Abstract

Summary:A community-academic partnership among a patient-advocacy organization, school of nursing, and pediatric hospital was developed to address issues of obesity in adolescents with spina bifida (SB). The partnership organized focus groups to gather preliminary qualitative information from adolescents and young adults, ages 14-21, with SB and their parents regarding perceptions and attitudes toward obesity, diet, and lack of mobility to identify areas for future intervention.. Interviewers asked participants to think about specific events in their life that were relevant to the issue in question (eg, risks associated with being overweight, access to fresh fruits and vegetables, ability to participate in physical activity). The participants described things that came to mind (fears, frustrations, uncertainties, and barriers). The focus groups indicated that body composition, preventive health practices, and access to physical activity were of concern. Participant input provided critical guidance to identify needs and to guide development of the next phase of a targeted program to address the issue of obesity in youth with SB.
Keywords: Adolescent, community based participatory research participatory medicine, patient-advocacy organization, patient-centered outcomes, spina bifida.
Citation: Bush RA, Pérez A, Connelly CD, Jorquera E, Leveque NL, Chiang GJ. Community-academic partnership: identifying patient perceptions related to obesity in a spina bifida population. J Participat Med. 2016 May 4; 8:e6.
Published: May 4, 2016.
Funding Source: This project was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-Proposal Award, administered on behalf of PCORI by Colorado Foundation for Public Health and the Environment. The content is solely the responsibility of the authors and does not necessarily represent the official views of PCORI or the Colorado Foundation for Public Health and the Environment.
Competing Interests: The authors have declared that no competing interests exist.

Introduction

Community Based Participatory Research (CBPR) guided this project. As defined by the US Agency for Healthcare Research and Quality, CBPR is “a collaborative research approach designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.” Within Latino populations, CBPR has been shown to help build researcher capacity to co-create culturally responsive research questions.[1][2][3] During the fall of 2013, parents in Spina Bifida San Diego (SBSD) expressed their concern about their children’s weight, which initiated the development of a pilot study to examine patient and parent concerns about adolescent children’s obesity. When presented with the model of participatory research to explore possible causes and potential remediation, stakeholders (SBSD, research scientists, physicians, advanced practice nurses, and social workers) embraced the project idea. Our innovative project incorporated participatory methods and community engagement throughout conceptualization, planning, development, and conducting the focus groups. This concept was able to incorporate a recently established adolescent support group, aimed at helping adolescents begin to navigate the transition from pediatric to adult health care. The purpose of this paper is to present the feasibility and acceptability of a participatory method to address health issues associated with SB as well as to disseminate findings from the focus group meetings, which is the first step in developing a community-based initiative.

Rates of obesity-related health conditions in adolescents with disabilities are dramatically higher than the acknowledged high prevalence rates among normally developing United States adolescents. For individuals with SB, their lack of ambulatory status results in being at significant risk for becoming overweight. Working with patients to identify common health practices that predispose and reinforce obesity as well as to discover appropriate, and acceptable ways to reduce and prevent obesity would be welcome outcomes.

Background

Spina bifida (SB) is one of the most common complex congenital abnormalities compatible with life, and is one of the most common causes of serious locomotor disability in children, causing reduced lean body mass in the lower extremities, lower extremity muscle weakness or paralysis, and bladder and bowel dysfunction. [4][5] In addition to possible physical limitations, reduced lean body mass associated with the condition results in reduced energy expenditure, which contributes to obesity. [6][7] The life expectancy of people with SB has increased and is considered a nonprogressive condition. [8] This creates new challenges for the care and treatment of SB, and a new focus on the promotion of health education on issues such as weight management. [5]

Obesity rates in adults with SB are higher than the general population. [9] The prevalence of obesity in youth with SB has been estimated between 28%-50% in children, and 34%-64% in young people. [9] Cross-sectional studies of persons with SB indicate that the incidence of obesity increases with age. [9] More than 50% of children and adolescents with SB are at risk of obesity and most may become obese adults. [10] Their risk of developing obesity, limited mobility and physical activity, and secondary consequences of extreme muscle loss, pain, and pressure sores all make them less likely to engage in everyday activities. [5] [6]

Lower levels of health related quality of life (HRQL), including health, social participation, satisfaction with functioning, and mental and cognitive functioning have all been demonstrated in obese children and adolescents. [8] [11] Chronic diseases also reduce quality of life. Adolescents with chronic diseases are at greater risk of lower self-perceived quality of life. This is because of problems with adjusting socially, feelings of low self-worth, [11] and depression due to limited mobility and difficulties achieving independence. Children and adolescents with SB and who are obese, have significantly lower perceived quality of life than obese children without mobility impairments. [11]

Obesity in the population with SB is a multifactorial issue depending on reduced physical activity, excessive food intake, poor diet, and barriers to physical activity. Early prevention programs and health education regarding nutrition and exercise should be implemented by physicians to promote healthy body weight and prevent obesity. [6] Physicians should strive to improve the child’s health by doing more than just assessing for weight and growth.Working with a multidisciplinary health team is an effective way to provide health education for families and work with them to achieve a healthy weight management program. [5]

Encouraged by patient and parent feedback, the partnership designed the study presented here to learn about adolescents’ (and their parents’) perceptions of obesity, diet, and physical activity among a sample of primarily Latino participants. With this information, the partnership wishes to describe adolescent and parental perspectives and their understanding of obesity; experience with nutrition choices; and attitudes toward lifestyle intervention. We believe that this will help set the stage for the next phase of a well-designed intervention.

Methods

The community-academic partnership was formalized over a period of months and was a mixed group of advocacy, clinical, and academic positions representing patient advocacy, pediatric surgery, nursing, social work, and epidemiology. Partnership activities included identifying relevant stakeholders, reviewing relevant literature, and preparing focus group questions.

In spring, 2014, the Partnership recruited participants from a group of parents and patients who had previously participated in Rady Children’s Hospital San Diego Spina Bifida Clinic and who had already indicated their interest in being contacted for research. Participants were told the purpose of the focus group was to gain a better understanding of the experiences, emotions, and feelings of adolescents regarding physical activity and healthy eating. Two focus groups were held, scheduled for the participants’ convenience and a total of seven adolescents and seven parents participated. A demographic form was completed prior to beginning the discussion. All study procedures, including protocols for recruiting participants and obtaining informed consent were reviewed and approved by the appropriate administrative and university Institutional Review Boards for the protection of human subjects prior to study initiation. All participants gave written informed consent prior to participation in focus groups. The focus groups were held in conference rooms at the medical center and lasted approximately 60 minutes.

Design

The Partnership, along with a bilingual Spanish speaking research associate, conducted an adolescent focus group (N = 7) and a parent focus group (N = 7). Interviewers asked participants to think about specific events in their life that were relevant to the issue in question (eg, risks associated with being overweight, access to fresh fruits and vegetables, ability to participate in physical activity). The participants described things that came to mind (fears, frustrations, uncertainties, and barriers).

The adolescent focus group was conducted in English. The parents’ focus group was conducted in Spanish; bilingual, bicultural members of the research team facilitated group discussion using a qualitative semi-structured focus group interview guide, with follow-up questions based on the participants’ answers. The interview guide for the adolescents included questions about their experiences with weight issues, diet, exercise, healthy eating habits, obesity and its possible consequences, emotional, social, and psychological issues, and future possible areas of exploration and research. The interview guide for the parents included questions about the parents’ perceptions of their child’s weight issues, diet, exercise, healthy eating habits, obesity and its possible consequences, emotional, social, psychological issues, their role as parent, and future possible areas of exploration and research. The group moderator addressed questions to participants who did not initially volunteer responses, reducing the tendency of more vocal participants to dominate the discussion and skew the results.

Focus groups were audio recorded, transcribed and analyzed for theme identification. First, the audio recorded parent focus group was translated and transcribed from Spanish into English by a bilingual/bicultural transcriptionist who was not present at the focus group sessions. Transcriptions were compared by the author with the audio recordings. The English transcripts were coded in two passes using a grounded theory framework, [12] allowing for common themes to be extracted. The three related themes that emerged were: Risk of Obesity and Importance of Physical Activity; Barriers to Healthy Living; and Emotional Stressors and Body Image.

Results

Participants were on average 18 years of age (range 14 –20 years) and their parents were 42.9 years of age (range 39 – 60 years). Two participants were male and one parent was male. Both focus groups offered insightful responses to the questions and indicated body composition, preventive health practices, and access to physical activity are of concern in both groups.
Adolescents and parents expressed strong feelings about the need for exercise, awareness of the negative impact of obesity, the challenges of incorporating and following healthy practices, and the impact of culture in addition to physical limitations on healthy living.

Risk of Obesity and Importance of Physical Activity

Both focus groups reported their awareness of the importance of having healthy habits and exercising in order to reduce risks of developing obesity. The majority of the parents stated they had a family medical history of cardiovascular problems and diabetes, and were aware and concerned that weight issues and low physical activity are some factors that had led to these diseases. Adolescents acknowledged the health risks related to obesity, but were more concerned about body image issues and the physical limitations caused by obesity. There were gender differences in how adolescents viewed weight issues and physical activity. Adolescent boys stated that they exercised every day at the gym, lifting weights, in order to stay fit and strong and played wheelchair basketball three times a week. Adolescent girls on the other hand, did not have a specific exercise regimen plan and were more concerned about their physical appearance including concerns about having a large ribcage, large hip areas, and skinny legs because of being in a wheelchair for so long. Female physical engagement included exercising at home while playing a tennis video game requiring them to move their arms, using their wheelchair around school all day, occasionally playing wheelchair basketball, and if they are able, walking 30 minutes a day.

All of the parents in the focus group have been told by their child’s physician they are overweight. Parents stated they agree with their children’s doctor and believe their children are overweight or have weight issues resulting in a reduction in their children’s ability to move and do physical exercises. The parents acknowledge that their primary physicians have formed a multidisciplinary group of people, including nutritionists who create a meal plan for patients and teach them about food portion control and caloric intake, as well as physical therapists who create an exercise plan to help the adolescents gain more mobility and be more active.

Barriers to Healthy Living

Even though these health plans are created and patients are sent home with a series of instructions to follow every day, parents cannot seem to get their children to follow the diet or exercise plan. Some parents feel their children are not interested in exercising. Several mothers stated they think their daughters prefer to watch television, use the computer, or sleep rather than exercise. Another mother said that her daughter can walk using her crutches, but she would rather use her wheelchair because she feels safer and can move freely around school or home. Several parents shared the fears and insecurities their children experience when moving around school or home, and the different experiences of using crutches or automatic wheelchair. Recovering from surgeries can also have a negative effect on mobility and, eventually, weight. Some of the patients gain weight and this affects their ability to move more freely; other children lose weight that weakens their muscles and limits their mobility. The pain and discomfort they experience as a side effect of the surgeries, limits their ability to practice any physical exercise or makes them fearful of hurting themselves while engaging in any exercise.

When asked about the possibility of limiting their children’s television time to less than two hours a day, most parents answered that they “would probably try it” but they were not hopeful about it. Some of the parents ask their children to exercise with them, go to the pool or to the gym, but none of their children agree to do this. Some children have attended adaptive exercise programs and, according to the parents, it was very helpful in getting the adolescents involved in the importance of being active and making healthier food choices. Much of the adolescent feedback was about how much they enjoyed wheelchair basketball as a physical and social activity. They expressed positive interactions and relationships that extended beyond the basketball court. Adolescents and their parents agree that having more available classes and flexible schedules for sports and recreational activities will increase their exercise levels, as well as social interactions. Social interactions are crucial in staying active and engaged in community events. The adolescents discussed getting to know other peers with SB, sticking to a healthy exercise regimen while having fun at the same time and supporting each other, especially new members of the SB community who might be emotionally distressed over their physical limitations.

Although both parents and teens could provide examples of successful activities, most were not currently actively involved. Both groups agreed there is a problem with having access to more group adaptive physical activities and adaptive exercise programs in the community. Transportation and financial issues play an important role in accessing these groups to the majority of families. In the past an advocacy group was able to provide grants or subsidize the cost of the activities, but now, without financial support it was too difficult. Many of the teens do not drive and asking a driving sibling or parent to take them to a sporting activity, on top of “must do” activities such as medical appointments and school, was not a possibility. The challenge of taking public transportation, especially with a wheelchair, was too great a barrier to attending an activity. One teen suggested, “If I had lots of money, I would call Uber to get a ride.” There was general consensus it would be great to be able to just call Uber or another ride-sharing service.

In regards to diet and nutrition, adolescents stated they do not think they need to learn more about portion controls or diets. They have already heard from nutritionists and, thus, believe that it is no longer helpful. Adolescents have the perception that they already eat healthy diets and there is no need to learn about numbers and food portions from nutritionists. They believe healthy habits are learned at home, and they all agree that their mothers cook healthy food. Parents believe that they cook healthy meals for their children, but sometimes issues arise with portion control. One mother stated, “my daughter likes to eat a lot and will not accept ‘no’ for an answer when she asks for another plate of food.” Parents have tried serving their children smaller food portions than what is suggested, in order to be able to give them a second portion that will satisfy them without overeating. Along with portion controls, parents have tried to reduce their children’s sugar intake but state that they do not believe they been successful.

Another issue parents’ face is what their children eat outside their home. Most of the parents work and are not able to watch what their children eat at school or at home. They are aware their children probably make unhealthy food choices. They will send them healthy lunches and most of the time their children will bring them back intact or would have traded them for junk food such as candy or potato chips. Some adolescents think they can eat whatever they want but with moderation. They believe they already eat healthy at home and can sometimes have unhealthy treats, as long as they exercise or engage in some physical activity that can reduce the calories they have eaten.

Cultural issues were also discussed by the parents’ focus group. They stated they feel the need, in order to keep their culture alive while living in the United States, to cook traditional dishes from their country of origin. This presents a problem because they believe this food, such as flour tortillas, refried beans and rice, are high in calories and fat. Some suggestions offered by other members of the focus group included reducing the salt content and changing the type of oil food is cooked with. Moderation is a key element in weight management as well as reducing, and preventing obesity amongst adolescents with SB.

Emotional Stressors and Body Image

Emotional stressors discussed by both groups were related to body image and low self-esteem amongst girls. These can lead to depression and anxiety in addition to physical limitations amongst boys. According to the parents, some of the girls avoid social interactions or situations because they are ashamed of some parts of their body and, thus, do not wish to be around other people. Girls stated that they think about their weight every day, about how they look in the mirror, and how their clothes fit. They also ruminate about how they try so hard to lose weight but, because of their large ribcage, they believe they will never look “skinny”. Boys’ emotional stressors were related to the inability to move around and the presence of any physical limitations. Adolescent boys suggested that emotional support is needed especially when they are new to the group, have recently suffered an accident, or were now in a wheelchair. They stated that these new patients often feel that their life has ended and that they are not going to be able to do anything anymore. Thus, they need the additional support to accept their current situation.

Emotional eating was also discussed as a possible factor that can contribute to weight issues and obesity. Having stressful situations at school, at home or with friends can lead to feelings of anxiety or depression which may lead adolescents to choose unhealthy food alternatives; they eat more junk food, described by one mother as “comfort food” such as candies, cookies, sugary drinks or potato chips. For parents, it is important to not only focus on nutrition, but also on their childrens’ mental state and emotional wellbeing.

Discussion

This was the initial phase in developing a community-based collaborative care model designed to facilitate patient involvement and patient selection of meaningful lifestyle improvement outcomes. Participants of all ages were familiar with and conversant about nutrition, barriers to physical activity, and body image. They viewed these related issues as affecting not only their lives (or their children’s’ lives) but also those of the greater SB community.

Many participants had been exposed to considerable intervention from nutritional experts and physical therapists in providing an individualized, adaptive approach to eating and exercising. All of the parents in this focus group had been told by their child’s physician their child was overweight. The parents focused on their children not following their advice. The teens focused on not having the transportation needed. Thus, it is clear that providing targeted counseling alone would not result in a successful intervention. This research identified further barriers of access to programs, transportation, cost, and concern about vulnerability on crutches as additional obstacles.

Both groups indicated that perceived physical appearance is related to self-image. The role of self-esteem and its impact on daily living within this population needs more investigation. These focus groups provided needed information about the way those with SB and their families think about body weight, food, and physical activity. But more work is needed to understand the themes that emerged and to discover the ways in which these experiences interact.

The findings from this investigation provide initial data on the experiences and perceptions of a sample of primarily Latinos with SB and their parents. While these findings cannot be generalized to all Latinos with SB, the findings launch an important, community-based program to investigate perception, knowledge of, and perceived barriers to healthy lifestyle among teenagers with a chronic condition resulting in physical limitations. We hope that these findings will guide development of the next phase of a targeted program to address the issue of obesity in youth with spina bifida.

References

1. Connelly CD, Baker-Ericzen MJ, Hazen AL, Landsverk J, Horwitz SM. A model for maternal depression. J Womens Health (Larchmt). 2010 Sep;19(9):1747-57. doi: 10.1089/jwh.2009.1823. ↩
2. Foster J, Chiang F, Hillard RC, Hall P, Heath A. Team Process in Community-Based Participatory Research on Maternity Care in the Dominican Republic. Nurs Inq. 2010 December; 17(4): 309–316. ↩
3. McQuiston C, Parrado EA, Martinez AP, & Uribe L. Community-based participatory research with Latino community members: horizonte Latino. J Prof Nurs. 2005 Jul-Aug;21(4):210-5. ↩
4. Liptak G. What is Spina Bifida? Arlington, VA: Spina Bifida Association; 2014. Available at: http://spinabifidaassociation.org/what-is-sb/. Accessed February 13, 2016. ↩
5. McPherson AC, Swift JA, Yung E, Lyons J, Church P. The assessment of weight status in children and young people attending a spina bifida outpatient clinic: a retrospective medical record review. Disabil Rehabil. 2013;35(25):2123-31. PMID: 23510013 ↩
6. Liusuwan RA, Widman LM, Abresch RT, Styne DM, McDonald CM. Body composition and resting energy expenditure in patients aged 11 to 21 years with spinal cord dysfunction compared to controls: comparisons and relationships among the groups. J Spinal Cord Med. 2007;30(Suppl1):S105-S111. PMID: 17874695 ↩
7. Nelson MD, Widman LM, Abresch RT, et al. Metabolic syndrome in adolescents with spinal cord dysfunction. J Spinal Cord Med. 2007;30(1):S127–S139. PMID: 17874698 ↩
8. Verhoef M, Post MM, Barf HA, Van Asbeck F, Gooskens, RM, Prevo AH. Perceived health in young adults with spina bifida. Dev Med Child Neurol. 2007;49(3):192–197. PMID: 17355475 ↩
9. Dosa NP, Foley JT, Eckrich M, Woodall-Ruff D, Liptak GS. Obesity across the lifespan among persons with spina bifida. Disabil Rehabil. 2009;31:914–20. PMID: 19037774 ↩
10. Roberts D, Shepherd RW, Shepherd K. Anthropometry and obesity in myelomeningocele. J Paediatr Child Health. 1991 Apr;27(2):83-90. PMID: 1883655 ↩
11. Abresch RT, McDonald DA, Widman LM, McGinnis K, Hickey KJ. Impact of spinal cord dysfunction and obesity on the health-related quality of life of children and adolescents. J Spinal Cord Med. 2007;30(Suppl1):S112-8. PMID: 17874696 ↩
12. Miles, M., Huberman, M. An Expanded Sourcebook: Qualitative Data Analysis. 2nd ed. Thousand Oaks, CA: Sage Publications; 1994. ↩

Copyright: © 2016 Ruth A Bush, Alexa Pérez, Cynthia D. Connelly, Erika Jorquera, Noelle Lipkin Leveque, and George J. Chiang. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.