Transición de padres a cuidadores de un niño con Diabetes Mellitus tipo 1: revisión de alcance

Sousa, Fábio Alexandre Melo do Rego; Andrade, Maria de Lurdes Monteiro Serrabulho; Oliveira, Célia Maria Gonçalves Simão de

Acessibilidade / Reportar erro

Brasil

Revista Brasileira de Enfermagem

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Brasil

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REVIEW • Rev. Bras. Enferm. 76 (1) • 2023 • https://doi.org/10.1590/0034-7167-2022-0201 copiar

Transición de padres a cuidadores de un niño con Diabetes Mellitus tipo 1: revisión de alcance

Autoría SCIMAGO INSTITUTIONS RANKINGS

RESUMEN

Objetivos:

mapear y resumir la evidencia científica existente sobre la experiencia de transición de los padres para ejercer el rol de cuidador de un niño con DM1, identificando los vacíos existentes en el conocimiento de esta experiencia.

Métodos:

se realizó una revisión de alcance basada en la metodología JBI, en dos bases de datos, siguiendo la lista de verificación Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews.

Resultados:

se incluyeron 31 artículos. A partir de los estudios se encontraron elementos constitutivos de la experiencia de transición de los padres al rol de cuidador de un niño con DM1, los cuales se centraron en la naturaleza de la experiencia, los sentimientos y emociones experimentados, las condiciones obstaculizadoras, las condiciones facilitadoras, las estrategias utilizados por los padres y los resultados o efectos obtenidos

Consideraciones finales:

se identificaron elementos caracterizadores del proceso de transición, pero no una explicación teórica del mismo. Se deben realizar investigaciones adicionales para permitir una comprensión más profunda de este proceso.

Descriptores:
Diabetes Mellitus tipo 1; Padres; Responsabilidad Parental; Cuidado del Niño; Literatura de Revisión como Asunto

	Natural language	CINAHL complete (Subject Headings)	MEDLINE complete (MeSH)
P (population)	(Type 1 Diabetes) AND (Child^* OR Infant OR Pediatric OR Adolescen^) AND* (Parents OR Mother^* OR Father^* OR Family caregiver^*)	(Diabetes Mellitus, Type 1) AND (Infant OR Child OR Adolescen^* OR Pediatric) AND (Parents OR Mothers OR Fathers OR Caregivers)	(Diabetes Mellitus, Type 1) AND (Infant OR Child OR Child, preschool OR Adolescent) AND (Parents OR Mothers OR Fathers OR Caregivers)
C (concept)	(Transition^* OR Parent^* Experience OR Coping OR Adaptation OR Parent^* adjustment)	(Coping OR Health transition OR Adaptation psychological OR Life change events OR Parenting	(Adaptation psychological OR Emotional Adjustment OR Parenting OR Life change events)
C (context)	Not defined	Not defined	Not defined

Step	Search strategy	Results
S1	Diabetes Mellitus, Type 1	26,796
S2	Infant OR Child OR Adolescen^* OR Pediatric	1,281,304
S3	Parents OR Mothers OR Fathers OR Caregivers	305,018
S4	S1 AND S2 AND S3	2,189
S5	Coping OR Health transition OR Adaptation psychological OR Life change events OR Parenting OR Parent^adjustment OR Parent^ Experience OR Transition)	148.252
S6	S4 AND S5	413
S7	S4 AND S5. Limiters - date of publication: 20200231.	413

Authors	Year/country	Methodology	Sample (N)	Main results
Iversen, Graue, Haugstvedt & Råheim(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... )	2018 Norway	Phenomenology	15 (8 mothers and 7 fathers)	It took a long time for parents to convince themselves that disease diagnosis had changed their lives forever. Familiarizing themselves with the new situation was a challenge, as they had to quickly learn about the disease and how to manage it. The establishment of strict routines for glycemic control was crucial. Fathers and mothers lived through a period of mourning and sadness. After 6 months to 1 year of diagnosis, parents reported being more familiar with the situation, however, they continued to be very concerned about their children’s quality of life and the possibility of future complications. Parents lived in a state of constant alertness and physical and mental readiness, feeling constantly exhausted. With the return to school, parents took on the responsibility of educating/training school staff on how to care for the child with 1DM.
Holmström, Häggström & Söderberg(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... )	2018 Sweden	Qualitative	13 (10 mothers and 3 fathers)	The appearance of 1DM in children was experienced as a life change for parents and family. After diagnosis, health professionals helped parents feel safe, cared for and included in the responsibility of managing the therapeutic regimen. Parents learned more about the disease (through observation and questioning from professionals) so that they could control the change in their daily lives. It was difficult to learn how to inject insulin or monitor capillary glucose levels. With greater knowledge of the disease, parents realized that 1DM was a condition that required taking medication for the rest of their lives and being in constant control. After discharge, the parents had to take responsibility for managing the disease alone, and the basic knowledge that was transmitted in the hospital was not enough to manage the disease at home. Parents realized that good communication with the school was essential to ensure their children’s safety during the day, and they felt responsible for managing the illness even when they dropped their children off at school. 1DM management affected parents’ professional activities and many had to change jobs in order to gain more flexibility in supporting children during the school day.
Khandan, Abazari, Tirgari & Cheraghi(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... )	2018 Iran	Phenomenology	11 mothers	In addition to performing the maternal role, mothers had to additionally be caregivers. To play this role, they had to face several challenges, acquire knowledge and skills, requiring family support. Capillary blood glucose monitoring and insulin administration were painful procedures, and children had difficulty accepting them, and mothers, performing them. Mothers turned to different sources of information to learn more about 1DM, diabetes association, libraries, the internet and other parents of children with 1DM. Mothers experienced feelings of guilt, anxiety and obsession, making it very difficult to manage the daily duties associated with managing the illness and meeting the children’s care needs. With 1DM diagnosis, mothers faced an acute emotional crisis. Mothers lived a life full of worries, knowing that the disease was a threat to their children’s health and that it could negatively affect them in the future.
Herbert, Wall, Monaghan & Streisand(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... )	2017 United States	Randomized controlled study	134 (120 mothers and 14 fathers)	22% of parents reported having ceased and/or reduced their working time; 15%, although they continued to work, requested flexibility, in order to ensure responsibility for the therapeutic management of their children’s 1DM; 7% of parents suffered the negative impact of diabetes on their careers, including their professional performance and the opportunity for career progression.
Pierce, Aroian, Caldwell, Ross, Lee, Schifano, et al.(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... )	2017 United States	Qualitative	162 (137 mothers and 25 fathers)	For parents, it was difficult to manage the 1DM therapeutic regimen of children aged five years or younger, as they did not understand the need to comply with such a regimen, nor did they identify or report a crisis. Children reacted negatively to food and activity restrictions and painful procedures. Parents felt tired of the constant surveillance and sleep deprivation, the lack of social support and the incessant focus on feeding their children. They regretted the loss of a more spontaneous lifestyle, felt isolated and expressed grief, guilt, anger and concern for the child’s future. Over time, parents adapted, achieving “a new normalcy”, a balance between “perfect” control and living as normally as possible. They used for coping: recognizing that the new technology has greatly improved child care and quality of life, enjoying unusual moments in which 1DM did not dominate, and being involved in educational and advocacy initiatives for 1DM. The constant focus on the therapeutic management of 1DM harmed couple intimacy, as they had difficulty spending time alone, because 1DM dominated conversations and interfered with sleep and exhaustion. Such a focus caused parents to devote less attention and less quality time to their other children. They reported great difficulty in integrating their children into babysitting programs or day care centers that accepted responsibility for the therapeutic management of 1DM. Almost all parents reported anguish in relinquishing the therapeutic regimen control, but gradually they learned to trust others. They mentioned work repercussions, such as accepting less demanding jobs, refusing promotions or choosing to work from home.
Rifshana, Breheny, Taylor & Ross(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-... ).	2017 New Zealand	Phenomenology	17 (14 mothers and 3 fathers)	The experience of caring for a child with 1DM was governed by a process of constant surveillance that required an attentive awareness, an active commitment, making the experience of caring a very tiring process. Planning the child’s routines was the most obvious strategy. Situating and comparing their children’s bodily experiences, in terms of other possible childhood conditions, allowed parents to manage some of the gains and losses of 1DM and to feel greater control over the situation, favoring their coping. These comparisons were used in two ways: favorably or unfavorably with respect to other child health conditions. 1DM has been described as a lifelong chronic condition with no cure, and there is no clear point from which parents stop grieving over the loss of their child’s health.
Pimentel, Targa & Scardoelli(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... )	2017 Brazil	Qualitative	11 (9 mothers and 2 fathers)	1DM diagnosis was described as one of the most difficult moments in parents’ lives, being permeated by sadness, anguish, despair and suffering. The fear of the unknown, the disease therapeutic management/treatment and its prognosis led to difficulties in coping with unexpected situations arising from the need to perform care and apply instrumental skills. When well informed about the disease, parents and their children ended up creating adaptation mechanisms, and the feelings of fear, denial and despair ended up transforming into acceptance. After diagnosis, parents begin a new path towards adaptation, incorporating new life habits and a new routine to be followed. The lack of support and communication from health professionals, in particular nurses, was reported by parents, who felt a need for greater monitoring and clinical guidance from these professionals.
Rankin, Harden, Waugh, Noyes, Barnard & Lawton(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... )	2016 United Kingdom	Qualitative	54 (38 mothers and 16 fathers)	In the first days after the diagnosis, all parents praised the clinical care provided to their children and the instructions given by professionals. They highlighted the difficulties in understanding and assimilating the information provided and the unknown medical terminology. Some felt stressed and extremely disturbed and, therefore, were unable to assimilate and retain the information and advice transmitted. They reported that the guidance provided by health professionals had not prepared them for how their lives would be affected, and several felt that professionals were not in the best position to provide empathic and nonjudgmental support. Many described traumatic experiences regarding the administration of insulin injections, having even physically persecuted and restricted the children. For fear of nocturnal hypoglycemia, not detected by the child, parents reported spending the night in a state of constant surveillance, with consequent exhaustion. Parents felt that early contact or home visits by professionals would have helped due to their particular circumstances. Peer support was experienced in opposite ways.
Boogerd, Maas-van Schaaijk, Noordam, Marks & Verhaak(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... )	2015 The Netherlands	Qualitative	39 (29 mothers and 10 fathers)	Coping with diagnosis and complex disease management skills were described by parents as overwhelming, referring that feelings of uncertainty and anxiety were intensified when they went from training by professionals to self-management of regimen at home. 1DM and its management had a profound restrictive impact on parents’ social and work life and on children’s lives. Concerns about the consequences of 1DM in the short and long term generated stress and sadness. Adaptation to the disease and its treatment was difficult, and support from friends and family was not felt to be adequate, making the health team and parents of children with 1DM the main sources of support. Support by teachers and schools was variable. Parents’ skills for managing the therapeutic regimen increased as their child grew up. The health team’s availability allowed parents to feel supported and secure in caring for their children, however, it would benefit from being more individualized, aimed at decoding the various information available.
Lawton, Waugh, Noyes, Barnard, Harden, Bath, et al.(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-... )	2015 United Kingdom	Qualitative	54 (38 mothers and 16 fathers)	Some parents highlighted difficulties in understanding the information conveyed during their children’s consultations. Some professionals were praised for the clarity when conveying information, while others were criticized for using medical terminology, perceived as complex and difficult to understand. Almost all parents considered that participating in their children’s consultations was felt to induce stress and anxiety, because they feared being judged due to the possible deterioration of their children’s health, despite their efforts, conditioning the parents’ action.
Rodrigues(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... )	2015 Portugal	Qualitative	10 (9 mothers and 1 father)	Parents reported insecurity in care by school staff, due to lack of knowledge, errors in the calculation of insulin doses and lack of interest in treatment. They mentioned concern and fear of being absent during a decompensation, insecurity in third-party care, fear of decompensation at night. They dealt with it being on permanent alert and changing family routines, depriving themselves of sleep and being absent from work. They reported difficulties in managing meal times, carbohydrate accounting and insulin dose calculations. They valued the health team’s support and the potential they could have in accompanying children and families at school and at home.
Ayala, Howe, Dumser, Buzby & Murphy(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... )	2014 United States	Mixed study	63 fathers (Phase 4)	Fathers wanted health professionals to recognize living with 1DM as a dynamic process that evolves over time. They desired sensitivity and recognition of fathers’ unique experience and challenges. Fathers expressed anxiety about how to incorporate the basic requirements of diabetes into their daily lives. Using the skills learned in the hospital was a challenge. Upon returning home, fathers felt new for many months, depending on professionals. They were valued when professionals listened to them and understood that the guidelines given initially, in the hospital, had been little noticed, due to the emotional overload then experienced, and when professionals responded therapeutically to fathers’ grief, to their concern and uncertainty, taking time to understand their feelings in the struggle, to adapt to a new way of life. Fathers depended on professionals to take on a more directive role, when 1DM is out of control, in the face of a crisis or in the face of a phase of emotional overload.
Forsner, Berggren, Masaba, Ekbladh & Olinder(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... )	2014 Sweden	Qualitative (longitudinal)	6 (3 mothers and 3 fathers)	After the diagnosis, parents felt that their lives had been turned upside down, leading to feelings of grief, anger and helplessness. Parents had to face their fears, obstacles and doubts, in particular about their ability to use the insulin pump. They reported feeling continually between a state of vulnerability and trust, between hope and despair, needing health professionals’ support. Over time, parents expressed relief in taking control of the disease therapeutic management, fully ensuring their parental role, caring for their child with greater security and less uncertainty. They consider that they have become specialists in their children’s diabetes and they verbalized feeling in control of the disease most of the time. However, there was a continuous pressure to always be aware of events, having a constant fear of losing control. Developing coping strategies, adjusting and, finally, accepting the new life after disease diagnosis meant for parents to reorganize their lives around their child’s needs. It implied giving up social life and accepting that they cannot improvise. Over time, 1DM and the insulin pump came to be considered as a natural part of family life.
Silva(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.... )	2014 Portugal	Qualitative (exploratory-descriptive, Phenomenological)	14 (10 mothers, 4 fathers)	1DM diagnosis changed the family dynamics, leading to a restructuring of life in terms of routines, medication, night care for the child and conditioning of social and work life. 1DM changed eating habits, led to greater surveillance and supervision of children and specific care (checking blood glucose and administering insulin). Parents sometimes constantly felt fear, insecurity, worry, sadness, anger and guilt, associated with the possibility of other pathologies and complications, hypoglycemia, adolescence and fear of making mistakes. Some siblings of children with diabetes felt jealous for the attention and affection given to this child. It was necessary to develop parental skills, such as learning about the disease and treatment and dealing with difficulties. Parents received support from health professionals, their own child with 1DM and family members, school and information on the internet.
Martins, Ataíde, Silva & Frota(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... )	2013 Brazil	Qualitative	12 mothers	1DM diagnosis represented a change in mothers’ daily life, having a negative emotional impact, and the fear and anguish felt remained even after the diagnosis. Mothers’ non-acceptance of the disease interfered with their child’s well-being, causing stress and suffering. The level of attention and the differentiated care shown by mothers to their children with diabetes caused feelings of revolt and jealousy in the other children. Although 1DM affects the whole family, the responsibility for the therapeutic regimen care/management fell on mothers, and their intervention went beyond the instrumental care necessary for treatment.
Nurmi & Stieber-Roger(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... )	2012 United States	Qualitative (collective case study)	13 (10 mothers and 3 fathers)	Paternity involved not only adjustments to accommodate 1DM-related tasks, but also changes in perspective and interactions with family, community, and society. Parents fought to affirm their children as “normal”, with a particular characteristic (having 1DM), more than a disease and to decentralize attention to diabetes, focusing on the children. Participating in fundraising, interacting with other children and families who also lived with diabetes, and sharing knowledge about the disease was considered important. The need for advocacy by children was felt, in particular, in the school context, where it was necessary to ensure that schools were prepared to deal with the particularities of daily life of a child with 1DM.
Dashiff, Riley, Abdullatif & Moreland(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... )	2011 United States	Qualitative	40 fathers	Fathers found managing the therapeutic regimen difficult, with a sense of struggle (with the school system and with adolescents) and frustration marked by the need to be vigilant, evoking fear, sadness and worry. Some fathers exclusively reported negative feelings (guilt, sadness and fears) or positive feelings (relating to the conviction that they had done everything, even if it was not perfect), and some reported both.
Rearick, Sullivan-Bolyai, Bova, & Knafl(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... )	2011 United States	Mixed study	21 (14 mothers and 7 fathers)	Having a “veteran” father in 1DM management who could be contacted was considered by parents as the most important aspect of the intervention, which made stressful situations more tolerable. Mentors shared with parents practical aspects related to 1DM management. Mentors often validated parents’ feelings, and helped them develop confidence in their daily management of the disease therapeutic regimen through sharing their experiences about the shock of diagnosis and interactions with health professionals, family members and friends.
Smaldone & Ritholz(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.... )	2011 United States	Qualitative	14 (7 mothers and 7 fathers)	Parents identified the team’s availability after 1DM diagnosis as an important factor of support. However, at home, they felt isolated in caring for their children, overwhelmed and full of doubts. Support groups helped to reduce this isolation felt, in particular, by mothers. Parental adaptation was more effective when the responsibility for decision-making about the disease was shared by parents. None of the parents considered that they had been able to completely master 1DM management.
Bowes, Lowes, Warner & Gregory(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... )	2009 United Kingdom	Qualitative	17 (10 mothers and 7 fathers)	Parents described feelings of grief and guilt after diagnosis. Parents found the practical management of the therapeutic regimen difficult to handle at first, but over time they got used to the daily tasks they had to perform and accepted this routine as part of their lives. Triggers that induced recurrent feelings of sadness were identified, such as periods of hospitalization, the need for insulin injections, adolescence and the transition to adult health care. Management of the therapeutic regimen and knowledge of the consequences of poor control caused continued stress and anxiety, and parents remained concerned about their children’s future health. Parents recognized the need for emotional support, but most did not receive it from professionals. Emotions and feelings associated with grief (sadness, guilt and anger) were expressed by parents.
Paterson & Brewer(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... )	2009 Canada	Qualitative	9 (6 mothers and 3 fathers)	Parents of adolescents with 1DM felt the need for social support, especially regarding the assumption of the main responsibility for managing the therapeutic regimen of adolescents. The process of transitioning responsibility for managing the therapeutic regimen from parents to adolescent children was difficult, and conflicts were frequent. Parents felt the need for support, which should be provided by diabetes experts and by parents with adolescents with diabetes.
Athaseri, Tilokskulchai, Patoomwan, Grey, Knafl & Suprasongsin(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... )	2008 Thailand	Qualitative	22 mothers	Maintaining normal capillary blood glucose levels and promoting the child’s independence were the mothers’ goals. Regarding 1DM management, the behaviors mentioned by mothers, in order to promote disease management and incorporate them into lifestyle, were administering insulin injections, testing capillary blood glucose, encouraging children to exercise, and taking children to follow-up medical appointments. Mothers played maternal roles, such as encouraging self-care, maintaining children’s identity, meeting developmental needs, identifying social support, resorting to alternative medicines, accepting their children’s illness, and developing coping strategies in the face of daily stress. Mothers mentioned skills training, close supervision, as well as maternal advice as strategies to promote and encourage their children’s independence and autonomy. In order to seek support and help, mothers essentially turned to health professionals, teachers and friends and family. The coping strategies used by mothers to manage daily stressors and reduce stress were participation in religious ceremonies, being patient, moving on and “stop thinking”. Mothers reported that husbands became more affectionate and closer after 1DM diagnosis. However, in other situations, conflicts arose between parents, due to disagreements about how to care for children with 1DM.
Sullivan-Bolyai, Rosenberg & Bayard(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... )	2006 United States	Qualitative	14 fathers	The diagnosis was described as “shock and awe”, but fathers had to react quickly to the situation, learning to manage the illness and quickly takin responsibility. They used the “partnership in care” between fathers and wives, especially in problem solving and decision-making related to the disease therapeutic regimen, but also in the division of care tasks. Fathers used a healthy mantra for living with the disease: taking care of the child first and 1DM second, ensuring that the children with 1DM were treated like any other child.
Lowes, Gregory & Lyne(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... )	2005 United Kingdom	Qualitative (longitudinal)	38 fathers	Twelve months after diagnosis, many fathers continued to be aware of their healthy child’s losses, control, freedom, spontaneity, confidence in their ability to protect their child from danger, and a sense of security. Fathers were aware of the risk of future complications. Initially, fathers were shocked and distressed, making it difficult for them to assimilate the complexity of the diagnosis. The need for insulin injections was not part of their family routine, leading to them having to carefully plan family activities and routines that were previously performed spontaneously. After diagnosis, fathers experienced anxiety and loss of confidence in their ability to deal with the situation. As their knowledge increased, they became more confident in 1DM management, but they continued to feel insecure about their ability to keep their child safe. A hypoglycemic attack, with loss of consciousness, was the greatest of all fears. Events such as hypoglycemia, being sick, a new school, vacations and family outings constantly brought 1DM to the forefront. Fathers were afraid of the possibility of long-term complications and balanced their fears with optimism about the development of treatments and with a future cure. After 4 months, most fathers reported feeling adapted to the new routines and diagnosis. After 12 months, all fathers got used to the changes implemented, integrating 1DM into their daily lives.
Mellin, Neumark-Sztainer & Patterson(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... )	2004 United States	Qualitative	32 (24 mothers, 7 fathers and 1 guardian)	Parents expressed concerns about the disease: fear of long-term complications; who would help their daughter to control hyper or hypoglycemia when she was away from home; the future departure of daughters from home; whether the 1DM management would be good enough; and the onset of hypoglycemic crises. 1DM made it more difficult for the family to leave. Coping behaviors used in 1DM management included: providing concrete support to daughters in meeting food and medical needs; organizing their family life and schedules to facilitate the therapeutic regimen management; monitoring and reminding daughters about diabetes-related tasks; communicating openly inside and outside home about their daughters’ illness; and maintaining normalcy within the family. Coping strategies used to reduce worries were maintaining a positive attitude, monitoring the daughters at night and changing lifestyle (moving from full-time to part-time jobs, giving up going out at night).
Lowes, Lyne & Gregory(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... )	2004 United States	Qualitative	38	The diagnosis made parents feel sad and in shock, initially trying to deal with the disease, focusing on the practical aspects of its management and prioritizing their children’s immediate needs. The information provided was a lot, and they had to assimilate little by little. Fear of hypoglycemia was frequent and, for some, it was difficult to allow their children the level of freedom they previously enjoyed. Coping strategies used were “live one day at a time”, establish a routine, “plan ahead” and talk to others with knowledge about diabetes. Professional help was important for parents. Mothers, 6 to 8 weeks after diagnosis, experienced acute distress and a feeling of continuous loss. Changes in eating routines included adapting meal times to diet management, school meals and children’s parties. Parents described their children’s illness as “a way of life”, with established routines integrated into their days. Twelve months later, parents began to consider diabetes part of their daily lives, with the children’s needs being incorporated into their lifestyle. Nocturnal hypoglycemia was a concern of parents, who continued to feel a loss of spontaneity and the need to constantly plan every aspect of their lives.
Sullivan-Bolyai, Deatrick, Gruppuso, Tamborlane & Grey(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... )	2003 United States	Qualitative	28 mothers	Mothers used hypervigilant behavior on a daily basis as a way to manage their children’s 1DM. Three dimensions of constant surveillance were identified: day-to-day concerns; the daily management of 1DM; and internal and external support resources. In the first six months after diagnosis, mothers felt isolated and incompetent in the care they provided and in therapy management. Over time, they felt more prepared and competent in disease management and in assessment and interpretation of their own behaviors manifested by their children in the face of 1DM.
Sullivan-Bolyai S, Knafl, Deatrick & Grey(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... )	2003 United States	Mixed study	28 mothers	The target behavior focused by all mothers was “glycemic control”, together with the daily disease therapeutic regimen, which was characterized as “constant surveillance”. Mothers used strict compliance as an approach to managing child care, essentially in the initial months after diagnosis, which implied frequent telephone contacts and consultations with the nurses responsible for 1DM education. Regarding flexible compliance, mothers reported feeling more competent and confident over time, and it took from 6 months to 1 year after diagnosis for them to feel confident. As mothers built up their level of confidence, they tended to adopt a more flexible treatment compliance, adapting the therapeutic regimen to make it easier to deal with.
Seppänen, Kyngäs & Nikkonen(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... )	1999 Finland	Qualitative (Case study)	4 (2 mothers and 2 fathers)	The process of parental coping with 1DM included six phases: disbelief; lack of information and guilt; learning to care; normalization; uncertainty; and reorganization. The first three phases of the coping process took place in the hospital. The fourth phase described parental coping after child discharge. The fifth and sixth phases were related to children’s self-care at home during the first 2 weeks after discharge.
Faulkner(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... )	1996 United States	Qualitative	27 (7 mothers and 7 fathers)	Regarding the effects caused by 1DM in the family, the parental responses were: remembering the diagnosis; changing the diet; predicting/scheduling daily activities; coping; and managing the therapeutic regimen. Regarding family roles, it was possible to identify characteristic roles taken by mothers and others by fathers. Teaching one’s own children, teachers, classmates and other parents about diabetes has been incorporated into the maternal role.
Hatton, Canam, Thorne & Hughes(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... )	1995 Canada	Qualitative (Interpretive with phenomenological approach)	8 (8 mothers and 8 fathers)	Parents identified factors responsible for increased stress, such as the lability of children’s condition, the demands of complex management of the therapeutic regimen, painful procedures, multiple losses in children’s and family’s life, social isolation, inability to trust care for children and sharing feelings and anticipated concern with threats to their children’s safety, survival and future. The experiences of caring for children with diabetes were described in three phases: i) Diagnosis and hospitalization: the greatest stressors for parents were the severity of the clinical situation, causing fear of death and hospitalization, often terrifying, due to constant monitoring and painful procedures. Lack of support, associated with multiple stressors, generated common emotional responses, such as shock, anger, fear, grief, guilt, sadness, exhaustion, blaming others and themselves, feeling totally crushed, feeling desperate, hopeless, inadequate as parents, and feeling out of control. They used coping strategies: being assertive and defending the children; dealing with their needs; realizing that the complex therapeutic regimen has to be fulfilled for the sake of children’s life; seek help (hospital professionals); accepting the lack of support from fearful friends and family; and clinging to the hope of a cure in the future; ii) Taking care of children at home: bringing children back home and facing the responsibility for managing a chronic illness was the greatest stressor for parents. No longer having the hospital support system made them feel vulnerable and scared. The unpredictability of blood glucose fluctuations and the inability to anticipate and control them generated stress and frustration. The coping strategy used was to be totally vigilant and methodical with the 1DM therapeutic regimen. This intense learning phase lasted about 6 to 8 months after diagnosis and continued until a sense of adaptation was achieved; iii) Long-term adaptation: a phase of greater relaxation, leading parents to feel more in control of the situation, being able to incorporate the disease into family life in a long-term future. The main stressors identified by parents were related to children’s growth and development. Parents continued to feel the need for strategic coping centered on taking control, trusting others, and building support systems.

Categories	Characterizing elements of the transition experience
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... )
	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... )
	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... )
	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... )
	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.... )
	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.... )
	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... )
	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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[1] Corresponding author: Fábio Alexandre Melo do Rego Sousa , E-mail: fabioalexandre.sousa@gmail.com<img/>;