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Journal of Health Communication: International Perspectives Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uhcm20
Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being a
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Sheetal Patel , Autumn Shafer , Jane Brown , Cynthia Bulik & Nancy Zucker
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Department of Communication , University of Texas at Arlington , Arlington , Texas , USA
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College of Media and Communication , Texas Tech University , Lubbock , Texas , USA c
School of Journalism and Mass Communication , University of North Carolina at Chapel Hill , Chapel Hill , North Carolina , USA d
UNC Center of Excellence for Eating Disorders, Department of Psychiatry , School of Medicine, University of North Carolina at Chapel Hill , Chapel Hill , North Carolina , USA e
Duke Center for Eating Disorders, Department of Psychiatry and Behavioral Sciences , School of Medicine, Duke University , Durham , North Carolina , USA Published online: 31 Dec 2013.
To cite this article: Sheetal Patel , Autumn Shafer , Jane Brown , Cynthia Bulik & Nancy Zucker (2014) Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being, Journal of Health Communication: International Perspectives, 19:5, 593-608, DOI: 10.1080/10810730.2013.821559 To link to this article: http://dx.doi.org/10.1080/10810730.2013.821559
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Journal of Health Communication, 19:593–608, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 1081-0730 print/1087-0415 online DOI: 10.1080/10810730.2013.821559
Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being
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SHEETAL PATEL Department of Communication, University of Texas at Arlington, Arlington, Texas, USA
AUTUMN SHAFER College of Media and Communication, Texas Tech University, Lubbock, Texas, USA
JANE BROWN School of Journalism and Mass Communication, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
CYNTHIA BULIK UNC Center of Excellence for Eating Disorders, Department of Psychiatry, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
NANCY ZUCKER Duke Center for Eating Disorders, Department of Psychiatry and Behavioral Sciences, School of Medicine, Duke University, Durham, North Carolina, USA Parents of children with eating disorders experience extreme emotional burden because of the intensity and duration of the recovery process. While parental involvement in a child’s eating disorder treatment improves outcomes, parents often neglect their own well-being, which can impede their child’s recovery. This study extends the research on caregivers and on health theory in practice by conducting formative research to develop a theory-based communication intervention encouraging parents to engage in adaptive coping and self-care behaviors. The Transactional Model of Stress and Coping and the Transtheoretical Model guided qualitative assessments of the determinants of parents’ coping behaviors. Three focus groups with 19 parents The authors thank the Carnegie Knight Foundation for the Carnegie-Knight Initiative on the Future of Journalism Grant and the University of North Carolina at Chapel Hill for the School of Journalism and Mass Communication developmental grant, both of which made this study possible. Address correspondence to Sheetal Patel, University of Texas at Arlington, Department of Communication, 700 W. Greek Row Drive, 118 Fine Arts Building, Arlington, TX 76019, USA. E-mail: [email protected]
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of children with eating disorders and 19 semi-structured interviews with experts specializing in eating disorders were conducted. Findings indicate that parents and experts see parents’ need for permission to take time for themselves as the main barrier to self-care. The main motivator for parents to engage in coping behaviors is awareness of a connection between self-care and their child’s health outcomes. Participant evaluation of six potential messages for main themes and effectiveness revealed that theory-based elements, such as certain processes of change within the Transtheoretical Model, were important to changing health behavior.
The majority of eating disorders, which affect more than 11 million people with anorexia nervosa and bulimia nervosa, millions more with binge-eating disorders, and an undetermined number of people with an eating disorder not otherwise specified in the United States, begin in adolescence (Engel, Staats Reiss, & Dombeck, 2007; Hoek & van Hoeken, 2003; National Eating Disorder Association, 2005). Eating disorders are serious psychiatric disorders caused by complex interactions of genetic and environmental factors (Bulik, 2004; Bulik, Slof-Op’t Landt, van Furth, & Sullivan, 2007) with the median age of onset between 12–13 years old for the national population aged 12–18 years (Swanson, Crow, LeGrange, Swendsen, & Merikangas, 2011). For adolescents who suffer from an eating disorder, parents are typically the main caregivers, even when the eating disorder lasts through adulthood. Relapse is common, and the trajectory of an eating disorder can span an entire lifetime. Parental involvement in treatment improves eating disorder outcomes (Bulik, Berkman, Brownley, Sedway, & Lohr, 2007); however, parents often neglect their own well-being while caring for their child. Parents of children with eating disorders can experience extreme emotional burden. This caregiver stress and anxiety arises from the many facets of parents’ lives affected by the eating disorder (e.g., Kyriacou, Treasure, & Schmidt, 2008; Loth, NeumarkSztainer, & Croll, 2009; Winn et al., 2004). Because eating disorders can often be chronic and resistant to treatment, caregivers are likely to be involved in a prolonged, challenging process of care (e.g., Graap et al., 2008; Haigh & Treasure, 2002). In many cases, parents are involved in administering treatment (e.g., refeeding meal by meal a child with anorexia nervosa). Parents report negative effects of eating disorders on the family, stress in dealing with difficult eating-related behaviors, stress over the dependent nature of patients, social stigma associated with eating disorders, and shame (Treasure et al., 2001). Parents experience distress, guilt, helplessness, and anxiety over not knowing how best to help their child (Whitney et al., 2005). Research suggests the development and maintenance of adaptive coping behaviors (often called self-care) can ultimately aid in a child’s recovery because parents will be energized, confident, and better able to participate in recovery (e.g., Kyriacou, Treasure, & Schmidt, 2008; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Zucker, Ferriter, Best, & Brantley, 2005). Examples of effective adaptive coping behaviors include participating in parent skills groups, taking personal time away from caregiving (e.g., reading, walking, sleeping, meditation), and talking to supportive others (e.g., partner, friend, personal therapist). Little research exists on what may persuade a parent of a child with an eating disorder to adopt healthy coping behaviors, especially in an environment that incorrectly blames parents of children with eating disorders because of disease stigma. The present study presents the formative research conducted to develop health communication messages for an intervention to encourage parents to engage in self-care, which was initiated by a university-affiliated eating disorder treatment program. Messages were
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developed to be placed in eating disorders clinics and surrounding hospital systems. The formative research goals were to (a) better understand how a child’s eating disorder affects the parent’s life and well-being, (b) discover and understand the main barriers and motivations parents experience to engaging in adaptive coping behaviors, and (c) determine perspectives and reactions to draft messages that encouraged self-care.
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Theory-Guided Message Design Building on previous research on eating disorder caregivers, two theoretical frameworks were used to guide formative research: the Transactional Model of Stress and Coping (Stress and Coping Model) and the Transtheoretical Model of Behavior Change (Transtheoretical Model). The Stress and Coping Model states that people move through two initial steps when processing and coping with stressful events (Wenzel, Glanz & Lerman, 2008). First, a person engages in a primary appraisal, evaluating the significance, controllability, and potential impact of the stressor. Next, a person completes a secondary appraisal, assessing his or her own ability and options for coping with the stressor. Parents may know that they are stressed (primary appraisal) but feel like they cannot do anything about it because there are too many barriers to self-care (secondary appraisal). Using the Stress and Coping Model to develop messages highlights the importance of conducting formative research to identify life impacts and key barriers to self-care. The Transtheoretical Model provides constructs that inform our understanding of how prepared parents may be to engage in self-care and which elements in a health communication message might be most effective at moving them through stages of readiness (Prochaska, Redding, & Kerry, 2008). Applying the Transtheoretical Model to our research suggests that parents could be in the following stages of engaging in self-care: (a) precontemplative (no thought of engaging), (b) contemplative (thinking about engaging), (c) preparation (made plans to engage), (d) action (have engaged recently), and (e) maintenance (engage regularly). The Transtheoretical Model includes the processes of change that motivate progression between the stages. The processes relevant to the present study and examples as applied to parents of children with eating disorders can be seen in Table 1. The predictive ability of these processes is unclear (Prochaska et al., 2008); however, they provide a basis from which to conduct formative research. For example, consciousness raising is important for parents of children with eating disorders, who have explicitly stated a need for information. Thus, it may be important to give parents information on resources to move from the precontemplative to contemplative stage. Formative Research The Stress and Coping Model and the Transtheoretical Model guided us to what information may be helpful to learn from participants (i.e., life impacts, barriers, motivations) and in the creation of preliminary message concepts for testing. Formative research includes preproduction research and pretesting (production) research (Atkin & Freimuth, 2001; Maddok, Silbanuz, & Reger-Nash, 2008, Noar, 2006; Shafer, Cates, Diehl, & Hartmann, 2011). Preproduction research refers to studying a target audience’s perspectives and behavior surrounding a particular health issue, which is useful in informing message content and tone. Pretesting research refers to the study of a target audience’s responses to developed messages.
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Table 1. Relevant processes of change as applied to parents of children with eating disorders Processes of change
Definition
Example for parents of a child with an eating disorder
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Consciousness raising
Learning new information Needed because of parent’s to support behavior explicitly stated need for change information in previous caregiver research Environmental Seeing positive/negative Connecting self-care to not only revaluation impact of health/ an ill child’s health outcomes unhealthy behavior on but also improvement in environment affected family dynamics Self-reevaluation Behavior change is part of Making self-care part of one’s idea identity of self-health and well-being Social-liberation Realizing that social norms Parents of a child with an eating are changing in direction disorder need to see that of supporting health treatment teams and society behavior encourage parent care Self-liberation Making a commitment to Knowing internally that self-care is change needed and is okay to engage in Dramatic relief Experiencing negative Reminding parents of their stress emotions that result from and anxiety’s effect on their unhealthy behavior risk child’s health outcomes Helping relationship Use of support from others Given social isolation, parents while trying to change need to find social support from behavior people they trust Note. Definitions adapted from Prochaska, Redding, and Evers (2008)
Method Participants Three focus groups with parents of children with eating disorders (N = 19; 15 mothers, 4 fathers) and 19 interviews with experts specializing in eating disorders (8 clinical psychologists, 3 nurses, 2 dietitians, 2 general practitioners, 2 family social workers, and 2 psychiatrists) were conducted in a Southeastern city. Parents’ children ranged from adolescents to adults, the majority of whom were still in treatment. Parents were recruited by referral through clinicians and posted fliers and received US$10. The majority of participants were female, reflecting what we learned from the expert interviews that the majority of eating disorder parent caregivers in the participating programs were women. Although previous research (e.g., Kyriacou et al., 2008) has found gender differences, such as in caregiver burden and distress, both experts and focus group participants did not indicate any gender differences in type of self-care messages needed. Participants did indicate potential differences in level of involvement in caregiving, with mothers feeling more involved than fathers. Experts specializing in eating disorders were recruited by e-mail from three well-known eating disorder programs. Experience working with eating disorders ranged from 2 to 28 years. Participants were
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told directly during recruitment what the study was about and consented in accordance with institutional review board approval.
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Procedures The director (clinical psychologist) of one of the eating disorder programs moderated each focus group, which included 5–9 parents, and took place in a conference-style room at two of the eating disorder program facilities, lasting 1.5 to 2 hours. The first focus group was purely preproduction research. In the second and third focus groups, the first half of the session was preproduction research, while the second half of the discussion was production research, where parents were shown 11 × 17 color posters containing messages that were developed on the basis of insights from the literature review, guiding theories, and the first focus group. Messages were further revised between the second and third focus group. Two of the authors conducted the in-person interviews with experts. These interviews ran in a similar fashion to the second wave of focus groups and lasted 30 to 45 minutes. Interviews occurred during the same months as the focus groups, and thus, messages changed after the second focus group were also changed for remaining interviews. The questionnaire guides for the focus groups and interviews assessed the following concepts from the perspective of both parents and eating disorder experts: (a) experience with eating disorders; (b) impact of the eating disorder on parents’ lives; (c) self-care behaviors and barriers and motivators to engaging in these coping behaviors; (d) source preferences and information seeking; and (e) message ideation and evaluation, including reactions to design/content, main message identification and effectiveness, and suggestions for improvement. Health Message Concepts Several executions of two concepts (I am not afraid and Support for a father) were tested. The main message was embodied by the tagline that stated, “Caring for yourself is caring for your child,” which was based on eating disorder research and findings from the first focus group showing parents’ main priority is caring for their child. I Am Not Afraid This execution style (see Appendix A) addressed the social and self-liberation processes of change by directly opposing the secrecy and stigma surrounding eating disorders with the headline, “My child has an eating disorder, and I am not afraid to talk about it.” Two executions were tested, a black-and-white photo of a middle-aged mother and another with a younger mother both looking directly at the camera. The copy first validated parents’ feelings and then provided a reason for engaging in coping behaviors that would help ameliorate these feelings (dramatic relief and secondary appraisal). The main benefit of self-care was stated clearly in the tagline (self/environmental reevaluation and secondary appraisal). Support for a Father This execution style (see Appendix B) represented a more consequence-based approach and addressed environmental reevaluation. The original headline stated, “I have an eating disorder, and when my dad found support for himself, he was better able to help me and my family.” The original execution was from the affected child’s point of view encouraging parents to engage in self-care (helping relationship/environmental
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reevaluation). Different pictures were used and changed between focus groups and the point of view was switched from recovered child to parents—focusing on the father. The revised headline read, “Our child has an eating disorder and when we found support, we were better able to take care of our whole family.” The final four executions were as follows: a family hugging, a father’s hands forming a roof for his family’s hands, a father and daughter, and a daughter.
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Overview of Qualitative Data Analysis Constant comparative method was used to create a codebook and systematically analyze the transcribed interviews and focus groups (Lindlof & Taylor, 2002). Two coders developed and refined the codebook and evaluated disagreements, by coding the first four interviews independently using Atlas.ti, qualitative analysis software. After each round of coding, agreement was measured and disagreements were discussed. By the fourth round of coding, interviews reached 90% agreement. The remaining interviews were then divided amongst the coders. Both coders independently coded all of the focus groups. Since focus group participants expressed a wider range of responses than experts, leaving more room for interpretation when coding, agreement levels reached 60%. Consensus coding was used to resolve differences among the coders and create one master set of coded transcripts (Hruschka et al., 2004; Rothman, Bartels, Wlaschin, & Salovey, 2006).
Preproduction Findings The major themes discussed below are listed in Table 2. Life Impacts It was expressed numerous times (three fourths of the interviews and all of the focus groups) that the effects of having a child with an eating disorder reached every corner of a parent’s life, changing all aspects. Changes in family dynamics, relationships, work, financial security, and even parent eating habits were due to having a child with an eating disorder that needed constant care. Barriers to Self-Care Most of what parents and experts revealed was very similar or directly connected. For example, parents’ perceived barrier of lack of information on eating disorders related to experts being challenged in having some parents recognize the seriousness of the illness. The main difference between the two groups was the level of emphasis placed on certain expressed barriers, life impact, and parent feelings. Parents mainly mentioned psychological barriers to self-care, including emotional burden, stress, and blame. They needed permission to engage in self-care. The lack of knowledge and awareness of resources was also a significant barrier. Although experts mentioned these barriers, such as the need for permission, they emphasized logistical barriers and life impacts, including time and financial hardship. Stigma and Isolation Social isolation was said to emanate from stigma related to eating disorders. This stigma originates from the misguided belief by people who are not affected that eating
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Table 2. Major themes regarding the views of parents of children with eating disorders on engaging in self-care activities Preproduction
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Barriers Parent-expressed barriers • Child’s eating disorder affected all aspects of parent’s life, making it hard to participate in self-care, e.g., relationships, work life • Stigma and isolation • Lack of information on illness and selfcare • Feeling selfish, blamed, and emotional stress • Need for permission Expert-expressed barriers • Lack of time • Financial hardship • Secrecy of illness
Pretesting Motivations
Message concepts
Motivations • Helping child recover • Talking with other parents of children with eating disorders • Desire to be a role model for child • Validation • Professionals giving permission • Trusted sources giving information
Effective components • Main message clarity • Tagline • Emotional impact and authenticity • Breaking silence statement • Whole family acknowledged • Parents could relate to parents in photos • Other eating disorder parents as message source
Unmotivating factors • Blaming parent • Unsolicited advice from people with no experience with eating disorders
Improvements needed • Call-to-action should be more prominent • Emphasize helping relationships • Include source recommendations • Discontinue child as message source • Remove any hint of blaming language • Include examples of selfcare activities • Enlarge resource links • Reduce text
disorders are easy to cure. Therefore, family and friends placed blame on parents, as they were not able to control their child’s eating habits. So there’s that whole stigma and then it’s this thing that people can’t understand because everybody pretty much loves to eat. You know? And how can you not want to eat that … so all of these like huge factors. (Parent) In addition, children with the eating disorder wanted their disorder kept secret, often forbidding parents to speak about the problem. This made social networks unavailable (e.g., family, friends). Without social networks available and the inability to talk about it, many parents expressed difficulty in coping and keeping healthy relationships, such as spousal relations. Well for us, she didn’t want us to say anything to anybody … So nobody, nobody except our family knows so I had nobody locally to talk to and
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I’ve kept that, you know, I have, there were so many times where I just was like I had this one friend it’s like I’m just going to tell her. It’s like I can’t do that. There’s this, you know, unspoken rule that you’ve made with your daughter so, you know, I have my sisters but that was hard. (Parent) Lack of Information A severe lack of information existed from a parental point of view. Parents were unable to find information on the illness and what they could do to help their child. Experts, although realizing parents wanted information, did not express any expectations that parents would have difficulty finding information. This denotes a discrepancy that might be part of why parents are not aware of or able to access resources available to them through eating disorder programs. Experts also expressed that parents simply had a lack of knowledge regarding the course of the illness and its longevity, which proved to be a challenge when trying to convince parents to go to therapy or participate in a support group or hobby of their own because parents did not realize how long they would be involved in caregiving. Time The most common barrier mentioned by experts was time, although some parents also mentioned time. Well, time might be a factor. They spend so much time dealing with their child if they’re going to outpatient therapy. I mean, there’s the dietician, the psychologist, the psychiatrist. My goodness, that takes a lot of time. And then they’re so vigilant regarding their child that they’re, it leaves little time for themselves. (Expert) Given demands on a parent’s time (e.g., meal-planning, therapy, medical appointments), time is scarce. This is related to other logistical barriers expressed, including financial hardship resulting from loss of work time and treatment expenses, lack of energy, and other siblings needing parental attention. Feeling Selfish, Blamed, and Emotional Stress Parents expressed the barrier of time as part of a different factor: the need to invest their time in their child’s recovery and that they would feel selfish taking time to care for themselves. Permission to engage in self-care was needed, because time away from their child was less time spent helping them recover, in addition to feeling blamed that parents had caused the problem. The majority of parents were not aware of the fact that self-care would ultimately help their child, as was identified by parents not mentioning this as a benefit of self-care when asked. It [self-care] was recommended to me but I never did it. I felt like I couldn’t focus on me until I knew she was okay, that she was in an okay place. I couldn’t focus on me at all. (Parent) If there’s other children they may not want to, and one child is taking up so much of their time, they may feel guilty giving themselves time because they think the other kids need time, and it’s not fair. (Expert)
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For some, these feelings meant parents believed they did not deserve to make themselves feel better. For others, it meant they were fearful of seeking support from others because whoever is providing the support might tell them that they are at fault for their child’s illness or are doing something wrong by seeking self-support or in how they are helping to treat the illness.
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I kind of have gotten the message sometimes that parents are half expecting that if they join any of these activities that they’re going to be told that they’re doing something wrong or there’s something that they should have been doing different or they’ve done something to create the eating disorders. (Expert) This sense of not having permission was further exacerbated by the emotional stress and strain parents shouldered. As such, another barrier to self-care was the emotional burden that parents face. The most common feelings mentioned by parents were stress and anxiety followed by guilt and blame, feeling overwhelmed, and being scared for many reasons. Other feelings were related to anger, helplessness, and shame. These feelings stopped parents from participating in self-care, as they believed if they did, it might intensify these emotions. I would find the emotion welling up and just wanting to spill over. And that wasn’t the time or the place for it. It wasn’t about me. And so I wish I had done that [self-care]. But in the middle of everything, trying to come over here every day and spend as much time with her as we could, even if I had to repeat it I don’t know that I would have that to go to. I still don’t think I would do it. (Parent) I just had so much anxiety over the fact that here was my daughter who was suffering with such a great problem. It just really overwhelmed me. I don’t know that I could have done anything about caring for myself at that point. (Parent) Motivators to Self-Care When asked to define coping behaviors (self-care), both parents and experts listed basic healthy behaviors. In other words, sleep, eating correctly, getting exercise, and balance were important for parent well-being. The self-care behaviors mentioned as the most important were creating time separate from their child to deal with their own emotions and to maintain their own identity. For parents, this meant involving themselves in activities or hobbies, whereas experts also mentioned obtaining a therapist. Invoking a social support network was important, which meant talking with friends, family, professionals, and other parents going through similar experiences. Helping Child Recover Given these coping behaviors and benefits, as well as the barriers previously presented, it followed that the most important motivator for parents was demonstrating the connection between self-care behaviors and improvement in their child’s health. I think the thing that motivates them the most is their love for the child and wanting to do the right thing for their child. (Expert)
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If parents knew that engaging in self-care behaviors, such as taking a walk, could improve their child’s recovery process, they would be more motivated to overcome logistical and psychological barriers. Both parents and experts stated one motivator would be to let parents know they needed to be a role model for healthy coping so that their children would know what healthy behavior looked like. Validation Feelings of isolation and wanting support were connected to the self-care activity of talking with other parents. Hearing other parents go through the same experiences gave parents reassurance that they were not alone, that their feelings were validated, that it was possible to cope, that self-care might lower stress and anxiety, and most importantly, the parent would be better able to help their child recover. This may reflect parents’ need for an emotional outlet for themselves, and a safe place to receive support. Permission Another motivating factor was professionals emphasizing a self-care requirement and need for parents to engage in coping behaviors. Parents in the focus groups who had previously participated in a parent support group related that they had no motivation to participate until they were told they were required to as part of their child’s treatment in a particular eating disorder program. Well, obviously for me, the taking care of myself as a means, I guess that gave me permission, the fact that I knew that it would model for her, it gave me permission to do it. Maybe I needed that. (Parent) Trusted Sources This relates directly to sources of messages parents find most motivating, credible, and understanding. The three main sources were professionals (especially doctors and therapists), other parents with children already recovered from an eating disorder, and a child recovered from an eating disorder. In my experience typically physicians trump. So whatever they say in terms of recommendation for their child, anything that the parents can do, sometimes, will ask the physicians, you know, if they can help us endorse certain messages. (Expert)
Production Findings Theory-Based Message Reactions Findings often reflected the theoretical frameworks that informed the message design. The main message in both concepts, “Caring for yourself is caring for your child,” was well received. Often, before participants saw drafted messages, they uttered something similar to the tagline. It serves to reframe behaviors parents see as selfish (caring for themselves) as a component of the most powerful motivating factor (wanting to
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care for their child). This reframing may be related to the self-reevaluation process of change by positioning self-care as a core aspect of a parent’s identity, being a good caregiver while helping parents overcome a key barrier to self-care (feeling selfish). Participants responded positively to the validation of feelings in the messages, which was aligned with dramatic relief as a process of change in the Transtheoretical Model and also based on the secondary appraisal stage in the Stress and Coping Model.
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I think it validates how they’re feeling, so this I feel guilty, I feel stress, I’m anxious, so I think that helps people. Yes, yes, yes, I’m feeling that way. I’m feeling like it’s taking over my life. Yes, yes, yes, I’m overwhelmed. But here’s the hopeful part of it—there’s some support out there. (Expert) One theoretical concept that parents frequently mentioned should be more present in the messages was the need for helping relationships (process of change). Parents wanted the message to be endorsed by members of their child’s treatment team and had a strong desire for social support. Parents and experts agreed that there is a lack of these types of messages for parents and that they would be helpful in prompting action (conscious raising process of change). You gotta realize that any of this is far better than what’s out there, which is like a big nothing. (Parent) If we had seen this up in inpatient, we would have been all over it. (Parent) Concept Execution Feedback I Am Not Afraid Parents felt the messages communicated that they are not alone in experiencing their feelings, and that parents should not feel guilty for finding support, thus addressing key barriers and the need to recognize the importance of self-care. The headline, “My child has an eating disorder and I’m not afraid to talk about it” was well received by both parents and experts. It encouraged parents to break the silence they may have faced in attempting to obtain support (see Appendix A for sample execution). It’s like when someone says, well my daughter has an eating disorder, and I’m not afraid to talk about it … Cause I need to talk about this with someone, because the first thing that happens is you hide it. Or, you know, it’s all about secrecy and hiding. (Parent) Participants found this message important and powerful, especially in conjunction with the photo of the middle-aged woman, as she looked confident. The middle-aged woman was liked more than the younger appearing woman, primarily because participants thought she looked more relatable. Support for a Father The main message was clear and found to be effective by participants in that a father needs support, and this support will help his daughter and the rest of the family through the recovery process (see Appendix B for sample execution). This one will prompt fathers to look into some resources. It is warm and encouraging, [it will] plant seeds of hope. (Expert)
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However, some parents and experts conveyed that the message could be taken as blaming the father, which would be entirely unmotivating for fathers. I have to pause. It’s like seeing the ad might make some of our parents and patients feel guilty. (Experts)
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In addition, the copy was interpreted to imply that the father had found support after the child recovered rather than during the recovery process. These two elements were important to change. I guess if I had one critique … it’s the, how it’s phrased about “you’ve been there for me all along.” It sort of sounds like well now that you’ve gone through the whole thing with me, now it’s time to take care of your … and that’s just how it hit my brain … And that’s not the message. It almost sounds like, hey I’m better, now it’s your turn. (Parent) Parents and experts preferred the photo of the family hugging each other. Some people related that the race of the family was ambiguous, thus allowing more people to relate to the photo. The majority of parents and experts liked the idea of having the entire family pictured rather than only a father and daughter or a daughter alone. On the middle one that has the family hugging, I think it does get to that message, caring of yourself is caring for your child. I think that’s very powerful. (Experts) I like the whole family best if I had to choose. (Parent) Revision was needed for this set of executions in regards to the text and targeting clarity. This message targets dads in particular, but it could be anyone, the message should just signify support from a family member in general to be applicable to everyone. (Experts) The voice coming from a child was not seen as authentic by experts and parents, since children with eating disorders were unlikely to be expressing supportive messages about their parents taking care of themselves in the midst of dealing with a life-threatening illness. The child is so distraught and wrapped up in their illness it seems odd that she would be so focused on what her father needs. (Experts)
General Discussion The findings provided an understanding about the beliefs and attitudes of parents of children with eating disorders toward self-care and the message executions. Parents and experts related the main barriers to engaging in coping behaviors were need for permission (rooted in lack of time, lack of information on self-care, and feeling selfish and blamed) and the main motivator for self-care was the affected child’s health. The execution containing a middle-aged woman and the execution showing a family
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hugging were well received by the majority of participants. Two elements that parents and experts responded positively to, validating feelings and addressing barriers to selfcare, were derived from concepts in the Stress and Coping Model, which is to acknowledge the primary stressor and then to move parents from the secondary appraisal stage by removing barriers. The processes of change the messages embodied, including social-liberation, selfliberation, consciousness raising, helping relationships, environmental reevaluation, self-revaluation, and dramatic relief were well received and important to move parents through the first two stages of the Transtheoretical Model (Wenzel, Glanz, & Lerman, 2008). The headline of “I am not afraid to talk about it,” a sign of social and selfliberation was thought to be very powerful and likely to grab the attention of isolated parents. Since these parents were high information seekers, it makes sense that the consciousness raising, or the resource information, was mentioned as key to helping parents move from feelings of helplessness to hope. Self-reevaluation and environmental revaluation were embodied in the ad as the tagline, “Caring for yourself is caring for your child.” It gave parents the ultimate reason for engaging in self-care activities. On the basis of formative research findings, the revisions included shortening the copy, explicitly stating permission from experts, and more examples of self-care to cue specific actions. The father-centric execution was further revised to remove any language seen as blaming, to focus on the whole family rather than the father, and to change the voice to be from the perspective of parents of a recovered child rather than the child’s voice. Conclusions This formative research is an example of how theory can be used to guide message design for a health communication intervention for parents of children with eating disorders. A key lesson learned was that when it comes to persuading parents to engage in self-care, message elements should be related directly to barriers and motivators for parents. Explicitly stating that caring for oneself is a means of helping a child recover is imperative for supporting parents of children with eating disorders in their efforts to cope with caregiving and help with their child’s recovery. Some of these research findings may be relevant beyond caregivers who are parents of children with eating disorders, and also inform us about the potential message strategies that may help promote self-care among other caregivers (e.g., adults caring for their elderly parents).
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Winn, S., Perkins, S., Murray, J., Murphy, R., & Schmidt, U. (2004). A qualitative study of the experience of caring for a person with bulimia nervosa. Part 2: Carers’ needs and experiences of services and other support. International Journal of Eating Disorders, 36, 269–279. Zucker, N., Ferriter, C., Best, S., & Brantley, A. (2005). Group parent training: A novel approach for the treatment of eating disorders. Eating Disorders, 13, 391–405.
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Appendix A: “I Am Not Afraid” Message Execution
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Appendix B: “Support for a Father” Message Execution
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Journal of Health Communication: International Perspectives Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uhcm20
Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being a
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Sheetal Patel , Autumn Shafer , Jane Brown , Cynthia Bulik & Nancy Zucker
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Department of Communication , University of Texas at Arlington , Arlington , Texas , USA
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College of Media and Communication , Texas Tech University , Lubbock , Texas , USA c
School of Journalism and Mass Communication , University of North Carolina at Chapel Hill , Chapel Hill , North Carolina , USA d
UNC Center of Excellence for Eating Disorders, Department of Psychiatry , School of Medicine, University of North Carolina at Chapel Hill , Chapel Hill , North Carolina , USA e
Duke Center for Eating Disorders, Department of Psychiatry and Behavioral Sciences , School of Medicine, Duke University , Durham , North Carolina , USA Published online: 31 Dec 2013.
To cite this article: Sheetal Patel , Autumn Shafer , Jane Brown , Cynthia Bulik & Nancy Zucker (2014) Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being, Journal of Health Communication: International Perspectives, 19:5, 593-608, DOI: 10.1080/10810730.2013.821559 To link to this article: http://dx.doi.org/10.1080/10810730.2013.821559
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Journal of Health Communication, 19:593–608, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 1081-0730 print/1087-0415 online DOI: 10.1080/10810730.2013.821559
Parents of Children With Eating Disorders: Developing Theory-Based Health Communication Messages to Promote Caregiver Well-Being
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SHEETAL PATEL Department of Communication, University of Texas at Arlington, Arlington, Texas, USA
AUTUMN SHAFER College of Media and Communication, Texas Tech University, Lubbock, Texas, USA
JANE BROWN School of Journalism and Mass Communication, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
CYNTHIA BULIK UNC Center of Excellence for Eating Disorders, Department of Psychiatry, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
NANCY ZUCKER Duke Center for Eating Disorders, Department of Psychiatry and Behavioral Sciences, School of Medicine, Duke University, Durham, North Carolina, USA Parents of children with eating disorders experience extreme emotional burden because of the intensity and duration of the recovery process. While parental involvement in a child’s eating disorder treatment improves outcomes, parents often neglect their own well-being, which can impede their child’s recovery. This study extends the research on caregivers and on health theory in practice by conducting formative research to develop a theory-based communication intervention encouraging parents to engage in adaptive coping and self-care behaviors. The Transactional Model of Stress and Coping and the Transtheoretical Model guided qualitative assessments of the determinants of parents’ coping behaviors. Three focus groups with 19 parents The authors thank the Carnegie Knight Foundation for the Carnegie-Knight Initiative on the Future of Journalism Grant and the University of North Carolina at Chapel Hill for the School of Journalism and Mass Communication developmental grant, both of which made this study possible. Address correspondence to Sheetal Patel, University of Texas at Arlington, Department of Communication, 700 W. Greek Row Drive, 118 Fine Arts Building, Arlington, TX 76019, USA. E-mail: [email protected]
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of children with eating disorders and 19 semi-structured interviews with experts specializing in eating disorders were conducted. Findings indicate that parents and experts see parents’ need for permission to take time for themselves as the main barrier to self-care. The main motivator for parents to engage in coping behaviors is awareness of a connection between self-care and their child’s health outcomes. Participant evaluation of six potential messages for main themes and effectiveness revealed that theory-based elements, such as certain processes of change within the Transtheoretical Model, were important to changing health behavior.
The majority of eating disorders, which affect more than 11 million people with anorexia nervosa and bulimia nervosa, millions more with binge-eating disorders, and an undetermined number of people with an eating disorder not otherwise specified in the United States, begin in adolescence (Engel, Staats Reiss, & Dombeck, 2007; Hoek & van Hoeken, 2003; National Eating Disorder Association, 2005). Eating disorders are serious psychiatric disorders caused by complex interactions of genetic and environmental factors (Bulik, 2004; Bulik, Slof-Op’t Landt, van Furth, & Sullivan, 2007) with the median age of onset between 12–13 years old for the national population aged 12–18 years (Swanson, Crow, LeGrange, Swendsen, & Merikangas, 2011). For adolescents who suffer from an eating disorder, parents are typically the main caregivers, even when the eating disorder lasts through adulthood. Relapse is common, and the trajectory of an eating disorder can span an entire lifetime. Parental involvement in treatment improves eating disorder outcomes (Bulik, Berkman, Brownley, Sedway, & Lohr, 2007); however, parents often neglect their own well-being while caring for their child. Parents of children with eating disorders can experience extreme emotional burden. This caregiver stress and anxiety arises from the many facets of parents’ lives affected by the eating disorder (e.g., Kyriacou, Treasure, & Schmidt, 2008; Loth, NeumarkSztainer, & Croll, 2009; Winn et al., 2004). Because eating disorders can often be chronic and resistant to treatment, caregivers are likely to be involved in a prolonged, challenging process of care (e.g., Graap et al., 2008; Haigh & Treasure, 2002). In many cases, parents are involved in administering treatment (e.g., refeeding meal by meal a child with anorexia nervosa). Parents report negative effects of eating disorders on the family, stress in dealing with difficult eating-related behaviors, stress over the dependent nature of patients, social stigma associated with eating disorders, and shame (Treasure et al., 2001). Parents experience distress, guilt, helplessness, and anxiety over not knowing how best to help their child (Whitney et al., 2005). Research suggests the development and maintenance of adaptive coping behaviors (often called self-care) can ultimately aid in a child’s recovery because parents will be energized, confident, and better able to participate in recovery (e.g., Kyriacou, Treasure, & Schmidt, 2008; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Zucker, Ferriter, Best, & Brantley, 2005). Examples of effective adaptive coping behaviors include participating in parent skills groups, taking personal time away from caregiving (e.g., reading, walking, sleeping, meditation), and talking to supportive others (e.g., partner, friend, personal therapist). Little research exists on what may persuade a parent of a child with an eating disorder to adopt healthy coping behaviors, especially in an environment that incorrectly blames parents of children with eating disorders because of disease stigma. The present study presents the formative research conducted to develop health communication messages for an intervention to encourage parents to engage in self-care, which was initiated by a university-affiliated eating disorder treatment program. Messages were
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developed to be placed in eating disorders clinics and surrounding hospital systems. The formative research goals were to (a) better understand how a child’s eating disorder affects the parent’s life and well-being, (b) discover and understand the main barriers and motivations parents experience to engaging in adaptive coping behaviors, and (c) determine perspectives and reactions to draft messages that encouraged self-care.
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Theory-Guided Message Design Building on previous research on eating disorder caregivers, two theoretical frameworks were used to guide formative research: the Transactional Model of Stress and Coping (Stress and Coping Model) and the Transtheoretical Model of Behavior Change (Transtheoretical Model). The Stress and Coping Model states that people move through two initial steps when processing and coping with stressful events (Wenzel, Glanz & Lerman, 2008). First, a person engages in a primary appraisal, evaluating the significance, controllability, and potential impact of the stressor. Next, a person completes a secondary appraisal, assessing his or her own ability and options for coping with the stressor. Parents may know that they are stressed (primary appraisal) but feel like they cannot do anything about it because there are too many barriers to self-care (secondary appraisal). Using the Stress and Coping Model to develop messages highlights the importance of conducting formative research to identify life impacts and key barriers to self-care. The Transtheoretical Model provides constructs that inform our understanding of how prepared parents may be to engage in self-care and which elements in a health communication message might be most effective at moving them through stages of readiness (Prochaska, Redding, & Kerry, 2008). Applying the Transtheoretical Model to our research suggests that parents could be in the following stages of engaging in self-care: (a) precontemplative (no thought of engaging), (b) contemplative (thinking about engaging), (c) preparation (made plans to engage), (d) action (have engaged recently), and (e) maintenance (engage regularly). The Transtheoretical Model includes the processes of change that motivate progression between the stages. The processes relevant to the present study and examples as applied to parents of children with eating disorders can be seen in Table 1. The predictive ability of these processes is unclear (Prochaska et al., 2008); however, they provide a basis from which to conduct formative research. For example, consciousness raising is important for parents of children with eating disorders, who have explicitly stated a need for information. Thus, it may be important to give parents information on resources to move from the precontemplative to contemplative stage. Formative Research The Stress and Coping Model and the Transtheoretical Model guided us to what information may be helpful to learn from participants (i.e., life impacts, barriers, motivations) and in the creation of preliminary message concepts for testing. Formative research includes preproduction research and pretesting (production) research (Atkin & Freimuth, 2001; Maddok, Silbanuz, & Reger-Nash, 2008, Noar, 2006; Shafer, Cates, Diehl, & Hartmann, 2011). Preproduction research refers to studying a target audience’s perspectives and behavior surrounding a particular health issue, which is useful in informing message content and tone. Pretesting research refers to the study of a target audience’s responses to developed messages.
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Table 1. Relevant processes of change as applied to parents of children with eating disorders Processes of change
Definition
Example for parents of a child with an eating disorder
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Consciousness raising
Learning new information Needed because of parent’s to support behavior explicitly stated need for change information in previous caregiver research Environmental Seeing positive/negative Connecting self-care to not only revaluation impact of health/ an ill child’s health outcomes unhealthy behavior on but also improvement in environment affected family dynamics Self-reevaluation Behavior change is part of Making self-care part of one’s idea identity of self-health and well-being Social-liberation Realizing that social norms Parents of a child with an eating are changing in direction disorder need to see that of supporting health treatment teams and society behavior encourage parent care Self-liberation Making a commitment to Knowing internally that self-care is change needed and is okay to engage in Dramatic relief Experiencing negative Reminding parents of their stress emotions that result from and anxiety’s effect on their unhealthy behavior risk child’s health outcomes Helping relationship Use of support from others Given social isolation, parents while trying to change need to find social support from behavior people they trust Note. Definitions adapted from Prochaska, Redding, and Evers (2008)
Method Participants Three focus groups with parents of children with eating disorders (N = 19; 15 mothers, 4 fathers) and 19 interviews with experts specializing in eating disorders (8 clinical psychologists, 3 nurses, 2 dietitians, 2 general practitioners, 2 family social workers, and 2 psychiatrists) were conducted in a Southeastern city. Parents’ children ranged from adolescents to adults, the majority of whom were still in treatment. Parents were recruited by referral through clinicians and posted fliers and received US$10. The majority of participants were female, reflecting what we learned from the expert interviews that the majority of eating disorder parent caregivers in the participating programs were women. Although previous research (e.g., Kyriacou et al., 2008) has found gender differences, such as in caregiver burden and distress, both experts and focus group participants did not indicate any gender differences in type of self-care messages needed. Participants did indicate potential differences in level of involvement in caregiving, with mothers feeling more involved than fathers. Experts specializing in eating disorders were recruited by e-mail from three well-known eating disorder programs. Experience working with eating disorders ranged from 2 to 28 years. Participants were
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told directly during recruitment what the study was about and consented in accordance with institutional review board approval.
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Procedures The director (clinical psychologist) of one of the eating disorder programs moderated each focus group, which included 5–9 parents, and took place in a conference-style room at two of the eating disorder program facilities, lasting 1.5 to 2 hours. The first focus group was purely preproduction research. In the second and third focus groups, the first half of the session was preproduction research, while the second half of the discussion was production research, where parents were shown 11 × 17 color posters containing messages that were developed on the basis of insights from the literature review, guiding theories, and the first focus group. Messages were further revised between the second and third focus group. Two of the authors conducted the in-person interviews with experts. These interviews ran in a similar fashion to the second wave of focus groups and lasted 30 to 45 minutes. Interviews occurred during the same months as the focus groups, and thus, messages changed after the second focus group were also changed for remaining interviews. The questionnaire guides for the focus groups and interviews assessed the following concepts from the perspective of both parents and eating disorder experts: (a) experience with eating disorders; (b) impact of the eating disorder on parents’ lives; (c) self-care behaviors and barriers and motivators to engaging in these coping behaviors; (d) source preferences and information seeking; and (e) message ideation and evaluation, including reactions to design/content, main message identification and effectiveness, and suggestions for improvement. Health Message Concepts Several executions of two concepts (I am not afraid and Support for a father) were tested. The main message was embodied by the tagline that stated, “Caring for yourself is caring for your child,” which was based on eating disorder research and findings from the first focus group showing parents’ main priority is caring for their child. I Am Not Afraid This execution style (see Appendix A) addressed the social and self-liberation processes of change by directly opposing the secrecy and stigma surrounding eating disorders with the headline, “My child has an eating disorder, and I am not afraid to talk about it.” Two executions were tested, a black-and-white photo of a middle-aged mother and another with a younger mother both looking directly at the camera. The copy first validated parents’ feelings and then provided a reason for engaging in coping behaviors that would help ameliorate these feelings (dramatic relief and secondary appraisal). The main benefit of self-care was stated clearly in the tagline (self/environmental reevaluation and secondary appraisal). Support for a Father This execution style (see Appendix B) represented a more consequence-based approach and addressed environmental reevaluation. The original headline stated, “I have an eating disorder, and when my dad found support for himself, he was better able to help me and my family.” The original execution was from the affected child’s point of view encouraging parents to engage in self-care (helping relationship/environmental
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reevaluation). Different pictures were used and changed between focus groups and the point of view was switched from recovered child to parents—focusing on the father. The revised headline read, “Our child has an eating disorder and when we found support, we were better able to take care of our whole family.” The final four executions were as follows: a family hugging, a father’s hands forming a roof for his family’s hands, a father and daughter, and a daughter.
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Overview of Qualitative Data Analysis Constant comparative method was used to create a codebook and systematically analyze the transcribed interviews and focus groups (Lindlof & Taylor, 2002). Two coders developed and refined the codebook and evaluated disagreements, by coding the first four interviews independently using Atlas.ti, qualitative analysis software. After each round of coding, agreement was measured and disagreements were discussed. By the fourth round of coding, interviews reached 90% agreement. The remaining interviews were then divided amongst the coders. Both coders independently coded all of the focus groups. Since focus group participants expressed a wider range of responses than experts, leaving more room for interpretation when coding, agreement levels reached 60%. Consensus coding was used to resolve differences among the coders and create one master set of coded transcripts (Hruschka et al., 2004; Rothman, Bartels, Wlaschin, & Salovey, 2006).
Preproduction Findings The major themes discussed below are listed in Table 2. Life Impacts It was expressed numerous times (three fourths of the interviews and all of the focus groups) that the effects of having a child with an eating disorder reached every corner of a parent’s life, changing all aspects. Changes in family dynamics, relationships, work, financial security, and even parent eating habits were due to having a child with an eating disorder that needed constant care. Barriers to Self-Care Most of what parents and experts revealed was very similar or directly connected. For example, parents’ perceived barrier of lack of information on eating disorders related to experts being challenged in having some parents recognize the seriousness of the illness. The main difference between the two groups was the level of emphasis placed on certain expressed barriers, life impact, and parent feelings. Parents mainly mentioned psychological barriers to self-care, including emotional burden, stress, and blame. They needed permission to engage in self-care. The lack of knowledge and awareness of resources was also a significant barrier. Although experts mentioned these barriers, such as the need for permission, they emphasized logistical barriers and life impacts, including time and financial hardship. Stigma and Isolation Social isolation was said to emanate from stigma related to eating disorders. This stigma originates from the misguided belief by people who are not affected that eating
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Table 2. Major themes regarding the views of parents of children with eating disorders on engaging in self-care activities Preproduction
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Barriers Parent-expressed barriers • Child’s eating disorder affected all aspects of parent’s life, making it hard to participate in self-care, e.g., relationships, work life • Stigma and isolation • Lack of information on illness and selfcare • Feeling selfish, blamed, and emotional stress • Need for permission Expert-expressed barriers • Lack of time • Financial hardship • Secrecy of illness
Pretesting Motivations
Message concepts
Motivations • Helping child recover • Talking with other parents of children with eating disorders • Desire to be a role model for child • Validation • Professionals giving permission • Trusted sources giving information
Effective components • Main message clarity • Tagline • Emotional impact and authenticity • Breaking silence statement • Whole family acknowledged • Parents could relate to parents in photos • Other eating disorder parents as message source
Unmotivating factors • Blaming parent • Unsolicited advice from people with no experience with eating disorders
Improvements needed • Call-to-action should be more prominent • Emphasize helping relationships • Include source recommendations • Discontinue child as message source • Remove any hint of blaming language • Include examples of selfcare activities • Enlarge resource links • Reduce text
disorders are easy to cure. Therefore, family and friends placed blame on parents, as they were not able to control their child’s eating habits. So there’s that whole stigma and then it’s this thing that people can’t understand because everybody pretty much loves to eat. You know? And how can you not want to eat that … so all of these like huge factors. (Parent) In addition, children with the eating disorder wanted their disorder kept secret, often forbidding parents to speak about the problem. This made social networks unavailable (e.g., family, friends). Without social networks available and the inability to talk about it, many parents expressed difficulty in coping and keeping healthy relationships, such as spousal relations. Well for us, she didn’t want us to say anything to anybody … So nobody, nobody except our family knows so I had nobody locally to talk to and
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I’ve kept that, you know, I have, there were so many times where I just was like I had this one friend it’s like I’m just going to tell her. It’s like I can’t do that. There’s this, you know, unspoken rule that you’ve made with your daughter so, you know, I have my sisters but that was hard. (Parent) Lack of Information A severe lack of information existed from a parental point of view. Parents were unable to find information on the illness and what they could do to help their child. Experts, although realizing parents wanted information, did not express any expectations that parents would have difficulty finding information. This denotes a discrepancy that might be part of why parents are not aware of or able to access resources available to them through eating disorder programs. Experts also expressed that parents simply had a lack of knowledge regarding the course of the illness and its longevity, which proved to be a challenge when trying to convince parents to go to therapy or participate in a support group or hobby of their own because parents did not realize how long they would be involved in caregiving. Time The most common barrier mentioned by experts was time, although some parents also mentioned time. Well, time might be a factor. They spend so much time dealing with their child if they’re going to outpatient therapy. I mean, there’s the dietician, the psychologist, the psychiatrist. My goodness, that takes a lot of time. And then they’re so vigilant regarding their child that they’re, it leaves little time for themselves. (Expert) Given demands on a parent’s time (e.g., meal-planning, therapy, medical appointments), time is scarce. This is related to other logistical barriers expressed, including financial hardship resulting from loss of work time and treatment expenses, lack of energy, and other siblings needing parental attention. Feeling Selfish, Blamed, and Emotional Stress Parents expressed the barrier of time as part of a different factor: the need to invest their time in their child’s recovery and that they would feel selfish taking time to care for themselves. Permission to engage in self-care was needed, because time away from their child was less time spent helping them recover, in addition to feeling blamed that parents had caused the problem. The majority of parents were not aware of the fact that self-care would ultimately help their child, as was identified by parents not mentioning this as a benefit of self-care when asked. It [self-care] was recommended to me but I never did it. I felt like I couldn’t focus on me until I knew she was okay, that she was in an okay place. I couldn’t focus on me at all. (Parent) If there’s other children they may not want to, and one child is taking up so much of their time, they may feel guilty giving themselves time because they think the other kids need time, and it’s not fair. (Expert)
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For some, these feelings meant parents believed they did not deserve to make themselves feel better. For others, it meant they were fearful of seeking support from others because whoever is providing the support might tell them that they are at fault for their child’s illness or are doing something wrong by seeking self-support or in how they are helping to treat the illness.
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I kind of have gotten the message sometimes that parents are half expecting that if they join any of these activities that they’re going to be told that they’re doing something wrong or there’s something that they should have been doing different or they’ve done something to create the eating disorders. (Expert) This sense of not having permission was further exacerbated by the emotional stress and strain parents shouldered. As such, another barrier to self-care was the emotional burden that parents face. The most common feelings mentioned by parents were stress and anxiety followed by guilt and blame, feeling overwhelmed, and being scared for many reasons. Other feelings were related to anger, helplessness, and shame. These feelings stopped parents from participating in self-care, as they believed if they did, it might intensify these emotions. I would find the emotion welling up and just wanting to spill over. And that wasn’t the time or the place for it. It wasn’t about me. And so I wish I had done that [self-care]. But in the middle of everything, trying to come over here every day and spend as much time with her as we could, even if I had to repeat it I don’t know that I would have that to go to. I still don’t think I would do it. (Parent) I just had so much anxiety over the fact that here was my daughter who was suffering with such a great problem. It just really overwhelmed me. I don’t know that I could have done anything about caring for myself at that point. (Parent) Motivators to Self-Care When asked to define coping behaviors (self-care), both parents and experts listed basic healthy behaviors. In other words, sleep, eating correctly, getting exercise, and balance were important for parent well-being. The self-care behaviors mentioned as the most important were creating time separate from their child to deal with their own emotions and to maintain their own identity. For parents, this meant involving themselves in activities or hobbies, whereas experts also mentioned obtaining a therapist. Invoking a social support network was important, which meant talking with friends, family, professionals, and other parents going through similar experiences. Helping Child Recover Given these coping behaviors and benefits, as well as the barriers previously presented, it followed that the most important motivator for parents was demonstrating the connection between self-care behaviors and improvement in their child’s health. I think the thing that motivates them the most is their love for the child and wanting to do the right thing for their child. (Expert)
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If parents knew that engaging in self-care behaviors, such as taking a walk, could improve their child’s recovery process, they would be more motivated to overcome logistical and psychological barriers. Both parents and experts stated one motivator would be to let parents know they needed to be a role model for healthy coping so that their children would know what healthy behavior looked like. Validation Feelings of isolation and wanting support were connected to the self-care activity of talking with other parents. Hearing other parents go through the same experiences gave parents reassurance that they were not alone, that their feelings were validated, that it was possible to cope, that self-care might lower stress and anxiety, and most importantly, the parent would be better able to help their child recover. This may reflect parents’ need for an emotional outlet for themselves, and a safe place to receive support. Permission Another motivating factor was professionals emphasizing a self-care requirement and need for parents to engage in coping behaviors. Parents in the focus groups who had previously participated in a parent support group related that they had no motivation to participate until they were told they were required to as part of their child’s treatment in a particular eating disorder program. Well, obviously for me, the taking care of myself as a means, I guess that gave me permission, the fact that I knew that it would model for her, it gave me permission to do it. Maybe I needed that. (Parent) Trusted Sources This relates directly to sources of messages parents find most motivating, credible, and understanding. The three main sources were professionals (especially doctors and therapists), other parents with children already recovered from an eating disorder, and a child recovered from an eating disorder. In my experience typically physicians trump. So whatever they say in terms of recommendation for their child, anything that the parents can do, sometimes, will ask the physicians, you know, if they can help us endorse certain messages. (Expert)
Production Findings Theory-Based Message Reactions Findings often reflected the theoretical frameworks that informed the message design. The main message in both concepts, “Caring for yourself is caring for your child,” was well received. Often, before participants saw drafted messages, they uttered something similar to the tagline. It serves to reframe behaviors parents see as selfish (caring for themselves) as a component of the most powerful motivating factor (wanting to
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care for their child). This reframing may be related to the self-reevaluation process of change by positioning self-care as a core aspect of a parent’s identity, being a good caregiver while helping parents overcome a key barrier to self-care (feeling selfish). Participants responded positively to the validation of feelings in the messages, which was aligned with dramatic relief as a process of change in the Transtheoretical Model and also based on the secondary appraisal stage in the Stress and Coping Model.
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I think it validates how they’re feeling, so this I feel guilty, I feel stress, I’m anxious, so I think that helps people. Yes, yes, yes, I’m feeling that way. I’m feeling like it’s taking over my life. Yes, yes, yes, I’m overwhelmed. But here’s the hopeful part of it—there’s some support out there. (Expert) One theoretical concept that parents frequently mentioned should be more present in the messages was the need for helping relationships (process of change). Parents wanted the message to be endorsed by members of their child’s treatment team and had a strong desire for social support. Parents and experts agreed that there is a lack of these types of messages for parents and that they would be helpful in prompting action (conscious raising process of change). You gotta realize that any of this is far better than what’s out there, which is like a big nothing. (Parent) If we had seen this up in inpatient, we would have been all over it. (Parent) Concept Execution Feedback I Am Not Afraid Parents felt the messages communicated that they are not alone in experiencing their feelings, and that parents should not feel guilty for finding support, thus addressing key barriers and the need to recognize the importance of self-care. The headline, “My child has an eating disorder and I’m not afraid to talk about it” was well received by both parents and experts. It encouraged parents to break the silence they may have faced in attempting to obtain support (see Appendix A for sample execution). It’s like when someone says, well my daughter has an eating disorder, and I’m not afraid to talk about it … Cause I need to talk about this with someone, because the first thing that happens is you hide it. Or, you know, it’s all about secrecy and hiding. (Parent) Participants found this message important and powerful, especially in conjunction with the photo of the middle-aged woman, as she looked confident. The middle-aged woman was liked more than the younger appearing woman, primarily because participants thought she looked more relatable. Support for a Father The main message was clear and found to be effective by participants in that a father needs support, and this support will help his daughter and the rest of the family through the recovery process (see Appendix B for sample execution). This one will prompt fathers to look into some resources. It is warm and encouraging, [it will] plant seeds of hope. (Expert)
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However, some parents and experts conveyed that the message could be taken as blaming the father, which would be entirely unmotivating for fathers. I have to pause. It’s like seeing the ad might make some of our parents and patients feel guilty. (Experts)
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In addition, the copy was interpreted to imply that the father had found support after the child recovered rather than during the recovery process. These two elements were important to change. I guess if I had one critique … it’s the, how it’s phrased about “you’ve been there for me all along.” It sort of sounds like well now that you’ve gone through the whole thing with me, now it’s time to take care of your … and that’s just how it hit my brain … And that’s not the message. It almost sounds like, hey I’m better, now it’s your turn. (Parent) Parents and experts preferred the photo of the family hugging each other. Some people related that the race of the family was ambiguous, thus allowing more people to relate to the photo. The majority of parents and experts liked the idea of having the entire family pictured rather than only a father and daughter or a daughter alone. On the middle one that has the family hugging, I think it does get to that message, caring of yourself is caring for your child. I think that’s very powerful. (Experts) I like the whole family best if I had to choose. (Parent) Revision was needed for this set of executions in regards to the text and targeting clarity. This message targets dads in particular, but it could be anyone, the message should just signify support from a family member in general to be applicable to everyone. (Experts) The voice coming from a child was not seen as authentic by experts and parents, since children with eating disorders were unlikely to be expressing supportive messages about their parents taking care of themselves in the midst of dealing with a life-threatening illness. The child is so distraught and wrapped up in their illness it seems odd that she would be so focused on what her father needs. (Experts)
General Discussion The findings provided an understanding about the beliefs and attitudes of parents of children with eating disorders toward self-care and the message executions. Parents and experts related the main barriers to engaging in coping behaviors were need for permission (rooted in lack of time, lack of information on self-care, and feeling selfish and blamed) and the main motivator for self-care was the affected child’s health. The execution containing a middle-aged woman and the execution showing a family
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hugging were well received by the majority of participants. Two elements that parents and experts responded positively to, validating feelings and addressing barriers to selfcare, were derived from concepts in the Stress and Coping Model, which is to acknowledge the primary stressor and then to move parents from the secondary appraisal stage by removing barriers. The processes of change the messages embodied, including social-liberation, selfliberation, consciousness raising, helping relationships, environmental reevaluation, self-revaluation, and dramatic relief were well received and important to move parents through the first two stages of the Transtheoretical Model (Wenzel, Glanz, & Lerman, 2008). The headline of “I am not afraid to talk about it,” a sign of social and selfliberation was thought to be very powerful and likely to grab the attention of isolated parents. Since these parents were high information seekers, it makes sense that the consciousness raising, or the resource information, was mentioned as key to helping parents move from feelings of helplessness to hope. Self-reevaluation and environmental revaluation were embodied in the ad as the tagline, “Caring for yourself is caring for your child.” It gave parents the ultimate reason for engaging in self-care activities. On the basis of formative research findings, the revisions included shortening the copy, explicitly stating permission from experts, and more examples of self-care to cue specific actions. The father-centric execution was further revised to remove any language seen as blaming, to focus on the whole family rather than the father, and to change the voice to be from the perspective of parents of a recovered child rather than the child’s voice. Conclusions This formative research is an example of how theory can be used to guide message design for a health communication intervention for parents of children with eating disorders. A key lesson learned was that when it comes to persuading parents to engage in self-care, message elements should be related directly to barriers and motivators for parents. Explicitly stating that caring for oneself is a means of helping a child recover is imperative for supporting parents of children with eating disorders in their efforts to cope with caregiving and help with their child’s recovery. Some of these research findings may be relevant beyond caregivers who are parents of children with eating disorders, and also inform us about the potential message strategies that may help promote self-care among other caregivers (e.g., adults caring for their elderly parents).
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Appendix A: “I Am Not Afraid” Message Execution
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Appendix B: “Support for a Father” Message Execution
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