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Published in: BMC Pediatrics 1/2016

Open Access 01-12-2016 | Debate

Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children

Authors: Sarah Bérubé, Florine Mouillard, Claudine Amesse, Serge Sultan

Published in: BMC Pediatrics | Issue 1/2016

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Abstract

Background

In pediatric hemophilia, caregivers are facing unique challenges to adherence and self-care in children and adolescents with hemophilia. Hemophilia treatment requires adequate prophylaxis and on-demand treatment, as well as a clear behavioral strategy to limit risk-taking in terms of physical exercise and diet. Medication adherence rates of hemophilia patients have been reported to decrease during late childhood and adolescence. In the developing child, moving safely from parent-care to self-care is one of the greatest challenges of integrative care within this domain. There is a clear need for initiatives designed to increase an individual’s motivation for treatment and self-care activities.

Discussion

Among motivational approaches, the self-determination perspective offers a useful framework to explain how the transition to self-care can be facilitated. We discuss how motivation regarding hemophilia treatment may be increased through parental autonomy support and we offer examples of applied communication techniques to facilitate autonomy-supportive caregiving. Although it has not yet been tested in the context of hemophilia, these communication techniques could potentially help caregivers promote adherence and self-care in children.

Summary

Confronted by unique challenges to adherence and self-care, caregivers of children with hemophilia should move from an exclusive focus on illness-management education to an integrative strategy, including motivation-enhancing communication. The self-determination perspective provides important proximal objectives (e.g. autonomy support) to maintain optimal adherence in adolescents as they move from parent-care to self-care. Future research initiatives should address the practice of these communication techniques and evaluate them in the context of hemophilia.
Literature
1.
go back to reference McLaughlin J, Witkop M, Lambing A, Anderson T, Munn J, Tortella B. Better adherence to prescribed treatment regimen is related to less chronic pain among adolescents and young adults with moderate or severe haemophilia. Haemophilia. 2014;20(4):506–12.CrossRefPubMed McLaughlin J, Witkop M, Lambing A, Anderson T, Munn J, Tortella B. Better adherence to prescribed treatment regimen is related to less chronic pain among adolescents and young adults with moderate or severe haemophilia. Haemophilia. 2014;20(4):506–12.CrossRefPubMed
2.
go back to reference García-Dasí M, Aznar J, Jiménez-Yuste V, Altisent C, Bonanad S, Mingot E, et al. Adherence to prophylaxis and quality of life in children and adolescents with severe haemophilia A. Haemophilia. 2015;21(4):458–64.CrossRefPubMed García-Dasí M, Aznar J, Jiménez-Yuste V, Altisent C, Bonanad S, Mingot E, et al. Adherence to prophylaxis and quality of life in children and adolescents with severe haemophilia A. Haemophilia. 2015;21(4):458–64.CrossRefPubMed
4.
go back to reference Geraghty S, Dunkley T, Harrington C, Lindvall K, Maahs J, Sek J, et al. Practice patterns in haemophilia A therapy -- global progress towards optimal care. Haemophilia. 2006;12(1):75–81.CrossRefPubMed Geraghty S, Dunkley T, Harrington C, Lindvall K, Maahs J, Sek J, et al. Practice patterns in haemophilia A therapy -- global progress towards optimal care. Haemophilia. 2006;12(1):75–81.CrossRefPubMed
5.
go back to reference Schrijvers L, Uitslager N, Schuurmans M, Fischer K. Barriers and motivators of adherence to prophylactic treatment in haemophilia: a systematic review. Haemophilia. 2013;19(3):355–61.CrossRefPubMed Schrijvers L, Uitslager N, Schuurmans M, Fischer K. Barriers and motivators of adherence to prophylactic treatment in haemophilia: a systematic review. Haemophilia. 2013;19(3):355–61.CrossRefPubMed
6.
go back to reference Nazzaro A-M, Owens S, Hoots WK, Larson KL. Knowledge, attitudes, and behaviors of youths in the US hemophilia population: results of a national survey. Am J Public Health. 2006;96(9):1618–22.CrossRefPubMedPubMedCentral Nazzaro A-M, Owens S, Hoots WK, Larson KL. Knowledge, attitudes, and behaviors of youths in the US hemophilia population: results of a national survey. Am J Public Health. 2006;96(9):1618–22.CrossRefPubMedPubMedCentral
7.
go back to reference Hacker M, Geraghty S, Manco‐Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001;7(4):392–6.CrossRefPubMed Hacker M, Geraghty S, Manco‐Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001;7(4):392–6.CrossRefPubMed
8.
go back to reference De Moerloose P, Urbancik W, Van Den Berg HM, Richards M. A survey of adherence to haemophilia therapy in six European countries: results and recommendations. Haemophilia. 2008;14(5):931–8.CrossRefPubMed De Moerloose P, Urbancik W, Van Den Berg HM, Richards M. A survey of adherence to haemophilia therapy in six European countries: results and recommendations. Haemophilia. 2008;14(5):931–8.CrossRefPubMed
9.
go back to reference Kahana S, Drotar D, Frazier T. Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. J Pediatr Psychol. 2008;33(6):590–611.CrossRefPubMed Kahana S, Drotar D, Frazier T. Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. J Pediatr Psychol. 2008;33(6):590–611.CrossRefPubMed
10.
go back to reference Young G. From boy to man: recommendations for the transition process in haemophilia. Haemophilia. 2012;18 Suppl 5:27–32.CrossRefPubMed Young G. From boy to man: recommendations for the transition process in haemophilia. Haemophilia. 2012;18 Suppl 5:27–32.CrossRefPubMed
11.
go back to reference Chan DK, Lonsdale C, Ho PY, Yung PS, Chan KM. Patient motivation and adherence to postsurgery rehabilitation exercise recommendations: the influence of physiotherapists’ autonomy-supportive behaviors. Arch Phys Med Rehabil. 2009;90(12):1977–82.CrossRefPubMed Chan DK, Lonsdale C, Ho PY, Yung PS, Chan KM. Patient motivation and adherence to postsurgery rehabilitation exercise recommendations: the influence of physiotherapists’ autonomy-supportive behaviors. Arch Phys Med Rehabil. 2009;90(12):1977–82.CrossRefPubMed
12.
go back to reference Srivastava A, Brewer A, Mauser-Bunschoten E, Key N, Kitchen S, Llinas A, et al. Guidelines for the management of hemophilia. Haemophilia. 2013;19(1):e1–e47.CrossRefPubMed Srivastava A, Brewer A, Mauser-Bunschoten E, Key N, Kitchen S, Llinas A, et al. Guidelines for the management of hemophilia. Haemophilia. 2013;19(1):e1–e47.CrossRefPubMed
13.
go back to reference Ross C, Goldenberg NA, Hund D, Manco-Johnson MJ. Athletic participation in severe hemophilia: bleeding and joint outcomes in children on prophylaxis. Pediatrics. 2009;124(5):1267–72.CrossRefPubMed Ross C, Goldenberg NA, Hund D, Manco-Johnson MJ. Athletic participation in severe hemophilia: bleeding and joint outcomes in children on prophylaxis. Pediatrics. 2009;124(5):1267–72.CrossRefPubMed
14.
go back to reference Fromme A, Dreeskamp K, Pollmann H, Thorwesten L, Mooren F, Völker K, et al. Participation in sports and physical activity of haemophilia patients. Haemophilia. 2007;13(3):323–7.CrossRefPubMed Fromme A, Dreeskamp K, Pollmann H, Thorwesten L, Mooren F, Völker K, et al. Participation in sports and physical activity of haemophilia patients. Haemophilia. 2007;13(3):323–7.CrossRefPubMed
15.
go back to reference Duncan N, Shapiro A, Ye X, Epstein J, Luo M. Treatment patterns, health-related quality of life and adherence to prophylaxis among haemophilia A patients in the United States. Haemophilia. 2012;18(5):760–5.CrossRefPubMed Duncan N, Shapiro A, Ye X, Epstein J, Luo M. Treatment patterns, health-related quality of life and adherence to prophylaxis among haemophilia A patients in the United States. Haemophilia. 2012;18(5):760–5.CrossRefPubMed
16.
go back to reference Morris AD, Boyle DI, McMahon AD, Greene SA, MacDonald TM, Newton RW, et al. Adherence to insulin treatment, glycaemic control, and ketoacidosis in insulin-dependent diabetes mellitus. Lancet. 1997;350(9090):1505–10.CrossRefPubMed Morris AD, Boyle DI, McMahon AD, Greene SA, MacDonald TM, Newton RW, et al. Adherence to insulin treatment, glycaemic control, and ketoacidosis in insulin-dependent diabetes mellitus. Lancet. 1997;350(9090):1505–10.CrossRefPubMed
17.
go back to reference Jonasson G, Carlsen K, Sodal A, Jonasson C, Mowinckel P. Patient compliance in a clinical trial with inhaled budesonide in children with mild asthma. Eur Respir J. 1999;14(1):150–4.CrossRefPubMed Jonasson G, Carlsen K, Sodal A, Jonasson C, Mowinckel P. Patient compliance in a clinical trial with inhaled budesonide in children with mild asthma. Eur Respir J. 1999;14(1):150–4.CrossRefPubMed
18.
go back to reference Austin S, Senécal C, Guay F, Nouwen A. Effects of gender, age, and diabetes duration on dietary self-care in adolescents with type 1 diabetes: a self-determination theory perspective. J Health Psychol. 2011;16:917–28. p. 1359105310396392.CrossRefPubMed Austin S, Senécal C, Guay F, Nouwen A. Effects of gender, age, and diabetes duration on dietary self-care in adolescents with type 1 diabetes: a self-determination theory perspective. J Health Psychol. 2011;16:917–28. p. 1359105310396392.CrossRefPubMed
19.
go back to reference Austin S, Guay F, Senécal C, Fernet C, Nouwen A. Longitudinal testing of a dietary self-care motivational model in adolescents with diabetes. J Psychosom Res. 2013;75(2):153–9.CrossRefPubMed Austin S, Guay F, Senécal C, Fernet C, Nouwen A. Longitudinal testing of a dietary self-care motivational model in adolescents with diabetes. J Psychosom Res. 2013;75(2):153–9.CrossRefPubMed
20.
go back to reference Lindvall K, Colstrup L, Wollter IM, Klemenz G, Loogna K, Grönhaug S, et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12(1):47–51.CrossRefPubMed Lindvall K, Colstrup L, Wollter IM, Klemenz G, Loogna K, Grönhaug S, et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12(1):47–51.CrossRefPubMed
21.
go back to reference Markova I, Macdonald K, Forbes C. Impact of haemophilia on child-rearing practices and parental co-operation. J Child Psychol Psychiatry. 1980;21(2):153–62.CrossRefPubMed Markova I, Macdonald K, Forbes C. Impact of haemophilia on child-rearing practices and parental co-operation. J Child Psychol Psychiatry. 1980;21(2):153–62.CrossRefPubMed
22.
go back to reference Holmbeck GN, Johnson SZ, Wills KE, McKernon W, Rose B, Erklin S, et al. Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioral autonomy. J Consult Clin Psychol. 2002;70(1):96.CrossRefPubMed Holmbeck GN, Johnson SZ, Wills KE, McKernon W, Rose B, Erklin S, et al. Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioral autonomy. J Consult Clin Psychol. 2002;70(1):96.CrossRefPubMed
23.
go back to reference Mak AS. Parental neglect and overprotection as risk factors in delinquency. Aust J Psychol. 1994;46(2):107–11.CrossRef Mak AS. Parental neglect and overprotection as risk factors in delinquency. Aust J Psychol. 1994;46(2):107–11.CrossRef
24.
go back to reference Cimarolli VR, Reinhardt JP, Horowitz A. Perceived overprotection: support gone bad? J Gerontol B Psychol Sci Soc Sci. 2006;61(1):S18–23.CrossRefPubMed Cimarolli VR, Reinhardt JP, Horowitz A. Perceived overprotection: support gone bad? J Gerontol B Psychol Sci Soc Sci. 2006;61(1):S18–23.CrossRefPubMed
25.
go back to reference Janssens KA, Oldehinkel AJ, Rosmalen JG. Parental overprotection predicts the development of functional somatic symptoms in young adolescents. J Pediatr. 2009;154(6):918–23. e1.CrossRefPubMed Janssens KA, Oldehinkel AJ, Rosmalen JG. Parental overprotection predicts the development of functional somatic symptoms in young adolescents. J Pediatr. 2009;154(6):918–23. e1.CrossRefPubMed
26.
go back to reference Eiser C. The psychology of childhood illness. Springer Science & Business Media. New-York; 2012. Eiser C. The psychology of childhood illness. Springer Science & Business Media. New-York; 2012.
27.
go back to reference Dutreil S, Rice J, Merritt D, Kuebler E. Parents Empowering Parents (PEP) Program: understanding its impact on the bleeding disorders community. Haemophilia. 2011;17(5):e895–900.PubMed Dutreil S, Rice J, Merritt D, Kuebler E. Parents Empowering Parents (PEP) Program: understanding its impact on the bleeding disorders community. Haemophilia. 2011;17(5):e895–900.PubMed
28.
go back to reference Deci EL, Ryan RM. Handbook of self-determination research. Rochester: University Rochester Press; 2002. Deci EL, Ryan RM. Handbook of self-determination research. Rochester: University Rochester Press; 2002.
29.
go back to reference Koestner R, Ryan RM, Bernieri F, Holt K. Setting limits on children’s behavior: the differential effects of controlling vs. informational styles on intrinsic motivation and creativity. J Pers. 1984;52(3):233–48.CrossRef Koestner R, Ryan RM, Bernieri F, Holt K. Setting limits on children’s behavior: the differential effects of controlling vs. informational styles on intrinsic motivation and creativity. J Pers. 1984;52(3):233–48.CrossRef
30.
go back to reference Grolnick WS, Deci EL, Ryan RM. Internalization within the family: the self-determination theory perspective. 1997. Grolnick WS, Deci EL, Ryan RM. Internalization within the family: the self-determination theory perspective. 1997.
31.
go back to reference Ryan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol. 2000;55(1):68–78.CrossRefPubMed Ryan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol. 2000;55(1):68–78.CrossRefPubMed
32.
go back to reference Ryan RM, Deci EL. Intrinsic and extrinsic motivations: classic definitions and new directions. Contemp Educ Psychol. 2000;25(1):54–67.CrossRefPubMed Ryan RM, Deci EL. Intrinsic and extrinsic motivations: classic definitions and new directions. Contemp Educ Psychol. 2000;25(1):54–67.CrossRefPubMed
33.
go back to reference Hagger MS, Chatzisarantis NL. Integrating the theory of planned behaviour and self‐determination theory in health behaviour: a meta‐analysis. Br J Health Psychol. 2009;14(2):275–302.CrossRefPubMed Hagger MS, Chatzisarantis NL. Integrating the theory of planned behaviour and self‐determination theory in health behaviour: a meta‐analysis. Br J Health Psychol. 2009;14(2):275–302.CrossRefPubMed
34.
go back to reference Rutten C, Boen F, Seghers J. The relation between environmental factors and pedometer-determined physical activity in children: the mediating role of autonomous motivation. Pediatr Exerc Sci. 2013;25(2):273–87.CrossRefPubMed Rutten C, Boen F, Seghers J. The relation between environmental factors and pedometer-determined physical activity in children: the mediating role of autonomous motivation. Pediatr Exerc Sci. 2013;25(2):273–87.CrossRefPubMed
35.
go back to reference Ryan RM, Deci EL, Grolnick WS, La Guardia JG. The significance of autonomy and autonomy support in psychological development and psychopathology. 2006. Ryan RM, Deci EL, Grolnick WS, La Guardia JG. The significance of autonomy and autonomy support in psychological development and psychopathology. 2006.
36.
go back to reference Joussemet M, Landry R, Koestner R. A self-determination theory perspective on parenting. Can Psychol. 2008;49(3):194.CrossRef Joussemet M, Landry R, Koestner R. A self-determination theory perspective on parenting. Can Psychol. 2008;49(3):194.CrossRef
37.
go back to reference Grolnick WS, Ryan RM. Parent styles associated with children’s self-regulation and competence in school. J Educ Psychol. 1989;81(2):143.CrossRef Grolnick WS, Ryan RM. Parent styles associated with children’s self-regulation and competence in school. J Educ Psychol. 1989;81(2):143.CrossRef
38.
go back to reference Joussemet M, Koestner R, Lekes N, Landry R. A longitudinal study of the relationship of maternal autonomy support to children’s adjustment and achievement in school. J Pers. 2005;73(5):1215–36.CrossRefPubMed Joussemet M, Koestner R, Lekes N, Landry R. A longitudinal study of the relationship of maternal autonomy support to children’s adjustment and achievement in school. J Pers. 2005;73(5):1215–36.CrossRefPubMed
39.
go back to reference Grolnick WS, Gurland ST, DeCourcey W, Jacob K. Antecedents and consequences of mothers’ autonomy support: an experimental investigation. Dev Psychol. 2002;38(1):143.CrossRefPubMed Grolnick WS, Gurland ST, DeCourcey W, Jacob K. Antecedents and consequences of mothers’ autonomy support: an experimental investigation. Dev Psychol. 2002;38(1):143.CrossRefPubMed
40.
go back to reference Grolnick WS, Deci EL, Ryan RM. Internalization within the family: the self-determination theory perspective. In: Grusec JE, Kuczynski L, editors. Parenting and children’s internalization of values: a handbook of contemporary theory. Hoboken: John Wiley & Sons Inc; 1997. p. 135–61. Grolnick WS, Deci EL, Ryan RM. Internalization within the family: the self-determination theory perspective. In: Grusec JE, Kuczynski L, editors. Parenting and children’s internalization of values: a handbook of contemporary theory. Hoboken: John Wiley & Sons Inc; 1997. p. 135–61.
41.
go back to reference Chatzisarantis NL, Hagger MS. Effects of an intervention based on self-determination theory on self-reported leisure-time physical activity participation. Psychol Health. 2009;24(1):29–48.CrossRefPubMed Chatzisarantis NL, Hagger MS. Effects of an intervention based on self-determination theory on self-reported leisure-time physical activity participation. Psychol Health. 2009;24(1):29–48.CrossRefPubMed
42.
go back to reference Joussemet M, Mageau GA, Koestner R. Promoting optimal parenting and children’s mental health: a preliminary evaluation of the How-to parenting program. J Child Fam Stud. 2014;23(6):949–64.CrossRef Joussemet M, Mageau GA, Koestner R. Promoting optimal parenting and children’s mental health: a preliminary evaluation of the How-to parenting program. J Child Fam Stud. 2014;23(6):949–64.CrossRef
43.
go back to reference Faber A, Mazlish E. How to talk so kids will listen & listen so kids will talk. 2012: Simon and Schuster, New-York. Faber A, Mazlish E. How to talk so kids will listen & listen so kids will talk. 2012: Simon and Schuster, New-York.
44.
go back to reference Reeve J, Jang H. What teachers say and do to support students’ autonomy during a learning activity. J Educ Psychol. 2006;98(1):209.CrossRef Reeve J, Jang H. What teachers say and do to support students’ autonomy during a learning activity. J Educ Psychol. 2006;98(1):209.CrossRef
45.
go back to reference Wu YP, Rausch J, Rohan JM, Hood KK, Pendley JS, Delamater A, et al. Autonomy support and responsibility-sharing predict blood glucose monitoring frequency among youth with diabetes. Health Psychol. 2014;33(10):1224.CrossRefPubMed Wu YP, Rausch J, Rohan JM, Hood KK, Pendley JS, Delamater A, et al. Autonomy support and responsibility-sharing predict blood glucose monitoring frequency among youth with diabetes. Health Psychol. 2014;33(10):1224.CrossRefPubMed
46.
go back to reference Williams GC, Deci EL. Activating patients for smoking cessation through physician autonomy support. Med Care. 2001;39(8):813–23.CrossRefPubMed Williams GC, Deci EL. Activating patients for smoking cessation through physician autonomy support. Med Care. 2001;39(8):813–23.CrossRefPubMed
47.
go back to reference Williams GG, Gagné M, Ryan RM, Deci EL. Facilitating autonomous motivation for smoking cessation. Health Psychol. 2002;21(1):40.CrossRefPubMed Williams GG, Gagné M, Ryan RM, Deci EL. Facilitating autonomous motivation for smoking cessation. Health Psychol. 2002;21(1):40.CrossRefPubMed
Metadata
Title
Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children
Authors
Sarah Bérubé
Florine Mouillard
Claudine Amesse
Serge Sultan
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2016
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-016-0542-9

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