. So the hope for her son and the sense of satisfaction for the rest of the kids are positive things that she finds in her work.” - Interview C
DISCUSSION
In the following section pros and cons about the method will be discussed. Thereafter the results will be discussed.
Methods discussion
A qualitative approach was chosen to be able to reflect the experiences of the caregivers. Had more studies been conducted in this particular subject, an
quantitative study could have been chosen instead describing the incidence of the experiences. However since this study was designed to explore and describe rather than enumerate the choice was made to do the study with a qualitative approach. One disadvantage concerning the ethnographic approach is that if the cultural differences between the investigators and the informants are not acknowledged then the conclusions in the study might not reflect reality. This disadvantage can be avoided if the investigators are made aware of the risks. Therefore the
principles of emic and etic had to be considered as described in Polit and Beck (2014).
Study design
semi-topic of interest. When appropriate, probing questions were asked during
interviews to gain even more depth to the answers. The semi-structured interview allows to probe deeper than a survey or questionnaire and is more focused than a unstructured interview (Green & Thorogood 2014).
In regards of the chosen data collection method the depth and amount of data collected has to be considered. Firstly, for a study with higher quality the investigators could have chosen to do in-depth interviews instead for semistructured interviews with the consequence of having time for fewer
informants.Secondly, for a study with greater validity a questionnaire could have been composed and more informants approached. The chosen method was a compromise between validity and reliability and the time given to carry out the study (Polit & Beck 2014).
Participants
The variation in gender amongst the informants was not optimal since only female caregivers were accessible for interview. A representation of male informants would have been prefered to gain a broader spectrum in background and experience. But since being a caregiver in Nepal is a predominantly female profession, the issue of non-diversity in gender was expected by the investigators. Sampling within a qualitative study is guided by ethics and since the opportunistic snowball method was used, this left little room for heterogeneous sampling
(Holloway & Wheeler 2010). Including informants with different backgrounds such as religion, ethnic group, belonging to a high or low caste, economic status or living area could have given the study higher credibility and demographic representativity (Polit & Beck 2014). But it was the intention of the investigators not to include such personal questions due to ethical considerations of
confidentiality. Setting
At some of the locations there was a possible risk that unauthorized persons could listen in on the interviews. Although measures were taken to give the informant a sense of privacy during the interview, minor interruptions occurred. These
happened on Location B when other staff needed to talk to the person being interviewed. This could have been solved by choosing a location outside of the caregivers workplace. Other external disturbances occurred on Location C, where unauthorized people were passing close by. The interruptions did not have any perceived influence on the interviews or the given answers but there was a possible risk of breach in confidentiality and other people listening in.
That some of the interviews were conducted in the informants workplace could have had a negative influence on the given answers due to the hierarchy or bias towards their employer. The risk of this could have been minimized of the interviews were conducted at a more neutral place of the informants choosing. Although informed consent was given before initiating the interviews there was a possible risk that the informants were worried that their given answers could have
a negative effect on their position at their workplace. If this was the case, some of the answers might not have been truthful.
Data management and analysis
By using a qualitative content analysis a deeper understanding of the underlying needs could be achieved (Green & Thorogood 2014). A descriptive
phenomenological analysis method could have been used but a disadvantages with this method is that the analysis of data may be difficult and is open to multiple interpretations (Polit & Beck 2014).
Translator
There was a plausible risk that the translator only gave short summaries of what was said in the interviews. This might have led to lack of depth in the transcribed material. The problem could have been addressed by allowing a second translator listen to the taped interviews. This would increase the credibility of a correct translation. Although, as Ingvarsdotter et al (2010) describes, a correct translation does not need to be synonymous with a verbatim translation. If the translator and the informant share the same cultural background, the translation might instead capture an conceptual equivalence through the understanding between these two persons. This might have led to the translator looking past some of the culture in the answers given.
The third person voice was obvious in the transcribed material due to little experience to translate. The translations and the transcribed material is also marked by “triple subjectivity” when the interviews became an interaction between three parties instead of two - the informant, the investigators and the translator. These factors might have led to a lack in depth and truthfulness in both the questions asked by the investigators and the translated answers. Given more economic resources, a professional translator would have been prefered to. Higher data quality would have been achieved if the interviews had been conducted directly between the informants and the investigators and without a translator.
Saturation
Eight informants were interviewed during a total of 164 minutes. Every interview lasted for approximately 20 minutes. As stated by Polit & Beck (2014), saturation can be achieved with a relatively small sample of informants if they are given time to reflect on their answers. The amount of time given for every interview was perceived as sufficient by the investigators to get the needed material.
But given more time to find more informants, data saturation could have been met with more certainty. Since the research question was quite broad and and the questions asked were open-ended, more informants would have been preferred to achieve saturation (Polit & Beck 2014). After eight interviews had been
conducted, the investigators noticed that no new topics arose during the last interviews and due to time constraints and difficulty of getting more informants,
Since the investigators were inexperienced in performing interviews and due to the language barrier, it was hard to judge if true saturation had been met. Ethics considerations
The investigators were aware that there could be some cultural differences and could be perceived as white privileged male students from a Western country. This in itself can be construed as a form of neocolonialism as we undertook our study in a developing country. There could be a level of power difference as to both gender and ethnicity between us and the informants. To overcome this plausible power imbalance we aimed to be aware of these differences between male-female, western-eastern, superior-inferior (Holmgren 2014) and as we strive to show the utmost respect for the informant and their living conditions.
When conducting research in a foreign country, emic and etic must be considered. If the cultural differences between the investigators and the informants are not acknowledged then the conclusions in the study might not reflect reality.
Therefore the principles of emic and etic must be considered as described in Polit and Beck (2014). The etic perspective is when an outsider is looking in on a culture or group. And carrying the etic perspective, it makes it difficult to truly understand and capture the true picture of a certain culture. There is a risk that the investigators misinterpret the informants answers and make conclusions because of a lack of cultural understanding.
An emic view of culture is the view from the insider’s perspective. The emic perspective is more useful when trying to understand a culture and the experiences within a certain group. With this pre-understanding the investigators used the strategy called participant observations (Polit & Beck 2014) to acclimatize, integrate, observe and understand the local culture during 1-2 weeks times before initiating the interviews. This was to get a more holistic approach in the meetings with the informants and to minimize the risk of misinterpretation and faulty conclusions due to an ‘outsider's perspective’.
Results discussion
The fact that the community-based rehabilitation guidelines of WHO (2010) in some parts are similar to our findings serve to strengthen our study. The WHO components are health, education, livelihood, social and empowerment. The WHO guidelines focus on the persons with disabilities, our study however focuses on the caregivers.
Experiences of need from caregivers about caring for people with disabilities
The findings suggest that caregivers experience a need for equality and equal rights for persons with disabilities to be able to cope with long term life changes. The current inequality that the caregivers experienced when caring for persons with disabilities is difficult to cope with. The informants often talked about how life had dramatically changed since the work with persons with disabilities began. Societies and families attitudes had dramatically changed and brought on negative
consequences. This coincides with the UN Nepal Information Platform (2017) description of how persons with disabilities are perceived in Nepal. They are described as a burden to the family and to society.
The caregivers expressed a need for society's attitudes towards persons with disabilities to improve and become more positive. Not only does society's attitude hamper the person with disabilities, but it also hampers the caregivers in their work. The finding is strengthened by the study done by Strong and Brown (2011) which attempted to influence nepali children towards a more positive view on disabled persons. By showing educational television to children shows the society's attitude toward persons with disabilities could be affected. Strong and Brown (2011) conducted a quasi-experimental study aimed at changing beliefs and behavior towards persons with disabilities. Changing the attitude of a whole society is not easily done and not quickly. By giving the children a character that they could identify with and then let him befriend persons with disabilities the children showed a more positive stance towards persons with disabilities (Strong & Brown 2011). The study required a television which can not be assumed that everybody has access to. However the core of identification and humanization of persons with disabilities could perhaps be used outside of the televised format and could potentially be used to affect a change in the general population.
The loss of family support and being ostracized is not only distressful for the caregiver and the person with disability, but also leaves the sole caregiver with very little access to help in the actual work of caregiving.
The need of support from both family and society becomes clear when the
investigators were seeing other issues arise from these points. These long term life changes leads to lack of manpower/time due to being the sole caregiver. They also lead to a lack of income for the caregiver, since they are unable to join the
workforce.
A solution to the lack of manpower/time and the lack of knowledge for caring about persons with disabilities was suggested by Mannan et al (2013). By bringing together specialist in human resources that would focus on how to
amongst other things improve upon training, learning and motivation. By teaching this new cadre of healthcare personnel with a specialization on CBR a higher quality of care could be achieved. Correlating with our findings this would suggest that there is a lack of both knowledge and manpower however there appears to be a suggested way on how that could be remedied.
When the investigators noticed a systematic responsivity that lacked negative nature, the translator explained this as a possible symptom of the cultural thinking in Nepal in that everything is predetermined and that there is nothing to gain by focusing on negative aspects of their workday. Many of the caregivers also reported seeing the possibility of positive change as the most satisfactory part of their work. The investigators interprets these perceptions and feelings as a need and tool in the daily work of the caregivers. This is supported by Aaron
These theories tries to explain why some people fall ill and why some do not. This can be applied to why some people can cope with their work and why some do not. The higher the caregiver is on the SOC-scale, the more likely he or she can
cope with the demands of their work. Comprehensibility, manageability, and meaningfulness are the components that needs to be fulfilled to have a high SOC. If the caregiver experiences the challenges of their work as worthy of commitment and if they can see that they are contributing to a overall goal, it might increase meaningfulness. This aspect is the strongest component of the three (idib). The perception of needs for care of persons with disabilities
The challenges in daily life encompass both societal and the more pragmatic problems. As Saigal and Narayan (2014) have pointed out there is a lack of accessibility to basic amenities for persons with disabilities. And as WHO (2002) points out the lack of respect between persons without disabilities and those with, lack of accessibility to therapy and lack of assistive devices. The need for help varies greatly depending on the disability, however those who need more help in activities in daily life puts the relative caregivers in a precarious situation. The choice that they have to make is to either work and gain income or to take care of their relative.
One of the more drastic long term life changes that can happen is that the family disowns the mother and the child with a disability. Due to the societal structure that prioritizes men in both education and work, this can lead to destitution. A lack of resources, knowledge about disabilities, funds and legislation leads to low education (Eleweke & Rodda 2002) and in turn to low income. Low education and low income in turn risks that the necessary treatments are either unknown or too expensive. Gudlavalleti et al (2014) highlights the difficulties persons with disabilities have in regards to employment and health care and Ramachandra et al (2017) highlights the workplace discrimination. This in combination with the study of prevalence as done by Ramachandra et al (2016) suggest that there is a large amount of persons with disabilities that have a low quality of life.
There is a lack of persons with disabilities in leadership positions in organizations according to WHO (2002), this can unfortunately lead to their interests being either misrepresented or ignored. In our study there was a call for the possibility for the persons with disability being a part of the society, however there was not any mention of leadership-positions. This might just be part of a process of integrating persons with disabilities in the society. First the right to be a part of and then the right to shape. The health care is centralized in Kathmandu (WHO 2002) which means that the persons with disabilities have long way to travel to get their treatment. In our study it was suggested of decentralizing the care and by that increasing the accessibility to treatment.
CONCLUSION
The caregivers reported that they experienced needs on both micro and macro level. Accessibility to education, rehabilitation, employment and public transport is needed. Increased access to assistive devices is also requested. A societal change with improved knowledge about disabilities, increased acceptance and structures to avoid a total loss of income.
FURTHER RESEARCH
Given the establishment of possible needs of caregivers of persons with disabilities in Nepal the next step could be quantify the needs. By doing a questionnaire aimed at the shelters that harbour persons with disabilities more precise knowledge can be attained on which needs is the greatest. By obtaining the knowledge of which needs is greatest gives a goal to strive for to change. Another area of future research could be isolating and investigating each
identified category to deepen the knowledge and fill out possible gaps that were missed. Depending on the category different methods would have to be used. A third area of future research is if the caregivers perceived nursing needs and the persons with disabilities experienced needs overlap or if there are any
incongruencies. By interviewing persons with disabilities and identifying their experienced needs and comparing to the caregivers perceived needs a more effective and harmonic care can be implemented. This could hopefully lead to greater integrity and autonomy.
Our study was based in Kathmandu which is the largest city in Nepal and carries different opportunities and obstacles than in the countryside. There would be merit to repeating this study with a focus on more rural areas.
Since the needs of caregivers in Nepal is mostly unexplored, further studies are required to be able to improve the working conditions of the caregivers. Future studies could investigate and probe deeper into the organizational challenges and how to improve society's attitudes towards persons with disabilities.
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APPENDIX A - Topic guide
● Tell us about a typical day in your work.● Tell us about any positive experiences during your workday. ● Tell us about any negative experiences during your workday.
● Do you experience any unmet needs/resources during your workday? ● What could improve your work with persons with disabilities?
● What is most challenging when caring for persons with disabilities? ● How can these challenges be overcome?
● Do you have any additional comments?
