RESEARCH ARTICLES

Impact on mothers' lives of caring for children with chronic illnesses

Maria Francilene Leite Colesante^I; Isabelle Pimentel Gomes^II; Jairo Domingos de Morais^III; Neusa Collet^IV

^I Nurse, Master degree studen at the Graduate Program in Decision and Health Models from the Federal University of Paraíba. João Pessoa, Paraíba, Brazil. E-mail: cilene_l@yahoo.com.br
^II Nurse, Ph.D. student in Nursing at the Federal University of Paraíba, Professor of the Public Health and Psychiatric Department of the Federal University of Paraíba. João Pessoa, Paraíba, Brazil. E-mail: enfisabelle@yahoo.com.br
^III Physiotherapist, Master degree student at the Graduate Program in Decision and Health Models from the Federal University of Paraíba. João Pessoa, Paraíba, Brazil. E-mail: jairodmfisio@hotmail.com
^IV Nurse, Ph.D. in Nursing – University of São Paulo/Ribeirão Preto, Professor of the Public Health and Psychiatric Nursing Department at the Federal University of Paraíba. João Pessoa, Paraíba, Brazil. E-mail: neucollet@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2015.4966

ABSTRACT

This qualitative study examined the impact of children's chronic illnesses on the lives of their caregiver mothers. Five mothers, whose children were hospitalized in the pediatric ward of a public hospital in Paraiba State, were interviewed from January to March, 2010. The analysis, guided by the principles of thematic interpretation, ascertained that the diagnosis was the most difficult moment for the mothers, and led to a variety of impacts on their lives. These resided in day-to-day care and were associated with changes in lifestyle and social interaction. Spirituality contributed to adaptation, and the experience of illness generated important learning for the mothers as regards ways to move on. Highlighting what is unique, while considering biopsychosocial and spiritual aspects, contributes to changing the present paradigm towards more comprehensive care.

Keywords: Pediatric nursing; chronic illness; child; family.

INTRODUCTION

Chronic disease in childhood affects the members of the family microenvironment that restructure their everyday organization to host and care for the sick child, experiencing a structural crisis in the family. The care of children is everybody responsibility but one of the family members becomes the main caregiver¹, providing most of the care, being responsible for the rooming-in hospitalizations, for medical appointments, the care and home support.

The pediatrics work requires expanding of the focus of attention, including the child and his family in the biopsychosocial context; it requires recognizing the family, especially the primary caregiver, as a member of the childcare process, experiencing his condition and suffering along with him. The comprehensive health care recognizes the influence of subjective factors (meanings, perceptions) of family members involved in child care and the influence of those living in the process of adaptation to chronic condition. Therefore, monitoring the family caregivers, by a multidisciplinary team during the diagnosis, treatment, adaptation and recurrent crises, it is essential for a completeness of health care.

Although the mother did not express consciously overloading from care to the sick child, the impact of this activity triggers problems related to their quality of life². In this context, the aim of this study was to understand the impact of chronic disease of a child in the life of the caring mother.

LITERATURE REVIEW

Care is usually done by the female figure that socially and historically is the one who hosts, feeds, cares, referring to a maternal image³. The mother usually takes responsibility for caring for the sick child, becoming the primary caregiver and suffering various impacts in her life.

The caregiver mothers often are marginalized, their work is not valued and they are not recognized as people who are going through a painful process and who need help, support and guidance⁴. The caregivers have negative changes in their quality of life, seen as fragile, and yet trying to be strength to support the child. Their feelings are reflections of the overloading of activities and uninterrupted daily care^5,6.

Although the emotional impact exists in these women´s lives, it cannot be recognized or verbalized because, for cultural aspects, it is difficult for a mother to admit that a child is a burden, an overload².

The impact for mothers of children with chronic disease can be emotional when causes feelings of concern, fear and responsibility, at the time of diagnosis, the daily contact with the sick child and the consequences of the disease. It can also be structural, given the necessary changes in the family environment and the resulting stress arising from intermittent care, plus the distance from the other children during hospitalization. It can occur the impact of social desirability and reveals the urge of caregivers to be similar to the others in prevailing social norms, the self-presentation strategies or due to situational pressures⁷.

METHODOLOGY

Qualitative and descriptive study conducted at the pediatric clinic of a public hospital of Paraíba. The study participants were five mothers of children with chronic disease who were hospitalized in the period from January to March 2010. Inclusion criteria were: child´s mother with chronic disease; to be with the child in the hospital during the data collection period and not having communication problems. The collection of empirical material was carried out through semi-structured interviews. The pilot test to interview script validation was done. After adjustments, the guiding question was: What is the impact of his son´s illness in your life?

The analysis of the empirical material followed the principles of thematic interpretation⁸ of maternal speeches after transcription of the interviews. Then, a first organization of speeches in certain order was done by classification; elaborating the horizontal cartographic material. Texts exhaustive and repeated reading was performed, making an interrogative relationship with them for the take relevant structures. This procedure enabled the development of classification by cross reading. Then, from the emerging structures, downsizing classification was possible, regrouping the most relevant themes for final analysis. Three empirical categories were built: diagnosis of the child and its impact for mothers; rearrangement to overcome the impact of the diagnosis; spirituality to coping and adaptation to chronic condition.

The project of the study attended Resolution number 196/96 of the National Health Council and Resolution number 311/2007 of the Federal Nursing Council, with a favorable opinion of the Ethics Committee in Research in the Institution under Protocol 350/09. The Term of Consent was signed by all participants of the research, which were identified with the letter E followed by a number, according to the order of the interviews (E1, E2 ... E5).

RESULTS AND DISCUSSION

Children whose mothers participated in the study came from the cities of the interior of Paraíba and had time to diagnosis of chronic disease ranging from 1 year and 8 months to about nine years. Regarding the length of hospital stay, this varied from 15 days to 3 months, occurring frequently more than one hospitalization per year. Caregivers had little education and had as monthly income around one minimum wage.

Diagnosis of the child and its impact for mothers

Motherhood accompanied by an unwanted pregnancy affects the imagination of mothers who early on, begin to plan their trousseau, speculate child characteristics, imagining a healthy child and their future life. However, upon receiving the diagnosis of chronic disease, the mother feels helpless in such a situation.

I felt a person with difficulties. The person who is with the thing in the hand and cannot do anything. As if your hand was opening and falling to the ground, wanting to break. (E4)

The discovery of the diagnosis of chronic disease in childhood is a strong emotional impact event and can be as a loss of the healthy child. The family can prepare the grief even before the death of the child, developing unconscious defense mechanisms such as shock and denial, feeling helpless to the situation ^7,9.

The diagnosis is seen as the most difficult phase due to fear of the unknown¹⁰. At this stage, the mother fears her role as caregiver and not feel prepared to face the child´s condition⁹. The diagnosis becomes one of the most important moments, reinforcing the need for a multidisciplinary team acting to minimize the suffering from the feelings of confusion at what is not fully known.

The way health care professionals welcome the caregivers mothers, as well as the technical terms used in information have an emotional impact, interfering in fighting the disease because the information received during this period are striking and will always be remembered^{7, 9,11}.

As well as the shock, denial may also be when receiving the diagnosis of chronic disease. In this testimony, the denial is together with mother´s sadness and despair, revolt and anguish:

He [doctor] gave the diagnosis. He explained that it was forever. I said I did not believe. He said it was true and I was saying it was not. I was stubborn with him [...]. I was angry, crying a lot, despaired. (E3)

Denial works as a mental device to prevent facts, ideas, fantasies or painful feelings to be experienced. The permanence of denial can threaten adherence to diagnosis and treatment, contributing to the search for non-scientific therapies. However, it is an important mechanism because it prevents the immediate mental breakdown because the inner world gets time to absorb and develop more appropriate defenses^12,13. Health professionals need to know the strategies that can be used by family caregivers, respecting their time to acceptance of chronic child disease.

Durante o diagnóstico a mãe sofre pela culpabilização e pela possibilidade de acometimento de outros filhos, pois ao buscar uma explicação para a doença ela encontra em si própria a origem da mesma.

During the diagnosis, the mother suffers from guilt and the possibility of involvement of other children because when seeking an explanation for the disease she finds its origin in herself.

It was a shock, I did not expect this. Especially now that it is transmitted by me and my husband. It is very difficult for me and for my family to accept it [...]. I thought it was okay to get pregnant again. (E5)

When the disease is genetic, feelings of responsibility for its occurrence could emerge, affecting the family adaptation if the grieving process is not resolved¹³. Mothers tend to find that they were not competent enough to generate a healthy child and associate the disease to some event during gestation or some hereditary influence^7,9. The disease becomes a traumatic event for mothers and when there a possibility of hereditary influence, it can interfere with birth planning of other children.

The experience of the diagnostic communication is unique for each mother who reacts differently. Mothers are inserted in different social contexts and need of individual attention. It is important that health professionals know the specifics of each one in order to fully act, being able to minimize the suffering and the negative impacts inherent to the situation^1,4,7.

Rearrangement to overcome the impact of the diagnosis

After the diagnosis, a rearrangement occurs in family dynamics to welcome the sick child. The family experiences many changes to provide proper care to the child. This new condition can lead to a structural impact on the caregiver mother in her occupational context, especially in the way of imposing and relating to her social environment^1,2,7. Given these changes, the caring mother divides her life into two periods:

Before T [son] was a situation, after T, it is another one. (E1)

It can be seen that chronic disease goes beyond the child´s body boundaries and reaches the whole family structure, featuring a problem that affects bio-psychosocially in the ones who experience this condition¹⁴. The horizontal dialogue is an attitude that helps caregiver mothers and their families facing the chronic condition^2,9.

The adaptation process is continuous, arduous and necessary to combat the chronicity. Many mothers go through painful experiences, as frequent hospitalizations have structural impact with the distancing of other family members and preventing the maintenance of permanent jobs, leading to the abandonment of paid work^1,3-5,7. The mother feels attached to childcare:

Before JA disease (daughter) I could work, I could leave very calm [...]. After this disease, everything has changed, because I cannot work because there is no one to look after her. (E4)

The abandonment of work by caring mothers affects the family unit, because the care of children with chronic disease is continuous and expensive, medicines and special nutrition require higher expenses for the family, which often is already at the limit of their financial possibilities^1,4,15.

Besides the change in the mother´s life that in general they start be liable in full for the child´s care, financial changes require rearrangements ^4,5. The family income decreases due to the primary caregiver giving up his/her job and family costs go up because the demands of the child´s treatment^1,3,4,16.

This situation creates new anxieties and concerns, different from those related to the discovery of the diagnosis, emotionally impacting the mother who is between the need to work to contribute to the family budget and the inability to do so for not having someone taking care of the child ^1,3,7,16.

Continuous care for sick child strengthens the bond between the child and the mother, which can lead to forms of suffocating relationship, which deprive the freedom of those involved, whether the child, mother or other family members.

At home, I let her play freely [...]. She likes to go to a small square close to home. I let him go. From time to time I go there, see if he's not jumping and is not going up over the banks, not to fall, not to get hurt. (E3)

Some caregivers exacerbate the dependency relationship with the child, developing a state of guard. Thus, living in childcare function, restricting the autonomy of the child, making him extremely dependent^4,15. This overprotection may be associated with feelings of guilt, uncertainty and fear of death¹¹.

The mother´s dedication to the child can harm the conjugal relationship becoming as secondary to child´s disease. The commitment in the care of the child deprives mothers to cultivate and enjoy a social life with friends and of the conjugal relationship^2-5. This relationship can also be influenced by family estrangement, caused by recurrent hospitalizations and by the demands of treating chronic disease^2,4,5,14.

I abandoned my bed. His room [son] already has a double bed and he does not sleep in the crib. I sleep next to him in that bed [...]. Before I slept in my bed with my husband. (E1)

Dealing with this situation of strong attachment is a difficult task for caregivers, especially when the child grows and entering in the social context, searching for autonomy, away from the care look of the family. The control break that was about the son brings grief, making the acceptability of the new time.

I am worried that this year she will study at Cruz do Espírito Santo [nearby town]. The car leaves 11 am and arrives 6 pm [...]. I'm afraid because she goes by bus, there are a lot of students, too full. [...]. It's a great time without being with her, without taking care of her. I find it hard. If I could I would go along with her everyday day. (E4)

Survival is one of the main function of attachment. When it is not safe, the child is unable to explore the surroundings, feeling unprotected and the primary caregiver has the feeling that, if separated from the child, this child will not survive^9,13. That is why attachment is important and there should be a confident way and private space needs of those involved so they do not develop a relationship which, instead of promoting the survival, suffocate and impede healthy living.

Other feeling identified was the imminent fear of death of the child and the lack of control of the crisis. The family remains constantly alert and any changes in the child´s health status is sign of concern and anguish.

I get nervous when he says he's with the belly aching. When he's like that, I'm afraid [...]. Nausea, vomit begin [...]. When he vomits, it is difficult, only a divine hand. He is here today, but tomorrow I do not know. God only knows. (E2)

The fear of losing a child is a feeling that reveals the insecurity and vulnerability of the caregiver mother in living and coping with the chronic condition of their child^3,14. It is not a single loss, but processes that generate feelings of successive losses, fickle, accompanied by pain, suffering, anguish, uncertainty, and especially impotence. Attitudes that ignore these feelings and neglect their care need to be addressed for the achievement of complete assistance.

Spirituality to coping and adaptation to chronic condition

Adaptation is a stage of living with chronic illness of the child achieved through a lot of effort⁴. This step is not static, the family ranges from a period of greater control of the situation to another less controlled, but it is important that it does not remain stagnant without advance ¹⁰.

Many coping strategies are used by caregivers, some of them positive and others negative. Spirituality is a strategy contributing for inner balance achievement and adaptation of crises.

I was very sad. The doctor says there is no cure, but That one from above does not disillusion any of His sons. I'm sure [...]. My family, some pray, others pray, ask God to have mercy on her, that it is good. For God nothing is costly. (E4)

The search for spirituality may be present at all stages of living with the chronic condition. The mother feels the need to know why his son had been affected by the disease and seeks explanation in religious/spiritual practice. When the disease is accepted, spirituality helps mothers to seek strength and hope, basing the experience of illness and family life^4,9,11.

The caregiver mothers, while recognizing the importance of the doctor-hospital monitoring and limits of medicine, they find in faith and hope a cure for their children⁹. The separation of scientific medical and religious/spiritual practice needs to be overcome. The biomedical scientific knowledge cannot explain all the dimensions involving the health-disease process. The health work that recognizes the spiritual search contribution becomes closer to completeness.

The search for God´s help is a sociocultural conception get within the family and the relationships established in society¹⁵. The search for the divine, for the transcendental, offers emotional support and demonstrates the hope inherent to human beings, even when medicine denies the possibility of healing. Hope appears as an abstract element in the adaptation phase, and may remain, contributing positively. Recognition of spirituality in health team´s action plan is crucial for a respectful approach to the binomial here studied^4,9,15.

The fact of experiencing a disease with all its psychobiological implications allows a life more deeply analysis³, from suffering, fear of death, recognizing human finitude³. Illness and impending death attach a special value to life, which redirects new practices.

Everyone is now calmer, have more patience. We can talk, walk, eat anytime. Stress, what for? Seeing T, a full child of limitations, living. Many things we learn, we have more patience [...]. We learn from the resilience of children. (E1)

The experience of a chronic disease, debilitating and great suffering for the child, can be a learning experience for family and professionals³. Those involved in the care question their values and recognize the body´s limits, and the importance of the other to the process of recovery and personal growth and society.

A life crisis brought on by the disease weakens the child and his family, when they experience pain, the possibility of death, fear, anger, envy and other mixed feelings, an immense significance found in the care provided by health professionals³. Thus, we can see that the health work governed by reason alone is insufficient¹⁷. It is necessary intuition, emotion and sensitivity to deal with the complexity of human suffering.

CONCLUSION

To validate the results discussed herein in the practice of health work must be understood by the professionals who provide care to minimize the suffering in the chronic condition during childhood. It is not enough to discuss the complexity involving an incurable disease if the practice remains rooted to scientism, to the detriment of other aspects involving human beings.

Understanding that the caregiver mother also needs care, expands the vision for health. The mother has pain, many times not physical or due to some organic change, but related to the impacts that continued care makes on her life. In this way, the disease starts being as something singular, considering the social, psychological and spiritual aspects as influential in the disease process. The biologicism evolves for the treatment of the subjects in their different demands.

The current context of the Brazilian health advocates work in interdisciplinary health team, with the integration of different services so that individuals can be cared in hospital and/or when returning home. Recognizing that the caregiver mother also suffers affects in daily contact with her other children, her spouse, in the world context and with herself, becomes relevant to minimize the overload that exclusive dedication to her child causes. It is up to the health team to articulate the support networks so that the caregiver mother did not feel alone in front of the multitude of meanings that are culturally attributed to the disease and care.

The family´s religious practice has contributed to the management of crisis situations, as well as the adaptation process of the caregiver mother who finds the divine transcendental and the desired peace. Spirituality cannot be disregarded or separate care. The health team provides emotional comfort expanding the possibility of feelings of hope to offer a guided religiosity care.

It is noteworthy that research to discuss the process of working in pediatrics bringing objects that expand the possibilities of care to family-child interaction must be carried out and brought to the debate on the local, regional and national levels. It is suggested to carried out further studies considering other realities, given the specifics of health care of this population. It is expected that the family background of children with chronic disease and the relationships established in the community and by the primary care team expand the possibilities of care.

REFERENCES

1.Brito DCS. Cuidando de quem cuida: estudo de caso sobre o cuidador principal de um portador de insuficiência renal crônica. Estud Psicol. 2009; 14: 603-7.

2.Pontes-Fernandes AC, Petean, EBL. Sobrecarga emocional e qualidade de vida em mães de crianças com erros inatos do metabolismo. Psic: Teor e Pesq. 2011; 27: 459-65.

3.Almeida MI, Molina RCM, Vieira TMM, Higarashi VIH, Marcon SS. O ser mãe de criança com doença crônica: realizando cuidados complexos. Esc Anna Nery. 2006; 10: 36-46.

4.Beck ARM, Lopes MHBM. Cuidadores de crianças com câncer: aspectos da vida afetados pela atividade de cuidador. Rev Bras Enferm. 2007; 60: 670-5.

5.Yamazaki S, Sokejima S, Mizoue T, Eboshida A, Fukuhara S. Health-related quality of life of mothers of children with leukemia in Japan. Qual Life Res. 2005; 14: 1079-85.

6.Klassen AF, Klaassen R, Dix D, Pritchard S, Yanofsky R, O'Donnell M, et al. Impact of caring for a child with cancer on parents' health-related quality of life. J Clin Oncol. 2008; 26: 5884-9.

7.Coletto M, Câmara S. Estratégias de coping e percepção da doença em pais de crianças com doença crônica: o contexto do cuidador. Diversitas [periódico na internet]. 2009; [citado em 07 jun 2015]; 5(1): [aprox. 13 telas]. Disponível em: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S1794-99982009000100009&lng=pt&nrm=iso .

8.Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 10ª ed. São Paulo: Hucitec-Abrasco; 2007.

9.Dantas MAS, Collet N, Moura FM, Torquato IMB. Impacto do diagnóstico de paralisia cerebral para a família. Texto contexto enferm. 2010; 19: 229-37.

10.Damião EBC, Angelo M. A experiência da família ao conviver com a doença crônica da criança. Rev esc enf USP. 2001; 35: 66-71.

11.Pizzignacco TP, Mello DF, Lima RG. A experiência da doença na fibrose cística: caminhos para o cuidado integral. Rev Esc Enf USP. 2011; 45: 638-44.

12.Cassarola RMS. A negação e outras defesas frente à morte. In: Santos FS, organizador. Cuidados paliativos: discutindo a vida, a morte e o morrer. São Paulo: Atheneu; 2009. p. 59-76.

13.Castro EK, Piccinini CA. A experiência de maternidade de mães de crianças com e sem doença crônica no segundo ano de vida. Estud Psicol (Natal). 2004; 9: 89-99.

14.Silva MAS, Collet N, Silva KL, Moura FM. Cotidiano da família no enfrentamento da condição crônica na infância. Acta Paul Enferm. 2010; 23: 359-65.

15.Brito TB, Sadala MLA. Diabetes mellitus juvenil: a experiência de familiares de adolescentes e pré-adolescentes. Ciênc Saúde Colet. 2009; 14: 947-60.

16.Leite NSL, Cunha SR. A família da criança dependente de tecnologia: aspectos fundamentais para a prática de enfermagem no ambiente hospitalar. Esc Anna Nery. 2007; 11: 92-7.

17.Strasburg AC, Pintanel AC, Gomes GC, Mota MS. Cuidado de enfermagem a crianças hospitalizadas: percepção de mães acompanhantes. Rev enferm UERJ. 2011; 19: 262-7.