The Ups and Downs of Parenting Young Children With Type 1 Diabetes: A Crowdsourcing Study

Pierce, Jessica; Aroian, Karen J.; Caldwell, Cindy; Ross, Judith L.; Lee, Joyce M.; Schifano, Elizabeth D.; Novotny, Rebecca; Tamayo, Anthony; Wysocki, Tim

doi:10.1093/jpepsy/jsx056

Cited by 28 publications

(53 citation statements)

References 31 publications

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“…For example, key challenges faced by people recently diagnosed with diabetes were accepting the diagnosis and becoming motivated to change their lifestyle, while experienced patients were challenged by issues related to complications and medications (18). Our findings also align with research suggesting that for patients to maintain their desired level of diabetes self-management, they need the support of those around them (19,20) and need timely access to care and additional support as needed. Our results also demonstrate the importance of socio-cultural diversity when seeking evidence and ideas of 'what works' in diabetes self-management (21).…”

Section: Interpretationssupporting

confidence: 76%

Patients' perspectives on how to improve diabetes self-management and medical care: a qualitative study

Ndjaboué¹,

Dogba²,

Boudreault³

et al. 2018

Preprint

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Background: The experience of living with a chronic disease such as diabetes can provide valuable knowledge about medical care and self-management. Such knowledge may be of use to people seeking to improve diabetes self-management and to health professionals seeking to provide better patient-centered care.Objective: To identify potential areas for improvement in diabetes care from the perspectives of people living with diabetes and their caregivers.Methods: We interviewed 21 people living with diabetes (hereafter called expert patients) who were patient partners in a national Patient-Oriented Research network. Expert patients were men and women from various backgrounds, including Indigenous people and immigrants to Canada. They had significant lived experience of diabetes and were able to offer diverse patient and caregiver perspectives. Three authors independently analyzed videos using inductive framework analysis, identifying themes through discussion and consensus. Results: From expert patients’ perspective, people living with diabetes benefit from acknowledging and accepting the reality of diabetes, receiving support from their family and care team, and not letting diabetes control their lives. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency. Conclusions: From the perspectives of expert patients, there are areas for improvements in diabetes care. These improvements are actionable individually by patients or health professionals and also collectively through collaboration between both groups. Improving the quality of care in diabetes is crucial for improving health outcomes in Canada.

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Section: Interpretationssupporting

confidence: 76%

Patients' perspectives on how to improve diabetes self-management and medical care: a qualitative study

Ndjaboué¹,

Dogba²,

Boudreault³

et al. 2018

Preprint

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“…Themes about BF emerged within each domain, indicating that many parents of YC‐T1D perceive benefits not only for themselves, but for their children and family unit, and may use BF as a common coping mechanism. The themes derived from our qualitative work yielded the content domain for an online coping intervention for parents of YC‐T1D . During this preliminary work, it became clear that BF was an important psychological process to measure in the subsequent randomized controlled trial of the online coping intervention compared to usual care.…”

Section: Introductionmentioning

confidence: 97%

“…We encountered evidence of BF during our preliminary qualitative work with parents of YC‐T1D in which we analyzed parents' responses to open‐ended questions about parental burden, impact on parents, children, family, and other social relationships, and health care interactions . Content analysis revealed many spontaneous self‐reports of BF among participants.…”

Section: Introductionmentioning

confidence: 99%

Benefit finding among parents of young children with type 1 diabetes

Pierce¹,

Wasserman²,

Enlow

et al. 2019

Pediatr Diabetes

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Benefit finding, perceived positive effects of adversity, has been associated with psychological well-being in people with chronic illnesses and with better adherence for adolescents with type 1 diabetes (T1D). Our qualitative research with parents of young children (< 6 years old) with T1D indicated that benefit finding (BF) is a common parental coping mechanism, but no tools exist to measure BF in parents. We determined psychometric properties of the Diabetes Benefit Finding Scale for Parents (DBFS-P), a 16-item questionnaire adapted from the validated adolescent version. Parents of young children with T1D (n = 172) were participants in a randomized trial of an online intervention. We examined the DBFS-P factor structure through principal component analysis (PCA); internal consistency through Cronbach's alpha; convergent validity via bivariate correlations between the DBFS-P and measures of parental depression, anxiety, T1D self-efficacy, and hypoglycemia fear; and discriminant validity via bivariate correlations between the DBFS-P and measures of parental somatization and child behavior problems. PCA revealed one factor (56.47% variance) with Cronbach's α = 0.95. Convergent validity of the DBFS-P was supported by significant correlations with parental depression (r = −0.35, P < 0.001), anxiety (r = −0.20, P = 0.008), T1D self-efficacy (r = 0.36, P < 0.001), and hypoglycemia fear (r = 0.27, P < 0.001). Non-significant correlations with parental somatization (r = −0.06, P = 0.42) and child behavior problems (r = −0.12, P = 0.14) support its discriminant validity. The DBFS-P demonstrated good psychometric properties as a tool for assessing BF among caregivers.

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“…20 Crowdsourcing has been used to efficiently engage community stakeholders in the process of identifying the needs and lived experiences of patients and their families. [21][22][23] Participants created deidentified accounts on Yammer, a private online social networking site. Over a 6-month period, a total of 37 open-ended study questions were posted to the online group.…”

Section: Procedures and Measuresmentioning

confidence: 99%

Supporting parenting during infant hospitalisation for CHD

et al. 2020

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Objective: To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation. Study design: Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods. Results: Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation. Conclusions: Care teams can support parenting during infant hospitalisation by promoting parents’ roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.

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The Ups and Downs of Parenting Young Children With Type 1 Diabetes: A Crowdsourcing Study

Abstract: The study yielded rich data to inform user-centered design of an Internet resource for parents of YC-T1D.

Cited by 28 publications

References 31 publications

Patients' perspectives on how to improve diabetes self-management and medical care: a qualitative study

Patients' perspectives on how to improve diabetes self-management and medical care: a qualitative study

Benefit finding among parents of young children with type 1 diabetes

Supporting parenting during infant hospitalisation for CHD

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