Psychological impacts of the birth of a child with a disability on parents

Psychological impacts of the birth of a child with a disability on parents

Introduction

The birth of a child with a disability undeniably represents psychological strain and a significant physical burden not only for the parents but also for close family members shaping family functioning, while the stressful situation connected with the diagnosis announcement is a constant fact regardless of whether the child has a mental, physical, hearing or visual impairment. For positive acceptance of disability in the family it is important to create supportive conditions that allow parents to cope with the new life situation and to have a sufficient support network consisting of family, the broader environment and institutions that help improve living conditions for people with health disadvantages.

The birth of a child with a severe health impairment and care for the child places an extraordinary burden on parents. For many, it is a so-called turning-point life crisis associated with the painful feeling of unrealized expectations of the birth of a healthy child that was meant to satisfy projected wishes and images, sometimes exceeding objective possibilities. Because parents are very vulnerable in situations that directly concern their children, the birth of a child with a severe health impairment is one of the most difficult, if not the most difficult, life crises for them; it is linked with a very complex and complicated process of coping with this reality and with a difficult process of its acceptance by the family (Šrajer, Musil, 2008).

Emotional experience when a child with a disability is born

If a child is born into a family and diagnosed with a health disability, feelings of joy at the child's birth are usually replaced by fear, anxiety and hopelessness associated with an unclear view of the future. The uncertainty about the child's further development is often reinforced by healthcare workers and doctors, who are very cautious when predicting the development of disability and its impact on the child's motor functions, central nervous system, speech apparatus and movement structure. Family members are exposed to high pressure, stress situations and confronting feelings that they cannot process without support; therefore, family development with a child with a disability is a long-term process that unfolds in stages from shock to reconciliation and full acceptance of the life situation connected with the arrival of such a child. After accepting reality comes a period of parental adaptation to the child with disability, during which mutual familiarization, creation and adaptation of conditions to the needs of the disadvantaged child take place. Family adaptation depends on many factors, such as parents' education level, strength of inner motivation, preferred coping strategies for dealing with stress, and the connectedness of family ties, all of which significantly shape further acceptance of the child by the immediate environment and the family itself.

When reality is faced with the birth of a child with disability, the family adjusts individually on the basis of available support resources, support networks and family cohesion, which can be divided into several stages. Success or failure in accepting disability is determined by several factors that have different influences on family functioning in each stage.

The article’s author, Lucia Ludvigh Cintulová, herself lives with a disability, and therefore is able to identify the fundamental stages of family development and stages of reconciliation and acceptance of the new life situation connected with the birth of a child with disability. The article describes these stages as follows:

1. Disclosure phase

connected with initial shock. This stage is highly emotional and includes parents' reaction to the notification that their child was not born healthy, but with a defect, disorder, or physical injury. Initial shock is stronger for parents when prenatal medical results during pregnancy showed no child health abnormalities. Likewise, the way the diagnosis is communicated has a major impact on how parents receive this message. It is often communicated in an unprofessional and inhumane way with a negative charge: “Your child will never walk anyway, you should be grateful that they are not mentally disabled,” or in the case of a child born with intellectual disability, staff responses in hospitals are similarly inappropriate: “Do not panic, but your child is mentally disabled; unfortunately, you cannot expect anything from them. Nothing will come of them.” In this phase of emotional shock we encounter two types of parents. One type tries to reverse the diagnosis through repeated requests for examinations, while the second group of parents does not accept the diagnosis, because they expect a miracle—that doctors made a mistake when determining the diagnosis—or they seek a miraculous treatment that would cure their child.

Parents are far from experiencing such intense anxiety and fear when they expect developmental difficulties in their child with disability, because they have enough time to accept this fact and prepare for the arrival of a child with disability. In the early stage doctors cannot predict the child’s development with certainty, but they can estimate it. It is important for parents to accept the child as they are and to try to stabilize their health condition as much as possible and support their personal development as they would with a healthy child.

2. Denial of reality

. Parents whose child was born with disability reject this reality and treat the health diagnosis as an error, or they look for experts who would reverse this message and tell them good news. At this stage parents have no interest in seeking solutions; they deny that their child may have a permanent health impairment. They lack basic information about what type of disability is involved, its consequences, and they feel powerless. They are not interested in learning how to improve the health condition or how rehabilitation should proceed for the child, because they do not want to admit the existence of disability.

3. Guilt and anger phase

These two opposites appear in parents when all attempts to reverse the diagnosis fail; then a process of searching for blame and feelings of guilt starts. Parents either blame themselves for possible neglect during pregnancy or try to shift responsibility onto others, most often onto medical staff. The effort to find a culprit is often associated with aggression directed either at partners, or it turns into anger directed at hospital personnel (Říčan, Krejčířová, 2006). Parental guilt for failing in their role can become so intense that it can lead to further psychological problems, such as anxiety, postpartum depression, or resentment toward the child with disability, toward whom they cannot create a positive relationship. Parents’ anger is often directed toward the child with disability, because they perceive the child as the source of family problems and the burden they cannot handle in the initial shock of the diagnosis.

4. Self-pity and pity toward the child

. At this stage, parents often ask why precisely them had a child with disability born, why their child must suffer such a diagnosis when the child has been alive only a few hours and has harmed no one. They cannot imagine how they will manage care for such a child, so it is essential that parents receive not only psychological help, but also counseling on care and upbringing of a child with disability. Parents need help in this difficult life situation, especially access to a wide source of information to help them understand and know the disability. Supportive groups are also useful helpers, as they positively encourage parents and their efforts in handling this demanding task. They try to find ways out of this situation on their own, but they cannot see anything positive about giving birth to a child with disability. They sink into self-pity and forget that the child needs them. Conversely, the opposite can also happen: the child’s disability can become a driving force for a parent who had been drowning in self-pity, as the child’s own resilience gives them a renewed sense of purpose. Counseling, sufficient information and provided compensations can bring optimism into parents’ lives. Many sink into pity and display excessive pity toward the child with disability, while not realizing that this harms the child the most. They do not see in the child a person with potential and positive qualities, but only an object of pity, one who will have a hard life and one seen as the cause of family problems. When they gradually detach from self-pity, they begin to see positive traits of the child, as well as their personality; then comes the phase of acceptance and acceptance of reality.

5. Acceptance and adjustment to reality

. This phase is associated with the fading of negative emotions and a reduction in tension and stress, when parents stop searching for culprits and instead take a rational stance toward solving the new life situation created by the arrival of a child with disability into the family, which they must face in daily activities. Most parents in this phase hold the attitude: “Nothing can be done; this is our child and we have to reconcile with it.” Parents objectively accept the fact that their child is disabled and requires individualized care, but also changes in family functioning. They begin to adopt the attitude: “This is our child; we love it as it is.” From a subjective perspective, we can say that only few parents truly reconcile with the fact that their child is disabled; with time they learn to live with this reality, but they never fully accept it internally because in life they encounter situations that strengthen feelings of unfairness.

6. Changes in family functioning

. This phase occurs when parents come to terms with their child’s disability and accept it as it is. At the same time, they begin to organize changes in family functioning, adapt family life to the needs of the child with disability, adjust family conditions for upbringing and care, and invest maximum effort into improving the child’s health status. Family relations change, adjustments are made to habits that previously worked in the family in light of the arrival of a child with disability. They seek help from relatives, begin using the social system that would ease their situation and provide support for compensating severe health impairment in the form of financial contributions, or look for institutional settings that would partially take responsibility for the child’s care, especially when the child enters mandatory school attendance. Reaching this phase is typically characterized by the parental attitude: “we learned to function together and adapted.” Other authors refer to a reintegration phase, where parents gradually begin to perceive harsh reality. The organism adapts to the stress situation, but not always in a healthy way. Divorce often occurs, with fathers trying to relieve themselves from the burden by shifting responsibility onto the mother. The opposite extreme is self-sacrifice in favor of the child with disability (Prevendárová, 1998). Another negative way is rejection of the child and attempts to place the child in institutional care. This is the opposite phase to family functioning change, where the family tries to take a positive approach to solving the situation and is committed to raising a child with disability, even though aware of economic burden, psychological strain and the need for sacrifice.

7. Maturation phase

. In this phase the family has accepted the child and their disability as much as possible and has adapted family functioning to the new life situation so that family needs and care for the child with disability are balanced. They emphasize that relationships among family members should be harmonious and mutually supportive. The family has adjusted to an established system of functioning and accepts it, accepts changes that occurred with the arrival of a child with disability, and seeks constructive solutions. In this maturation phase, which is marked by complete parental maturity, there is a change in values; parents begin to realize what matters most in life and start thinking rationally about possibilities for social, school and therapeutic rehabilitation. They reevaluate their lives and change value priorities. Love, cohesion and mutual acceptance should come first so the family can function fully and satisfy the needs of its members. This is a long-term process that can last several years, as reaching this phase depends on family members’ emotional intelligence, coping strategies for managing burdens, personality traits and abilities to solve problematic situations. An inseparable component is human motivation and the inner strength of each family member, which contributes to harmonizing family functions. Parents do not perceive disability as misfortune or life catastrophe, but accept it as a positive element that contributed to family cohesion, awareness of true values, and strengthening relationships among members. A child’s disability is seen as a motor for life, motivating them and driven by parental life optimism, forgiveness and positive thinking.

8. Disruption phase

. This is a family life cycle in which parents have accepted the child’s disability but have not been able to adapt to the new life change; they have been unable to accept the large number of changes brought by caring for a child with disability, and disruption occurs in family functioning, relational ties among members, and communication, potentially escalating to marital collapse or separation of partners. One parent or both may be unable to cope with the burden linked to care for a child with disability and cannot manage psychological tension and emerging problems. Over time, conflicts escalate and, after long-term persistence, transform into a family crisis, whose mishandling can lead to family breakdown, most often associated with a father leaving.

9. Freedom and independence phase

. In this phase parents become mentally freed from the child with disability. In this stage parents have put forth maximum effort to improve the child’s condition and support their independence. If the child’s health stabilizes, parents reach a point where the child is no longer heavily dependent on them: the child attends school, is integrated into the social environment, has interests, continually attends rehabilitation and professional care, and parents gain a sense of freedom and start seeking opportunities for self-realization. Although their child with disability will always need them, parents need to realize they also must pursue their own interests and organize free time just for themselves. In this phase, parents begin to fight not only for the rights of their child with disability but also to realize the necessity of fighting for themselves. Most mothers of children with disabilities report that they do not find enough psychological support from husbands/partners, but they are glad men remain in the family and help with family provision, especially financially. It is necessary that parents find a driving force that gives them energy to manage demanding care, such as opportunities to spend free time outside the home, pursue hobbies, build new friendships, or simply spend time in a community other than the one connected to disability. A woman needs to feel that, despite giving birth to a child with disability, she is a whole person and can realize herself in activities that interest and fulfill her. In this phase it is essential that parents realize they cannot be manipulated, used or humiliated by their own child, regardless of the child’s disability. A parent is also a person with own needs and desires, so they should not let themselves be blackmailed by accusations that they leave a child with disability for a few hours, or allow themselves to be used by a child with disability who constantly demands their attention. The sooner a parent realizes this, the easier it is to handle the difficult life situation and the more easily they achieve freedom and independence in decisions about themselves. It is important to show the child with disability that they are loved and that it matters to the parent, but for the child’s development one must not do for them what they can do themselves. Doing so reinforces dependence, not independence, even if parents try to foster independence in other areas, for example to stand on their own feet and start walking. Parents must learn to set boundaries—do for loved ones as much as they can, while setting aside time for themselves to activate inner strengths so that, step by step, exhaustion does not intensify family breakdown. Parents should know as much as possible about their child. Understanding the nature of their child’s disability helps parents better understand and make sense of them. Information is best sought from specialists or from people with longer experience caring for a child with disability. It is very important that parents meet families with similar challenges.

Quality of life assessment

Assessing the quality of life of the family as well as the disabled person who is part of this family is very demanding, because it requires considering human functioning in a wider context. Disability is usually defined in terms of the limitations it brings to an individual’s functioning, but social environment and family functioning must also be taken into account, as they determine subjective and objective perception of quality of life. Comprehensive approaches in work with a disabled family member focused on improving the quality of life of a person with disability must be based not only on a medical model and rehabilitation therapies, but also on a social model that emphasizes development of individual potential and successful socialization and integration into society. It is important that we do not focus energy only on eliminating health consequences of disability, but rather highlight positive aspects, life prospects and opportunities to support independence of the individual.

Another factor affecting the quality of life of a child with disability is support from parents, meeting their needs and creating a natural environment. The goal is to build independence and the highest possible level of self-care (Končeková, 2005). The greatest influence on a child with disability’s further personality development comes from their own family and family relatives, who are in daily contact and contribute to creating the environment in which the child with disability grows up. An overly protective parenting approach has a negative effect on the child’s personality because it does not develop individuality; on the contrary, it strengthens dependence on others. By integrating such a child into family functioning we allow them to learn about themselves and the world around them, strengthening in them positive feelings of respect and acceptance and motivating personal activity. The progress of development for a child with disability depends not only on expert support at various levels but especially on parental upbringing, which should focus on strengthening emotional intelligence, cognitive functions and especially skills directed toward self-sufficiency to the maximum extent allowed by health limitations.

,,"The most suitable approach to raising a child with disability is taken by those parents who can accept their child’s disability, have a loving and demanding approach toward them. Acceptance of the child and striving to realize an educational program while adequately meeting the child’s emotional needs. This upbringing allows a child with disability maximal personality development and development of positive social relationships" (Prevendárová, 1998, p.47).

The choice of methods and procedures when working with a family with a child with disability depends on the type of disability, extent of bodily functional impairment and developmental stage of the child. Families with a person with disability in them essentially create two types of sibling relationships. If one child is healthy, they must learn to respect certain limits arising from the sibling’s disability and must possess great empathy, cohesion, and a willingness to help uncover and develop those traits and abilities that make a child with disability unique. As an example of the complexity of caring for a preschool child, we present developmental differences between a child with cerebral palsy and a child without any disability of the same age. Comparing differences in development between a child with and without disability allows understanding why care for a child with disability creates a very heavy and stressful situation for parents and requires involvement of all professionals at multiple levels, including the close support network of the family, which can help the family physically, psychologically and financially in meeting the needs of a child with disability.

Table 1: Comparison of development in a child with and without disability

Source: author's own analysis

Challenges for families with a child with disability

Based on communication with families with a disabled family member we can state that the problems families face are similar across all regardless of type of disability. To support acceptance of a child living with disability, it is essential to create a comprehensive support system that would function according to networking principles. The most common shortages in the area of support for families with a disabled member are as follows:

1. In the early years there is often a non-comprehensive approach to diagnosis and to subsequent healthcare procedures, which should be aimed at improving the child’s cognitive, motor and movement functions in the direction of developmental progress.
2. The social and professional counseling system is not integrated, also with regard to developmental stages of a child with disability, and continuous care is not monitored sufficiently from a family crisis prevention perspective.
3. Enforcing rights when claiming entitlements from the social system is a demanding discipline in which families with a child with disability lack adequate professional, financial and human capacity. Such families are usually left to “good will.”
4. There is a lack of an empathetic approach by social workers at offices and institutions, where unwillingness to provide information about support options prevails; networking of institutions helping families with a child with disability barely exists.
5. Support meant for families with a child with disability is often supplemented by the non-profit sector, which fills gaps in the network of social services, including self-help groups founded by parents or friends of disabled people to increase awareness, exchange experiences and improve quality of life of the disabled.
6. Outreach services, especially in municipalities, are absent for families with disability, and the burden of care is largely left on parents’ shoulders, especially in preschool age and later in school age, because in school settings there are not enough assistants to support school integration of children with disability.
7. Support from state and local government is inflexible, waiting times are long for preparing necessary assessments, and the process of recognizing compensation at labor offices in the social affairs field is time-consuming.
8. Feelings of helplessness in parents of children with disability increase steadily as information is lacking and the support network that would show them a way to solve their life situation remains weak.

For support of families with a disabled family member, tools and measures are defined by Act No. 447/2008 Z.z. on monetary compensation for disability under Section 2 and amendments and supplements of some laws in later regulations, and Act No. 448/2008 Z. z. on social services. Social services are created by many institutions with different scopes of work, whose goal is help and support in social integration of an individual in an adverse social situation and prevention of social exclusion. In general, the goal of support services is to help clients live life in an ordinary way or as close to ordinary as possible, thereby integrating them as much as possible into the economic, social and community activities that are customary in society for people of the same age. (Bendová, Zikl, 2011, 2012).

Social work with a family with a child with disability is highly important, because the social worker seeks appropriate social measures to mitigate consequences of disability, leads and accompanies the family, supports the child toward maximum possible independence, and helps successful integration into school environments. At the same time, it actively collaborates with other professionals with the aim of implementing different rehabilitation approaches—school, social, therapeutic and treatment methods.

Conclusion

The seriousness of health impairment lies in the need for a comprehensive approach to eliminating the consequences of disability and improving the child’s health condition, which for parents means significant financial expenditure and psychological and physical effort. In helping families, we should strive to understand their complex life situation and approach the child according to their diagnosis. It is important to realize that children with disability should be approached individually, while on the other hand their intellect and potential should not be underestimated, since this can be developed enough for a person with disability to function independently.

Author: Mgr. Lucia Ludvigh Cintulová, PhD. List of bibliographic references

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