Constant vigilance: Mothers' work parenting young children with type 1 diabetes

Sullivan-Bolyai, Susan; Deatrick, Janet A.; Gruppuso, Philip A.; Tamborlane, William V.; Grey, Margaret

doi:10.1053/jpdn.2003.4

Cited by 220 publications

(254 citation statements)

References 24 publications

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“…The research conducted by Cyranka et al showed that mothers of healthy children experience greater support and commitment of their spouses than those of children with diabetes [28]. Parents of young children are concerned that other people: nannies, teachers, family members will not be able to provide the proper care for a child [29]. This does not favour sharing responsibilities between different people, which may result in greater burden.…”

Section: Discussionmentioning

confidence: 99%

Diabetes, child care, and performance of family functions

Kobos¹,

Imiela²,

Leńczuk-Gruba³

2017

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Introduction: Parents caring for a child with diabetes may experience a burden on both a practical and an emotional level. Aim of the research: Analysis of the correlations between the care burden level and the perceived influence of type 1 diabetes in children on the performance of family functions. Material and methods:The study included 112 caregivers of children with diabetes. The following inclusion criteria were taken into account: full family, direct caregiver of the child, the child's age 3-16 years, disease duration of at least 6 months, and no chronic diseases in siblings. The study material was collected using an interview questionnaire and the Caregiver Burden Scale. Correlation analysis was performed using the Spearman correlation coefficient. The significance level was defined as p = 0.05. Results: A higher burden level of a caregiver in the individual subscales of the CB Scale was associated with a significant decrease in the intensity of performance of the cultural and social function as well as consumption function, the increased amount of time spent with a sick child, and an increase in parental disagreements. The overall burden level differentiated the performance of the religious function. An increase in the burden level on the overall effort subscale was accompanied by lower interest in sex and less frequent sexual intercourse. The higher level of caregiver burden occurs in families where permanent job income has fallen. The differences were shown in the performance of control-socialisation function due to the sense of burden on the environment subscale. Conclusions:The burden level of a caregiver is important in the perceived influence of the child's illness on the functioning of the family. Stimulating a caregiver in dealing with the problems that are the consequence of the disease, as well as activating and preparing other family members to participate in the care of a sick child, and financial support may reduce the caregiver burden and thus facilitate the functioning of the family.

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Section: Discussionmentioning

confidence: 99%

Diabetes, child care, and performance of family functions

Kobos¹,

Imiela²,

Leńczuk-Gruba³

2017

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“…The diagnosis of diabetes in pre-school children poses a number of unique challenges upon the parents. Thus, it is important to gain more knowledge from the parents’ perspective on treatment issues as well as the everyday challenges parenting a small child with diabetes (Sullivan-Bolyai, Deatrick, Gruppuso, Tamborlane, & Grey, 2003). The challenges are related to among others physical growth, day—and night-time monitoring, insulin dose adjustments, changing food preferences, irregular physical activity patterns, difficulty in describing and communicating their symptoms clearly, and the continuous need for supervision and caregiving (Streisand & Monaghan, 2014).…”

Section: Introductionmentioning

confidence: 99%

“…These challenges may affect both the child and the parents’ perceived burden of the disease. Mothers of young children with T1D describe a need to maintain constant vigilance and alertness related to the child’s diabetes (Sullivan-Bolyai et al, 2003; Sullivan-Bolyai, Rosenberg, & Bayard, 2006). …”

Section: Introductionmentioning

confidence: 99%

“…In a systematic review, Whittemore, Jaser, Chao, Jang, and Grey (2012) revealed a prevalence of parental psychological distress at diagnosis of between 20% and 30%. Parents have described a feeling of being overwhelmed by the management demands, a feeling that persisted over time when experiencing the complexity of daily management, the constant fear of especially hypoglycaemic events and of new situations coming up (Smaldone & Ritholz, 2011; Sullivan-Bolyai et al, 2003; Wennick & Hallström, 2006). The fear of nighttime hypoglycaemia has been reported as extra challenging among parents of the youngest children (Monaghan, Hilliard, Cogen, & Streisand, 2009).…”

Section: Introductionmentioning

confidence: 99%

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Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences

Iversen

Graue

Haugstvedt

et al. 2018

International Journal of Qualitative Studies on Health and Well

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Purpose: The diagnosis of diabetes in pre-school children poses a number of unique challenges related to everyday responsibility, and the continuous need for supervision and caregiving. This may affect both the child’s and the parents’ perceived burden caused by the condition. The aim of the study was to explore the lived experience of being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years. Methods: The study is rooted in an interpretive phenomenological methodology as described by van Manen. In-depth interviews were carried out to collect data. Findings. We were able to identify one essential theme across the interviews: Striving to live an ordinary family life, yet feeling and living very differently—with interrelated sub-themes: A life-changing situation, Always on guard, and Struggling to let go. Conclusion: Parents described a profoundly changed situation, and they were indeed striving to live like a “normal” family. They were in need of support from health care professionals at the outpatient clinic, not only support and supervision in regard to practical tasks, but also concerning handling a changed life situation and emotional reactions, especially in the first year after diagnosis.

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“…Daily T1D management of is immensely challenging for parents/caregivers and adequacy of parental coping is intertwined tightly with their children's metabolic and psychosocial outcomes [4][5][6][7][8][9][10][11][12][13][14]. Yet, there are few resources that specifically target the unique needs of this special population or that equip health care providers to offer feasible and effective coping strategies to their parents/caregivers [15][16].…”

Section: Introductionmentioning

confidence: 99%

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design (Preprint)

Wysocki¹,

Pierce²,

Caldwell³

et al. 2018

Preprint

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BACKGROUND Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents’ ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support. OBJECTIVE The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes. METHODS This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product. RESULTS This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes. CONCLUSIONS UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits.

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Constant vigilance: Mothers' work parenting young children with type 1 diabetes

Cited by 220 publications

References 24 publications

Diabetes, child care, and performance of family functions

Diabetes, child care, and performance of family functions

Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design (Preprint)

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