ORIGINAL RESEARCH

Professional care for children with cerebral palsy and their families

Meryeli Santos de Araújo Dantas^I; Vanessa Medeiros da Nóbrega^II; Carla Patrícia Novaes dos Santos Fechine ^III; Isolda Maria Barros Torquato^IV; Wesley Dantas de Assis^V; Neusa Collet^VI

^I Physiotherapist. Ph.D. in Nursing from the Federal University of Paraíba. Professor at the University Center of João Pessoa. Paraíba, Brazil. E-mail: meryeliaraujo@hotmail.com
^II Nurse. Ph.D. student of the Graduate Program in Nursing, Federal University of Paraíba. João Pessoa, Paraíba, Brazil. E-mail: nessanobregam@hotmail.com
^III Physiotherapist. Master of Science in Nutrition. Professor at the University Center of João Pessoa. Paraíba, Brazil. E-mail: carlafechine@hotmail.com
^IV Physiotherapist. Professor of Physiotherapy, Federal University of Paraíba. Brazil. E-mail: isoldatorquato@ig.com.br
^V Nurse. Master of Nursing from the Federal University of Paraíba. Professor at the Higher Education Institute. João Pessoa, Paraíba. E-mail: wesley-dantas@bol.com.br
^VI Nurse. Ph.D. Professor at the Federal University of Paraíba. João Pessoa, Paraíba, Brazil. E-mail: neucollet@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2017.18331

ABSTRACT

Objective: to examine health professionals' role in care for children with cerebral palsy and their families. Method: this qualitative, descriptive study was conducted with seven relatives of children with cerebral palsy in care for more than six months at a teaching clinic in João Pessoa, Paraíba. Data were collected in March and April 2009, by semi-structured interviews, and subjected to thematic analysis. Results: strong bonding – impaired by high personnel turnover in the care team – emerged as crucial in constructing a therapeutic plan designed to empower these children's families for the process of coping and overcoming environmental difficulties. Conclusion: longitudinal care by health care personnel is of prime importance, because the family needs professional support in order to meet the new demands that arise from day to day, and to play its role satisfactorily and take an active role in the care process.

Keywords: Cerebral palsy; health professionals; child care;family.

INTRODUCTION

Changes have occurred in the characterization of the Brazilian epidemiological profile, with a reduction in the incidence of infectious or contagious diseases followed by an increase in the incidence of chronic or non-communicable diseases IN children and adolescents¹. Cerebral palsy (CP) is among the chronic non-transmissible diseases in childhood and adolescence, whose incidence in developing countries varies between 1.5 and 2.5/1000 live births².

CP is a disabling syndrome, associated with the motor, sensory, coordination, regulation of muscle strength, motor learning that depends largely on the location of the brain injury³. This clinical condition has different types of dependence, reflecting in the family environment.

In this context as members of the articulated and resolute social support network, the health professionals should create strategies that ensure extended and non-disease focused care for the better development of the child⁴. For this work, the need for multi-professional integration is necessary to contribute to the broader view and favor the identification of the demands of child and family care.

Thus, the question is: how do health professionals act in the care of the family and the child with CP? Therefore, this research aimed to analyze the attention of health professionals in the care of the family and the child with cerebral palsy.

This research shows the importance of a multi-professional team in health care and may subsidize future actions to improve support for the family and the child with CP.

LITERATURE REVIEW

Multi-professional care of people with chronic diseases, in which knowledge and practices are shared through the development of articulated work among several professionals to build more effective strategies for this care ⁵.

Also, sharing responsibilities between the family and the multi-professional team, with follow-up and guidance to the family members to better understand the therapeutic process of children with CP is paramount. By opening space for sharing responsibilities, it is possible for the family to participate safely in the decision-making process regarding the child's treatment behavior, contributing to participatory care.

It is understood the importance of establishing this relationship between family and health professionals a therapeutic relationship is established that assists in the therapeutic project⁶ through the creation of a channel of trust and bonding. Thus, as part of the family social support network, health professionals need to create sensitive listening space to understand the context of the family and the relationships among its members, identifying needs and alternatives to solve problems. This support is often demonstrated by being together with the family, being available to help with child care, promoting listening and understanding of fears, distress, and even financial support^1-7.

MATERIAL AND METHOD

This is a qualitative research of a descriptive type carried out at the home of relatives of children attended at a school clinic of a university center in the municipality of João Pessoa- PB. Seven family members of children with CP, randomly selected between March and April 2009, participated in the study according to the following inclusion criteria: being family member and/or responsible for the child with CP; children attended for more than six months in the clinic under study; and the relative accepting that the interview was conducted at the children's home. As exclusion criteria for the family, there were the communication difficulties and living in another municipality or rural area.

The technique of data collection was the semi-structured interview triggered by the guiding question: How is the health professional acting in the care of their children with CP and their family? The audio was recorded after the participants' permission.

The conclusion of the data collection was the saturation of data, analyzed based on the principles of thematic interpretation, according to the following steps: ordering, classification of data and final analysis ⁸.

The first stage called data ordering, encompassed the set of interviews and it was constituted by the transcription of the recording; rereading the material; organization of the reports in a particular order. In the second stage, the initial organization of the findings was performed, grouping the data from exhaustive and repeated readings of the reports. Finally, a corpus of communication was established, prioritizing the relevant themes, according to the object of study. In the last stage, the actual analysis of the empirical material produced was carried out, culminating in the construction of the following thematic categories: aspects that influence the care of the professionals to the child; and multi-professional team in the parenting empathy for child care.

In the presentation of the results, the letter E was used to identify the interviewee, followed by the number representing the sequence of interviews.

In compliance with the provisions of Resolution 466/12 of the National Health Council, the project was submitted to the Ethics Committee with approval under protocol 0588/08. The participants signed the Informed Consent Term.

RESULTS AND DISCUSSION

Seven families of children with CP participated in the study, whose interviewees were represented by six mothers and one father. The ages of the participants ranged from 32 to 45 years old, all were married and four had completed High School, two had incomplete High School, and one had incomplete Elementary School. Among the interviewees, four of them did not work outside the home due to child care demands. The family income ranged from R$ 800.00 to R$ 2,500.00 and five of these families received the benefit of the Federal Government granted to families of children with chronic illness, at the time R$ 465.00, being included in total family income. All the interviewees reported that the family's transportation was the car, three of which used a car provided by the city hall and four of them used their car.

Aspects that influence the attention of professionals to the child

The family members of the study highlighted aspects that could contribute to the reflection of the health professionals about their performance in the therapeutic project of children with CP.

Caregivers emphasized that some professionals have proved to be true friends:

There are some of them [health professionals] who help us even out of work. It was very important that trust they (professionals) passed me. They made me quieter and safer to do the care at home (E5).

Narrowing relationships contributes to the formation of strong bonds with families of children with CP and it is a relevant aspect to empower them in the process of overcoming difficulties and adapting to the therapeutic project. The importance of respect and appreciation of the other in the care of these children was evidenced. When the relationships of empathy and bond between professionals and child/family happen, the whole process is favored.

However, a study on the guiding principles of the Integral Model of Family and Community Health from the perspective of the patients pointed out fragilities in these relational aspects with repercussion on shared responsibility for care⁹.

Another study on the communication between health workers and patients in the care of children under two years old, in the context of a family health unit, also points to gaps in the scope of listening and speech emission by some health workers. This can compromise trust and prevent the opening of communicative channels to a dialogic relationship, reinforcing workers' power relationships¹⁰.

Dialogical relationships between the patient and the professional, the capacity to commit to the real conditions of the family, the possibility of establishing exchanges and be inserted into the reality of the families constitute essential conditions for the formation of a bond between them ¹¹.

The establishment of the link between professionals, child and staff are paramount for the child care, but it was hampered by the constant exchange of academics, each semester, in the clinic school where they are attended:

There is a semester which is better, it depends on the trainee [...]. Vacations also break the treatment a lot. And when the semester comes back, it's someone else to attend. (E2)

The bad thing is that we get so attached [to the students] and every semester changes and in some cases, they go very far, they are trainees [of a school clinic]. (E3)

Maintaining and strengthening the link between the multi-professional team and the family is the basis of longitudinal care. Studies highlight the relevance of the link between the team and the patient for the effectiveness of the singular therapeutic project, as well as defining the roles of the health team, the fixed time reservation for the project, and a collective space to think about new proposals, requiring to that end, changes in health practices^9,12.

In this perspective, communication among health professionals is essential in the process of integrated and complementary care to share responsibilities, with the establishment and negotiation of actions and responsibilities among the members of the team and in solidarity ⁵.

In this research, one of the difficulties experienced was the constant exchange of professionals, a factor that also interfered with the care offered, since the work of the team needs to be taken up with each professional substitution. The family has the impression that care has resumed due to the need to establish new links and observation of interference in the evolutionary process of children with CP.

From this point of view, the importance of longitudinal and continuous care is emphasized, with no breakdown of bonds and effective approximation with the family through an affective relationship for building trust in the health professional. Also, the articulation between the student-professionals-professor responsible for care in the different semesters favors the development of safe and effective care to avoid gaps that may interfere with the continuity of care.

The professional action that seeks to satisfy the needs of the patients reflects on the quality of the care offered by the health services. Research stresses that access and hosting are important aspects of care that can facilitate or hinder the formation and strengthening of the link and compromise patients´ satisfaction with the service¹³. However, it is still a challenge for the team to incorporate communicative practices and producers of meaningful dialogue that favor the reduction of asymmetry between mothers and professionals and recognize the subjectivity and the needs of those involved in care. Thus, professionals who are members of the health team are challenged to embrace the patients beyond their illness, recognizing their real needs, to promote health care in an integral way¹¹.

Multi-professional team on parents empowerment for childcare

From the evaluation process to the conduct of the course, the multi-professional health team knows the importance of family guidelines. These guidelines have a diverse and meaningful nature for the development and adaptation of the child at home.

As she sometimes got a little weak, we had to adapt the footprint according to the little body, taking it in the arm, carefully. What is certain is that we had guidelines on the best position to stay when to pick it up, how to position our body so it does not hurt. It was great if we had guidelines on how to put the child in the cart, how to bend the body [...] we would have fewer problems. (E1)

When living with this chronic condition, the family feels fearful in caring for the child, requiring the support of health professionals to guide them about the child's clinical condition, possible limitations and the necessary care. In this process, the responsibility of the professional in the elaboration of planning that contemplates actions of support and intervention, that promote the development of the child to its maximum potential, besides expanding the relationships of the families, contribute consubstantially to the quality of life and the care¹⁴.

A study carried out with the objective of describing functional priorities identified by caregivers of children with CP by the level of severity and age identified the personal care¹⁵ as the focus of care of parents of these children, in all age groups. Therefore, these families seek guidelines on care, more safely and focused on the needs of the child, but also on the social rights guaranteed in rights for this group.

Professional care aimed at empowering and maximizing the family's abilities in caring is necessary, to instrumentalize it to learn how to deal with the child in the face of physical limitations arising from CP^16,17. In this way, the fears and anxieties diminish in face of the difficulties experienced and it brings more security to the caregiver with the adoption of active posture, resulting in improvements in the quality of life for both the child and the family.

This motivation of the family is positive for adherence to treatment, a process that requires commitment from both the family and the health team. In this process, the hosting involves the professional's willingness to be present, attending to the most pressing needs, which go beyond the physical and biological aspects and involve the subjectivity inherent to the human and motivate the continuity of the therapy¹⁸.

It is necessary to think about family-centered care to motivate it. A study with mothers of children with CP emphasizes that the therapeutic routine generates physical, financial and emotional overload, and it can affect the quality of life of the primary caretaker mother, hindering a continuing care. Also, it related the therapeutic abandonment to the financial difficulties; dissatisfaction with the techniques and with the relationship with the professional¹⁹.

As families know the importance of the therapy to intervene in physical aspects, they value guidelines of this nature:

Well, professionals, today are teaching me how to do and I have been looking for a lot of help adapting G. [child] because as I do not know some things I have to seek help from these people. (E3)

I was instructed to place the ankle-foot orthosis, which improves the position of the foot and inhibits the reflex of plantar grasping helping the gait, the importance of staying at home; to make the movements; the position of sitting, lying down. (E4)

He has begun to guide how to improve the development at home, such as food. Since then, she went to the physiotherapy, getting more stiff, taking the hunchback, getting right, started to crawl, everything late. At the age of two and a half, he started walking (E6).

By sharing information about the clinical condition of the child, the health professional mitigates the impact of the diagnosis, reducing uncertainties regarding the prognosis of the disease and contributing to the improvement of family care²⁰. This information should be offered in simple and accessible language, as positive or negative expectations about the child's prognosis may be influenced by the understanding of the information received and may prejudice the availability of specialized resources²¹.

When enlightened and sufficiently oriented about the child's clinical condition and how to help him, the family will feel more secure, comfortable and empowered, seeking different ways to handle the child, providing the necessary stimulus for their motor and developmental progress to the child reaching his full potential²².

However, caring for a child with a CP goes beyond technical guidelines. It involves understanding the meanings of the experiences over time, adding scientific technical knowledge to the momentary significations of the human beings in need of care and attention²³.

The members of the multi-professional team should understand that "care production needs to be geared towards strengthening family competencies and producing a partnership relationship"^24:7, contemplating intersubjectivity and flexibility in their role. In addition to technical competence, the professionals need to develop an empathic relationship with the child and his family, offering individualized attention and integral care.

In this process, home visits are important because they facilitate the rapprochement between professionals and patients, favoring the formation of bonds, creating spaces for listening, dialogue and welcoming, valuing the singularities of each family¹⁶.

Thinking about the singularities and the proactivity of the family is extremely important for the provision of professional guidance since it is not always able to follow them integrally.

I do some stretching, but it's not always. I do not, sometimes because I do not know how to do it. I see and I think I know, but when I go home I see that it is very difficult. (E2)

When guiding the families, the health professional must evaluate the comprehension of the message so they do not receive too much information without the possibility and the necessary skills to perform them at home ²³.

Emphasizing the importance of continuity of treatment at home does not mean that the family should reproduce the physical exercises for the development of the child's motor skills. However, it is necessary to use good common sense and popular knowledge so together, professionals and family seek an educational practice, respecting and valuing the cultural universe of family care, and negotiating new strategies to care.

Families of children with CP understand that without the continuity of care at home they will not achieve significant advances:

I always think of her well-being, so I always try to do everything. Even because they have told me that the merit is the people at home, because we come to physiotherapy half an hour ago, an hour and the rest we have to continue at home. (E4)

The exchange of information and knowledge between professionals and the family, together seeking the complementarity of treatment, contributes to a significant evolution of the motor skills acquired by the child. Thus, the family will know how to deal with the child with their special needs and will be prepared to face the daily challenges of caring for the child with CP²³.

The treatment routine requires dedication of the caregiver who, as a result of the accumulation of daily activities with the family and with the child, has difficulty in giving continuity of care at home:

At the beginning I did a lot of the exercises, but then the responsibilities were increased, the treatments were reduced [the exercises at home], due to lack of time. Many times I tried to do visual stimulation, but sometimes I was sadder because I did the stimulation and I thought he did not see it and it was bad for me to do that stimulation because I was sure that he did not see and I suffered more than him at that moment. (E3)

I will not say that I do it every day because sometimes I am lack of time. That is why I think of leaving work because in the afternoon I am not there and wanted to stay with him [...]. (E5)

Some things I do, but the time is very long, but especially with putting him sitting, lying, in moving him. (E7)

Also, the routine that caregivers of children with CP are exposed can trigger anxiety and depression. Facing difficulties with adequate transportation for medical consultations, hospitals, among others, potentiate stress and make home care difficult²⁵. A study with mothers of children with neurological diseases identified a higher incidence of anxiety and stress, due to overload in care²⁶.

In this perspective, family-centered care better meets the needs of families and children with CP. Parents' knowledge must be valued because they recognize the needs of their children, and professionals act as collaborators and co-responsible in the rehabilitation process²⁷ .

In this context, the relevant role of the multi-professional team in the care of children with CP is highlighted, through the development of integrated and shared actions with the family, and the planning of strategies that contribute to the empowerment of the family to care for the child. On the other hand, when the family feels insecure and without support from health professionals, it can be discouraged to develop active posture, accentuating the losses in the child's evolution.

CONCLUSION

The longitudinal and continuous care of health professionals, with an appreciation of the singularities of each child and the family context, narrows relationships and strengthens the bond with the family, favoring a shared and comprehensive care process are important to follow up the child with CP. Thus, when knowing the biopsychosocial context of children with CP and their families, professionals will be able to structure a unique therapeutic project.

In this sense, it is recognized the importance of an extended professional assistance that can deal not only with the child with CP but with interventions with the family, ensuring well-being, quality of life and continuous support.

More than mere transmission or transfer of information, professionals should work towards the exchange of knowledge with the families of children with CP, aiming at the reciprocalization and empowerment of the family for care, and assertive choices for a better quality life.

As limitations, this study was performed in only one service of care for children with CP and evaluated only the perspective of the family, requiring research that also contemplate the positioning of health professionals.

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