Author:Malheiro, Maria Isabel Dias Da Costa


Technological advances and the increasing development in pediatric medicine have improved survival but contributed to an increase in child morbidity. Consequently, a significant number of children have special healthcare needs, which include spina bifida patients.

Spina Bifida (SB) is a complex congenital condition which causes sensory-motor, orthopedic disorders, 95% present neurogenic bladder and bowel dysfunction (incontinence) (Malheiro, 2005).

The number of children with SB who survived reaching adulthood has significantly increased from 20% in the fifties to 90% in the eighties (Antolovich & Wray, 2008). These children are confronted with the need to perform daily very complex tasks such as intermittent self-catheterization every 3 hours, bowel training, monitoring the shunt malfunction (high mortality) and supervision of the skin (high incidence of pressure ulcers and wounds) (O'Mahar, Holmbeck, Jandasek & Zukerman, 2010; Sandler, 2009).

Some of the young adult development challenges are related with their search for identity and parental independence. When dealing with adolescents with Spina Bifida (SB) these challenges become particularly hard to overcome as most of them are dependent on their parents to perform daily life activities (DLA) (Peny-Dahlstrand, Ahlander, Krumlinde-Sundholm & Gosman-Hedstrom, 2009).

Literature describes how children with SB tend to depend on adults orientation for their daily life activities (Friedman, Holmbeck, DeLucia, Jandasek & Zebracki, 2009), as well as their low autonomy in decision-making to carrying out self-care tasks, especially in elimination, hygiene and transfers areas (Sawin et al., 2009; Peny-Dahlstrand & Krumlinde-Sundholm e Gosman-Hedstrom, 2012). The development of functional skills in performing DLA and self-management competences is crucial to facilitate their transition to adulthood.

Health guidelines aim to increase the responsibility of people with chronic conditions to self-care, emphasizing the importance of health professionals on their empowerment and promotion of self-management skills (WHO, 2002; Dire9&o-Geral da Saude, 2015).

Evidence suggests that psychological and educational interventions are effective and highlights its relevance in promoting self-management in chronic patient's condition (Street & Powel, 2008; Office of the regulator of community interest companies & Department for business, innovation & Skills, 2013). These programs target not only special healthcare needs, but also emotional, psychological and social issues of people with chronic conditions (Barlow & Ellard, 2004). Other benefits of these interventions include reduction in hospitalization rates and its complications and improved adherence to treatment, especially in adolescents (Wales et al., 2007).

In 2001, Kate Lorig & her collaborators were pioneers in implementing self-management programs where peers with the same disease were used as mentors. This method resulted in improved self-management behaviors in the people with chronic conditions and allowed a reduction in the financial costs of the programs, as it used only volunteer workers. In 2005, the concept of "Lay-Led" or monitors who are experts in self-management was officially introduced in the UK Health System (Lorig & Holman, 2003).

Programs using trained lay-led group interventions supervised by a healthcare professional, originated significant behavioral improvements in adherence to therapy, management of symptoms and tertiary prevention. The results were also encouraging given the observed improvement in health status and decreased use of emergency services and hospitalizations (Holman & Lorig, 2004),

Summer camps with specialized programs for children with chronic illness or disability are traditionally considered places of leisure, but are increasingly being recognized as effective settings for psycho-educational intervention (Malheiro, 2011).

In the last decades we have witnessed a significant growth of "summer camps", with many being intended for children and adolescents with special needs. These "camps" had a significantly positive impact in children with special needs in terms of functionality, independence, autonomy, problem solving competences, self-esteem and self-efficacy (Goodwin & Staples, 2005; Kiernan, Gormley & MacLachlan, 2004; Martin Iglesias, Holsey & Cummings, 2008). They are considered, by several authors, excellent places for nursing intervention on rehabilitation practice, health promotion, adherence to treatment and development of management skills and contribute towards a better quality of life for these children and youths (Malheiro, 2011).

According to the American Camp Association guidelines (2008) the main objectives of these experiments are to promote mental, physical, social and spiritual development, together with improving self-esteem and social skills. They state that these interventions are meant to promote children and young people's global independence and self-discipline in relation to their condition and their life's.

The environment on these camps promotes a unique opportunity for children with chronic illness to interact and learn. Nurses play a fundamental role on these interventions; not only they support the physical, emotional and psychological needs of these participants but also enroll in primary and tertiary prevention activities (Thomas & Gaslin 2001).

Based on existing evidence, the implementation of programs that promote self-management of a chronic conditions outside of medical facilities, may be an appropriate approach to improve adolescent's functionality (motor and cognitive) and their self-management competences.

This study aimed to evaluate a camp-based intervention with an educational program for self- management among adolescents with spina bifida. It was anticipated that the intervention would impact on adolescents' functional independence (balder and bowel emptying, hygiene, dressing, locomotion, mobility, transfers, communication, social interaction, problem solving and memory) which could improve their self-concept (self-esteem, social acceptance, romantic appeal, close friendship). In addition we explored the interaction between participants' clinical and demographic characteristics and their functional gains, from pre to post camp (T3-T1 studies).


Study Design

This is a quasi-experimental longitudinal study, with a before and after design and a 3-stage evaluation being conducted: T1 (before the start of the program), T2 (24h after the end of program) and T3 (six months later-follow up).


Participants consisted of fifty-six adolescents aged from 10 to 18 years attending a 10 days long overnight summer camp program organized by Spina Bifida Portuguese Association (ASBIHP). Summer camp activities included an adapted sports program in the afternoon and typical camp experiences at night (e.g. karaoke, bingo). All youth enrolled in the camp participated in this study.

The 7 sessions of the self-management educational program were implemented in the morning. Adolescents were grouped according to gender: Group A (girl's n=28) and Group B (boy's n=28), mean age 14.2 [+ or -] 2.8 years. The retention rate was 100% at Time 2 and 99.44% at Time 3. Demographic and baseline characteristics are summarized on Table 1.


This study was conducted in collaboration with Spina Bifida and Hydrocephalus Portuguese Association (ASBIHP).

Based on Lorig's intervention model "Expert Patients Education" (Lorig & Holman, 2003), we designed the "Educational Program for self-management on adolescents with Spina Bifida" (EPSASB). The intervention's theoretic background is grounded in the Health Beliefs Model, Theory of Planned Behavior, Transtheoretical Model of Health Behavior Change, PRECEDE-PROCEED and the Bandura (2004) Socio-Cognitive Theory concepts as self-efficacy, self-regulation and modeling.

With a team (monitors and Lay Leds) recruited through a public announcement on the ASBIHP website and by e-mail invitation sent to all last year degree students of the Nursing Bachelor degree. Lay leads and monitors attended 20, hours of theoretical and laboratory training (support manual was available).

The participants' recruitment was carried out by sending e-mail application forms to all ASBIHP members aged between 10 to 18 years. Additionally, we announced the project on social networks (ASBIHP's Facebook page and website) and all national health institutions that follow these adolescents.

Approximately 4 weeks prior to the start of the camp, participants were contacted telephonically to provide consent and to be informed of all procedures. In addition, we asked about special health care, medication and all aspects related with adolescent transportation to the camp. On the departure day all adolescents were asked to sign for consent and filled the Time 1 (T1) questionnaires (before enrolment).

At the beginning of the program each participant is given an "Individual Diary" where they daily carry out a checklist of the self-catheterization procedure and the skin inspection for pressure ulcers detection. According to Lorig (2001) this task ensures that they are performing the procedures in an appropriate way, memorizing the steps and transforming this behavior into a routine. At the end of the "Individual Diary" there is a space for the action plan registration of each session (thematic) that will take place during the program. At the end of the program, all the diaries were subjected to an evaluation by the team coordinator and monitors/Lay Led's, regarding the accomplishments in...

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