ORIGINAL RESEARCH

 

Translation of family members' feelings in caring for children dependent on clean intermittent catheterization

 

Suzana AntonioI; Sandra Teixeira de Araújo PachecoII ; Márcia Pereira Fernandes GomesIII; Priscila de Araújo MachadoIV; Flávia Melo de CastroV; Marcelle Cristine Do Rosário PereiraVI

I Nurse, Specialist in Pediatrics at the Rio de Janeiro State University. Master student of the Stricto-Sensu Postgraduate Program at Faculty of Nursing (PPGENF), Rio de Janeiro State University - UERJ, Scholarship student of the Coordination for the Improvement of Higher Level Personnel (CAPES), Brazil. E-mail: suzananv@hotmail.com
II PhD in Nursing at the Anna Nery School of Nursing. Assistant Professor at Department of Mother-Child Nursing, Faculty of Nursing, Rio de Janeiro State University, Brazil. E-mail: stapacheco@yahoo.com.br
III Master in Nursing. Nurse at the Pediatric Outpatient Clinic of Pedro Ernesto University Hospital, Rio de Janeiro, Brazil. E-mail: marciapfg@hotmail.com
IV Nurse, Specialist in Pediatric Nursing and Neonatal Intensive Care at Pequeno Príncipe Faculty. Master student of the Stricto-Sensu Postgraduate Program at Faculty of Nursing (PPGENF), Rio de Janeiro State University - UERJ. Scholarship student of the Coordination for the Improvement of Higher Level Personnel (CAPES), Brazil. E-mail: prisciladearaujo@gmail.com
V Nurse, Specialist in Neonatal Nursing. Master student of the Stricto-Sensu Postgraduate Program at Faculty of Nursing (PPGENF), Rio de Janeiro State University - UERJ. Scholarship student of the Research Support Foundation of the State of Rio de Janeiro (FAPERJ), Brazil. E-mail: vinhamelcas@gmail.com
VI Nurse of the Fernando Magalhães Maternity SMDC - RJ, Master student of the Stricto-Sensu Postgraduate Program at Faculty of Nursing (PPGENF), Rio de Janeiro State University - UERJ. Brazil. E-mail: marcellecrp2013@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2016.19990

 

 

ABSTRACT

Objective: to understand the feelings experienced by family members caring for children with neurogenic bladder dependent on catheterization. Method: qualitative study of 12 family members at a university hospital pediatric clinic. Thematic content analysis was used. Results: three analytical categories emerged: fears in caring for children dependent on catheterization; denial of the new situation; and concern for the children's future health. The research thus shows how complex the process of caring for the family is, because it comprises not only technical aspects, but all their emotional involvement in the new care situation. Conclusion: it is essential to recognize and understand the fears and difficulties of families caring for children with neurogenic bladder, and to accept their weaknesses and difficulties.

Keywords: Child care; urinary bladder neurogenic; intermittent urethral catheterization; feelings.

 

 

INTRODUCTION

In order to better understand all the necessary care for the child with neurogenic urinary bladder, it is important to know the specificities of this health disorder. It is a disturbance in the bladder storage and emptying dynamics, due to a vesical-sphincter dysfunction caused by a nervous system damage, which can lead to progressive renal injury. This impairment of the nervous system, which was the responsible agent of all dysfunctions, may be congenital or acquired. Among the causes of congenital lesion, the most frequent is myelodysplasia and, among the causes are acquired lesion, traumatisms and tumors of the spinal cord are the most common1,2.

Therefore, in relation to children with bladder dysfunction such as the neurogenic bladder, in which it is not possible to have adequate urination with other treatment methods, the clean intermittent catheterization (CIC) should be performed in an suitable and regular way3.

The care context demands that this child is included in a group called as Chidren with Special Health Care Needs, by Maternal and Health Children Bureau in 1998, in the United States and, in Brazil, of "Brasil de Crianças com Necessidades Especiais de Saúde" (CRIANES)4, 5.

At first, when a family is in front of a CRIANES, the tendency is a disorganization, changing all habitual routine and dynamics, and it is necessary to look for available structures to reorganize and reacquire stability. Many times, these families leave the hospital with their children with complex care needs, carrying a great burden with new tasks and duties, that can trigger a major change in personal and family habits. Additionally, they also carry many doubts and fears related to their abilities on how to deal with the situation. At first, at the moment of receiving the diagnosis, they may develop some feelings of denial of expectations, requiring the adaptation of the idealized child to a real one6.

The indeterminate or irreversible dysfunctional time for the child, along with the risk of complications, generates constant control and care from the family, in order to try to prevent possible sequels that may occur; consequently, the main caregiver starts to live in function of the child's life and be involved almost exclusively with the care of the child 7.

During this process of discovery and adaptation to the new reality, around the child with neurogenic bladder, diverse feelings may be experienced. The relatives' intense experience of these feelings can cause loss of structure and instability as well as be etched in their memories like a scar8.

Therefore, some difficulties arise when dealing with the various feelings that consume the life of the relatives who take care for the child with neurogenic bladder. The lived reality needs a complicity among the caregivers and a lot of disposition, in addition to every apparatus that the multiprofessional team can offer them, so that they feel stronger and safer, thus being able to face the situation of this child who has special health needs9.

In this respect, this study aimed to understand the feelings experienced by the family members, when caring for the child with neurogenic bladder dependent on clean intermittent catheterization.

 

METHODOLOGY

This is a research with qualitative and descriptive approach, carried out in the pediatric outpatient clinic of a university hospital located in the city of Rio de Janeiro. It had the participation of twelve family members of children with neurogenic urinary bladder, who met the inclusion criteria, that is, they were family members of children (0 to 12 years) with neurogenic urinary bladder, monitored at the pediatric outpatient clinic in question and directly cared with clean intermittent catheterization (CIC). The research excluded those family caregivers whose children performed CIC in an independent way, that is, without depending on family supervision.

The data collection was performed from January to July 2014, through a semi-structured, recorded interview, in order to register the participants' comments and using a Motorola RAZR DI mobile phone. The anonymity of the participants was ensured by using the name of their preferred flower as a pseudonym and all of them were clarified about the confidentiality of the information collected, as well as the right to withdraw from their participation at any stage of the research. A Free and Informed Consent Form was given to each participant, after its reading with the participation of the researcher and also after the necessary clarifications; the written consent of each participant was obtained in the abovementioned term. All materials obtained through collection, such as voice recording and transcription of speech, will be stored by the researcher for a period of 5 (five) years and, later, will be destroyed.

In order to achieve this study's objective, the following question was asked: 'How do you feel about caring for the child with neurogenic bladder-dependent catheterization?'

The interviews were transcribed and analyzed following the three phases of the thematic analysis: the pre-analysis (with fluctuating reading, to know the content of the empirical material generated in the interviews), the exploration of the material (when the raw data were transformed into units of meaning and then grouped into categories) and the treatment and interpretation phase of the results10 (when some inferences were made according to the scientific literature on the matter in question.).

The research was approved by the Research Ethics Committee of the referred institution, under the opinion number: 517.563.

 

RESULTS

Through the analysis of the speeches, the following categories have been emerged: the fears in the care process of the child dependent on the catheterization; the difficulty in accepting the new reality; the concern about the child's future health.

Category 1. The fears in the care process of the child dependent on the catheterization:

The fear in positioning the probe into the child's urethral orifice was one of the feelings that emerged among the family members, in the process of caring for the child with neurogenic bladder. In this respect, the family members revealed the fear and concern in not introducing the probe into the urethral orifice, reporting difficulty in finding the correct place of introduction:

I'm afraid to put it in the wrong entrance, I always put it in the right place. But I'm afraid. I find this part difficult. It is scary when it comes to put the little rubber catheter inside her. (Violet)

Finding the urethra was difficult, I was scary. (Lotus)

(...) because I was very scared of not finding the urethra. When I saw the other girls – the nurses – doing it, I was scared to death. (Jasmine).

(...) at first, I was a little bit scary, for reasons like this, for I did not know the anatomy of the human body. In the case of the vagina, I did not know it, I had difficulties, I put the probe in the wrong entrance, but over the time I learned where the entrance was. I mean the urethra, do you understand? But, at the beginning, I had this fear when doing it at home. (Lily)

We can verify that, in what concerns to the family members, the act of taking care of a CRIANES leads to the development of several feelings, until they are able to perform the care. Among these feelings, fear and inability are frequently found. In order to minimize this fear, due to the history of CRIANES with neurogenic bladder, and also for having to deal with catheterization, it is necessary to provide caregivers with the right skills that allow them to have safety and confidence to perform CIC11,12.

For the safe conduct of CIC, it is necessary to have manual ability as well as the knowledge about the technique of inserting the catheter into the bladder. Therefore, for the success of the procedure, the caregiver/family member shall be trained by health professionals about the whole catheterization technique, and a key role in this orientation belongs to the nurse13.

During the teaching of the catheterization technique, it is important to consider the feelings of the family members when performing this procedure. One strategy would be the step-by-step demonstration of the technique, to be performed with the help of a doll. This demonstration must be carried out and supervised by the nurse until the family member/caregiver is able and safe to perform it. Additionally, explanatory videos can also be used in this teaching-learning process11.

The speeches of the caregivers also showed the feeling of fear in causing pain to the child, during the catheterization procedure, when caring for the child with urinary bladder:

It was scary. It is very difficult to think that, at every catheterization, our son will feel pain. (Daisy Rose)

I was afraid of hurting her in catheterization. I was afraid of her feeling pain. (Magnolia)

I'm afraid of hurting her. (Violet)

Pain was and still is one of humankind's great concerns. This is defined as a multidimensional phenomenon, involving physical-sensorial and emotional aspects. According to the International Association for the Study of Pain, pain is an unpleasant sensory and emotional experience, associated with actual or potential tissue damage14.

Pain can generate unpleasant reactions, such as fear, anxiety, and resistance to the procedures that must be performed. This fear may be a result of the individual's cultural belief, and not rarely, of insufficient or inefficient guidances. In order to minimize this fear, it is necessary to provide caregivers with the right skills that allow them to have safety and confidence to perform CIC15. Moreover, an important aspect to be discussed with family members is related to the identification of pain signals in the child. The valuation of the subjective aspects of pain ensures a humanized care, since it respects the singularity and the difference of the pain threshold for each one16.

In this respect, the nurse and the health team must work with the caregivers, with the specific didactics, favorable to the caregiver's level of knowledge, in such a way that doubts, fear and apprehension could be removed.

Category 2. The denial of the new reality of the child

The initial difficulties in accepting the new reality of the child arised in the family members' speeches.

Look, (...) it was really bad, because she had the accident, I did not expect that, do you understand? I still can't get used to this fact, because my daughter was born perfect and, because of a negligence, she acquired it (the neurogenic bladder), although the accident was very serious; but I think that nowadays, for a mother, is very difficult to accept it, but thanks God, God gave me her perfect and normal, right? In the way, she is. And so, I keep going like this. (Red rose)

At first, it was very difficult. To the family too, to the uncles, grandparents, to understand that it does not injure, it does not hurt. But you have to adapt yourself. (Daisy Rose)

Through these comments, we can verify the caregivers' denial about the new reality of the child. At first, when the child's diagnosis is discovered, the family experiences a feeling of frustration and shock, thus causing the end of the dream of a "perfect" child, for the child is born with a place already established by desire, and defined in a symbolic way in the parents' imaginary. Once established the diagnosis and possible prognosis, a state of suffering and different expectations are triggered in the child and his family, causing profound changes in their routine and life, not only because of the disease itself, but also by its social, emotional, affective, cultural and spiritual effects.

In the process of the diagnosis acceptance and adequacy and through the help and support to the caregiver, it is essential to develop a favorable family structure, aiming to avoid the natural wear, caused by fatigue and stress associated with this responsibility. To the extent that there is the possibility to share responsibilities of the care with the child, there may be less physical and mental wear for all persons involved, even affecting the quality of their lives and also the care provided to the child6.

The difficulty in accepting the need for CIC procedures in the child also arised in the family members' comments:

So, I think it was worse at first. No mother expects to have to do this (catheterization) on her son and, when I saw her, a little child, and that I should do it, it was really bad, it hurt a lot until I got used to it. The first time I saw the girl doing it too, it hurt a lot, I cried a lot. (Daisy).

He is adapted to it, but there are moments that he has a little crisis and cries... Only at the beginning I thought I was not able to do it and I said 'well, how am I going to do it? How am I going to deal with this on a daily basis? How am I going to fit this into my day-to-day?'(Lily).

The family acceptance of the diagnosis requires understanding the pathology and adaptation, in order to perform a differentiated care, that is not part of the usual knowledge. The feelings of fear and uncertainty, shown by the family, are the villains that appear at this crucial moment of necessary care of the child17. Often these feelings are interconnected by the family members' process of mourning, when they discover the diagnosis of their children, and because they are not prepared to assume this child that was not in their plans. This demands a greater difficulty for the CIC procedures18.

As soon as these family members assume the illness of these children, and that the mourning is gradually broken, the CIC procedures are no longer frightening, through adaptation and learning19, because these processes overlap the feelings generated during mourning, and thus allow a transition, from which they recognize the need to perform care in order to maintain the child's life through modifying habits18.

Therefore, it is recommended that the moment of the "announcement" of the diagnosis of the child's special health need, such as the neurogenic bladder, be made in the presence of the whole family, in a private place and, preferably, with the presence of the child in one family member's lap. After this moment, it is also recommended that the family stays in the place, together with the health professional, to reflect on the information that they received, since the way it is provided reduces the risk of conflicts and facilitates the family's understanding and care20.

Category 3. The concern about the child's future health

The reports show the family members' recognition about their responsibility in the care of the child with neurogenic bladder, as well as the concern with the future health of this child.

Now I know my responsibilities, with me and with her. I do not want problems to my daughter later. (Violet)

Ah! I don not know, over time she may even run out of kidneys, do hemodialysis, have all the problems, not only in the bladder but also with the kidneys, becoming a more serious thing. Did you understand? That means, to be necessary to treat her kidneys. (Lily)

The responsibility and the fears, resulting from the new reality of caring for the child with neurogenic bladder, make the family members worry about his future. It is believed that such feelings are derived from the possible complications that may arise if the neurogenic bladder is poorly managed; in this case, the residual urinary stasis would be its main consequence, with repercussions on urinary infection and renal deterioration, thus causing apprehension in the family with the possible occurence of complications in case of failure. In this context, the nursing care becomes necessary, since the nurse is one of the professionals who can support the family to face their emotional needs. Dialogues may help in case of supporting the family to deal with the situation, in order to mitigate fears and concerns2,4,7,17.

 

CONCLUSION

The study provided an understanding of the family members' feelings in the care of children with neurogenic bladder dependent on clean intermittent catheterization: the fear of introducing the catheter into the urethral meatus, by the complexity of the anatomy of the external genitalia and the possibility of causing pain, as well as the denial of the need to perform the CIL procedures in the child and concern for the future, resulting from the new reality of child care. In this respect, the emotional support for the parents becomes indispensable, through conditions of reception, understanding and sharing of their feelings, fragilities and difficulties.

Through the results, it is possible to verify how important is the attention given, by the health professionals, to the feelings of the familiar members of these children with neurogenic bladder, recognizing these feelings, as well the relatives' emotional conditions and their expectations regarding their future. It is essential that the professional become able to approach this family member, to understand his main concerns and doubts, using a suitable language, in a clear and objective way, allowing them a better understanding of the facts, so that these feelings do not interfere in a negative way in the child's care.

This research presents the limitations of a qualitative study, and does not aim at a result generalization, but rather the facets that involve the family members in the care of the child with neurogenic bladder dependent on the CIC procedures.

 

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