Caregiver Expectations of Family-based Pediatric Obesity Treatment Courtney Giannini, BS; Megan B. Irby, MS; Joseph A. Skelton, MD, MS Objective: To explore caregivers’ expectations of pediatric weight management prior to starting treatment. Methods: Interviews conducted with 25 purposefully selected caregivers of children, ages 8-12 years, waiting to begin 4 different weight management programs. Interviews were conducted and recorded via telephone and coded using a multistage inductive approach. Results: Caregivers listed specific motivators for seeking treatment that did not often align with clinical measures of success: caregivers perceived child’s socio-emotional
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ulti-disciplinary behavioral interventions have demonstrated efficacy for the treatment of children classified as overweight or obese.1 However, attrition from such treatment programs varies widely, as 27% to 73% of participants drop out prior to program completion.2 Present research has focused broadly on sociodemographic predictors of attrition: children with severe obesity, older adolescents, and racial/ethnic minorities.2 There is little research on more nuanced factors of family process and function that may influence attrition.2,3 One review of patients’ satisfaction with weight management shows that children and families report high satisfaction with obesity interventions.4 Thus, given the lack of variability in patient satisfaction scores, factors other than patient satisfaction are likely to be more relevant contributors of attrition. Formative work incorporating patient perspectives and expectations of impending treatment may reveal from the onset of treatment the factors responsible for high attrition, particularly as attrition occurs early in treatment.5-7 Results of this work could prove useful for guiding attrition-reduction efforts within pediatric weight management settings. Courtney Giannini, University of Cincinnati College of Medicine, Cincinnati, OH. Megan B. Irby, Research Program Manager, Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC. Joseph A. Skelton, Associate Professor, Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC Correspondence Dr Skelton; [email protected]
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health improvement to be an important success measure. Caregivers understood the program’s approach, but were unsure of the commitment required. Caregivers were confident they would complete treatment but not in being successful. Conclusions: Caregivers’ expectations of treatment success and their role in treatment may be a hindrance to adherence. Key words: qualitative; pediatric; obesity; treatment; expectations Am J Health Behav. 2015;39(4):451-460 DOI: http://dx.doi.org/10.5993/AJHB.39.4.1
As a precursor to the current study, the authors explored factors potentially linked to attrition from the perspectives of 29 obesity treatment clinicians from 6 treatment programs in North Carolina.8 These clinicians perceived that negative past experiences with obesity treatment, desire for immediate outcomes, unrealistic expectations, and lower family value of treatment all appeared to be related to higher rates of attrition among their patients. Clinicians felt that failure to achieve desired weight loss within an expected period of time reduced families’ motivation to remain in treatment; thus, many clinicians emphasized the importance of building realistic expectations with patients and families prior to beginning treatment processes. By assisting families in developing appropriate expectations for treatment and weight loss, clinicians hoped that families would be able to cope better with less-than-desirable progress. Few studies have captured the valuable perspectives of parents and children entering into obesity treatment programs.9-13 Interviewing parents and adult caregivers before treatment begins could elucidate patient and family expectations that are either discrepant from clinical treatment approaches or unrealistic. Taken in conjunction with the findings from prior work,11,12,14 including our previous study,8 a more comprehensive understanding of family expectations may prove valuable for enhancing patient-centered care and improving retention. Parent motivation, too, is of great importance in behavior change, as it facilitates attendance in treatment and change within the home. Gaining
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Table 1 Semi-structured Interview Guide, Mapped by Domain, with Sample Items Child’s Health and Weight
Tell me about your child’s health
Motivation
Why has your family chosen to begin a weight management program? What is the most important reason you and your family are joining this program? Describe to me why your goals are valuable or important to your family.
Knowledge/expectations/ feelings about program
Tell me about the program you will be starting and what will be involved. Describe to me your feelings beginning this program/clinic. Describe to me your child’s feelings about participating in this program/clinic. How do you feel about the program staff/clinicians?
Success measures
Think about the program and the goals you have for your family: define success in the program.
Effort/commitment
How do you feel about the amount of work your family will have to do to reach your goals? How likely is your family to complete the program?
Barriers
What do you think might get in the way of, or interfere with your family participating in this program/clinic?
Consequences
How will your involvement in this program affect your work performance and your child’s school performance? What other concerns do you have about participating in this program?
a deeper understanding of a parent’s preparation for treatment also may provide insight into family motivation that could be related to program adherence. The objectives of this study were to: (1) investigate attitudes and beliefs of parents just before their children began a pediatric obesity treatment program; (2) identify expectations of treatment, understanding of the treatment process, motivation to participate, and perceived barriers to participation; and (3) identify aspects of treatment that could be enhanced to reduce patient attrition. METHODS We conducted in-depth phone interviews with the parents or adult caregivers of children preparing to begin obesity treatment. Families were recruited and enrolled from the waiting lists of primary care, community-based, and tertiary care providers in North Carolina. The study sites and participants are identified below. Inclusion of families from these 3 types of providers was strategic, as this approach provides a broader understanding of programs across the treatment spectrum via qualitative triangulation,15 a method of utilizing multiple data sources to investigate given phenomena. The expectancy theory of motivation (ETM) was the theoretical framework that guided the design and analysis of this study.16,17 This framework also was used to guide our previous investigation with weight management clinicians.8 According to ETM, motivation to participate in certain endeavors, such as weight management, depends on 3 core factors: expectancy (increased effort yields increased performance), instrumentality (increased
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performance yields outcomes), and valence (the value of an expected outcome). According to this framework, treatment retention and attrition are likely to be a function of patients’ expectations of treatment, their performance and adherence to treatment recommendations, and the value they ascribe to treatment and expected outcomes. Interview Guide Following the core tenets of ETM, interview guides (Table 1) were developed for use with caregivers. Interviews included 20 open-ended and semi-structured questions, which were reviewed for face validity and pilot-tested via cognitive interviews in a subset of volunteer caregivers.18 These were caregivers of children waiting to enroll in weight management programs or had come for their first visit. Their responses were not included in the study and were used for pilot-testing purposes only. Use of a semi-structured interview format was meant to allow the interviewer to probe for detail, provide clarification, and allow new areas of inquiry to emerge within each parent interview. Highly structured interviews, though more systematic, otherwise may have been too restrictive and less useful in the context of this investigation.19 Demographic information also was collected during the interview, including variables that have been identified previously as predictors of attrition and obesity prevalence (race and ethnicity, socioeconomic status, and family structure). Study Sites and Participants Participants were recruited from a sample of primary care (PC), community-based (CB), and ter-
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Table 2 Participating Obesity Treatment Programs Located in North Carolina and Composition of Participants Level of Treatment Program
Staff
Treatment Program Duration and Description
Age Range of Program
Caregivers Representing Program
Primary care
Multispecialty pediatric practice, federally qualified health center
MD, RD
Open-ended
1 - 18 years old
N=2
Community-based (N = 2)
Group program held at YMCA
(1) MD, C, ES, RN, (2) RN, C, RD
12 weeks
8 - 14 years
N = 13
Tertiary care (N = 2)
Multidisciplinary clinic
(1) MD, RD, PhD, RN, PT, SW (2) MD, RD, PT, ES, C, SW
(1) Open-ended individual, monthly clinic visits
1 - 21 years
N = 10
(2) 12 months individual, bi-weekly to monthly clinic visits
2 - 18 years
Individual, monthly clinic visits Weekly group meetings
Note. MD = Pediatric Physician or Secondary Provider (Physician’s Assistant); RD = Registered Dietitian or Nutritionist; C = Counselor (clinical social worker, marriage and family therapist, licensed practical counselor); ES = Exercise Specialist; RN = Registered Nurse; PhD = Psychologist (Clinical Psychologist, Medical Family Therapist); PT = Physical Therapist; and SW = Social worker
tiary care providers (TC) offering pediatric obesity treatment programs in various locations across the state of North Carolina. Study sites were targeted for participation through formal and informal networks, and all sites identified served diverse populations.8 All programs received referrals from children’s primary care physician or other medical provider. For PC, referrals were made internally from other providers in the practice. For CB and TC, referrals were from physicians or medical providers in the community (externally), typically the primary care provider, or sub-specialists in the area. All programs saw children for obesity, typically with a weight-related comorbidity. All programs were “family-based” in that they required an adult caregiver to participate in treatment (Table 2). Participants (caregivers) were included in this interview study if they were English-speaking, had a child between 8 and 14 years old, and were waiting to begin weight management in one of the identified PC, CB, or TC programs. To capture more detailed information, caregivers were the focal targets and units of analysis of this investigation. To prevent a burden on children, they were not asked to participate due to the intensive nature of interviews necessary to achieve the objectives of this study. Each weight management clinic identified participants who met eligibility criteria, and provided them with information (by flyer) about participation in the study. The flyer detailed the study being a phone interview, lasting about 45 minutes, to discuss their child’s and family’s participation
in a weight management program. Those who expressed interest in participating were asked to contact study staff via telephone or email, and were then scheduled to complete consent processes via telephone. Once consent was obtained, 2 copies of the consent form were mailed to participants to sign, along with a postage-prepaid envelope in which to return one of the signed forms. Each caregiver who returned a signed consent form was scheduled to participate in a phone-interview, and received a gift card in the mail upon completion of the interview.
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Data Collection Study staff received extensive training for conducting interviews by phone, and each interview was digitally recorded using USB Blast technology (Goleta, CA). After training and having a trial interview recorded for quality control, 2 experienced study staff completed all interviews. Interviews were transcribed verbatim in an electronic word processing format. Saturation of responses (the approximate number of interviews needed to provide consistent information; N = 20-30) was initially determined by the investigators (CG, MBI) based on prior research and experience,8-13,20 and then corroborated in subsequent analyses with the senior investigator (JAS). Upon reaching saturation, new enrollment was stopped. Data Analysis Interview transcripts were analyzed using an in-
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Table 3 Participant Characteristics N = 25
Relationship to Child
Caregiver Mean age ± SD
41 y ± 6.1 (range 33-60)
Female
96% (24)
Mean age ± SD, Child
10.8 years ± 1.6
Race White, non-Latino
56%
African-American, non-Latino
40%
Other, bi-racial
4%
Employment Employed
76%
Student
12%
Unemployed
12%
Marital Status Married
64%
Single/not married
24%
Living with significant other
4%
Divorced
8% (continued on next column)
ductive thematic process, allowing ideas to emerge organically from participants’ interviews.21,22 Rather than formulating preconceived hypotheses, this systematic method began with collection of qualitative data. Data were then analyzed to generate new ways of understanding and conceptualizing caregiver expectations from their perspective. Investigators separately reviewed transcripts to identify potential codes, from which a common coding system was developed. Codes were modified as needed during this process. All codes were grouped into like-concepts and then grouped into broad categories from which to develop and interpret themes. This was an iterative process with repeated comparisons and revisions throughout analysis. Initial coding was completed by one investigator (GC), then reviewed by subsequent investigators (MBI, JAS); the coding system was developed by all investigators from reading and re-reading transcripts (CG, MBI, JAS). Differences were adjudicated in the following manner: discrepant codes were identified, and the investigators with disagreement in coding (CG, MBI) discussed in tandem. If mutual agreement could not be reached, then the senior investigator (JAS) was presented the discrepancies, with reasons for them discussed. Upon reviewing the original transcripts, the senior investigator resolved them through discussion with the other investigators and mutual
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Table 3 (continued) Participant Characteristics Biologic
88%
Adopted
8%
Grandchild
4%
Child’s Sex Female
64%
Male
36%
Education Some high school
8%
High school graduate
12%
Vocational graduate
16%
Some college
12%
College graduate
40%
Graduate school graduate
12%
Household Income $75,000
20%
agreement on final coding schema. Intercoder agreement was not tracked as all discrepant codes were resolved through discussion. RESULTS Six obesity treatment programs agreed to participate (2 PC, 2 CB, and 2 TC). Of these, 37 caregivers were recruited to be interviewed from 5 programs (in one primary care program, no caregiver expressed interest). Exact recruitment numbers were not available, though all who called to inquire and qualified did agree to participate, and completed the consent process and an initial interview before treatment. Due to technical difficulties with audio recording equipment, 5 interviews were not digitally recorded, and 7 were of unusable audio quality. As a result, interviews were available from only 4 of the 6 programs (based on notes of the interview, responses did not appear substantially different from other participants, but information was insufficient to include in analysis). A total of 25 caregiver interviews were analyzed (Table 2). Nearly all caregivers identified themselves as biological mothers of the specified patient, and most were white (Table 3). Education and income varied considerably among participants. Four major themes emerged: motivation, readiness, expectations, and patients’ measures of success. Table 4 provides a list of themes and sub-
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Table 4 Themes and Representative Quotes Theme
Sub-theme
Representative Quotes
Motivation
Child overweight but healthy, some comorbidities
“He is in fairly good health, he does have slightly high cholesterol, but other than that he is in good health, just overweight.”
Worried about child’s weight management, future comorbidities, mental health
“If he doesn’t try to get control of that, the weight problem… something he will have to deal with for the rest of his life. He needs to try to get a handle on it, especially for his self-esteem and future health conditions between diabetes and heart condition and so forth.”
Recent diagnosis by doctor or worsening of child’s weight status
“The doctor…she said that the next step was to do the blood work…the attitude that she and her daddy had was ‘hey she is a child she is burning that off’ but when I wrote down the results and I showed her she was like ‘wow’, it hit home like ‘ok I’m a child, I’m 10 years old but something I need to work on.‘ “
Caregiver seeking Third party support
“Intellectually we know what’s good and bad, but at this point, especially with him going through the teen years, he doesn’t necessarily want to listen to mom. I am ‘the nag.’ So he needs to be with someone else who will provide ideas, who will instruct. And I am hoping that he will listen and he will choose to follow.”
General understanding of program; unsure of commitment at home
“From the orientation, some of the things that will be involved: being family and doing healthy things, and being healthy.” “I might be misunderstanding the amount of work we would have to do. I am hoping that we will go and they will talk about food control and things like that. When we get back home I will not have to say anything. But I don’t know what our homework will be.”
Committed to completion; motivated by recent small successes
“It’s going to be hard but we are going to do it…My family is exercising more and drinking more water…we have changed a lot from the things we used to do.”
Potential barrier: maintaining momentum throughout and after program; child’s lack of motivation, willingness
“I am worried that after a few months, we will lose momentum and we would go back to our old ways. And another thing that worries me is that I would be overwhelmed that I would be responsible for making dinner every night and exercising every time and be hungry.”
Potential barrier: logistical frustrations
“I am ok with the amount of work you have to do to achieve anything. Fitting it on the schedule will be the hardest thing”
Readiness
Expectations
Success measures
Learning about healthy “From the video I see that it will give us both a change in our lifestyle, some lifestyles and family working different ideas about weight management…I hope that my family will become together more knowledgeable…just to give us more ideas about healthy eating and healthy choices” Accessible and comfortable exercise opportunity with social interaction
“Just getting them in with a group of kids who have the same thing going on, I wanted them to get to be able to feel that they are not the only one. And to be able to exercise together with them and talk in the meeting”
Staff who are supportive experts; help maintain momentum throughout/after the program
“I am excited about the staff because they seem to be experts in their field, they know what they are doing and they can give us the best advice there is…someone to give me support and give me right answers and someone to lean on. I know the journey will not be perfect. I think one of the things that we will need help on will be to get back on course”
Child learning to independently manage healthy lifestyle
“I am hoping that if she gets the information from other than her parents it will stay with her and encourage her so that when mom and dad are not fixing a meal, she needs to have some self-responsibility as to what she eats.”
Adapting and maintaining healthy lifestyle habits as a family
“It we can start making, as a family, change habits and do them consistently. And we are more active and we can feel we have more energy to do things. Because I feel if we have more energy to do things then things like weight loss and stuff like that would come along with it”
Child’s improved physical, mental and social health
“I think it’s a matter of overall self-worth and well-being, and as teenagers it’s important to have that self-confidence and to feel that they can manage their own goals as well”
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Caregiver Expectations of Family-based Pediatric Obesity Treatment themes, along with illustrative quotes from the interviews. Motivation All caregivers cited specific motivations for enrolling their children in treatment, primarily to improve their children’s physical and mental health. In TC, which required physician referral, more caregivers reported that their children’s physicians encouraged them to start a weight management program. In CB, caregivers reported a mix of intrinsic motivation (self-referral) and extrinsic motivation (physician referral). Caregivers did not discuss their child’s motivation or willingness to enroll in the program beyond short answers of “he is interested” or “he wants to lose weight,” even though this was a question in the interview. Caregivers felt their children were overweight but still healthy, despite having comorbidities. Caregivers also reported that their children had comorbidities associated with being overweight, including high cholesterol, arthritis, and sleep apnea. Few described their children as obese. “Right now I would describe it as being a little too over the normal. I think once he gets a few pounds of it off then he’ll feel better about himself and he’ll be able to do more things with his friends running around and such.” “Other than being overweight, I would say that she is in very good health.” Caregivers expressed worry over their children’s weight, future comorbidities, and mental health. Caregivers’ major concerns related to their children’s weight were focused on mental health and quality of life issues like diminished ability to socialize with peers. When asked about their children’s future health, caregivers were concerned about their children’s ability to manage their weight independently, and expressed fears that their children’s weight status would worsen or lead to additional comorbidities. “I’m worried about her weight and all the stress on her heart with her being heavy.” “I think it makes her a little more self conscious. I think she doesn’t date like other girls her age, and she can’t buy the little tiny clothes from the store that she will like to get.” Children were recently diagnosed with obesity, or children’s weight status had recently worsened. Many caregivers said their children’s doctors were the primary motivators who encouraged them to join a weight management program, citing a ‘red flag moment’: a recent medical visit when the child’s weight had either worsened or had been diagnosed with a weight-related comorbidity. “We’ve been leaving [his weight] in the back of our heads, but as far as motivation it was really the doctor that told me that something with his levels were not right. Then it concerned me, because we do have diabetes and heart disease and high blood pressure, once I heard that my child, that my 9-year-old child, was getting at these levels.” Caregivers were seeking support from a third party. Caregivers themselves felt they lacked the
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ability to influence children to make the necessary changes for weight loss. Thus, the caregivers enrolled their children in a treatment program hoping their children would be more willing to listen and adhere to guidelines specified by medical professionals. “I had been looking for some way to get her involved in weight loss, but she has always pushed it to the side, and said ‘you are picking on me. I don’t want to talk about it’.” Readiness Caregivers demonstrated varying levels of readiness to start an obesity treatment program, based on understanding what the program would entail, commitment to weight management, and confidence in identifying and overcoming potential barriers. Caregivers had a general understanding of their children’s obesity treatment program, but had varying understandings of the commitment required at home. Most caregivers could describe in general what would be involved during visits, including types of activities in which they would participate or what they would be learning. However, some were unsure how weight management would impact behaviors at home, particularly their role in helping their children make changes. For example, some caregivers felt their children would be responsible enough to make better food decisions on their own at home, and perceived that programs would enable children to manage their own health. “…I am no longer the food police for the kids when we sit down to eat. If our table is not a battlefield, then I don’t have to tell my daughter “put that back!” Sometimes I feel she eats because she knows I don’t want her to, and I would like for dinner to be a pleasant time and food not to be an issue.” “…I am looking forward to someone having my back, someone else besides Mom reinforcing what I say. Because when I open my mouth all the children hear is ‘blah blah blah’. When I open my mouth, that’s what everybody hears. So I want somebody else to speak in clear words that they will actually hear.” In contrast, only a few caregivers felt the responsibility to make changes in the home would fall entirely on them, as caregivers identified themselves as the primary food providers in the family. One caregiver felt she would become overwhelmed by the number of changes needed. “…another thing that worries me is that I would be overwhelmed, that I would be responsible for making dinner every night and exercising every time, and be hungry. I am worried about seeing others not making good food choices, and whether or not I say anything or not, how to handle that.” Caregivers were committed to program completion and motivated by recent small successes. Caregivers reported making small changes at home, resulting in small amounts of weight loss, or success in changing habits, which served as encouragement and gave them confidence in making more changes. Most caregivers stated they
Giannini et al were highly committed to completing the weight management program with their children, and described their family as “very likely” to complete the program. For example, when asked how likely the family was to complete the program, nearly all answered “very likely” or “100%. We’re going to make sure we’re going to make every appointment, because this is what my daughter needs and what we need as a family.” But when asked how likely their family was to be successful, not just completing the program, all answered either “likely” or “between 70 - 80%.” Caregivers felt confident they could complete the program, especially those enrolled in communitybased programs, which are generally shorter (1012 weeks vs 12 months). Nonetheless, participants did not feel they would achieve their success measures (weight loss, improved health habits). “ Success? 65%. I would say 100% but we always get on a good start and something detours us.” Logistical issues and programmatic elements were seen as barriers to program adherence. Caregivers’ main anticipated barriers to participating in weight management programs were logistic, such as scheduling conflicts and illness. “The only thing is just making our appointments and being able to get there. You know, being able to get to the appointments, pretty much if I have to. You have to weigh out your options: do I go to the grocery store or do I go to my appointment?” Many participants explained they had already begun to plan ahead or had committed to prioritizing attendance, because they viewed attendance and participation as keys for success. For all programs (particularly the CB, held in the evenings), caregivers felt participation would only cause occasional absences and would not conflict with other responsibilities such as work or school. In fact, caregivers felt that participating in weight management would improve their own work performance and their children’s school performance by affording them more energy. “I hope [the program] helps him rest a little bit better, and have a clearer mind in the morning.” Maintaining momentum during and after the program, and children’s lack of motivation and willingness, were seen as barriers to program adherence. Another major barrier participants identified was maintaining momentum, especially those who were about to enter 12-month tertiary care programs. These caregivers expected staff and clinicians to help them maintain momentum throughout the weight management process. For families entering shorter programs, participants felt confident their families would complete their programs, but worried about maintaining knowledge after the program ended. One participant suggested that post-program follow-up visits would be helpful.
their expectations for their treatment programs. Specifically, caregivers described and explained what they expected of program staff and clinicians. “The right support is there…people who know what they are talking about.” Caregivers expected to learn about healthy lifestyles in the context of family. For caregivers participating in tertiary care programs, many expectations were related to learning how to adopt healthy lifestyle habits for the entire family. Caregivers expected they would receive information about eating healthier, preparing healthy foods, and increasing physical activity. “[We expect] to help him develop healthy habits, and for us, as a family, to have the information we need to make sure we are making the decisions we need to be making to help him…we will develop the good skills for eating and exercise, and give us some goals, so we can change our game plan to make sure that we have a healthier future as a family.” Caregivers expected programs to provide access to comfortable exercise opportunities and social interaction. Caregivers perceived obesity treatment as an opportunity to increase their children’s physical activity, and expected programs to help overcome barriers that would otherwise perpetuate children’s sedentary behaviors. These expectations were related to provision of comfortable exercise environments, access to fitness facilities or alternative forms of exercise, and various free fitness opportunities. Caregivers entering community-based programs also expected that group activities would provide more social interaction and peer support for their children. Caregivers expected staff to be supportive experts who could help maintain momentum during and after program completion. Across all groups, caregivers expected staff to be supportive educators who would increase motivation, provide honest and positive feedback, and assist in meeting behavioral goals. Caregivers in the TC expected staff members to be the experts and give them the information necessary to meet their health goals. “I expect them to give me the best medical advice and training that I know they can give me.” In CB, caregivers also looked to clinic staff to provide high-quality information, but appreciated their familiarity and ability to relate to parents and families from their personal experiences.
Expectations All caregivers made general statements about
Measures of Success Individual measures of success differed between caregivers, and few explicitly indicated weight loss as a measure of success. Most caregivers felt that improvement in their child’s mental health would qualify as a success. Caregivers also expressed hope in losing weight themselves. Caregivers felt that weight management would be successful if their children learned to manage a healthier lifestyle independently, or if their families adopted healthy habits together. Some caregivers expected that by com-
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Caregiver Expectations of Family-based Pediatric Obesity Treatment pletion of the program, their children would gain enough independence to maintain healthy behaviors throughout their life. “…everyone will learn to choose the right things to eat. I don’t want to be the food police, and I won’t have to shoulder so much of the guilt for the whole family being overweight.” Other caregivers defined success more as a learning opportunity for the whole family. These caregivers explained success in terms of learning from the staff and then imparting and implementing new knowledge at home. Many also noted that learning how to lead a healthy lifestyle as a family was an important reason for joining their treatment program. Children’s improved physical, mental, and social health. Improvement in children’s mental health was mentioned most frequently among caregivers as a measure of success, including higher self-esteem. Caregivers also mentioned improved social health, greater willingness and ability to interact with peers, and improvements to children’s overall health and quality of life. “Goals? Losing weight and seeing my daughter’s self-esteem rise.” “I think it’s a matter of overall self-worth and well being, and as teenagers it’s important to have that self-confidence and to feel that they can manage their own goals as well.” “I just want him to be happy.” DISCUSSION This is the first study to investigate perceptions of obesity treatment among caregivers waiting to begin a pediatric weight management program with their children. This qualitative investigation provides a new way of understanding parents’ and caregivers’ expectations and motivations before any behavioral treatment processes begin. Caregivers expressed strong motivations for starting treatment, without certainty of what they would accomplish or whether they would be successful. This discrepancy likely could influence confidence and self-efficacy for making health behavior changes before treatment programs begin. Furthermore, caregivers may be unsure of their role in their children’s behavior change process, specifically for implementing change in the home setting. Many caregivers expected that their children would learn to manage their health independent of the family system, despite the program’s focus on family-based changes.8 There was also the expectation of caregivers to learn about healthy lifestyles and lose weight themselves, with little mention of behavior change, which could indicate an incomplete understanding of the treatment process. Caregiver-reported motivations for joining obesity treatment programs did not align with their own measures of success. For example, caregivers often listed “weight status” as the motivation for enrolling their child in weight management, suggesting that weight loss was their marker of success. Interestingly, caregivers identified improved mental and social health as outcomes as
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better measures of success than improved weight and physical health, and few reported children’s weight loss as a metric of success. Potential explanations of this would be the “referral” nature of the programs; even if located within a primary care setting, children were referred internally for care, or had been recently diagnosed with obesity or obesity-related comorbidity. However, caregivers identified emotional or social concerns in need of addressing within treatment. This could be from a lack of self-efficacy in changing weight or weightrelated behaviors, as many noted less confidence in this arena, or the caregivers greater concern of the immediate social impact that is “symptomatic” in their children: quality of life, friendships, selfesteem, and mood. The Expectance Theory of Motivation (ETM) was used to develop the interview to guide investigation of caregivers’ expectations of treatment, adherence to the treatment program, and what outcomes were initially valued. The themes that emerged during analysis (Motivation, Readiness, Expectations, and Success measures) reflected components of ETM. Expectancy (increased effort yields increased performance) was found in the theme of readiness, where caregivers were unsure of their commitment and role in treatment, and expressed concerns of barriers to their participation. Maintaining momentum in the program was of concern, impeding the effort they could put forth. Instrumentality was found in Readiness (motivated by recent small successes) and Expectations (learning about healthy lifestyles for entire family, experts supporting them and maintaining momentum). The same sub-themes of barriers to participation (Readiness) also map to Instrumentality, impacting the family’s performance in changing lifestyle habits. Finally, Valence can be seen in both the themes of Motivation (value the outcome of improved future physical and mental health, recent diagnosis of comorbidity) and Measures of Success (improved physical, mental and social health). These findings can be compared to our previous work with clinicians from the same obesity treatment programs.8 Clinicians most often reported that participants’ unrealistic measures of success related to weight loss increased families’ frustrations and the likelihood of dropout. The current study contradicted the idea that patients’ goals are solely weight-based, indicating a potential lack of communication between clinicians and parents regarding the goals of weight management, or change in expectations upon initiating treatment. Clinicians also may not be asking about non-weight or non–health related concerns of parents, such as self-esteem or mood. This area of discrepancy may be important for further investigation to improve understanding of attrition from programs. In addition, by focusing on the social-emotional aspects of weight management (self-esteem, peer interaction), which were important to the caregivers interviewed, obesity treatment programs likely could
Giannini et al address children’s self-esteem and social interactions, thereby better aligning with caregivers’ measures of success. A strength of this study is conducting the investigation in the same treatment programs of our previous study,8 in treatmentseeking families of children with obesity, and in a children’s age group most frequently studied in childhood obesity.1 Caregivers entering weight management programs with their children indicated high confidence regarding program completion, and reported few anticipated barriers beyond logistics and scheduling. Thus, further studies should investigate unanticipated barriers that eventually contribute to dropout. Caregivers we interviewed also reported high confidence in their perceived ability to complete their treatment programs, but did not report equal levels of confidence regarding their ability to be successful in behavior change. This finding indicates that parents may not have a thorough understanding of the process of their children’s weight management, or again, may have different expectations for success than those set by the programs. Our findings also indicate discrepancies in expectations between caregivers. Many anticipated that programs would require little commitment and focus mainly on the children, and others expected that programs would be burdensome on parents. Within this spectrum of expectations, a few caregivers viewed the program as a learning opportunity for the entire family, which is most consistent with reports from clinicians in our prior investigation.8 Similarly, many caregivers did not have clear expectations of their role in their children’s treatment programs, or they expressed unrealistic expectations. This could stem from a lack of communication between clinicians and families in the period between referral and the start of weight management. As described previously, parents’ lack of realistic expectations also could stem from insufficient efforts by clinicians to build appropriate expectations; this situation could be improved by increasing clinicians’ focus on relationship-building.23 Further study could aid in understanding the adult caregivers’ role in treatment, and whether addressing that may improve patient and family retention. This study has several implications that could inform practice. Concerns about scheduling were the most common anticipated barriers to program completion. Thus, there is a need for clinics to address scheduling issues proactively, and assist families in securing convenient appointments or scheduling group activities whenever possible. Maintaining momentum was another anticipated barrier to success, which parents expected that program staff would help them overcome. To meet parental expectations and possibly reduce attrition, clinicians could focus on families’ attempts to change behavior, as opposed to their shortcomings. Whereas parents demonstrated understand-
ing of what to expect from treatment, some were unclear as to what commitment was required from them. Therefore, discussions about family, parent, and child roles in weight management, both within the program and at home, could be incorporated as early as possible in the treatment process or at the time of referral. Because many caregivers indicated that their children’s mental health and peer interactions were important, consistent with prior evidence,13 clinicians could consider programmatic elements to foster improvements in self-esteem, self-efficacy and interpersonal interactions. Clinicians also may wish to query patients and parents about other success measures unrelated to weight, so that progress in these areas can be tracked to improve the fit with parent and family expectations. Our study has several limitations, primarily related to its qualitative nature, and requires further exploration and validation via other research methods. However, the methods employed here are appropriate given the exploratory nature of the study, as our objective was to seek and synthesize in-depth information from a broad range of settings and perspectives. Participants were recruited only from North Carolina, and the sample size was small, so our findings are not necessarily representative of all parents and all programmatic settings. However, lack of generalizability is not necessarily a weakness of qualitative research, but results must be taken with caution when applying to different settings and populations.21 Recruitment data were not available, so it is not certain how representative of a sample this was. Only one father was interviewed, so a full understanding of parent perceptions was not possible. A significant limitation is the loss of 12 interviews. This does represent loss of a whole treatment program, and limits the significance of our findings. However, based on handwritten notes from the interviews, we felt responses from parents did reach saturation, even without having all the interview recordings. This study elucidated the unique perspectives of caregivers’ expectations and motivations just before beginning a pediatric obesity treatment program with their children. Findings from this study can be used in proactive approaches to increase family adherence and engagement. These findings could be used to minimize attrition, such as programs assisting parents in overcoming logistical barriers, focusing on each parent and family’s individual success measures, and communicating more extensively with parents and families about their roles in their children’s weight management.
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Human Subjects Statement Study protocols, interview questions, and consent procedures all were reviewed and approved by the Wake Forest University Health Sciences Institutional Review Board (IRB#00012961). Conflict of Interest Statement Dr Skelton has served as a consultant to the
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Caregiver Expectations of Family-based Pediatric Obesity Treatment Nestle Corporation, which was not involved in any aspect of this study. Dr Skelton was supported in part through NICHD/NIH Mentored Patient-Oriented Research Career Development Award (K23 HD061597). Ms Giannini was supported by R25 GM062429 (DI Diz, PI). Acknowledgments The authors thank Karen Klein (Biomedical Services Research and Administration, Wake Forest University Health Sciences) for her assistance in editing this manuscript; and Camila Pulgar for her assistance in the conduct of this study. References
1. Whitlock EP, O’Connor EA, Williams SB, et al. Effectiveness of weight management interventions in children: a targeted systematic review for the USPSTF. Pediatrics. 2010:125(2):e396-418. 2. Skelton JA, Beech BM. Attrition in paediatric weight management: a review of the literature and new directions. Obes Rev. 2011;12(5):e273-281. 3. Skelton JA, Goff D, Ip E, Beech BM. Attrition in a multidisciplinary pediatric weight management clinic. Child Obes. 2011;7(3):185-196. 4. Skelton JA, Irby MB, Geiger AM. A systematic review of satisfaction and pediatric obesity treatment: new avenues for addressing attrition. J Healthc Qual. 2014;36(4):5-22. 5. Tershakovec AM, Kuppler K. Ethnicity, insurance type, and follow-up in a pediatric weight management program. Obes Res. 2003;11(1):17-20. 6. Cote MP, Byczkowski T, Kotagal U, et al. Service quality and attrition: an examination of a pediatric obesity program. Int J Qual Health Care. 2004;16(2):165-173. 7. Barlow SE, Ohlemeyer CL. Parent reasons for nonreturn to a pediatric weight management program. Clin Pediatr (Phila). 2006;45(4):355-360. 8. Skelton JA, Irby MB, Beech BM, Rhodes SD. Attrition and family participation in obesity treatment programs: clinicians’ perceptions. Acad Pediatr. 2012;12(5):420428. 9. Stewart L, Chapple J, Hughes AR, et al. The use of behav-
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ioural change techniques in the treatment of paediatric obesity: qualitative evaluation of parental perspectives on treatment. J Hum Nutr Diet. 2008;21(5):464-473. 10. Woolford SJ, Sallinen BJ, Schaffer S, Clark SJ. Eat, play, love: adolescent and parent perceptions of the components of a multidisciplinary weight management program. Clin Pediatr (Phila). 2012;51(7):678-684. 11. Edmunds LD. Parents’ perceptions of health professionals’ responses when seeking help for their overweight children. Fam Pract. 2005;22(3):287-292. 12. Sallinen BJ, Schaffer S, Woolford SJ. In their own words: learning from families attending a multidisciplinary pediatric weight management program at the YMCA. Child Obes. 2013;9(3):200-207. 13. Stewart L, Chapple J, Hughes AR, et al. Parents’ journey through treatment for their child’s obesity: a qualitative study. Arch Dis Child. 2008;93(1):35-39. 14. Sallinen Gaffka BJ, Frank M, Hampl S, et al. Parents and pediatric weight management attrition: experiences and recommendations. Child Obes. 2013;9(5):409-417. 15. Wolcott H. Ethnographic research in education. In Jaegger RM, ed. Complementary Methods for Research in Art Education. Washington, DC: American Educational Research Association; 1988:187-206. 16. Klein HJ. Further evidence on the relationship between goal setting and expectancy theories. Organizational Behavior and Human Decision Processes. 1991;49:230-257. 17. Vroom VH, Jago AG. On the validity of the Vroom-Yetton model. J Appl Psychol. 1978;63:151-162. 18. Willis GB. Cognitive Interviewing: A “How To” Guide (online). Available at: http://www.uiowa.edu/~c07b209/ interview.pdf. Accessed January 29, 2015. 19. Alasuutari P. An Invitation to Social Research. London, England: Sage Publications; 1998. 20. Skelton JA, Irby M, Guzman MA, Beech BM. Children’s perceptions of obesity and health: a focus group study with Hispanic boys. Infant Child Adolesc Nutr. 2012;4(5):315-320. 21. Bernard HR, Ryan GW. Analyzing Qualitative Data: Systematic Approaches. Washington, DC: Sage Publications; 2010. 22. Charmaz K. Constructing Grounded Theory. Thousand Oaks, CA: Sage Publications; 2006. 23. Ahmed SM, Lemkau JP, Birt SL. Toward sensitive treatment of obese patients. Fam Pract Manag. 2002;9(1):2528.
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ulti-disciplinary behavioral interventions have demonstrated efficacy for the treatment of children classified as overweight or obese.1 However, attrition from such treatment programs varies widely, as 27% to 73% of participants drop out prior to program completion.2 Present research has focused broadly on sociodemographic predictors of attrition: children with severe obesity, older adolescents, and racial/ethnic minorities.2 There is little research on more nuanced factors of family process and function that may influence attrition.2,3 One review of patients’ satisfaction with weight management shows that children and families report high satisfaction with obesity interventions.4 Thus, given the lack of variability in patient satisfaction scores, factors other than patient satisfaction are likely to be more relevant contributors of attrition. Formative work incorporating patient perspectives and expectations of impending treatment may reveal from the onset of treatment the factors responsible for high attrition, particularly as attrition occurs early in treatment.5-7 Results of this work could prove useful for guiding attrition-reduction efforts within pediatric weight management settings. Courtney Giannini, University of Cincinnati College of Medicine, Cincinnati, OH. Megan B. Irby, Research Program Manager, Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC. Joseph A. Skelton, Associate Professor, Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC Correspondence Dr Skelton; [email protected]
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health improvement to be an important success measure. Caregivers understood the program’s approach, but were unsure of the commitment required. Caregivers were confident they would complete treatment but not in being successful. Conclusions: Caregivers’ expectations of treatment success and their role in treatment may be a hindrance to adherence. Key words: qualitative; pediatric; obesity; treatment; expectations Am J Health Behav. 2015;39(4):451-460 DOI: http://dx.doi.org/10.5993/AJHB.39.4.1
As a precursor to the current study, the authors explored factors potentially linked to attrition from the perspectives of 29 obesity treatment clinicians from 6 treatment programs in North Carolina.8 These clinicians perceived that negative past experiences with obesity treatment, desire for immediate outcomes, unrealistic expectations, and lower family value of treatment all appeared to be related to higher rates of attrition among their patients. Clinicians felt that failure to achieve desired weight loss within an expected period of time reduced families’ motivation to remain in treatment; thus, many clinicians emphasized the importance of building realistic expectations with patients and families prior to beginning treatment processes. By assisting families in developing appropriate expectations for treatment and weight loss, clinicians hoped that families would be able to cope better with less-than-desirable progress. Few studies have captured the valuable perspectives of parents and children entering into obesity treatment programs.9-13 Interviewing parents and adult caregivers before treatment begins could elucidate patient and family expectations that are either discrepant from clinical treatment approaches or unrealistic. Taken in conjunction with the findings from prior work,11,12,14 including our previous study,8 a more comprehensive understanding of family expectations may prove valuable for enhancing patient-centered care and improving retention. Parent motivation, too, is of great importance in behavior change, as it facilitates attendance in treatment and change within the home. Gaining
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Caregiver Expectations of Family-based Pediatric Obesity Treatment
Table 1 Semi-structured Interview Guide, Mapped by Domain, with Sample Items Child’s Health and Weight
Tell me about your child’s health
Motivation
Why has your family chosen to begin a weight management program? What is the most important reason you and your family are joining this program? Describe to me why your goals are valuable or important to your family.
Knowledge/expectations/ feelings about program
Tell me about the program you will be starting and what will be involved. Describe to me your feelings beginning this program/clinic. Describe to me your child’s feelings about participating in this program/clinic. How do you feel about the program staff/clinicians?
Success measures
Think about the program and the goals you have for your family: define success in the program.
Effort/commitment
How do you feel about the amount of work your family will have to do to reach your goals? How likely is your family to complete the program?
Barriers
What do you think might get in the way of, or interfere with your family participating in this program/clinic?
Consequences
How will your involvement in this program affect your work performance and your child’s school performance? What other concerns do you have about participating in this program?
a deeper understanding of a parent’s preparation for treatment also may provide insight into family motivation that could be related to program adherence. The objectives of this study were to: (1) investigate attitudes and beliefs of parents just before their children began a pediatric obesity treatment program; (2) identify expectations of treatment, understanding of the treatment process, motivation to participate, and perceived barriers to participation; and (3) identify aspects of treatment that could be enhanced to reduce patient attrition. METHODS We conducted in-depth phone interviews with the parents or adult caregivers of children preparing to begin obesity treatment. Families were recruited and enrolled from the waiting lists of primary care, community-based, and tertiary care providers in North Carolina. The study sites and participants are identified below. Inclusion of families from these 3 types of providers was strategic, as this approach provides a broader understanding of programs across the treatment spectrum via qualitative triangulation,15 a method of utilizing multiple data sources to investigate given phenomena. The expectancy theory of motivation (ETM) was the theoretical framework that guided the design and analysis of this study.16,17 This framework also was used to guide our previous investigation with weight management clinicians.8 According to ETM, motivation to participate in certain endeavors, such as weight management, depends on 3 core factors: expectancy (increased effort yields increased performance), instrumentality (increased
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performance yields outcomes), and valence (the value of an expected outcome). According to this framework, treatment retention and attrition are likely to be a function of patients’ expectations of treatment, their performance and adherence to treatment recommendations, and the value they ascribe to treatment and expected outcomes. Interview Guide Following the core tenets of ETM, interview guides (Table 1) were developed for use with caregivers. Interviews included 20 open-ended and semi-structured questions, which were reviewed for face validity and pilot-tested via cognitive interviews in a subset of volunteer caregivers.18 These were caregivers of children waiting to enroll in weight management programs or had come for their first visit. Their responses were not included in the study and were used for pilot-testing purposes only. Use of a semi-structured interview format was meant to allow the interviewer to probe for detail, provide clarification, and allow new areas of inquiry to emerge within each parent interview. Highly structured interviews, though more systematic, otherwise may have been too restrictive and less useful in the context of this investigation.19 Demographic information also was collected during the interview, including variables that have been identified previously as predictors of attrition and obesity prevalence (race and ethnicity, socioeconomic status, and family structure). Study Sites and Participants Participants were recruited from a sample of primary care (PC), community-based (CB), and ter-
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Table 2 Participating Obesity Treatment Programs Located in North Carolina and Composition of Participants Level of Treatment Program
Staff
Treatment Program Duration and Description
Age Range of Program
Caregivers Representing Program
Primary care
Multispecialty pediatric practice, federally qualified health center
MD, RD
Open-ended
1 - 18 years old
N=2
Community-based (N = 2)
Group program held at YMCA
(1) MD, C, ES, RN, (2) RN, C, RD
12 weeks
8 - 14 years
N = 13
Tertiary care (N = 2)
Multidisciplinary clinic
(1) MD, RD, PhD, RN, PT, SW (2) MD, RD, PT, ES, C, SW
(1) Open-ended individual, monthly clinic visits
1 - 21 years
N = 10
(2) 12 months individual, bi-weekly to monthly clinic visits
2 - 18 years
Individual, monthly clinic visits Weekly group meetings
Note. MD = Pediatric Physician or Secondary Provider (Physician’s Assistant); RD = Registered Dietitian or Nutritionist; C = Counselor (clinical social worker, marriage and family therapist, licensed practical counselor); ES = Exercise Specialist; RN = Registered Nurse; PhD = Psychologist (Clinical Psychologist, Medical Family Therapist); PT = Physical Therapist; and SW = Social worker
tiary care providers (TC) offering pediatric obesity treatment programs in various locations across the state of North Carolina. Study sites were targeted for participation through formal and informal networks, and all sites identified served diverse populations.8 All programs received referrals from children’s primary care physician or other medical provider. For PC, referrals were made internally from other providers in the practice. For CB and TC, referrals were from physicians or medical providers in the community (externally), typically the primary care provider, or sub-specialists in the area. All programs saw children for obesity, typically with a weight-related comorbidity. All programs were “family-based” in that they required an adult caregiver to participate in treatment (Table 2). Participants (caregivers) were included in this interview study if they were English-speaking, had a child between 8 and 14 years old, and were waiting to begin weight management in one of the identified PC, CB, or TC programs. To capture more detailed information, caregivers were the focal targets and units of analysis of this investigation. To prevent a burden on children, they were not asked to participate due to the intensive nature of interviews necessary to achieve the objectives of this study. Each weight management clinic identified participants who met eligibility criteria, and provided them with information (by flyer) about participation in the study. The flyer detailed the study being a phone interview, lasting about 45 minutes, to discuss their child’s and family’s participation
in a weight management program. Those who expressed interest in participating were asked to contact study staff via telephone or email, and were then scheduled to complete consent processes via telephone. Once consent was obtained, 2 copies of the consent form were mailed to participants to sign, along with a postage-prepaid envelope in which to return one of the signed forms. Each caregiver who returned a signed consent form was scheduled to participate in a phone-interview, and received a gift card in the mail upon completion of the interview.
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Data Collection Study staff received extensive training for conducting interviews by phone, and each interview was digitally recorded using USB Blast technology (Goleta, CA). After training and having a trial interview recorded for quality control, 2 experienced study staff completed all interviews. Interviews were transcribed verbatim in an electronic word processing format. Saturation of responses (the approximate number of interviews needed to provide consistent information; N = 20-30) was initially determined by the investigators (CG, MBI) based on prior research and experience,8-13,20 and then corroborated in subsequent analyses with the senior investigator (JAS). Upon reaching saturation, new enrollment was stopped. Data Analysis Interview transcripts were analyzed using an in-
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Table 3 Participant Characteristics N = 25
Relationship to Child
Caregiver Mean age ± SD
41 y ± 6.1 (range 33-60)
Female
96% (24)
Mean age ± SD, Child
10.8 years ± 1.6
Race White, non-Latino
56%
African-American, non-Latino
40%
Other, bi-racial
4%
Employment Employed
76%
Student
12%
Unemployed
12%
Marital Status Married
64%
Single/not married
24%
Living with significant other
4%
Divorced
8% (continued on next column)
ductive thematic process, allowing ideas to emerge organically from participants’ interviews.21,22 Rather than formulating preconceived hypotheses, this systematic method began with collection of qualitative data. Data were then analyzed to generate new ways of understanding and conceptualizing caregiver expectations from their perspective. Investigators separately reviewed transcripts to identify potential codes, from which a common coding system was developed. Codes were modified as needed during this process. All codes were grouped into like-concepts and then grouped into broad categories from which to develop and interpret themes. This was an iterative process with repeated comparisons and revisions throughout analysis. Initial coding was completed by one investigator (GC), then reviewed by subsequent investigators (MBI, JAS); the coding system was developed by all investigators from reading and re-reading transcripts (CG, MBI, JAS). Differences were adjudicated in the following manner: discrepant codes were identified, and the investigators with disagreement in coding (CG, MBI) discussed in tandem. If mutual agreement could not be reached, then the senior investigator (JAS) was presented the discrepancies, with reasons for them discussed. Upon reviewing the original transcripts, the senior investigator resolved them through discussion with the other investigators and mutual
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Table 3 (continued) Participant Characteristics Biologic
88%
Adopted
8%
Grandchild
4%
Child’s Sex Female
64%
Male
36%
Education Some high school
8%
High school graduate
12%
Vocational graduate
16%
Some college
12%
College graduate
40%
Graduate school graduate
12%
Household Income $75,000
20%
agreement on final coding schema. Intercoder agreement was not tracked as all discrepant codes were resolved through discussion. RESULTS Six obesity treatment programs agreed to participate (2 PC, 2 CB, and 2 TC). Of these, 37 caregivers were recruited to be interviewed from 5 programs (in one primary care program, no caregiver expressed interest). Exact recruitment numbers were not available, though all who called to inquire and qualified did agree to participate, and completed the consent process and an initial interview before treatment. Due to technical difficulties with audio recording equipment, 5 interviews were not digitally recorded, and 7 were of unusable audio quality. As a result, interviews were available from only 4 of the 6 programs (based on notes of the interview, responses did not appear substantially different from other participants, but information was insufficient to include in analysis). A total of 25 caregiver interviews were analyzed (Table 2). Nearly all caregivers identified themselves as biological mothers of the specified patient, and most were white (Table 3). Education and income varied considerably among participants. Four major themes emerged: motivation, readiness, expectations, and patients’ measures of success. Table 4 provides a list of themes and sub-
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Table 4 Themes and Representative Quotes Theme
Sub-theme
Representative Quotes
Motivation
Child overweight but healthy, some comorbidities
“He is in fairly good health, he does have slightly high cholesterol, but other than that he is in good health, just overweight.”
Worried about child’s weight management, future comorbidities, mental health
“If he doesn’t try to get control of that, the weight problem… something he will have to deal with for the rest of his life. He needs to try to get a handle on it, especially for his self-esteem and future health conditions between diabetes and heart condition and so forth.”
Recent diagnosis by doctor or worsening of child’s weight status
“The doctor…she said that the next step was to do the blood work…the attitude that she and her daddy had was ‘hey she is a child she is burning that off’ but when I wrote down the results and I showed her she was like ‘wow’, it hit home like ‘ok I’m a child, I’m 10 years old but something I need to work on.‘ “
Caregiver seeking Third party support
“Intellectually we know what’s good and bad, but at this point, especially with him going through the teen years, he doesn’t necessarily want to listen to mom. I am ‘the nag.’ So he needs to be with someone else who will provide ideas, who will instruct. And I am hoping that he will listen and he will choose to follow.”
General understanding of program; unsure of commitment at home
“From the orientation, some of the things that will be involved: being family and doing healthy things, and being healthy.” “I might be misunderstanding the amount of work we would have to do. I am hoping that we will go and they will talk about food control and things like that. When we get back home I will not have to say anything. But I don’t know what our homework will be.”
Committed to completion; motivated by recent small successes
“It’s going to be hard but we are going to do it…My family is exercising more and drinking more water…we have changed a lot from the things we used to do.”
Potential barrier: maintaining momentum throughout and after program; child’s lack of motivation, willingness
“I am worried that after a few months, we will lose momentum and we would go back to our old ways. And another thing that worries me is that I would be overwhelmed that I would be responsible for making dinner every night and exercising every time and be hungry.”
Potential barrier: logistical frustrations
“I am ok with the amount of work you have to do to achieve anything. Fitting it on the schedule will be the hardest thing”
Readiness
Expectations
Success measures
Learning about healthy “From the video I see that it will give us both a change in our lifestyle, some lifestyles and family working different ideas about weight management…I hope that my family will become together more knowledgeable…just to give us more ideas about healthy eating and healthy choices” Accessible and comfortable exercise opportunity with social interaction
“Just getting them in with a group of kids who have the same thing going on, I wanted them to get to be able to feel that they are not the only one. And to be able to exercise together with them and talk in the meeting”
Staff who are supportive experts; help maintain momentum throughout/after the program
“I am excited about the staff because they seem to be experts in their field, they know what they are doing and they can give us the best advice there is…someone to give me support and give me right answers and someone to lean on. I know the journey will not be perfect. I think one of the things that we will need help on will be to get back on course”
Child learning to independently manage healthy lifestyle
“I am hoping that if she gets the information from other than her parents it will stay with her and encourage her so that when mom and dad are not fixing a meal, she needs to have some self-responsibility as to what she eats.”
Adapting and maintaining healthy lifestyle habits as a family
“It we can start making, as a family, change habits and do them consistently. And we are more active and we can feel we have more energy to do things. Because I feel if we have more energy to do things then things like weight loss and stuff like that would come along with it”
Child’s improved physical, mental and social health
“I think it’s a matter of overall self-worth and well-being, and as teenagers it’s important to have that self-confidence and to feel that they can manage their own goals as well”
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Caregiver Expectations of Family-based Pediatric Obesity Treatment themes, along with illustrative quotes from the interviews. Motivation All caregivers cited specific motivations for enrolling their children in treatment, primarily to improve their children’s physical and mental health. In TC, which required physician referral, more caregivers reported that their children’s physicians encouraged them to start a weight management program. In CB, caregivers reported a mix of intrinsic motivation (self-referral) and extrinsic motivation (physician referral). Caregivers did not discuss their child’s motivation or willingness to enroll in the program beyond short answers of “he is interested” or “he wants to lose weight,” even though this was a question in the interview. Caregivers felt their children were overweight but still healthy, despite having comorbidities. Caregivers also reported that their children had comorbidities associated with being overweight, including high cholesterol, arthritis, and sleep apnea. Few described their children as obese. “Right now I would describe it as being a little too over the normal. I think once he gets a few pounds of it off then he’ll feel better about himself and he’ll be able to do more things with his friends running around and such.” “Other than being overweight, I would say that she is in very good health.” Caregivers expressed worry over their children’s weight, future comorbidities, and mental health. Caregivers’ major concerns related to their children’s weight were focused on mental health and quality of life issues like diminished ability to socialize with peers. When asked about their children’s future health, caregivers were concerned about their children’s ability to manage their weight independently, and expressed fears that their children’s weight status would worsen or lead to additional comorbidities. “I’m worried about her weight and all the stress on her heart with her being heavy.” “I think it makes her a little more self conscious. I think she doesn’t date like other girls her age, and she can’t buy the little tiny clothes from the store that she will like to get.” Children were recently diagnosed with obesity, or children’s weight status had recently worsened. Many caregivers said their children’s doctors were the primary motivators who encouraged them to join a weight management program, citing a ‘red flag moment’: a recent medical visit when the child’s weight had either worsened or had been diagnosed with a weight-related comorbidity. “We’ve been leaving [his weight] in the back of our heads, but as far as motivation it was really the doctor that told me that something with his levels were not right. Then it concerned me, because we do have diabetes and heart disease and high blood pressure, once I heard that my child, that my 9-year-old child, was getting at these levels.” Caregivers were seeking support from a third party. Caregivers themselves felt they lacked the
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ability to influence children to make the necessary changes for weight loss. Thus, the caregivers enrolled their children in a treatment program hoping their children would be more willing to listen and adhere to guidelines specified by medical professionals. “I had been looking for some way to get her involved in weight loss, but she has always pushed it to the side, and said ‘you are picking on me. I don’t want to talk about it’.” Readiness Caregivers demonstrated varying levels of readiness to start an obesity treatment program, based on understanding what the program would entail, commitment to weight management, and confidence in identifying and overcoming potential barriers. Caregivers had a general understanding of their children’s obesity treatment program, but had varying understandings of the commitment required at home. Most caregivers could describe in general what would be involved during visits, including types of activities in which they would participate or what they would be learning. However, some were unsure how weight management would impact behaviors at home, particularly their role in helping their children make changes. For example, some caregivers felt their children would be responsible enough to make better food decisions on their own at home, and perceived that programs would enable children to manage their own health. “…I am no longer the food police for the kids when we sit down to eat. If our table is not a battlefield, then I don’t have to tell my daughter “put that back!” Sometimes I feel she eats because she knows I don’t want her to, and I would like for dinner to be a pleasant time and food not to be an issue.” “…I am looking forward to someone having my back, someone else besides Mom reinforcing what I say. Because when I open my mouth all the children hear is ‘blah blah blah’. When I open my mouth, that’s what everybody hears. So I want somebody else to speak in clear words that they will actually hear.” In contrast, only a few caregivers felt the responsibility to make changes in the home would fall entirely on them, as caregivers identified themselves as the primary food providers in the family. One caregiver felt she would become overwhelmed by the number of changes needed. “…another thing that worries me is that I would be overwhelmed, that I would be responsible for making dinner every night and exercising every time, and be hungry. I am worried about seeing others not making good food choices, and whether or not I say anything or not, how to handle that.” Caregivers were committed to program completion and motivated by recent small successes. Caregivers reported making small changes at home, resulting in small amounts of weight loss, or success in changing habits, which served as encouragement and gave them confidence in making more changes. Most caregivers stated they
Giannini et al were highly committed to completing the weight management program with their children, and described their family as “very likely” to complete the program. For example, when asked how likely the family was to complete the program, nearly all answered “very likely” or “100%. We’re going to make sure we’re going to make every appointment, because this is what my daughter needs and what we need as a family.” But when asked how likely their family was to be successful, not just completing the program, all answered either “likely” or “between 70 - 80%.” Caregivers felt confident they could complete the program, especially those enrolled in communitybased programs, which are generally shorter (1012 weeks vs 12 months). Nonetheless, participants did not feel they would achieve their success measures (weight loss, improved health habits). “ Success? 65%. I would say 100% but we always get on a good start and something detours us.” Logistical issues and programmatic elements were seen as barriers to program adherence. Caregivers’ main anticipated barriers to participating in weight management programs were logistic, such as scheduling conflicts and illness. “The only thing is just making our appointments and being able to get there. You know, being able to get to the appointments, pretty much if I have to. You have to weigh out your options: do I go to the grocery store or do I go to my appointment?” Many participants explained they had already begun to plan ahead or had committed to prioritizing attendance, because they viewed attendance and participation as keys for success. For all programs (particularly the CB, held in the evenings), caregivers felt participation would only cause occasional absences and would not conflict with other responsibilities such as work or school. In fact, caregivers felt that participating in weight management would improve their own work performance and their children’s school performance by affording them more energy. “I hope [the program] helps him rest a little bit better, and have a clearer mind in the morning.” Maintaining momentum during and after the program, and children’s lack of motivation and willingness, were seen as barriers to program adherence. Another major barrier participants identified was maintaining momentum, especially those who were about to enter 12-month tertiary care programs. These caregivers expected staff and clinicians to help them maintain momentum throughout the weight management process. For families entering shorter programs, participants felt confident their families would complete their programs, but worried about maintaining knowledge after the program ended. One participant suggested that post-program follow-up visits would be helpful.
their expectations for their treatment programs. Specifically, caregivers described and explained what they expected of program staff and clinicians. “The right support is there…people who know what they are talking about.” Caregivers expected to learn about healthy lifestyles in the context of family. For caregivers participating in tertiary care programs, many expectations were related to learning how to adopt healthy lifestyle habits for the entire family. Caregivers expected they would receive information about eating healthier, preparing healthy foods, and increasing physical activity. “[We expect] to help him develop healthy habits, and for us, as a family, to have the information we need to make sure we are making the decisions we need to be making to help him…we will develop the good skills for eating and exercise, and give us some goals, so we can change our game plan to make sure that we have a healthier future as a family.” Caregivers expected programs to provide access to comfortable exercise opportunities and social interaction. Caregivers perceived obesity treatment as an opportunity to increase their children’s physical activity, and expected programs to help overcome barriers that would otherwise perpetuate children’s sedentary behaviors. These expectations were related to provision of comfortable exercise environments, access to fitness facilities or alternative forms of exercise, and various free fitness opportunities. Caregivers entering community-based programs also expected that group activities would provide more social interaction and peer support for their children. Caregivers expected staff to be supportive experts who could help maintain momentum during and after program completion. Across all groups, caregivers expected staff to be supportive educators who would increase motivation, provide honest and positive feedback, and assist in meeting behavioral goals. Caregivers in the TC expected staff members to be the experts and give them the information necessary to meet their health goals. “I expect them to give me the best medical advice and training that I know they can give me.” In CB, caregivers also looked to clinic staff to provide high-quality information, but appreciated their familiarity and ability to relate to parents and families from their personal experiences.
Expectations All caregivers made general statements about
Measures of Success Individual measures of success differed between caregivers, and few explicitly indicated weight loss as a measure of success. Most caregivers felt that improvement in their child’s mental health would qualify as a success. Caregivers also expressed hope in losing weight themselves. Caregivers felt that weight management would be successful if their children learned to manage a healthier lifestyle independently, or if their families adopted healthy habits together. Some caregivers expected that by com-
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Caregiver Expectations of Family-based Pediatric Obesity Treatment pletion of the program, their children would gain enough independence to maintain healthy behaviors throughout their life. “…everyone will learn to choose the right things to eat. I don’t want to be the food police, and I won’t have to shoulder so much of the guilt for the whole family being overweight.” Other caregivers defined success more as a learning opportunity for the whole family. These caregivers explained success in terms of learning from the staff and then imparting and implementing new knowledge at home. Many also noted that learning how to lead a healthy lifestyle as a family was an important reason for joining their treatment program. Children’s improved physical, mental, and social health. Improvement in children’s mental health was mentioned most frequently among caregivers as a measure of success, including higher self-esteem. Caregivers also mentioned improved social health, greater willingness and ability to interact with peers, and improvements to children’s overall health and quality of life. “Goals? Losing weight and seeing my daughter’s self-esteem rise.” “I think it’s a matter of overall self-worth and well being, and as teenagers it’s important to have that self-confidence and to feel that they can manage their own goals as well.” “I just want him to be happy.” DISCUSSION This is the first study to investigate perceptions of obesity treatment among caregivers waiting to begin a pediatric weight management program with their children. This qualitative investigation provides a new way of understanding parents’ and caregivers’ expectations and motivations before any behavioral treatment processes begin. Caregivers expressed strong motivations for starting treatment, without certainty of what they would accomplish or whether they would be successful. This discrepancy likely could influence confidence and self-efficacy for making health behavior changes before treatment programs begin. Furthermore, caregivers may be unsure of their role in their children’s behavior change process, specifically for implementing change in the home setting. Many caregivers expected that their children would learn to manage their health independent of the family system, despite the program’s focus on family-based changes.8 There was also the expectation of caregivers to learn about healthy lifestyles and lose weight themselves, with little mention of behavior change, which could indicate an incomplete understanding of the treatment process. Caregiver-reported motivations for joining obesity treatment programs did not align with their own measures of success. For example, caregivers often listed “weight status” as the motivation for enrolling their child in weight management, suggesting that weight loss was their marker of success. Interestingly, caregivers identified improved mental and social health as outcomes as
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better measures of success than improved weight and physical health, and few reported children’s weight loss as a metric of success. Potential explanations of this would be the “referral” nature of the programs; even if located within a primary care setting, children were referred internally for care, or had been recently diagnosed with obesity or obesity-related comorbidity. However, caregivers identified emotional or social concerns in need of addressing within treatment. This could be from a lack of self-efficacy in changing weight or weightrelated behaviors, as many noted less confidence in this arena, or the caregivers greater concern of the immediate social impact that is “symptomatic” in their children: quality of life, friendships, selfesteem, and mood. The Expectance Theory of Motivation (ETM) was used to develop the interview to guide investigation of caregivers’ expectations of treatment, adherence to the treatment program, and what outcomes were initially valued. The themes that emerged during analysis (Motivation, Readiness, Expectations, and Success measures) reflected components of ETM. Expectancy (increased effort yields increased performance) was found in the theme of readiness, where caregivers were unsure of their commitment and role in treatment, and expressed concerns of barriers to their participation. Maintaining momentum in the program was of concern, impeding the effort they could put forth. Instrumentality was found in Readiness (motivated by recent small successes) and Expectations (learning about healthy lifestyles for entire family, experts supporting them and maintaining momentum). The same sub-themes of barriers to participation (Readiness) also map to Instrumentality, impacting the family’s performance in changing lifestyle habits. Finally, Valence can be seen in both the themes of Motivation (value the outcome of improved future physical and mental health, recent diagnosis of comorbidity) and Measures of Success (improved physical, mental and social health). These findings can be compared to our previous work with clinicians from the same obesity treatment programs.8 Clinicians most often reported that participants’ unrealistic measures of success related to weight loss increased families’ frustrations and the likelihood of dropout. The current study contradicted the idea that patients’ goals are solely weight-based, indicating a potential lack of communication between clinicians and parents regarding the goals of weight management, or change in expectations upon initiating treatment. Clinicians also may not be asking about non-weight or non–health related concerns of parents, such as self-esteem or mood. This area of discrepancy may be important for further investigation to improve understanding of attrition from programs. In addition, by focusing on the social-emotional aspects of weight management (self-esteem, peer interaction), which were important to the caregivers interviewed, obesity treatment programs likely could
Giannini et al address children’s self-esteem and social interactions, thereby better aligning with caregivers’ measures of success. A strength of this study is conducting the investigation in the same treatment programs of our previous study,8 in treatmentseeking families of children with obesity, and in a children’s age group most frequently studied in childhood obesity.1 Caregivers entering weight management programs with their children indicated high confidence regarding program completion, and reported few anticipated barriers beyond logistics and scheduling. Thus, further studies should investigate unanticipated barriers that eventually contribute to dropout. Caregivers we interviewed also reported high confidence in their perceived ability to complete their treatment programs, but did not report equal levels of confidence regarding their ability to be successful in behavior change. This finding indicates that parents may not have a thorough understanding of the process of their children’s weight management, or again, may have different expectations for success than those set by the programs. Our findings also indicate discrepancies in expectations between caregivers. Many anticipated that programs would require little commitment and focus mainly on the children, and others expected that programs would be burdensome on parents. Within this spectrum of expectations, a few caregivers viewed the program as a learning opportunity for the entire family, which is most consistent with reports from clinicians in our prior investigation.8 Similarly, many caregivers did not have clear expectations of their role in their children’s treatment programs, or they expressed unrealistic expectations. This could stem from a lack of communication between clinicians and families in the period between referral and the start of weight management. As described previously, parents’ lack of realistic expectations also could stem from insufficient efforts by clinicians to build appropriate expectations; this situation could be improved by increasing clinicians’ focus on relationship-building.23 Further study could aid in understanding the adult caregivers’ role in treatment, and whether addressing that may improve patient and family retention. This study has several implications that could inform practice. Concerns about scheduling were the most common anticipated barriers to program completion. Thus, there is a need for clinics to address scheduling issues proactively, and assist families in securing convenient appointments or scheduling group activities whenever possible. Maintaining momentum was another anticipated barrier to success, which parents expected that program staff would help them overcome. To meet parental expectations and possibly reduce attrition, clinicians could focus on families’ attempts to change behavior, as opposed to their shortcomings. Whereas parents demonstrated understand-
ing of what to expect from treatment, some were unclear as to what commitment was required from them. Therefore, discussions about family, parent, and child roles in weight management, both within the program and at home, could be incorporated as early as possible in the treatment process or at the time of referral. Because many caregivers indicated that their children’s mental health and peer interactions were important, consistent with prior evidence,13 clinicians could consider programmatic elements to foster improvements in self-esteem, self-efficacy and interpersonal interactions. Clinicians also may wish to query patients and parents about other success measures unrelated to weight, so that progress in these areas can be tracked to improve the fit with parent and family expectations. Our study has several limitations, primarily related to its qualitative nature, and requires further exploration and validation via other research methods. However, the methods employed here are appropriate given the exploratory nature of the study, as our objective was to seek and synthesize in-depth information from a broad range of settings and perspectives. Participants were recruited only from North Carolina, and the sample size was small, so our findings are not necessarily representative of all parents and all programmatic settings. However, lack of generalizability is not necessarily a weakness of qualitative research, but results must be taken with caution when applying to different settings and populations.21 Recruitment data were not available, so it is not certain how representative of a sample this was. Only one father was interviewed, so a full understanding of parent perceptions was not possible. A significant limitation is the loss of 12 interviews. This does represent loss of a whole treatment program, and limits the significance of our findings. However, based on handwritten notes from the interviews, we felt responses from parents did reach saturation, even without having all the interview recordings. This study elucidated the unique perspectives of caregivers’ expectations and motivations just before beginning a pediatric obesity treatment program with their children. Findings from this study can be used in proactive approaches to increase family adherence and engagement. These findings could be used to minimize attrition, such as programs assisting parents in overcoming logistical barriers, focusing on each parent and family’s individual success measures, and communicating more extensively with parents and families about their roles in their children’s weight management.
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Human Subjects Statement Study protocols, interview questions, and consent procedures all were reviewed and approved by the Wake Forest University Health Sciences Institutional Review Board (IRB#00012961). Conflict of Interest Statement Dr Skelton has served as a consultant to the
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Caregiver Expectations of Family-based Pediatric Obesity Treatment Nestle Corporation, which was not involved in any aspect of this study. Dr Skelton was supported in part through NICHD/NIH Mentored Patient-Oriented Research Career Development Award (K23 HD061597). Ms Giannini was supported by R25 GM062429 (DI Diz, PI). Acknowledgments The authors thank Karen Klein (Biomedical Services Research and Administration, Wake Forest University Health Sciences) for her assistance in editing this manuscript; and Camila Pulgar for her assistance in the conduct of this study. References
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