Parental Involvement with Adolescents’ Type 1 Diabetes Care Management: Perceptions of Parents and Adolescents

1. Parental Involvement with Adolescents’ Type 1 Diabetes Care Management:Perceptions of Parents and Adolescents CYNTHIA SCHMIDT, Ph.D., R.N. This study was funded through the American Nurses Foundation. Study Consultant – Dr. Kathleen Knafl

2. Problem • The adolescent years pose special problems for those with type 1 diabetes and their parents as this is a period of transition in regards to the responsibility of diabetes care. • Adolescence is a time when blood glucose levels are difficult to control due to biological changes, increased social activities, desire for independence, and the transfer of diabetes management from parent to teen. • Familiar issues of adolescent independence, parental struggles to maintain appropriate supervision, and the complexities of the family dynamics make management challenging. • As children who have type 1 diabetes approach the adolescent years, they assume greater responsibility for their diabetes self-care, while parents become less involved (Schilling, Knafl, & Grey, 2006).

3. INTRODUCTION • If children/teens assume self-care responsibilities prematurely or if parental support is withdrawn too early, metabolic control and psychosocial adjustment can worsen (Palmer et al., 2004; Wiebe et al., 2005). • Teens with diabetes and their parents often have conflicting perceptions regarding diabetes care regimens and the most appropriate time to transfer diabetes responsibilities from the parent to the child (Palmer, et al. 2004; Schilling, Knafl, & Grey, 2006). • Family support plays a major role in children’s/teens’ ability to adapt to the lifestyle changes required by the diagnosis of type 1 diabetes (Hentinen & Kyngas, 1996; Silverstein et al., 2005). • Little is known about the degree and type of parental involvement which best facilitates transition to healthy self-management (Schilling, Knafl, & Grey, 2006; Hanna & Guthrie, 2001).

4. Specific Aims Describe how adolescents define the experience of having type 1 diabetes. Describe how parents of adolescents with type 1 diabetes define the experience of parenting a child with type 1 diabetes. Describe the diabetes management behaviors demonstrated by adolescents with type 1 diabetes and their parents. Identify specific parental behaviors that adolescents with type 1 diabetes view as helpful/deleterious to their ability to assume self-management. Identify specific parental behaviors that parents of adolescents with type 1 diabetes view as helpful/deleterious to their adolescent’s ability to assume self-management. Identify parents’ perceptions of adolescent behaviors that indicate an increased or decreased need for parental support. Compare the perceptions of parents and adolescents regarding all study phenomena.

5. Family Management Style Framework • Illustrates how families define and manage childhood chronic conditions • Considers responses from individual family members within the family’s sociocultural context, to understand how members define the illness and manage situations. • The framework depicts relationships between three variables: 1) definition of the situation 2) management behaviors 3) perceived consequences. • Individual family members’ definitions of the situation and appraisal of perceived consequences of management behaviors in turn influence future management. (Knafl and Deatrick, 2003)

6. DESIGN AND METHODS • A qualitative, descriptive cross-sectional design • Semi-structured interview guides • One-on-one interviews with teen and parent(s) • Fundamental qualitative descriptive method • Less interpretive than more commonly used methods • Purposeful sampling technique • Individual interviews • Qualitative content analysis • “Re-presentation” of data – using the words of the participants • Manifest analysis to compare between groups

7. SAMPLE • A maximum variation sampling technique – 18 dyads • Three specified age groups early adolescence (11 – 15 years) mid-adolescence (15 to 17 years) late adolescence (17 years & older) • Dyads from both “Good” and “Poor” metabolic control groups as measured by: • average of 3 most recent Hbg A1C Good = <8% Poor = >9.5% • frequency of urgent care visits • input from clinic representative

8. SAMPLE

9. Aim 1: Describe how adolescents define the experience of having type 1 diabetes. • Like “house arrest” (poor=6,good=2) • “Not so bad” (good=7,poor=1) • Feeling different (good=5,poor=1) • Burden Future Impact • It is frightening (n=7) • Future health risks and costs - “I try not to think about it because it is too scary” • Being alone – “What if I don’t wake up and my family is not there to help me? • Anticipating a cure (n=4) • “I usually don’t think about it because they’ve been talking about a cure … I just hope it comes by the time I’m 18 (male=13) • More responsibility than others Teens report their perspective varies, day to day or week to week

10. Aim 2: Describe how parents of adolescents with type 1 diabetes define the experience of parenting a child with type 1 diabetes. • Almost all parents were tearful during parts of the interview, expressing sadness for their child and fear for the child’s future. • It is the “forefront” of my day – every day Future Impact • Concern for child’s health (n=12) • Fear of child’s impending independence • Frustration that child is not concerned with future • “He doesn’t think that far ahead” • “He isn’t living in reality”

11. Aim 3. Describe the diabetes management behaviors demonstrated by adolescents with type 1 diabetes. Teen Behaviors • Child follows regimen with reminders, but little physical assistance(GT=9, GP=8, PT=3, PP=4 – older children) • Adherence to regimen is inconsistent(GT=2, GP=0,PT=6, PP=4)

12. Parental Appraisal of Teen Management Behaviors • Child is not adhering to regimen even though he/she knows how (PP=7/9) • “…and then it goes so high and it’s like, ‘Are you stupid or something? Honestly?’ And we yell at him all the time.” • “He admitted that he wasn’t testing, that he was taking his shots when he just felt like he should.” • “We may both forget to inject, or wait a little bit longer than we should … or he’ll guess if he’s by himself.” • Parent pleased with child’s management behavior (GP=4) • Grocery store – “No, Mom, it has 28 carbs” • “After school, at 3pm, she calls or texts me to tell me what her number is” • “I think he gets depressed sometimes that he has to deal with this”

13. Aim 3. Describe the diabetes management behaviors demonstrated by parents of adolescents with type 1 diabetes. Parent Behaviors • Parental oversight (33/36) • Checking numbers, supplies, dr. appt. • “And then if he is at a friends, I’ll say, “Please call at 10” • “My husband is up all night long, every night…” • “I spend a lot of time on the phone with the school nurse” • “Pinch hitting”/Easing the burden (GT=4, GP=3,PT=1, PP=2) • Joint decisions/Team approach (GT=5, GP=2,PP=2) • Parental reminders • Nagging/Yelling (GT=4,PT=6) • Parents feeling they are doing “too much”

14. Teen Appraisal of Parental Management Behaviors • Teen happy with degree of parental involvement (GT=6/9, PT=8/9) • Parents are helpful, but annoying (GT=6, PT=6) • Parent reminders “start to get annoying, but I would be a lot worse off without them.” • At times child is frustrated with parents “hovering” and “nagging”(GT=4, PT=6) • In front of friends • Constancy* • Invasion of privacy* (checking meter/supplies in room) • Am I me, or am I DIABETES? – “It’s the only thing they ever get involved with.” “So it’s every single time I’m high, ‘WHY?’, well I don’t know, but I’ll correct for it. Now can we just go on and eat dinner?”

15. Parent Appraisal of Parental Management Behaviors Seeking Balance • Parent(s) feel it is their responsibility to stay involved (GP=5, PP=6) • It is frightening to give away responsibility, but child wants it and we are trying (GP=6,PP=5) • Parent(s) have tried to give more responsibility to child, but unsuccessfully (GP=2,PP=8) • Comfort level with balance of responsibility (GP=6,PP=2) • Parent(s) tired and want to be less involved (GP=2,PP=4) • We did the best we could (GP=4,PP=1) • I don’t think I’ve done well at all (PP=3) • I don’t know how I’ve done (PP=2) • We have made mistakes, but have gotten better. • I wish we would have done things differently.

16. 4. Identify specific parental behaviors that adolescentswith type 1 diabetes view as helpful/deleterious to their ability to assume self-management. • Stay involved no matter what we say (GT=5,PT=5) • Tell me you love me (GT=4, PT=7) • Be there to listen and help, not punish (GT=7,PT=4) • Provide words of reassurance • Praise us when we are successful • Don’t say you understand what it is like, because you don’t. • Give us freedom, but supervise us. • Don’t focus on numbers - Don’t ask me too often • Have good food in the house

17. 5. Identify specific parental behaviors that parents of adolescents with type 1 diabetes view as helpful and/or deleterious to their adolescent’s ability to assume self-management. • Stay involved and facilitate ease of regimen • Provide healthy food • Order supplies • Perform skills when teen requests/is overwhelmed • Learn all you can about diabetes • Be an advocate • Find the right HCP • Find the child a “buddy” or send to camp • Help child be as normal as possible • Provide reassurance • “You are different, but not that different” • “We are always here for you” • “It is not your fault” • Do not let the disease define the child • Build a circle of awareness (teachers and friends)

18. Advice to Teens from Parents • Let’s talk/ Don’t withhold information • Let us know when you are having trouble • Ask for help – Everyone needs help with this • Understand that your parents worry about you

19. Aim 6: Identify parents’ perceptions of adolescent behaviors that indicate an increased or decreased need for parental support. • The main determinant = metabolic control • Increased support needed if poor control and: • Child not checking bg or not taking insulin • Sneaking food • Cheating with meter • Running bg high to lose weight • Less support necessary if good control and: • “Child showing more responsibility” • Child asking for more responsibility and following through

20. CONCLUSIONS • The complexity of family relationships and the demands of a diabetes regimen pose significant challenges for families. • Parents and teens alike are frightened for the child’s future. • Perspectives of the burden of diabetes demands are variable and unpredictable. • Parents strive to advocate for their child and to provide appropriate support, yet are often uncertain of the approach to take. • Teens need and want the support of parents, yet are often critical of parental approaches. • Finding the appropriate balance of responsibilities is complicated and dynamic.

21. IMPLICATIONS FOR CARE Nurses should encourage parents to: • demonstrate interest in and love for their child, separate from diabetes • stay involved in diabetes care and management • Question is how to do this* • seek an appropriate balance of responsibilities • Stepwise approach • acknowledge that the demands are burdensome, but achievable • create an environment of open communication • Team Approach - Consultant • build a circle of awareness to minimize parental burden

22. Limitations • All participants received care from the same health care facility • Semi-structured interview guides were used for the first time • Each participant was interviewed only one time • Other aspects of teen’s social world, which may influence child’s perspective, were not a major focus of the interviews