The nature of the experience |
Six-phase parental coping process(4343 Seppänen SM, Kyngäs HA, Nikkonen MJ. Coping and social support of parents with a diabetic child. Nurs Health Sci. 1999;1(1):63-70. https://doi.org/10.1046/j.1442-2018.1999.00009.x https://doi.org/10.1046/j.1442-2018.1999...
) |
Three-phase care experiences(4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Dynamic path “over time”(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2626 Ayala J, Howe C, Dumser S, Buzby M, Murphy K. Partnerships with providers: reflections from parents of children with type 1 diabetes. West J Nurs Res. 2014;36(9):1238-53. https://doi.org/10.1177/0193945913518848 https://doi.org/10.1177/0193945913518848...
-2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
41 Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18(1):21-9. https://doi.org/10.1053/jpdn.2003.4 https://doi.org/10.1053/jpdn.2003.4...
-4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
) |
Feelings and emotions experienced |
Grief/losses(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,44 Rifshana F, Breheny M, Taylor JE, Ross K. The Parental Experience of Caring for a Child with Type 1 Diabetes. J Child Fam Stud. 2017;26(11):3226-36. https://doi.org/10.1007/s10826-017-0806-5 https://doi.org/10.1007/s10826-017-0806-...
,2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
-2121 Pimentel R, Targa T, Scardoelli M. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE. 2017;11(3):1118-26. https://doi.org/10.5205/reuol.10544-93905-1-RV.1103201701 https://doi.org/10.5205/reuol.10544-9390...
,2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Sadness, shock, guilt, distress, anxiety, anger, obsession, powerlessness, and fear(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
-2121 Pimentel R, Targa T, Scardoelli M. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE. 2017;11(3):1118-26. https://doi.org/10.5205/reuol.10544-93905-1-RV.1103201701 https://doi.org/10.5205/reuol.10544-9390...
,2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
24 Lawton J, Waugh N, Noyes K, Barnard K, Harden J, Bath L, et al. Improving communication and recall of information in paediatric diabetes consultations: a qualitative study of parents’ experiences and views. BMC Pediatr. 2015;15(1):67. https://doi.org/10.1186/s12887-015-0388-6 https://doi.org/10.1186/s12887-015-0388-...
25 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
26 Ayala J, Howe C, Dumser S, Buzby M, Murphy K. Partnerships with providers: reflections from parents of children with type 1 diabetes. West J Nurs Res. 2014;36(9):1238-53. https://doi.org/10.1177/0193945913518848 https://doi.org/10.1177/0193945913518848...
27 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
28 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
-2929 Martins E, Ataíde M, Silva D, Frota M. Experience of mothers in the care of children with type 1 diabetes. Rev Rene[Internet]. 2013 [cited 2020 Feb 20];14(1):42-9. Available from: http://www.periodicos.ufc.br/rene/article/view/3323/2561 http://www.periodicos.ufc.br/rene/articl...
,3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3737 Sullivan-Bolyai S, Rosenberg R, Bayard M. Fathers’ reflections on parenting young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2006;31(1):24-31. https://doi.org/10.1097/00005721-200601000-00007 https://doi.org/10.1097/00005721-2006010...
-3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Constant and diverse concerns(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
-3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Between hope and despair, trust and vulnerability(2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
) |
Optimism(3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
) |
Positive and mixed feelings(3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
) |
Relief(2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
) |
Hindering conditions/stressors |
Facing treatment responsibility after hospital discharge(2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Insufficient information transmitted in the hospital(1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
,2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
) and difficulty in its understanding and assimilation(2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
,2424 Lawton J, Waugh N, Noyes K, Barnard K, Harden J, Bath L, et al. Improving communication and recall of information in paediatric diabetes consultations: a qualitative study of parents’ experiences and views. BMC Pediatr. 2015;15(1):67. https://doi.org/10.1186/s12887-015-0388-6 https://doi.org/10.1186/s12887-015-0388-...
,2626 Ayala J, Howe C, Dumser S, Buzby M, Murphy K. Partnerships with providers: reflections from parents of children with type 1 diabetes. West J Nurs Res. 2014;36(9):1238-53. https://doi.org/10.1177/0193945913518848 https://doi.org/10.1177/0193945913518848...
) |
Difficulty in managing care, meeting children’s needs at home(1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
-1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2121 Pimentel R, Targa T, Scardoelli M. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE. 2017;11(3):1118-26. https://doi.org/10.5205/reuol.10544-93905-1-RV.1103201701 https://doi.org/10.5205/reuol.10544-9390...
22 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
-2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
26 Ayala J, Howe C, Dumser S, Buzby M, Murphy K. Partnerships with providers: reflections from parents of children with type 1 diabetes. West J Nurs Res. 2014;36(9):1238-53. https://doi.org/10.1177/0193945913518848 https://doi.org/10.1177/0193945913518848...
-2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
) and performing painful procedures(1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Risk of hypoglycemia (2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
39 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
-4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
), in particular the nocturnal(2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) |
Insecurity in their ability to keep their child safe(3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
) being cared for by others(2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) and at school(2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
) |
Inadequate support from friends and family(2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
) |
Unpredictability of blood glucose and inability to control it(4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Lack of social support(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
), health professionals(2121 Pimentel R, Targa T, Scardoelli M. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE. 2017;11(3):1118-26. https://doi.org/10.5205/reuol.10544-93905-1-RV.1103201701 https://doi.org/10.5205/reuol.10544-9390...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
), peers(2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
) and daycare/schools(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
) |
School change, vacation, family outings(3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
), parties(4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) and care context transition(3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
) |
Fear judgment by health professionals(2424 Lawton J, Waugh N, Noyes K, Barnard K, Harden J, Bath L, et al. Improving communication and recall of information in paediatric diabetes consultations: a qualitative study of parents’ experiences and views. BMC Pediatr. 2015;15(1):67. https://doi.org/10.1186/s12887-015-0388-6 https://doi.org/10.1186/s12887-015-0388-...
) |
Social isolation(4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Early age of children(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
), child growth and development(4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
), adolescence(3535 Paterson B, Brewer J. Needs for social support among parents of adolescents with diabetes. J Nurs Healthc Chronic Illn. 2009;1(2):177-85. https://doi.org/10.1111/j.1752-9824.2009.01019.x https://doi.org/10.1111/j.1752-9824.2009...
) |
Children’s negative reaction to the therapeutic regimen(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
) |
Facilitating conditions |
Health professional support (team)(1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
,2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
-2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
26 Ayala J, Howe C, Dumser S, Buzby M, Murphy K. Partnerships with providers: reflections from parents of children with type 1 diabetes. West J Nurs Res. 2014;36(9):1238-53. https://doi.org/10.1177/0193945913518848 https://doi.org/10.1177/0193945913518848...
27 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
-2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3333 Smaldone A, Ritholz MD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care. 2011;25(2):87-95. https://doi.org/10.1016/j.pedhc.2009.09.003 https://doi.org/10.1016/j.pedhc.2009.09....
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) |
Family support(1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
) |
Support provided by other parents with children with 1DM/support groups(2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
-2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,3030 Nurmi MA, Stieber-Roger K. Parenting children living with type 1 diabetes: a qualitative study. Diabetes Educ. 2012;38(4):530-6. https://doi.org/10.1177/0145721712446636 https://doi.org/10.1177/0145721712446636...
,3232 Rearick EM, Sullivan-Bolyai S, Bova C, Knafl KA. Parents of children newly diagnosed with type 1 diabetes: experiences with social support and family management. Diabetes Educ. 2011;37(4):508-18. https://doi.org/10.1177/0145721711412979 https://doi.org/10.1177/0145721711412979...
-3333 Smaldone A, Ritholz MD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care. 2011;25(2):87-95. https://doi.org/10.1016/j.pedhc.2009.09.003 https://doi.org/10.1016/j.pedhc.2009.09....
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) |
Support provided by teachers and friends(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
) |
Strategies used by parents |
Learning(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
-1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) and developing skills on 1DM and therapeutic regimen management(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
-1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2121 Pimentel R, Targa T, Scardoelli M. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE. 2017;11(3):1118-26. https://doi.org/10.5205/reuol.10544-93905-1-RV.1103201701 https://doi.org/10.5205/reuol.10544-9390...
,2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
-2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3232 Rearick EM, Sullivan-Bolyai S, Bova C, Knafl KA. Parents of children newly diagnosed with type 1 diabetes: experiences with social support and family management. Diabetes Educ. 2011;37(4):508-18. https://doi.org/10.1177/0145721711412979 https://doi.org/10.1177/0145721711412979...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
37 Sullivan-Bolyai S, Rosenberg R, Bayard M. Fathers’ reflections on parenting young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2006;31(1):24-31. https://doi.org/10.1097/00005721-200601000-00007 https://doi.org/10.1097/00005721-2006010...
38 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
39 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
40 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
41 Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18(1):21-9. https://doi.org/10.1053/jpdn.2003.4 https://doi.org/10.1053/jpdn.2003.4...
-4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Focusing on the practical aspects of managing 1DM and children’s needs(2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
,3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
-4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Intensely watching their children(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
,4141 Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18(1):21-9. https://doi.org/10.1053/jpdn.2003.4 https://doi.org/10.1053/jpdn.2003.4...
-4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) and being permanently alert(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
), even at night(2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
,3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
) |
Establishing routines for the children and family(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,44 Rifshana F, Breheny M, Taylor JE, Ross K. The Parental Experience of Caring for a Child with Type 1 Diabetes. J Child Fam Stud. 2017;26(11):3226-36. https://doi.org/10.1007/s10826-017-0806-5 https://doi.org/10.1007/s10826-017-0806-...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
39 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
-4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
,4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Being methodical in the therapeutic regimen execution(4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) and searching in documentary sources(1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
) |
Changing children’s and family’s habits(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) |
Performing specific 1DM technical care(2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
,2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
-2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
) |
Managing the therapeutic regimen with progressive flexibility(4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
) |
Educating school staff(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,4444 Faulkner MS. Family responses to children with diabetes and their influence on self-care. J Pediatr Nurs. 1996;11(2):82-93. https://doi.org/10.1016/S0882-5963(96)80065-0 https://doi.org/10.1016/S0882-5963(96)80...
), engaging in educational and child advocacy initiatives(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,3030 Nurmi MA, Stieber-Roger K. Parenting children living with type 1 diabetes: a qualitative study. Diabetes Educ. 2012;38(4):530-6. https://doi.org/10.1177/0145721712446636 https://doi.org/10.1177/0145721712446636...
-3131 Dashiff C, Riley BH, Abdullatif H, Moreland E. Parents’ experiences supporting self-management of middle adolescents with type 1 diabetes mellitus. Pediatr Nurs [Internet]. 2011[cited 2020 Feb 20];37(6):304-10. Available from: https://pubmed.ncbi.nlm.nih.gov/22256691/ https://pubmed.ncbi.nlm.nih.gov/22256691...
,4444 Faulkner MS. Family responses to children with diabetes and their influence on self-care. J Pediatr Nurs. 1996;11(2):82-93. https://doi.org/10.1016/S0882-5963(96)80065-0 https://doi.org/10.1016/S0882-5963(96)80...
) |
Struggling to affirm the children as “normal”, with a particular characteristic (having 1DM)(3030 Nurmi MA, Stieber-Roger K. Parenting children living with type 1 diabetes: a qualitative study. Diabetes Educ. 2012;38(4):530-6. https://doi.org/10.1177/0145721712446636 https://doi.org/10.1177/0145721712446636...
,3737 Sullivan-Bolyai S, Rosenberg R, Bayard M. Fathers’ reflections on parenting young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2006;31(1):24-31. https://doi.org/10.1097/00005721-200601000-00007 https://doi.org/10.1097/00005721-2006010...
) |
Seeking support of health professionals(2626 Ayala J, Howe C, Dumser S, Buzby M, Murphy K. Partnerships with providers: reflections from parents of children with type 1 diabetes. West J Nurs Res. 2014;36(9):1238-53. https://doi.org/10.1177/0193945913518848 https://doi.org/10.1177/0193945913518848...
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
,3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
,4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
), teachers, friends, family and other(1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
) parents of children with 1DM(1818 Khandan M, Abazari F, Tirgari B, Cheraghi MA. Lived experiences of mothers with diabetic children from the transfer of caring role. Int J community based Nurs midwifery [Internet]. 2018 [cited 2020 Feb 20];6(1):76-88. Available from: https://pubmed.ncbi.nlm.nih.gov/29344538 https://pubmed.ncbi.nlm.nih.gov/29344538...
,3232 Rearick EM, Sullivan-Bolyai S, Bova C, Knafl KA. Parents of children newly diagnosed with type 1 diabetes: experiences with social support and family management. Diabetes Educ. 2011;37(4):508-18. https://doi.org/10.1177/0145721711412979 https://doi.org/10.1177/0145721711412979...
) |
Taking responsibility and tasks: shared among the couple(3333 Smaldone A, Ritholz MD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care. 2011;25(2):87-95. https://doi.org/10.1016/j.pedhc.2009.09.003 https://doi.org/10.1016/j.pedhc.2009.09....
,3737 Sullivan-Bolyai S, Rosenberg R, Bayard M. Fathers’ reflections on parenting young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2006;31(1):24-31. https://doi.org/10.1097/00005721-200601000-00007 https://doi.org/10.1097/00005721-2006010...
,4444 Faulkner MS. Family responses to children with diabetes and their influence on self-care. J Pediatr Nurs. 1996;11(2):82-93. https://doi.org/10.1016/S0882-5963(96)80065-0 https://doi.org/10.1016/S0882-5963(96)80...
) or care was performed by mothers only(2929 Martins E, Ataíde M, Silva D, Frota M. Experience of mothers in the care of children with type 1 diabetes. Rev Rene[Internet]. 2013 [cited 2020 Feb 20];14(1):42-9. Available from: http://www.periodicos.ufc.br/rene/article/view/3323/2561 http://www.periodicos.ufc.br/rene/articl...
) |
Abdicating or reducing social life(2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
) |
Work adjustments: making schedules more flexible(2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
), changing jobs(1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
), reducing working time(1919 Herbert LJ, Wall K, Monaghan M, Streisand R. Parent employment and school/daycare decisions among parents of young children with type 1 diabetes. Child Health Care. 2017;46(2):170-80. https://doi.org/10.1080/02739615.2015.1124776 https://doi.org/10.1080/02739615.2015.11...
,3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
), being away from work(2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
), or home officing(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
) |
Using alternative medicines(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
), participating in religious ceremonies(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
) |
Recognizing the contributions of technology in the therapeutic regimen management(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
) |
Comparing 1DM with other chronic conditions(44 Rifshana F, Breheny M, Taylor JE, Ross K. The Parental Experience of Caring for a Child with Type 1 Diabetes. J Child Fam Stud. 2017;26(11):3226-36. https://doi.org/10.1007/s10826-017-0806-5 https://doi.org/10.1007/s10826-017-0806-...
), hoping for a future cure for the disease(3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
-3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) |
Living one day at a time(4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
), maintaining a positive attitude(3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
), being patient, “moving on”, “stopping thinking”(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
), being assertive(4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
) and communicating openly about the disease(3939 Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes: parents’ perspectives. J Pediatr Psychol. 2004;29(3):221-30. https://doi.org/10.1093/jpepsy/jsh023 https://doi.org/10.1093/jpepsy/jsh023...
) |
Promoting and encouraging children’s independence and autonomy(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
) |
Results or effects obtained |
Non-acceptance(2929 Martins E, Ataíde M, Silva D, Frota M. Experience of mothers in the care of children with type 1 diabetes. Rev Rene[Internet]. 2013 [cited 2020 Feb 20];14(1):42-9. Available from: http://www.periodicos.ufc.br/rene/article/view/3323/2561 http://www.periodicos.ufc.br/rene/articl...
) or acceptance(2121 Pimentel R, Targa T, Scardoelli M. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE. 2017;11(3):1118-26. https://doi.org/10.5205/reuol.10544-93905-1-RV.1103201701 https://doi.org/10.5205/reuol.10544-9390...
,2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
) of disease |
Awareness of permanent change in life(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,44 Rifshana F, Breheny M, Taylor JE, Ross K. The Parental Experience of Caring for a Child with Type 1 Diabetes. J Child Fam Stud. 2017;26(11):3226-36. https://doi.org/10.1007/s10826-017-0806-5 https://doi.org/10.1007/s10826-017-0806-...
,1717 Holmström MR, Häggström M, Söderberg S. Experiences from Parents to Children with Diabetes Type 1. JSM Heal Educ Prim Heal Care 3 [Internet]. 2018 [cited 2020 Jan 30];3(2):1044. Available from: http://miun.diva-portal.org/smash/get/diva2:1270689/FULLTEXT01.pdf http://miun.diva-portal.org/smash/get/di...
) and the need for strategic coping to take control, build support systems and learn to trust others(4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
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Exhaustion(11 Iversen AS, Graue M, Haugstvedt A, Råheim M. Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. Int J Qual Stud Health Well-being. 2018;13(1):1-10. https://doi.org/10.1080/17482631.2018.1487758 https://doi.org/10.1080/17482631.2018.14...
,2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2222 Rankin D, Harden J, Waugh N, Noyes K, Barnard KD, Lawton J. Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expect. 2016;19(3):580-91. https://doi.org/10.1111/hex.12244 https://doi.org/10.1111/hex.12244...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
), interference or sleep deprivation(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2525 Rodrigues C. Dificuldades sentidas pelos pais de crianças com Diabetes Mellitus em idade pré-escolar na gestão da terapêutica e alimentação [Internet]. Escola Superior de Enfermagem de Coimbra; 2015. [cited 2020 Jan 30]. 126 p. Available from: http://repositorio.esenfc.pt/private/index.php?process=download&id=35084&code=274 http://repositorio.esenfc.pt/private/ind...
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Conflicts and losses in the relationships between parents due to disagreement on the way of caring(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
), conflicted relationship as a couple(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
) and conflicted relationship with the other children(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
-2929 Martins E, Ataíde M, Silva D, Frota M. Experience of mothers in the care of children with type 1 diabetes. Rev Rene[Internet]. 2013 [cited 2020 Feb 20];14(1):42-9. Available from: http://www.periodicos.ufc.br/rene/article/view/3323/2561 http://www.periodicos.ufc.br/rene/articl...
), conflicts with adolescent children with 1DM(3535 Paterson B, Brewer J. Needs for social support among parents of adolescents with diabetes. J Nurs Healthc Chronic Illn. 2009;1(2):177-85. https://doi.org/10.1111/j.1752-9824.2009.01019.x https://doi.org/10.1111/j.1752-9824.2009...
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Greater closeness and affection of husbands after diagnosis(3636 Athaseri S, Tilokskulchai F, Patoomwan A, Grey M, Knafl K, Suprasongsin C. Understanding mothers of children with type 1 diabetes: an investigation of perspective and management. Thai J Nurs Res [Internet]. 2008 [cited 2021 Dec 3];25;12(1):55-69. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5896 https://he02.tci-thaijo.org/index.php/PR...
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Negative impact on career/job(1919 Herbert LJ, Wall K, Monaghan M, Streisand R. Parent employment and school/daycare decisions among parents of young children with type 1 diabetes. Child Health Care. 2017;46(2):170-80. https://doi.org/10.1080/02739615.2015.1124776 https://doi.org/10.1080/02739615.2015.11...
-2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
) and social life(2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
,2828 Silva M. A vivência dos pais em relação à criança/adolescente com diabetes mellitus tipo 1 [Internet]. Instituto Politécnico de Viseu; 2014[cited 2020 Jan 31]. 127 p. available from: https://repositorio.ipv.pt/handle/10400.19/2538 https://repositorio.ipv.pt/handle/10400....
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Not being able to fully master 1DM management(3333 Smaldone A, Ritholz MD. Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. J Pediatr Health Care. 2011;25(2):87-95. https://doi.org/10.1016/j.pedhc.2009.09.003 https://doi.org/10.1016/j.pedhc.2009.09....
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Feeling more empowered to deal with the disease and treatment: feeling in control of the disease most of the time(2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
), more prepared to deal with/manage the disease(4141 Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18(1):21-9. https://doi.org/10.1053/jpdn.2003.4 https://doi.org/10.1053/jpdn.2003.4...
), more competent, confident and flexible(2727 Forsner M, Berggren J, Masaba J, Ekbladh A, Olinder AL. Parents’ experiences of caring for a child younger than two years of age treated with continuous subcutaneous insulin infusion. Eur Diabetes Nurs. 2014;11(1):7-12. https://doi.org/10.1002/edn.239 https://doi.org/10.1002/edn.239...
,4242 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal management behaviors for young children with type 1 diabetes. MCN Am J Matern Child Nurs. 2003;28(3):160-6. https://doi.org/10.1097/00005721-200305000-00005 https://doi.org/10.1097/00005721-2003050...
), or safer in care(2323 Boogerd EA, Maas-van Schaaijk NM, Noordam C, Marks HJG, Verhaak CM. Parents’ experiences, needs, and preferences in pediatric diabetes care: suggestions for improvement of care and the possible role of the Internet. J Spec Pediatr Nurs. 2015;20(3):218-29. https://doi.org/10.1111/jspn.12118 https://doi.org/10.1111/jspn.12118...
), integrating 1DM into family life as “new normalcy”(2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
,3434 Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992-1000. https://doi.org/10.1111/j.1365-2648.2009.04963.x https://doi.org/10.1111/j.1365-2648.2009...
,3838 Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs. 2005 May;50(3):253-61. https://doi.org/10.1111/j.1365-2648.2005.03388.x https://doi.org/10.1111/j.1365-2648.2005...
,4040 Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents’ experience of home management and the first year following diagnosis. Diabet Med. 2004;21(6):531-8. https://doi.org/10.1111/j.1464-5491.2004.01193.x https://doi.org/10.1111/j.1464-5491.2004...
,4545 Hatton DL, Canam C, Thorne S, Hughes AM. Parents’ perceptions of caring for an infant or toddler with diabetes. J Adv Nurs. 1995 Sep;22(3):569-77. https://doi.org/10.1046/j.1365-2648.1995.22030569.x https://doi.org/10.1046/j.1365-2648.1995...
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Learning to trust others2020 Pierce JS, Aroian K, Caldwell C, Ross JL, Lee JM, Schifano E, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol. 2017;42(8):846-60. https://doi.org/10.1093/jpepsy/jsx056 https://doi.org/10.1093/jpepsy/jsx056...
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