Family Caregiver Phenomenon that Treats Persons with Disabilities Since Birth

Background: Disability is a disturbance or limitation of physical activity involving participation restrictions. The disturbance is a problem in the body’s function and its structure. Restrictions on physical activity are the difficulties faced in performing tasks or actions, while limiting participation is a problem experienced by individuals in engagement in life situations. Objective: This study aimed to provide an in-depth description of the feelings, explain the obstacles or difficulties experienced and explain the caregiver’s expectations of mothers/fathers/brothers in caring for children with disabilities from birth. Method: This study was a qualitative research with a descriptive phenomenology approach. Data collection was conducted through in-depth interviews of family caregivers of persons with disabilities since birth with inclusion and exclusion criteria. The data were analyzed by Colaizzi’s method and data triangulation was performed by a coder to maintain data validation. The sample selection was done by purposive sampling. The sample of the study amounted to 17 persons who were family caregivers. Result: The results showed that caregiver phenomenon in caring for persons with disabilities since birth is a burden. Psychological burdens include sadness, disappointment, anger, guilt, depression and ultimately acceptance. Additionally, there are financial burdens, time constraints and social stigma. Conclusions: Caregivers for persons with disabilities since birth experience several burdens, including psychological, physical, financial and social burdens. There is the psychological burden of anger, disappointment, fear, worry, and guilt which many finally can accept. The physical burden of fatigue, lack of sleep, lack of appetite may result in diseases such as gastritis, hypertension, along with muscle and joint disorders. Financial burdens are related to medical expenses, transportation, and daily necessities. The social burden involves stigma, negative labeling and lack of time with other families and communities. It is hoped all caregivers with family and community support can accept and overcome these challenges.


INTRODUCTION
Disability is a disturbance or limitation of physical activity involving participation restrictions. The disturbance is a problem in the function of the body and its structure. Restrictions on physical activity are the difficulties faced by individuals in performing tasks or actions while limiting participation is a problem experienced by individuals in engagement in life situations 1 . The number of persons with disabilities is about 15% of the world's population and 80% are in developing countries 2 . According to the National Social Economic Survey/Survei Sosial Ekonomi Nasional (Susenas) results in 2012, the number of disabled persons in Indonesia was 6,008,661 persons (2.45%) 3 . The prevalence of persons with disabilities in Purworejo Regency was 0.75% 4 . Caregivers are someone in the family, whether parents, foster parents, or other family members who help meet the needs of dependent family members 5,6 . The family is the primary caregiver for persons with disabilities. Families for persons with disabilities are the first and the nearest environment to be a major source of support for persons with disabilities 6 . Caregivers serve as emotional support, while caring for patients (bathing, dressing, preparing meals, and administering medications), as well as managing finances and making care decisions 7 .
Problems experienced by family caregivers during caring for persons with disabilities can lead to a variety of phenomena for caregivers and communities. These phenomena can be psychological reactions such as shock, anger, embarrassment, disappointment, stress, and depression along with physical, mental, and financial challenges related to caregiver expectations for children with disabilities from birth, to go beyond the common stigma in the community and ultimately the hope for them to be treated humanely and received with sincerity and compassion 8,9 .

Patient's Treatment Plan by Family Physician
During the first-contact (primary care management) through anamnesis, doctors often obtain information that a caregiver family has a psychological burden of stress, embarrassment, disappointment, worry, inferiority, and confusion. The family physician can assist to provide correct and appropriate information, make two-way communication between doctors and patients to overcome the psychological problems that arise. Additionally, there are physical burdens in the form of fatigue, sleep deprivation, lack of appetite resulting in gastritis, hypertension, and arthritis. Therefore, doctors can provide pharmacological therapy as needed and nonpharmacological therapy for example by the method of Seft (spiritual emotional freedom technique) in order to reduce the physical complaints and common anxieties that arise during the care of persons with disabilities 10 .
Based on the above phenomenon, the researchers aimed to determine the nature of the caregiver family phenomenon that treats persons with disabilities since birth. The main purposes of this study were: (1) To describe these conditions in general regarding caring for a child with a disability from birth; (2) To explain the obstacles or difficulties experienced by a mother/father/brother in caring for persons with disabilities; and (3) To explain the caregiver's expectations for persons with disabilities.

RESEARCH METHODS
This study was a qualitative research with a descriptive phenomenology approach. Data collection was conducted through in-depth interviews of family caregivers of persons with disabilities since birth in the Banyuurip Sub-district, Purworejo District. Inclusion criteria were: informal caregiver, i.e. in family with children/siblings/persons with a physical, mental or dual disability, age 20 years to 59 years old, domiciled in Banyuurip Subdistrict and willing to become a participant. Exclusion criteria were: formal caregiver, with age less than 20 years and above 59 years. The data were analyzed by Colaizzi's method and data triangulation was performed by a coder to maintain data validation. This research received ethical clearance from the Medical and Health Research Ethics Committee of the Faculty of Medicine, Public Health, and Nursing, Universitas Gadjah Mada. The sample selection was done by purposive sampling. The sample of the study amounted to 17 persons who were family caregivers from birth.

RESULTS
The results of this study provide an in-depth description of the feelings, inhibitions or difficulties, and expectations of family caregivers while providing care for persons with disabilities from birth. The results are presented below. Table 1 shows caregiver characteristics of 17 persons, including 6 male and 11 female caregivers, ages between25-57 years old, with mostly primary and highest secondary education, mostly working as laborers, with a long duration of care for persons with disabilities since birth between 8-30 years.  Table 2 shows the characteristics of persons with disabilities age between 8-30 years. Disability type i.e. physical disability, mental impairment, double disability with mild and severe levels and medical history. From the results of the above studies when related to the grief stage according to Kubler-Ross, each caregiver's results can be described in Table 6.
The results of this study are related to the description of the feelings of family caregivers who care for people with disabilities from birth, including family caregivers who have children with physical, mental, or multiple disabilities. Table 6 describes the Kubler-Ross Grief Cycle experienced by caregivers who went through the rejection stage by 7 people, the anger stage by 5 people, the depression stage by 6 people, the bargaining stage by 8 people and the stage of acceptance by as many as 15 people. Caregiver feelings can be seen in picture 1.

DISCUSSION
The results related to the description of the feelings of the family caregiver who care for people with disabilities from birth are depicted in Table 6. The caregivers describe the stage of acceptance as grateful for the time together, destiny, surrender, or not a problem. The grief theory explains that not everyone can go through all stages of the Kubler-Ross Grief Cycle. Some stages may be skipped completely, some will experience a different sequence of stages, while some will experience a return to previous stages and others may be trapped at one stage. The results of this study are consistent with studies that found that it may take a long time for caregivers to adapt to children with disabilities and return to a good family situation 9 .
The results of this study explain that family caregivers experience obstacles, both in sharing the barriers of persons with disabilities from birth and their own barriers as caregivers. Barriers for persons with disabilities are:

Cannot be Independent
Based on the results of this study, it was found that caregivers did not experience insurmountable obstacles but some caregivers had difficulty in caring for and assisting persons with disabilities, namely difficulties related to children being unable to be independent to take care of personal needs such as eating, bathing, defecating, urinating, etc. The results of this study are in line with other studies that found that the duty of a caregiver has challenges to unite the family itself 5 . This finding matches with other studies which indicate that the experience of parents in caring for children has different levels, depending on the type of disability and severity of disability, emotional support, and family empathy, for example, family support, and community support such as neighbors, and friends can provide a sense of peace and acceptance of the heart 11 .

Difficulties for School Access
The results of this study found that caregivers had some early difficulty when the child is entering school, i.e., children find it difficult to adjust to the new social and physical environment so that caregivers experience fatigue. This is consistent with other studies that showed caregivers with people with disabilities experience physical, psychological, and social challenges in the community such as fatigue due to additional duties during parenting, emotional distress, interpersonal difficulties, financial problems, and adverse social consequences such as social isolation 12 .

Organ Malfunctioning
Based on the results of the study, many caregivers have fears about the future related to the physical disabilities experienced by persons with disabilities such as not able to walk, cannot see, and cannot hear and this forces parents to adjust more than parents who do not have children with disabilities 13 . Recently, a United Nations convention on persons with disabilities provides some protections including inclusive education for all children and compassionate labeling language that asked the society to respect people who are handicapped by referring to them as persons with disabilities instead of disabled people, which is called, the universal use of 'People First' labels 14 .
In addition to the barriers experienced by persons with disabilities from birth, caregiver barriers involve several burdens namely psychological, financial, physical and social burdens in caring for and assisting persons with disabilities from birth.
(1) Financial Burden The results of this study indicate that assisting and caring for family members with disabilities requires huge costs for care, education, and daily needs. Because the economic condition is sometimes in a bad situation, caregivers often experience a feeling of stress and fatigue, lack of sleep and lack of appetite, which can trigger gastritis, hypertension, and arthritis. The results of this study are consistent with the research that found one of the caregiver's physical impacts is fatigue. Fatigue in the form of back pain or muscle pain is often felt by caregivers in America in caring for people with disabilities in old age 15 . The musculoskeletal impact is a common physical complaint among caregivers. Other research supports that there are some changes in caregivers such as physical, psychological, social and spiritual changes 16 .
(2) Psychological Burden The results of the study explained that caregiver's psychological reactions include forms of anger, negative emotions, such as shame, disappointment, worry, sadness and even difficulty in enduring the reactions of people with disabilities by hitting parents or hitting themselves if their desires are not immediately responded by parents, which are heavy psychological burdens for the family caregiver. Negative emotions and anger of parents often arise because of the physical burden of fatigue, muscle disorders, from caring all day and night for their children. Parents feel stressed facing children with emotional conditions involving these challenges. These incidents can occur repeatedly during caring for and assisting persons with disabilities from birth. This finding is consistent with research in America that showed the burden of caregivers is very heavy, especially psychological and physical burdens related to caring for people with disabilities 16 . These challenging incidents require family coping in the form of a sense of acceptance, patience, sincerity, and assistance from community and the family doctor to deal with psychological problems.
Another event which is common is when a child is too active and becomes difficult to control, the they will sometimes go berserk when their desires are not fulfilled. These conditions cause caregivers negative stress from the challenging situation. The results of this study fit the theory that self-control is strongly influenced by one's emotional state 17 .
(3) Social Relations According to caregivers, children with disabilities are less able to socialize and rarely play with neighbors. Stigma and maltreatment from neighbors make children tend to avoid social interactions 17 . The results of this study are in line with previous studies that showed the family is the first and also the closest environment which is the main source of support for people with disabilities 6 .
(4) There are No Obstacles Generally, caregivers experience difficulties and challenges in accompanying children or family members who have disabilities, but some caregivers do not experience obstacles. These family caregivers use two-way communication in discussions, sharing tasks, and overcome deficiencies, which can be covered by asking for help with others and taking responsibility for their tasks. This is reinforced by the communication theory of health workers and patients 18 .
The results of this study also explain the expectations of caregivers while caring for people with disabilities from birth. Some caregivers hope their children will recover and return to normal, and many caregivers expect children to become independent. Accordingly, the caregiver's expectations in caring for and assisting persons with disabilities are discussed below: (a) Organs can Function Based on research findings, caregivers who have families with physical disabilities still have the hope that their children can walk. This hope remains because the child goes through a period of growth. The research findings support the initiatives in the United Nations convention for people with disabilities to provide rehabilitative services and adaptive technologies that can assist them in gaining a more functional life 14 ..

(b) Have a Good Education
Many caregivers also hope to send their children to high school graduation. Other caregivers hope that children can attend the highest level of education. The United Nations conventions on people with disabilities ensures that education must be easy to reach regardless of the status of each child 19 . In America, the term for this inclusive approach is the guarantee of FAPE or 'Free and Appropriate Education' for all children.
(c) Family/Government Support Caregiver burdens include both the social and financial burdens. Caregiver financial burdens are in the form of medical expenses, physiotherapy, and transportation, while the social burden is often in the form of lost time away from family and community. These conditions mean caregivers need additional support in the form of motivation, information, solutions, and support from family, neighbors, friends, government, and social institutions. Many types of supports can be provided to reduce the family burdens. The caregiver needs family support in the form of emotional, physical, instrumental, and information supports 19 . Government support is also needed by people with disabilities and caregivers since many caregivers revealed that their children do not get help from the village government. Government support for children with disabilities is currently included in the National Health Insurance/Jaminan Kesehatan Nasional (JKN) program, which ensures a free education, improved access and facilities, and infrastructure 20 .

CONCLUSIONS
From the results of this study, it can be concluded that caregivers who care for people with disabilities from birth face many burdens, namely psychological, physical, financial, and social burdens. Psychological burdens are often in the form of anger, disappointment, fear, worry, and guilt but many finally can accept these challenges. The physical burdens include fatigue, lack of sleep, lack of appetite, which can result in diseases such as gastritis, hypertension, muscle disorders and joint pain. Financial burdens are related to medical expenses, transportation, and the cost of providing for daily needs. The social burdens involve various forms of stigma and negative labeling as well as lack of quality time spent with their families and communities. Besides meeting these challenges, caregivers must be able to make psychological adjustments that are influenced by several factors, namely the characteristics of children in the form of age, type of mild and severe disability, dual diagnoses, and history of illness or childbirth and the characteristics of the caregiver, namely duration of care, sex, education and age of caregiver.