Should we empower the family?

When I first began working with children with brain injury in the 1970s, the compartmentalization of care was the prevailing, acceptable approach to rehabilitation. Basically, this meant that the parents would drop off their children for “treatment”; the professionals would “rehabilitate” them, often in a manner that did not yet contemplate transdisciplinary teamwork; the children would reap the benefits of this professional attention, scheduled into blocks of time removed from their everyday lives; and were then returned, after this extra-contextual “intervention”, to their families and daily routines. These families, who mostly left or idled in waiting rooms, were not included in the important task of contributing to their child's development. Nor were they informed or trained in what to do, how or why. Consequently they continued with normal family habits and/or management of the child that may have unwittingly reinforced maladaptive physical or behavioral states, thereby undoing or at least limiting the effectiveness of the professional therapy. The very individuals who knew the child best–what he/she liked and disliked, what a gesture or sound meant, when each tentative milestone had been attained–were kept from participating in the process that aimed at restoring wholeness and function, a process that is today called developmental neurorehabilitation.

Time has passed, and we are now entering a new era of neurorehabilitation. Children with neurodevelopmental disorders are beginning to have more access to a wide range of treatment approaches and methods of care. Socioeconomic and cultural realities often dictate variations in how neurorehabilitation is conducted in a given country or in specific circumstances. I will not explore these myriad means of conducting neurorehabilitation; I will instead talk about the family and a few principles that are applicable independently of national, cultural, financial and educational backgrounds. What I will address is the humanization and family-based, context-sensitive rehabilitation of the child.

When a child suffers a brain injury, an extraordinary sequence of events unfolds, with wide-ranging and often bewildering consequences. Usually, neither the child nor his/her family are prepared to manage the ensuing changes and must reach out to professionals for guidance and support. The professional team is essential in establishing the beginning of a process that can last years or even a lifetime. The pathways that lead each professional beyond the mere application of techniques to an increased understanding of a child's needs and condition vary widely.

I began working at the SARAH Network of Rehabilitation Hospitals when it was still a small center dedicated, among other things, to rehabilitating children with brain injury. I led a team of young professionals, and we had a sense of wanting to provide better and more comprehensive care to the children we treated. I saw how much the families were eager for information about what to do with their child, how to help him/her, and how curious they were about what we did “behind the gates” of the rehab facilities. But, at first, we did not invite them to join in the process.

With time, however, we started to call the parents in for group sessions with the goal of getting them to voice their concerns and questions. In these meetings a barrage of information about each child was offered–information that we could use in their rehabilitation, with surprisingly good results. All the professionals involved in treating a child were present at these meetings–psychologists, physical therapists, physicians, speech therapists, educators; we began to consolidate our work in a way that heightened available resources and made use of the family's involvement.

We began to teach these families some of the exercises that we did with their children. Then came the drawings of those exercises, which we designed to serve as simple visual reminders of these steps, until we had created individual booklets with the specific activities that they could do with their child, at home. Parent training and support group meetings were organized, as well as information groups. A pair of case managers was chosen from the transdisciplinary team and assigned to each child; they acted as the liaisons between the rest of the team and the family. An entire methodology was forged over the years, and took into account the need to include the family, the importance of respecting each child's specific context, and the unassailable tenet that aimed at the maximum humanization of treatment.

The fact that the activities were conducted at home, rather than an unfamiliar environment contributed to greater efficiency and compliance with the program. It was also important that they were based on the child's daily life, his/her interests and family setting, and were designed to include important aspects of that child's reality. Children responded to the program with greater functional gains and better overall outcomes. We aimed to make the child/family's environment as therapeutic as possible.

This became the family-training methodology that we use at SARAH to this day. We went on to conduct an RTC study to explore–and prove–the results that we were seeing in our day-to-day work [1]. A textbook and CD-ROM followed, in response to the feedback and requests that came after the initial publication and series of presentations [2]. As a consequence, the use of this approach spread to other countries and cultures.

My clinical experience has contributed to the understanding of the fundamental importance of a humanized, context-sensitive approach to securing the successful rehabilitation and improved quality of life of the child with brain injury and his/her family. Among what has become clear in this field today is the value of empowering the family. There is a wealth of experience and insight that parents and siblings can contribute about the child with brain injury; after all, as primary caregivers, they are also the primary purveyors of the child's development and growth. Involving them in the process of rehabilitation fosters a sense of control and contributes towards eliminating the negative influence of powerlessness. Studies have shown that, irrespective of their educational levels, parents are capable of conducting neurodevelopmental exercises at home with their child, with the prior training and guidance from a professional team [1],[3],[4].

Secondly, there is abundant evidence that setting realistic goals and tailoring a child's rehabilitation program to his/her individual context, developmental needs, personal interests, and daily routines, goes a long way towards increasing functional gains, overall outcomes, and compliance with the program [5],[6]. Instead of having a child treated exclusively by professionals, in a medical facility, rehabilitation yields better results when it is extended to the family setting, to the home, within the familiar context of the child's everyday life [4].

This context-sensitive, family-based approach also brings associated benefits for the parents and family. It helps reduce their stress and anxiety, bolsters their confidence and competence in their own skills, resulting in important benefits to their mental health; this also benefits the injured child and his/her siblings. In other words, having the family as an ally and active participant in the neurorehabilitation of the child makes for improved family dynamics and quality of life. Not only does it foster more effective interactions and interventions, it also makes it easier to cope with and manage further problems that arise, for example, during development.

The humanization of rehabilitation is something that must concern all of us, regardless of where we live and what society we belong to. Empowered families can contribute substantially to this process. After all, no healthcare system is perfect to the point of fully attending to the needs of children with brain injury. More must be done; we must do more.