PARENTS' PERCEIVED BENEFITS AND BARRIERS OF ADOLESCENTS' DIABETES SELF-MANAGEMENT: PART 2

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Issues in Comprehensive Pediatric Nursing, 23:193–202, 2000Copyright ã 2000 Taylor & Francis0146-0862/00 $12.00 + .00

PARENTS’ PERCEIVED BENEFITS AND BARRIERSOF ADOLESCENTS’ DIABETES SELF-MANAGEMENT:PART 2

KATHLEEN M. HANNA, PhD, RNIndiana University School of Nursing, Indianapolis, Indiana, USA

DIANA GUTHRIE, PhD, FAAN, CDEUniversity of Kansas School of Medicine, Wichita, Kansas, USA

Knowledge is limited about parents’ decision making regarding adolescents’ assump-tion of diabetes management. This study’s purpose was to identify parents’ perceivedbenefits and barriers about this process. We interviewed 17 parents of adolescentswith type 1 diabetes. Questions were adapted from Janis and Mann’s (1977) deci-sional balance sheet. Interviews were audiotaped and transcribed verbatim. Descriptiveexpressions were identified and categories inductively generated. Inter-rater agreementwas initially 85% and was 100% after discussion of disagreements. Parents’ perceivedbenefits for themselves were relief from burden and knowledge and confidence and/orpride in adolescents’ abilities. Their perceived benefits for their sons and daughterswere also twofold: knowledge and/or confidence in abilities and freedom, indepen-dence, and/or control. Parents perceived barriers for themselves were loss of control,authority, and supervision, dealing with consequences, and expression of lack ofbarriers. Their perceived barriers for their sons and daughters were burden ofresponsibility and also lack of barriers. Understanding parents’ perceived benefitsand barriers would be beneficial to health care professionals when working withparents, because decision making related to the transfer of diabetes managementto their adolescent sons and daughters is crucial to the success of its management.

Received 26 April 2000; revised 26 June 2000; accepted 6 August 2000.Kathleen Hanna received support from Ruth Perkins Kuehn Research Award and

NRSA Grant # PHS T32NR07066 (Postdoctoral Fellow, Indiana University Schools of Nursingand Medicine—Adolescent Section). Appreciation is extended to B. Juarez, S. Lenss, D. Ailes, andK. Gilmet for help with data collection and management.

Address correspondence to Kathleen Hanna, PhD, RN, Indiana University School of Nurs-ing, Department of Family Health, 1111 Middle Dr., NU 451, Indianapolis, IN 46202-5107,USA.

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194 K. M. Hanna and D. Guthrie

During adolescence, parents need to relinquish their role as primarymanager of their children’s diabetes regimen (Gray, Marrero, Godfrey,Orr, & Golden, 1988). In general, parents decrease their involvementin diabetes management during adolescence (Anderson, Ho, Brackett,Finkelstein, & Laffel, 1997; Ingersoll, Orr, Herrold, & Golden, 1986).However, little is known about parental factors involved in the transfer ofdiabetes management to adolescents (Anderson, Auslander, Jung, Miller,& Santiago, 1990; Jacobson, et al., 1987; Johnson, Silverstein, Rosenbloom,Carter, & Cunningham, 1986; Miller-Johnson, et al., 1994; Wysocki, Hough,Ward, & Green, 1992).

Parents’ decision making, specifically what they perceive as benefitsand barriers to relinquishing responsibility, may be relevant to under-standing the transfer of diabetes management to the adolescent. Accord-ing to the classic Health Belief Model (Rosenstock, 1966), perceivedbenefits are weighed against perceived barriers in making a decision abouta health behavior. Identifying perceptions that reflect clients’ viewsof their experience also provides a means of working with clients tochange behavior (Kasch, 1986; King, 1981). Interactions between nursesand clients in which consideration of perceived benefits and barriers isfacilitated has been proposed as a strategy to change behavior (Hanna,1995). However, parents’ perceived benefits and barriers about transfer-ring diabetes management has not been studied.

Parents’ decision making, specifically their perceived benefits and bar-riers, may be an important aspect to a successful transfer of diabetesmanagement between parents and adolescents. Because there is a paucityof studies in this area, exploration of parents’ perspective is warranted.The purpose of our study was to identify parents’ perceived benefits andbarriers to transferring diabetes management to adolescents. The specificresearch question was: What are parents’ perceived benefits and barriersrelated to adolescents assuming and parent relinquishing diabetes man-agement during adolescence?

DESIGN AND METHODS

The study was part of a larger exploratory–descriptive study. As part ofthe larger study of parent and adolescent variables, parents’ perceivedbenefits and barriers were examined.

Sample

The sample consisted of 17 parents of adolescents with type 1 diabetes.Enrollment was from diabetes specialty clinics in western and midwesternstates. Criteria for inclusion of participants were:

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Adolescents’ Diabetes Self-Management: Part 2 195

· Parents of adolescents between 11 through 18 years of age whowere diagnosed with type 1 diabetes mellitus prior to 10 years ofage; and whose adolescents had a diabetes regimen that includedinsulin injections, glucose monitoring, meal planning, and exercise;and were without any obvious mental or physical health problems(such as neuropathy, macroangiopathy, and retinopathy).

· Living with the adolescent.· Able to speak English.· Absence of any obvious mental or physical health problems that

would impact abilities for diabetes management.

The majority of parents who participated in the interviews were mothers(76%). Two interviews were of both parents, with responses from bothfather and mother treated as one-parent interview. The parents were pre-dominately Caucasian (88%). Highest educational attainment rangedfrom 11th grade to having a doctorate, with 24% having graduated fromhigh school and 29% having a bachelor’s degree. Incomes ranged from$10,000 and less to over $100,000, with 29% between $50,000 and $60,000.Of the adolescent children, 53% were female. The mean age of the ado-lescents was 14.5 (SD = 2.0) and the mean years of living with thediagnosis of diabetes was 6.9 years (SD = 2.8). The mean hemoglobinAlC of this adolescent group was 8.7 (SD = 1.4).

Interview

The goal of the interview was to identify perceptions involved in thetransfer of diabetes management from the perspective of parents. Thesemistructured interviews consisted of open-ended questions to elicit per-ceptions of benefits and barriers involved in decision making. The ques-tions were based on Janis and Mann’s (1977) classic decisional balancesheet, where pros and cons for self and significant others are proposed tobe important to decision making. Eliciting perceptions of self (parent)and significant other (adolescent) is consistent with changing roles forparents and adolescents. Current and classic writings note that role tran-sitions occur in relationships (Cowan, 1991) and involve major reorgani-zations (Parkes, 1971).

Four questions were used to investigate what parents considered tobe the advantages and disadvantages of adolescents’ diabetes self-man-agement:

1. What are the pros or advantages for you?2. What are the pros or advantages for your son or daughter(s)?3. What are the cons or disadvantages for you?4. What are the cons or disadvantages for your son or daughter?

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Parents were interviewed either face-to-face or on the telephone. Tele-phone interviews were conducted when participants lived in a statedifferent from interviewer. Interviews were primarily conducted by theprimary investigator as well as by masters-in-nursing students. All weretrained in the data collection protocol. The interviews (as part of thelarger study) lasted 1 hr. The interviews were audiotaped and transcribedverbatim. Field notes were made on experiences and problems thatoccurred during data collection, as suggested by Kirk and Miller (1986).

Procedure

Approval for the conduct of study was received from Institutional Re-view Boards where the primary investigator had affiliations. In addition,permissions were obtained from appropriate clinic personnel of whichparticipants were enrolled. When adolescents and their parents had ap-pointments for diabetes management, the study was explained and writ-ten consents obtained from parents. Convenient times for interviews werethen set up. Incentives of phone cards were given at the completion ofinterviews, as part of a larger study.

Data Analysis

The primary investigator conducted an inductive content analysis on thetranscribed interview data. Parents’ responses were read identifying phrasesor sentences that conveyed a predominant meaning in relation to theinterview question. The descriptions were grouped in general categories.Inter-rater agreement was conducted by a doctorally prepared person, whohas expertise with diabetic adolescents, placing descriptions in categoriesidentified by the primary investigator. Inter-rater agreement was initially85% and then 100% after the investigators discussed the debatable items.

FINDINGS

Participants provided 94 descriptions of perceived benefits and barriersof adolescents’ diabetes self-management. Parents perceived benefits forthemselves as (a) relief from burden and (b) knowledge, confidence, and/or pride in adolescents’ abilities. For their sons and daughters, parentsperceived benefits as (a) knowledge and/or confidence in abilities and (b)freedom, independence, and/or control. Parents perceived barriers forthemselves as (a) loss of control, authority, and/or supervision, (b) dealingwith consequences, and (c) expression of lack of barriers. For their sonsand daughters, parents perceived barriers as (a) burden of responsibilityand (b) expression of lack of barriers.

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Benefits for Parents Related to Adolescents’Diabetes Self-Management

Participants gave 28 descriptions related to the advantages for themselvesof their sons’ or daughters’ diabetes self-management. The majority ofdescriptions (n = 23) were categorized as relief from burden, in termsof responsibility, stress, worry, and dealing with problems. For someparticipants, relief from burden was related to worrying. For example,participants noted, “Less worry about him getting them [tasks related todiabetes care] done”; “A little bit more peace of mind, a little bit, I stillworry for other reasons now”; and “More she does . . . better off I’ll feel. . . more that I see that she’s able to manage it all . . . less frightened I’mgoing to feel when she goes off totally.” For other participants, relieffrom burden of responsibilities was expressed by comments such as “Takesa lot off my shoulders as far as having to be responsible for everything”and “Gives me a relief a little bit that I don’t have to deal with it . . . thenI can do other things.”

Descriptions (n = 5) also reflected knowledge/confidence/pride intheir sons’ or daughters’ abilities and maturity. Examples were “Makesme feel better to know . . . that he’s doing these things on his own andhe’s doing a good job at them”; “Pride in that he can do it”; and “An-other sign of maturity . . . that he’s ready to start some . . . other respon-sibilities. . . .”

Benefits for Adolescents Relatedto Their Diabetes Self-Management

Participants gave 24 descriptions of benefits to their sons’ or daughters’from diabetes self-management. The descriptions yielded two categories.Descriptions were either in the category of knowledge and/or confidencein abilities (n = 11) or in the category of freedom, independence, and/orcontrol (n = 13). Examples of knowledge and/or confidence were:“She’s just really matured and she’s responsible for herself . . . knowsthat her health depends on her taking care of herself”; “To be able togo spend time with her friends away from us and know she was capableof taking care of it”; and “Know she was capable of taking care ofit.” Examples of freedom, independence, and/or control were: “Sense ofownership of her disease . . . she’s handling it and it’s up to her, shedoesn’t have somebody else interfering in it”; “It kind of gives him alittle bit more freedom to be able to go do things”; and “Probably havingmore control over his life . . . not having somebody tell him ‘you need tothis’ . . . He just needs to have the independence . . . that sense thathe can do it on his own.”

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Barriers for Parents Related to Adolescents’Diabetes Self-Management

Participants gave 22 descriptions of disadvantages for parents of their sonor daughter assuming diabetes management. The descriptions yielded thecategories of loss of control/authority/supervision; dealing with conse-quences such as stress, worry, guilt, and problems; and lack of barriers.Seven descriptions were about loss of control such as “I don’t have con-trol anymore,” and “We would lose that control that we’ve had since hewas three.” Some participants noted the loss of supervision: “I guess justlosing touch with what all was going on,” and “I’m not always awareright off of what her dosage is, so if there was a medical emergency, itmight be difficult for me to be a lot of help.” One participant noted thelack of authority: “When he started questioning things on us.”

The most descriptions (n = 11) were in the category of dealing withconsequences, in terms of stress, worry, guilt, and problems. Some par-ticipants noted worry such as “Worrying that she’s going to be doingthem right [and] doesn’t need something.” Some participants focusedon worry but were related to loss or control. An example was: “It stillmakes me worry a lot because like I don’t know how he’s doing.” Somedescriptions that illustrated dealing with consequences were related toconsequence of poor management. Examples were “The times when sheforgets or something . . . she may have a high or low reaction and we’renot there . . . what we have to do to deal with the reaction”; and “If hedoesn’t do well, then I would be part of helping fix things.” One partici-pant noted guilt: “When he gets sick then I feel like it’s my fault becauseI wasn’t there taking care of it.” A few participants (n = 3) noted a lackof barriers.

Barriers for Adolescents Relatedto their Diabetes Self-Management

Participants gave 20 descriptions of barriers to the question related to thedisadvantages for their sons’ and daughters’ diabetes self-management.Most of descriptions (n = 17) were in the category of the burden ofdiabetes management. For some participants, burden was related toactually performing diabetes management such as “Always have to belugging the equipment around”; “I think sometimes . . . he just needs abreak . . . not always doing the same routine everyday and just likes togive it to somebody else . . . it’s a big responsibility . . . sometimes Ithink he’d just like to pass it on”; and “Having to remember . . . whenyou’re having a good time . . . ‘well, has it been two hours’ or ‘do I needa poke’.” For other participants, burden was related to consequences such

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as “He’d have more fluctuations in his blood sugar because he wouldforget things”; “The disadvantage for her is her own health care . . .that’s going to be the long, long term as well”; and “In the long run hishealth would be a lot worse.” A few participants (n = 3) noted there wasa lack of barriers.

DISCUSSION

Parents perceived both positive and negative aspects of adolescents’diabetes self-management. With the benefit of parental relief from theburden of diabetes management came the barrier of loss of control/authority/supervision and having to deal with consequences of adoles-cents’ management or mismanagement of their diabetes. While parentsperceived a benefit for themselves as relief from the burden, they per-ceived adolescents would then have the barrier of that burden. With theiradolescents’ barrier of burden of diabetes management, parents also per-ceived benefits: adolescents would have knowledge and confidence intheir abilities and more freedom, independence, and control.

Parents are in a “balancing act.” They are struggling with balancingthe burden of diabetes management between themselves and their ado-lescents. Burden is a barrier for adolescents assuming diabetes manage-ment, whereas it is a benefit for parents to relinquish the burden ofdiabetes management. That burden of care, such as complexity of regi-men, negatively affects management of treatment regimens has long beenrecognized (Kasl, 1975). Further, the findings support Dashiff’s (1993)findings that parents of diabetic adolescents had feelings of worry andguilt.

Some of the findings may be related to normal adolescent developmen-tal changes within parent–adolescent relationships. Adolescence is a timeof increasing autonomy and changes occur within the adolescent–parentrelationship (Steinberg, 1989; Sessa & Steinberg, 1991). Parent-adolescentrelationships ideally become more mutually cooperative (Grotevant &Cooper, 1986) and reciprocal (Baumrind, 1996; Maccoby, 1992). In ourstudy, parents appear to recognize the developmental needs of ado-lescence and are struggling through this process. Many parents noted thatbenefits for their sons and daughters involved freedom, independence, andcontrol. Parents also noted the perceived barrier of losing control. Anotherexplanation may be that parents are struggling with balancing develop-mental needs of adolescence with the seriousness of diabetes and theconsequences of poor management. Many parents also noted the barrierof dealing with consequences of poor management.

Our findings should be cautiously generalized to all parents of adoles-cents with diabetes. The data from 17 parents may not represent the

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perspectives of the larger populations of parents of adolescents who havediabetes. Also parents who participate in research might be different fromnonparticipators. Riekert and Drotar (1999) reported that parents who didnot participate had less education than those who did participate in astudy of parent–adolescent relationships (sample of parents of adoles-cents with diabetes). Participants may be more motivated than nonpartici-pants. Parents who participate had sons’ or daughters’ who were moreadherent to diabetes regimen than parents who did not participate (Riekert& Drotar, 1999).

It is difficult as to speculate as to the representiveness of this samplebecause we did not know how many parents declined to be contacted(clinic personnel were eliciting permissions for investigators to contact).However, the data of 94 descriptions of perceived benefits and barriersprovide a beginning knowledge base of parents’ perceptions involved intheir decision making about relinquishing diabetes management. Further,it represents the perspective of parents from different clinics and differentstates.

Implications for Practice and Research

Identification of relevant perceptions for the transfer of diabetes manage-ment from parents to adolescents can be part of an assessment guide andincluded in anticipatory guidance. Assessment of both parents and ado-lescents is warranted to help parents and adolescents with this transition.Further identification of parents’ perceived benefits and barriers couldbe used to structure health care professional–client interactions. Inter-actions between health care professionals and clients around perceptionsare persuasive communication, and persuasive communication has beenproposed to influence health behavior (Bandura, 1992; King, 1981; Kasch,1986).

Our findings suggest that further examination of parent–adolescentrelationships is warranted. Parents’ provision of opportunities for in-dependence and autonomy along with comparison of parents and ado-lescents perceptions could be examined. Based upon those findings,diabetes-specific measures and interventions can be developed and fur-ther studies can be designed. A tool to assess perceptions related totransfer diabetes management could be beneficial. With reliable mea-sures, a predictive model for successful transfer of diabetes managementfrom identified relevant perceptual variables could be tested. Parents’decision making about transferring diabetes management to adoles-cents could be facilitated with interventions to address influential per-ceptions.

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PARENTS' PERCEIVED BENEFITS AND BARRIERS OF ADOLESCENTS' DIABETES SELF-MANAGEMENT: PART 2