INTRODUCTION:

All children will likely have many different health problems during infancy and childhood, but for most children these problems are mild, they come and go, and they do not interfere with their daily life and development. For some children, however, chronic health conditions affect everyday life throughout childhood. The child is chief guest of the family, the health of the child affects entire family, school, nation and world. The children are prone to get Noncommunicable diseases (NCDs),this non communicable diseases also known as chronic diseases, are not passed from person to person. They are of long duration and generally slow progression⁴ (Janet,2010).

Noncommunicable diseases (NCDs) kill more than 36 million people each year. Nearly 80% of NCD deaths - 29 million - occur in low- and middle-income countries. Asthma is a major noncommunicable disease; characterized by recurrent attacks of breathlessness and wheezing, which vary in severity and frequency from person to person. Symptoms may occur several times in a day or week in affected individuals, and for some people become worse during physical activity or at night¹. During an asthma attack, the lining of the bronchial tubes swell, causing the airways to narrow and reducing the flow of air into and out of the lungs. Recurrent asthma symptoms frequently cause sleeplessness, daytime fatigue, reduced activity levels and school and work absenteeism. Asthma has a relatively low fatality rate compared to other chronic diseases. WHO estimates that 235 million people currently suffer from asthma. Asthma is the most common noncommunicable disease among children³. WHO Fact sheet 2012 says Asthma is a public health problem not just for high-income countries, it occurs in all countries regardless of the level of development. Most asthma-related deaths occur in low- and lower-middle income countries. Asthma is under-diagnosed and under-treated. It creates substantial burden to individuals and families and often restricts individuals’ activities for a lifetime. Although asthma cannot be cured, appropriate management can control the disease and enable people to enjoy a good quality of life. Short-term medications are used to relieve symptoms. Medications such as long-term inhaled steroids are needed to control the progression of severe asthma. People with persistent symptoms must take long-term medication daily to control the underlying inflammation and prevent symptoms and exacerbations. Inadequate access to medicines is one of the important reasons for the poor control of asthma in many settings. Medication is not the only way to control asthma. It is also important to avoid asthma triggers - stimuli that irritate and inflame the airways. With medical support, each asthma patient must learn what triggers he or she should avoid. Although asthma does not kill on the scale of chronic obstructive pulmonary disease (COPD) or other chronic diseases, failure to use appropriate medications or to adhere to treatment can lead to death³.

WHO recognizes that asthma is of major public health importance. The Organization plays a role in coordinating international efforts against the disease. The aim of its strategy is to support Member States in their efforts to reduce the disability and premature death related to asthma. Surveillance to map the magnitude of asthma, analyze its determinants and monitor trends, with emphasis on poor and disadvantaged populations. Primary prevention to reduce the level of exposure to common risk factors, particularly tobacco smoke, frequent lower respiratory infections during childhood, and air pollution (indoor, outdoor, and occupational exposure); and improving access to cost-effective interventions including medicines, upgrading standards and accessibility of care at different levels of the health care system⁷.

Epilepsy is a chronic noncommunicable disorder of the brain that affects people of all ages. Around 50 million people worldwide have epilepsy. Nearly 80% of the people with epilepsy are found in developing regions. Epilepsy responds to treatment about 70% of the time, yet about three fourths of affected people in developing countries do not get the treatment they need. People with epilepsy and their families can suffer from stigma and discrimination in many parts of the world. Epilepsy is a chronic disorder of the brain that affects people in every country of the world. It is characterized by recurrent seizures². Seizures are brief episodes of involuntary shaking which may involve a part of the body (partial) or the entire body (generalized) and sometimes accompanied by loss of consciousness and control of bowel or bladder function. The episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges. Seizures can vary from the briefest lapses of attention or muscle jerks, to severe and prolonged convulsions. Seizures can also vary in frequency, from less than one per year to several per day¹²(Payot,2010).

One seizure does not signal epilepsy (up to 10% of people worldwide have one seizure during their lifetimes). Epilepsy is defined by two or more unprovoked seizures. Epilepsy is one of the world's oldest recognized conditions. Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries. Some of the stigma continues today in many countries and can impact the quality of life for people especially children with the disorder and their families. Epilepsy accounts for 0.5% of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in states of less than full health. Epilepsy has significant economic implications in terms of health-care needs, premature death and lost work productivity. An Indian study calculated that the total cost per epilepsy case was 344 per year (or 88% of the average income per capita). The total cost for an estimated five million cases in India was equivalent to 0.5% of gross national product¹ (Ganesh S.Kumar et.al.2014).

Although the social effects vary from country to country, the discrimination and social stigma that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves. People with epilepsy can be targets of prejudice. The stigma of the disorder can discourage people from seeking treatment for symptoms and becoming identified with the disorder. People with epilepsy experience reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, and barriers to enter particular occupations, among other limitations. In many countries legislation reflects centuries of misunderstanding about epilepsy. For example: In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages. In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970. In the United States, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centers and other public buildings. Legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to health care services and raise quality of life¹.

WHO (2012) and its partners recognize that epilepsy is a major public health concern. WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) are carrying out a global campaign, ‘Out of the Shadows’ to provide better information and raise awareness about epilepsy, and strengthen public and private efforts to improve care and reduce the disorder's impact. Projects to reduce the treatment gap and morbidity of people with epilepsy, train and educate health professionals, dispel stigma, identify potential for prevention and develop models integrating epilepsy control into local health systems are ongoing in many countries³. In a project carried out in China, the treatment gap was reduced by 13% and there was improved access to care for people with epilepsy. Epilepsy is one of the chronic illnesses in children, which is still considered a social taboo in Indian subcontinent. There are epileptic and non-epileptic factors which could adversely affect health related quality of life (QOL) among children with epilepsy. The factors which could adversely affect QOL include age at onset, type of seizure, duration of disease and number of antiepileptic drugs¹ (AEDs) (Vandana Arya,2014).

Every country in the world is affected by the rising tide of chronic disease. According to WHO data on health in the year 2008 stated that, the Diabetes, cardiovascular diseases, respiratory disease and cancer are the world’s biggest killers, causing an estimated 35 million deaths each year 80% of this deaths occur in low and middle income countries. These diseases are preventable. When they do occur, effective care and management from the earliest stages can enable those affected to live effectively and productive life ⁵(Janet, 2011). The potential for nurses to contribute to improvement in the health of populations across the world through attention to chronic disease prevention and care is very higher⁹ (ICN, 2010).

OBJECTIVES:

To explore the needs and problems of High school children with asthma and with epilepsy

METERIALS AND METHODS:

The study was carried out in the Selected Government high schools and the nearby the villages of the study children in the revenue district of Coimbatore. Qualitative methods of focus group discussions in-depth interviews carried out with study children and with their parents after obtaining consent. For taking photo and video recording of those processes obtained consent and documented.

Research approach:

Qualitative research approach was used in this study.

Study Design:

Cross sectional study design using qualitative techniques of FGDs (Focus Group Discussion) and In-Depth interviews was adapted for this study.

Study Site:

Selected Government high Schools and nearby villages of those schools of Coimbatore, Tamil Nadu, India was the study site.

Study Sample:

Consenting study children, father and mother of those children were includes in the study. The class teachers and peer group also were included. A total of 15 FGDs with parents and 17 with children were carried out. 28 In Depth interview and 48 In-Depth interviews with peer group were conducted. The process was stopped as reached information redundancy with this number. Study samples were,

Study Children:

The children comprised of boys and girls studying in the 8^th and 9^th standard with specific chronic illness of Asthma and Epilepsy in the age group of 13 to 15 years attending Government high schools in Coimbatore.

Parents:

The parents of the above mentioned children inclusive of both fathers and mothers were also selected to participate in the study.

Teachers:

The class teachers of the children with specific chronic illness who were teaching in the selected Government high schools at Coimbatore were also included for the study.

Peer group:

The peer group consisted of the class mates of the study children.

Sampling Technique:

Non probability Purposive sampling method was used in the Study.

Instrument:

A FGD guide for parents and children and In-Depth interview (ID) guide for class teacher and peer group were used. The FGD guide and in depth interview guide included the following broad elements:

· Perspective on chronic illness

· First aid management in school

· Safety and security during first aid management

· Peer group support

Procedure:

The facilitator made familiarity of the topic. The FGDs conducted in the Tamil language. Identified the cultural sensitivity, including not acting as a judge, a teacher, does not looking down on respondents, not agreeing or disagreeing with what was said, and not put words in the participants’ mouths to stop discussion. Identified genuine interest in Children with illness and the parents, sensitivity to participant children, father and mother of the children, followed politeness, empathy and respected for participants. Participants were contacted in advance to two weeks before the session. Participants were reminded about the focus group discussion one day before the session. The optimal number of participants was selected. Focus group discussions conducted in a school for the children and in the natural place inside the village for parents. A circular seating arrangement was done to allow them to freely see and hear each other. Note taker captured the discussion in writing and notes the participants’ nonverbal expressions. Some of the FGDs were video recorded. FGD conducted for children and parents with the aim of obtaining the information as complete as possible about the participants’ perceived past, current and future information on illness and its management. Once the children and their parents had expressed interest in taking part in the study, school visits and home visit was done to collect information from the study children and their parents. The linking non verbal data’s and observation gathered initial stage. The Qualitative Data were collected by FGD and in depth interview methods. The parents from nearby schools and willing to participate were chosen. The study children, class teachers and peer group were selected as they were willing to participate. Before conducting the FGD and In-Depth interviews verbal consent was obtained.

Children:

FGD were carried out with children. For the FGDs homogeneous sampling techniques were used. This ensured that the group was homogeneous in terms of their socio demographic characteristics thereby allowing for good interactions. Each FGDs on an average comprised of 8-10 children suffering from either asthma or epilepsy. A total of the 15 FGDs were conducted with such children in different school settings. Parents FGDs were also carried out with those parents of children (above) selected for FGDs. Each FGDs had about 8-12 participants which was a combined group including both fathers and mothers. Seventeen such FGDs were conducted with parents.

Teachers:

In Depth Interview were conducted with the class teacher of the selected classes, namely 8^th and 9^th standards. This was based on the premise that these class teachers would be more familiar with the children in their respective classes and would be in a position to provide information on their performance, progress, problems etc. A total of 25 class teachers from the different schools included for the study. Peer group- In-Depth Interviews were also conducted with a few classmates of children with chronic Asthma and Epilepsy. These children were considered the peer group and were selected based on the promise that they would be able to provide added insights into the nature of their relationship, problems and difficulties faced by them etc. Total 50 ID was conducted with such children from the selected schools.

In-depth interviewing, also known as unstructured interviewing, is a type of interview which researchers use to elicit information in order to achieve a holistic understanding of the interviewee’s point of view or situation, it can also be used to explore interesting areas for further investigation. This type of interview involves asking informants open-ended questions, and probing wherever necessary to obtain data deemed useful by the researcher. As in-depth interviewing often involves qualitative data, it is also called qualitative interviewing. In this study informal conversational interview approach is used to keep the interview within the time limit of class teacher and peer group without disturbing their academic education and routine work. It is the informal conversational interview method. This type of interview resembles a chat, during which the informants may sometimes forget that they are being interviewed. Most of the questions asked will flow from the immediate context. Informal conversational interviews are useful for exploring interesting topic/s for investigation and are typical of ‘ongoing’ participant observation fieldwork. Before the focus group discussion begins, the facilitator should obtained the background information of participants such as their age, education, economic status ect. During initial meetings.

1. After a brief introduction, the purpose and scope of the discussion were explained.

2. Participants were asked to give their names and short background information about themselves.

3. The discussion is structured around the key themes using the probe questions prepared in advance.

4. During the discussion, all participants were given the opportunity to participate.

5. Used a variety of moderating tactics to facilitate the group. Among these tactics that the moderator used include:

* Stimulated the participants to talk to each other, not necessarily to the moderator.

* Encouraged shy participants to speak.

* Discouraged dominant participants through verbal and nonverbal cues.

* Prayed close attention to what is said in order to encourage that behavior in other participants.

The FGD is an opportunity for the research team to listen and learn, and not to lecture or provide team members’ interpretation of the local biophysical and social system. The team members agreed on various task assigned including facilitator and note taker. Familiarized myself with local terminologies/names to avoid misunderstanding of what the children and parents say. Keep an open mind and listen more. Avoided questions that yield Yes or No answers. Avoided leading questions. Been sensitive to local norms and customs¹¹. Conveyed thank to the participants after the conduct of the FGD. The first two questions were general questions which were used as ice breakers to stimulate discussion and put participants at ease encouraging them to interact in a normal manner with the facilitator.

The FGD was conducted for class teachers of the sick children at different government high schools at Coimbatore. From more than 25 class teachers were participated as per their convenient without disturbing regular academic activity. They were arranged individually, the in depth interview were ranged from 30 to 45 minutes. The peer group In - depth Interview were conducted in the selected Government high schools for the classmates of the children with specific chronic illness. From more than 100 classmates were participated without disturbing their academic education. They were arranged individually, the In-depth interview were ranged from 30 to 45 minutes. In-depth interviews are usually conducted face-to-face and involve one interviewer and one participant. Phone conversations and interviews with more than one participant also qualify as In-Depth interviews. In this study this techniques also were used. In-Depth interviews is appropriate for eliciting individual experiences, opinions, feelings and addressing sensitive topics, i.e., the connections and relationships a person sees between particular events, phenomena, and beliefs. Selected class teachers based on their interest for In-Depth interviews.

1. Play ground corners and free class rooms were arranged for the interview with recording equipments. But In this study the class teachers were requested to not record the conversation electronically. Hence it was not recorded electronically but manually recorded.

2. Followed the rules and regulations that arrived on time, prepared interview guide, note book and psychology prepared for the interview.

3. Obtained verbal informed consent from each participant before the interview.

4. Addressed all questions or topics listed in the interview guide.

5. Taken backup notes Expanded notes as soon as possible after each interview, preferably within 24 hours.

1. Immediate debriefing after each focus group with the facilitator as well as note taker and debriefing notes were made. Debriefing notes included comments about the focus group process and the significance of data

2. Listened to the video recorder and verbatim transcribed the content of the voice recorder.

3. Checked the content of the video with the observer noting and considering any non-verbal behavior. The benefit of transcription and checking the contents with the observer was picking up the following:

a. Parts of words and

b. Non-verbal communication, gestures and behavior etc.

All these procedure were carried out in privacy within the school campus and nearby villages. Those process conducted in Tamil were transcribed verbatim. The all process were manually written and familiarized with the contents for analysis.

DATA ANALYSIS:

In this study FGD with asthmatic and epileptic children and In - Depth interview with class teachers and peer group was done. Focus group involves organized discussion with selected group of individuals to gain information about their views and experiences of a topic and is particularly suited for obtaining several perspectives about the same topic. Focus group are widely used as a data collection techniques of qualitative research (Kothari,2010). The purpose of using focus group is to obtain information of a qualitative nature from a predetermined and limited number of people. Using focus group in qualitative research concentrates on words and observations to express reality and attempts to describe people in natural situations. The group interview is essentially a qualitative data gathering techniques¹⁰. It can be used at any point in a research programme and one of the common uses of it is to obtain general back ground information about a topic of interest.

There were five key stages used .Those are familiarization, identifying a thematic framework, indexing, charting, mapping and interpretation.

1. Familiarization:

The process of data analysis was begin during the data collection, by skill full facilitating the discussion and generating rich data from the interview, complementing them with the observational notes. This stage was followed by familiarization with the data, which was achieved by listening the video tapes, reading the transcripts several times, reading the observational notes taken during interview, and summary notes written immediately after the interview. The aim was to immerse in the details and get a sense of the interview as a whole before breaking it into parts. During this process the major themes was emerged.

2. Thematic frame work:

The next stage involved identifying a thematic framework, by writing memos in the margin of the text in the form of short phrases, ideas or concepts raised from the texts and beginning to develop categories. At this stage descriptive statements were formed and an analysis was carried out on the data.

3. Indexing:

It comprises sifting the data, highlighting and sorting out quotes and making comparisons. The manually written transcript was read by the researcher many times to identify the core content of the subject as well as to find out major themes.

4. Charting:

It involves lifting the quotes from their original context and re-arranging them under the newly-developed appropriate thematic content. One of the most important aspects of this task is data reduction, which is achieved by comparing and contrasting data and cutting and pasting similar quotes together.

5. Mapping and Interpreting:

The data now ready for the final stage of analysis that is mapping and interpretation

RESULTS AND DISCUSSION:

FGD with Children:

Most of the students were girls (95%) and boys were (5% ) in the age group of 13 to15 years .The qualitative analysis led to the emergence of the four themes which are discussed from the perspective of each of the study sample, the themes were “perception on children with chronic illness”, “first aid management in the school”, “safety and security during first aid management” and “peer group support”.

FGD with Parents:

Most of the parents who participated were fathers (95%) and mothers were (5% ) with age between 35 years to 45 years. The qualitative analysis led to the emergence of the four themes from the focus group data. From the parents’ point of view, "Perception on children with specific chronic illness", “first aid management in the school", "Safety and security during first aid management” and “peer group support" were considered as important themes in life skill education.

In depth interview with class teacher:

50% of the class teachers are ready to give care for the children but 50% of the teachers verbalized that they have no time to give special care to the children as well as there are some risk involved in providing care. There is no special system of education for the children with illness. There are no facilities in school for first aid management. No regular health check up and health care.

In depth interview with peer group:

Majority of the children are ready to give first aid management for their friends. But fear of parents and teachers and lack of knowledge itself is not possible to provide care. Among students there are social stigmas about chronic illness. When caring for a child with a chronic illness, parents, physicians, and other health personnel often focus their attention on treatment of the illness. The Child’s attitude, coping with illness in, physical well being and mental health are often secondary to management of the illness. Hence the all health professional especially Nurse as an one of incredibly important health team member to provide care for chronically ill children in school for their healthy future.

NURSING IMPLICATIONS:

Nurses need to educate the children with chronic illnesses on life skills to manage their illness, maintain their health, develop academically and be employed productivity in future. In nursing education give important of learning non communicable diseases and its prevention and protection especially in the school children. The nurse administrator may organize school health programmes with co-operation and written consent/assent of school management, school children, their parents, teachers and other health personals.

CONCLUSION:

Children spend most of their life time at schools and colleges. Most schools don’t have permanent full time nurses, thus placing the responsibility for daily asthma and epilepsy management of students with asthma and epilepsy by non-medical staff and teachers. The management of children with asthma and epilepsy in school may be function effectively with the support of peer group, classroom teachers, physical education teachers, school health nurse and parents help the students participate fully and safely in all academic, sports and cultural activities in schools. The high school Children are more capable of understanding their illness and its treatment, but they should not be expected to react as adults do. They may feel left out when they miss school or activities with their peers. Parents may feel the need to protect their children by restricting them from activities with other children. This is a natural reaction, but it can interfere with the child’s independence and sense of mastery. To the extent allowed by the child’s doctors, parents should help the child to participate in school or other activities with help of efficient health team at schools with full hearted support and encouragement from the Hon’ble Government.

ACKNOWLEDGEMENT:

Authors would like to express their gratitude to the Management, Dean Shri. Prof (Mrs.) Seethalakshmi M.N., (PhD Co-guide, The Tamil Nadu Dr. M.G.R. Medical University, Chennai, Tamil Nadu, India), Principal, Faculties, students of College of Nursing ,Sri Rama Krishna Institute of Para Medical Sciences, Coimbatore, Tamil Nadu and Shri. Dr. Saradha Suresh M.D., Ph.D., FRCS., (Glas), (HOD & Professor of Pediatrics (Rtd.) in Govt. Madras Medical College, Director and Superintendent (Rtd.) of Institute of Child health and Hospital for Children, Egmoor, Chennai, PhD Guide The Tamil Nadu Dr. M.G.R. Medical University, Chennai, Rural Health Mission, Technical advisor of Tamil Nadu, India), All my study children, their parents, teachers, peer groups and the Chief Dist. Educational officer and staffs of Coimbatore, Tamil Nadu, India.

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Received on 03.10.2014 Modified on 08.10.2014

Int. J. Adv. Nur. Management 3(1):Jan. - Mar., 2015; Page 01-06

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