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Family support is important in diabetes self-management. However, children as providers of support have received little attention. This study examines the role of children in their parents’ diabetes self-management, diet, and exercise.
This research used community-based participatory research principles. Researchers conducted semi-structured parallel interviews of 24 Latino and African-American adults with diabetes and with a child (age 10–17 years) in their home (2004–06). Interviews were transcribed, coded, and analyzed for themes (2004–07).
Adults and children perceived that children play many roles related to adults’ diabetes self-management. Parents described children as monitoring parents’ dietary intake and reminding them what they should not be eating. Some children helped with shopping and meal preparation. Families described children reminding parents to exercise and exercising with their parent. Children reminded parents about medications and assisted with tasks such as checking blood sugar. Parents and children perceived that children played a role in tempting parents to stray from their diabetes diet, because children's diets included food that parents desired but tried to avoid.
Children and parents perceived that children have many roles in both supporting and undermining adults’ diabetes self-management. There is more to learn about the bidirectional relationships between adults and children in this setting and the most beneficial roles children can play. Health-care providers should encourage family lifestyle change, strengthen social support for families and direct children toward roles that are beneficial for both parent and child and do not place an unreasonable level of responsibility on the child.
Diabetes self-management, which includes taking medications, monitoring blood glucose, following a diet, and being physically active, takes place within the family context.1 Increased social support is related to better diabetes self-management.2–4 Some self-care such as food preparation may be done by others (often a spouse).4 Often forgotten players in this family milieu are children. Research to date has examined the roles of children of parents with severe physical disabilities, cancer, chronic pain and mental illness, but not diabetes.5–10 Studies have focused on “youth carers” who are “involved in exaggerated levels or types of caring” and the detrimental effects of extreme caregiving tasks on development.5 There is little on the everyday roles that children might play in families in which a parent has a chronic disease such as diabetes and how these roles affect parents and children, nor has research examined children's roles in behavior changes around diet and exercise in these families.
This paper begins to address these gaps by describing parent and child perspectives on children's roles in the self-management of their parents’ diabetes among Latino and African-American families. This paper addresses the following study questions:
This research followed community-based participatory research (CBPR) principles that emphasize community involvement throughout the research process, as outlined elsewhere.11 Researchers conducted qualitative, semi-structured parallel interviews of two cohorts of adults with diabetes who were participating in or had completed a successful CBPR-based community-based diabetes self-management intervention—The Racial and Ethnic Approaches to Community Health (REACH) Detroit Partnership— and a child in their home. The 6-month intervention involved 11 weekly, 2-hour self-management training sessions and regular meetings with a “Family Health Advocate” (FHA), a trained community health worker providing self-management education and support. Intervention messages focused on diabetes self-management, healthy diet, and exercise, and participants were successful in decreasing blood glucose and making dietary improvements.12 The initial group was interviewed after they had completed the intervention, while the second cohort was interviewed before and after at least 6 months of participation. This study was developed in response to community members’ concern about community children at risk for diabetes. The primary aim of the interviews was to understand how behavioral changes attempted by adults with diabetes affected the lives of children in the home.13,14 What emerged was not only a story of adults’ influence on children but of children's messages and actions toward their parents with diabetes. The REACH steering committee and FHAs were involved in the development, discussion, revision and approval of the overall study questions, design, and recruitment protocols.
To gather information-rich cases, the study used purposeful sampling, based on the age and sex of the child and race/ethnicity of the family.15–17 Researchers purposefully sampled children, aged 10–17, from REACH families with a goal of at least two children (one male and one female) of each race in each age range (10–11, 12–13, 14–15, 16–17). Inclusion criteria for children were their age (between 10–17 years) and living with a REACH participant for at least one year. Age 10–17 was chosen, as children below age 10 could not meaningfully complete the interview and above 17 are often considered adults. Adult inclusion criteria were completion of 6 months of REACH activities and having an eligible child. Adults and children were required to speak either English or Spanish.
In the first cohort families were recruited in waves to fulfill the sampling framework until all eligible families were contacted. In households with multiple children the framework guided the choice of child. All eligible families in the second cohort were recruited as part of the rolling recruitment for the second REACH program, using the sampling framework to guide selection of children.
All interviews took place from May 2004 to June 2006. We conducted audio-taped, semi-structured, face-to-face interviews with adults and children. Child interviews lasted 50–75 minutes and were conducted in the child's preferred language (English or Spanish) without the adult present. Adult interviews lasted 30–90 minutes. Table 1 lists questions relevant to this analysis. The principal investigator (HL) conducted all English-language interviews. Trained, Masters-level, native Spanish speaking interviewers conducted the Spanish-language interviews. The principal investigator, who speaks Spanish well, was present to add questions if necessary. The study was approved by the Institutional Review Board of the University of Michigan School of Medicine.
Interviews were audio-taped, transcribed, and verified. Data were analyzed and collected concurrently so insights from completed interviews could inform ongoing data collection and analysis (Overall spanning May 2004 –December 2007). Researchers analyzed the interviews thematically, assisted by QSR NVivo (QSR International, Version 7). Our overall approach followed the “Editing Analysis Style” which contains both deductive and inductive elements.18 Deductive codes were derived from a priori analysis frameworks and inductive codes were derived from the interviews to create new categories and refine framework categories.
Two investigators independently coded transcripts and used an iterative process to compare results until agreement was reached. Other research team members read selected transcripts to compare their code interpretations with the two primary coders. After the coding scheme was developed, the principal investigator coded all transcripts; a second researcher coded a subset to verify code reliability. Coded transcripts allowed cross-case comparison and analysis of patterns and themes. Additional authors were involved in refining the thematic analysis. Additional details are outlined elsewhere.13 Discussion of emerging themes with the FHAs and community partners added additional viewpoints to those of the research team. A community representative from the REACH steering committee and the REACH project manager were a part of the writing team for this manuscript.
The final sample included 24 families (14 in the first cohort and 10 in the second). The adults were primarily female (21 of 24). There were 10 African-American families and 14 Mexican-American families. Participants included 19 parents and 5 grandparents. All grandparents except one were the child's primary caregiver. The other grandparent shared parenting responsibility with the child's mother but was in charge of meal preparation. We use the term “parent” to denote parent or grandparent. There were 12 male and 12 female children interviewed ranging from 10 to17 years of age (see Table 2). We enrolled more 12–13-year-olds than initially planned, as we found in early interviews that they expressed themselves more clearly than the younger children but were more dependent on their parents than the older children. The initial REACH intervention cohort had 180 adults (with and without children) of whom 30 families were eligible. Of 30 eligible families approached for enrollment, 15 accepted (one could only complete the child interview), 10 declined and 5 could not be contacted. In the second cohort, of 26 eligible families, 5 were unable to be contacted, 13 accepted and 8 declined (3 did not complete the second interview and were excluded).
Parents and children perceived that children played many different roles in parent diabetes self-management. Families described children's roles in 1) monitoring parents’ dietary intake, 2) helping with shopping and meal preparation, 3) reminding parents to exercise, 4) exercising with parents, 5) reminding parents to take medications, and 6) assisting in other diabetes self-management tasks, and 7) tempting adults to stray from their diet for diabetes. These descriptions arose as parents and children discussed changes in the household as parents engaged in a diabetes self-management program. Parents provided more descriptions of children's roles, but some children echoed the same themes. These roles are described in more detail below, followed by parents’ overall perspective on how children influenced their diabetes self-management. Bolding in the quotes in the text and tables was added for emphasis by the authors to highlight key phrases.
Many parents perceived that children sometimes monitored parents’ food intake. As one mother related her 13 year old daughters word, “Are you sure you can eat that? Well, Mom, if you cannot eat that, don't do it!” (quote 1- full quote in table 3). Children gave parents verbal reminders about food they should not eat (quote 2) and a couple of children went beyond verbal reminders to hide or take away forbidden food from their parent with diabetes (quote 3).
Parents responded to their children's monitoring in a variety of ways. Parents generally described reminders as positive examples of their children trying to help them. One mother reported, “So they keep me in touch with like ‘Mama, you know you can't have that’” (also quote 4). However, parents sometimes ignored, circumvented, or dismissed their children's attempts to “help” or “take care” of them. One parent implied that her actions differ depending on whether her children are present (quote 5). Another parent simply ignored the reminders (quote 6). Parents described some arguments with their children over reminders not to eat certain foods. One father described a conflict with his daughter that he later regretted (quote 7).
Parents infrequently described their children providing instrumental help with diet to them. A few older daughters were described as helping to cook new foods (quote 8). A few older children helped with the shopping, and younger children helped by carrying groceries. One adult-child pair described how shopping for healthier food became a positive joint activity between parent and child (quote 9).
Some families described verbal cues to exercise from children. One mother of young children said:
And sometimes the little girl asks me, “Did you exercise already, or when are you going to do it?” I would answer, “No, I have not exercised yet.” And then she adds, “You have to do it, I don't know why, but you have to do it.” (translation) (see also quote 11)
Many families described instances of children exercising with their parent. As one mother said, “She [her daughter] tells me, ‘Let's go and exercise!’” (translation) (see also quote 12). Another pair shows how parents tried to include children in exercise with them (quote 13).
However, other families did not describe exercising together, and one described how while both children reminded her to exercise only the younger one would exercise with her. Some families described barriers to exercising together that included parents’ poor health status, winter weather, and dangerous neighborhoods.
Some parents described that their children reminded them to take their medicine and check their blood sugars. One mother reported, “You know they'll say stuff to me about ‘Well...did you take your medicine?’” (also quote 14). One father and his 16 year-old daughter described how she helped manage his medication (quote 15).
Some children assisted in completion of diabetes self-management tasks, such as retrieving medicines, glucose meters and supplies; helping draw up insulin; pricking parents’ fingers for glucose checks; and in the Latino community, a few children went to appointments with their parent to serve as a translator (quote 16).
Children's presence in the house led to circumstances that tempted parents to stray from their “diet”. Children's diets included foods which parents desired but were told to avoid or eat infrequently because of their diabetes. Parents perceived children as directly and indirectly tempting them to eat certain foods. Children directly tempted parents by encouraging their parents to try foods, bringing foods into the house, and eating certain foods in front of their parent. One parent described how her children actively offering her food that she was trying to avoid (quote 17). Sometimes children sent mixed messages. Parents gave examples of children admonishing them not to eat certain foods while eating those same foods in front of them (quote 18).
Indirectly, parents were tempted by the foods they bought—and sometimes prepared—for their children but were supposed to eat only in limit amounts. Children sometimes demanded to eat differently from their parents, but more often the parents did not expect their children to follow the same dietary rules as the parent with diabetes (quote 19).
Children provided different perspectives on the theme of temptation. Some children felt that the dietary rules for their parents did not or should not apply to them because their parents were the ones with diabetes (quote 20). However, some children recognized the problem of temptation for their parents who were trying to make dietary changes (quote 21). A few children went beyond recognition and described themselves and/or were described as changing their eating habits to match their parents’ healthier dietary rules in order not to tempt him or her. For example, a sixteen year old daughter described agreeing to make diet changes in order to help her mother while a father-daughter pair explained how everyone eventually made changes together to help the father (quotes 22 and 23).
To understand better how adults perceived children as affecting their overall ability to make change, interviews for the second cohort specifically asked parents if having children made it easier or harder to control their diet and how.
Parents’ responses included those who felt it was harder to have children, those who were neutral about it, and those who felt it was easier. Those who felt it was harder cited the need to provide children with different foods from those they ate for their diabetes because children had different tastes and they were growing. Those who were neutral said it was not harder either because they were accustomed to making separate food for their children or because their children ate whatever they prepared. Those who felt having children facilitated their efforts to make changes cited reminders, instrumental help and motivation from their children to make changes (see Table 8 for illustrative quotes).
Adults and children in this study perceived that children play many roles related to the self-management of adults’ diabetes. Parents describe children as monitoring their parents’ intake and reminding them what they should not be eating. Parents and children perceived that children played a role in tempting parents to stray from their diet for diabetes because children's diets included food that parents desired but were trying to avoid. A few children helped with shopping and meal preparation. Some families described children as reminding parents to exercise and exercising with their parent. Children also reminded parents about medications and assisted with diabetes tasks such as preparing insulin and checking blood sugar.
Children's roles in adults’ diabetes self-management can be viewed from two different perspectives, the potential influence on parents and on children. From the parental perspective, prior research has not addressed how non-adult children in the household may affect the health behaviors and self-management of their parent(s) with diabetes. Family-focused support interventions have concentrated on children with illness and the elderly, leaving out the experiences of adults in their child-bearing years.19 The experiences of families with children will become increasingly relevant as the age of onset of type 2 diabetes is decreasing20 and the number of grandparents who rear their grandchildren is increasing, particularly in racial/ ethnic minority communities.21 This paper highlights some of the ways in which children became a part of their parents’ diabetes self-management.
Children have the potential to be both a positive and negative part of parents’ social support. The social support literature documents that diabetes self-management and diet change can be enhanced by positive social support, but does not separate out support from different family members (e.g. children versus spouses).3,4,22–25 In this study parents were for the most part positive about their children's involvement in providing reminders about diet, exercise, and medications. However, the literature on support from adult family members suggests that “helpful comments”—especially those with a negative message—can be seen as harassing or “nagging”.26,27 As is the case for other family members and health care professionals, it is likely that the manner in which children seek to influence their parents (e.g., through positive, autonomy-supportive reinforcement vs. controlling, guilt-inducing scolding) significantly influences whether these efforts have a positive or negative effect.26,28–30
There may also be other negative social influences on illness management.4,31Other studies echo these parents’ struggles regarding family members unwilling to make changes, balancing perceived dietary needs of family and diabetes dietary regimens and the problems of temptation.4,13,26,30,32 Children may present a particular challenge to parents’ efforts to make healthy changes because in some families children are not expected to participate in dietary changes.13
For children, there are potentially positive and negative consequences related to their roles in supporting their parent. Research on parental illness and the parent-child relationship is limited and none focus on diabetes. The literature on youth caregiving has highlighted the potential detriments to children who have taken on significant amounts of caregiving responsibilities for their parent; these include increased somatization, decreased life satisfaction, isolation and limitation of social activities, and maybe depression and anxiety.8 The literature also reports some positive outcomes such as a sense of self confidence, increased self-esteem, and enhanced self-efficacy regarding the skills they have acquired in caregiving.8,33 Children can benefit from learning to think about the needs of others and being a part of a supportive family unit.5,8,34Helping also provides a positive outlet for children to express their concerns about their parents.6
The consequences for children may depend on the scope and context of their roles. The consequences for smaller roles in caregiving and interactions related to food and exercise, which are crucial in diabetes, have not been well-discussed. As Prillentensky highlights, “There is a big difference between a teenager who has little choice about providing intimate care to a parent and one who may be expected to assist more with household chores than some of his peers. Both the quality and quantity of tasks need to be considered.”34 Our study found varied levels of child involvement, from occasional reminders not to eat certain foods to helping manage medications. Though some children clearly expressed a desire to help in some way, it is not clear from this data how these children felt about assisting in these tasks or whether they felt responsible for parental outcomes.
The challenge for all diabetes providers (including educators) is how best to help families balance the needs of both parents and children. Providers should strive to marshal support and resources for families to remove the need to rely on children for significant amounts of caregiving.5 Children should not be responsible for monitoring adults’ self-management or significant care-giving responsibilities that might interfere with normal developmental activities or make them feel responsible for parent outcomes. However, children can be given opportunities to support their parent in age-appropriate ways.8,35 For example, with guidance an older child might be in charge of creating a healthy dinner or gathering the supplies for a blood sugar check while a young child might wash vegetables or retrieve a specific item for a tired parent. Providers can assist these efforts by helping parents carefully evaluate appropriate ways for children to help7 but further research is needed to guide parents and providers (see below). Also, diabetes interventions could aid parents in providing information to children about their parent's illness, important healthy lifestyle changes, and their role in these changes.26,29,33
Children can be encouraged to play a positive family role by changing their own health behaviors. This benefits parents by providing a supportive environment for behavior changes and may benefit children by enhancing children's motivation to improve their own eating habits and exercise.13,14,36 Perceptive teens in this study picked up on their parents’ struggles and concluded that by changing what they ate, at least in front of their parent, they could reduce temptations for their parents. A pilot intervention with Mexican-Americans showed that involving the entire family including the children in activities on communication, diabetes and dietary and exercise change was beneficial to adults with diabetes.37 Providers and interventions should encourage beneficial change for the whole family, joint learning about diabetes, healthy diet and exercise, and opportunities for joint exercise and family meals.1,23,30,37,38
Further research should explore in more detail child-parent interactions in these families and their consequences for parents and children. Additional research questions should explore 1) the frequency of different roles in a larger sample 2) children's feelings of responsibility for helping in diabetes self-management and about their roles, 3) appropriate roles for children and teens to play in adult's diabetes self-management, 4) how to guide children toward roles that are beneficial for parent and child 5) parents’ feelings toward and responses to messages from their children in comparison to similar messages from spouses or friends and 6) the types of support from children that parents find helpful and not helpful. This information will help tailor interventions to parents with diabetes to promote a positive, supportive family environment.
Additionally, research should explore the influence of gender and race/ethnicity in defining children's roles. Women predominate among adult caregivers, and in our study parents’ descriptions of instrumental help from children often focused on daughters while verbal reminders came from both sons and daughters.39–41 Many Mexican-American families value traditional gender roles42,43 and place family needs above individual needs.42 Many African-American households have a tradition of strong female caregivers who may care for an extended family network.32,44 How these cultural influences may have shaped children's roles in these families, particularly female teenagers, needs more study.
The use of CBPR methods enhanced this work in many ways. It informed the questions asked and the methods used to gather and analyze the information. Without the sanction and help of community collaborators, some families would have been unlikely to talk with interviewers and to share so openly. However, although families were assured that intervention personnel would only see themes and carefully de-identified quotes, the interviewers’ affiliation with REACH Detroit may have added to the social desirability of their answers. However, as they became comfortable in the interviews, most participants seemed to openly describe challenges, conflict, and other items. In addition, the information gathered in this study has been shared with community and other partners to inform future versions of this intervention.
Several other limitations should be considered when interpreting these results. First, our findings are based on a small group of African-American and Latino families living in inner-city neighborhoods and thus are most applicable to groups with similar characteristics. Second, though our sample spanned the spectrum of ages 10–17 years, our over-sampling of 12–13-year-olds provided greater breadth and understanding of this group and thus our findings may be particularly applicable to this group. Third, the overall focus of these interviews was on describing changes in these households around diet, exercise and diabetes and did not include structured questions exploring children's feelings regarding their roles in their parent's diabetes management.
Children and parents perceived that children have many roles in adults’ diabetes self-management. These roles could have positive and negative influences on both parent and child. There is still more to be learned about the bi-directional relationships between adults and children in this setting and the most beneficial roles children can play. Health-care providers and interventions should encourage family lifestyle change, strengthen social support for these families, incorporate children where appropriate and direct children towards roles that are beneficial for both parent and child and do not place an unreasonable level of responsibility on the child.
This research was support by the Robert Wood Johnson Clinical Scholars Program, The Blue Cross Blue Shield Foundation of Michigan and by the National Institute of Child Health and Human Development (T32 HD007534 [Dr. Laroche]). Dr. Heisler is a VA HSR&D Career Development awardee. REACH Detroit Partnership is funded by the Center for Disease Control and Prevention (US0/CCU417409). The authors acknowledge the generous support of the REACH Detroit Partnership Steering Committee and staff, Community Health and Social Services, Inc. (CHASS), and the University of Michigan School of Social Work. We thank the REACH family health advocates for their input. REACH Detroit is affiliated with the Detroit-Community Academic Urban Research Center. The authors would also like to sincerely thank the families who freely gave of their time and insight. This material is the result of work supported with resources and the use of facilities at the Iowa City Veterans Affairs Medical Center. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
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