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Families' lived experience one year after a child was diagnosed with type 1 diabetes
Anne Wennick1, Inger Hallström
1Division of Nursing, Department of Health Sciences and The Vårdal Institute, The Children's University Hospital, Lund University, Lund, Sweden. anne.wennick@med.lu.se
Insights
Families with a child newly diagnosed with type 1 diabetes find life is ordinary yet different, balancing health with invisible illness and confidence with insecurity. Healthcare should tailor support to individual family needs.
Area of Science:
- Pediatric Endocrinology
- Family Health
- Psychosocial Aspects of Chronic Illness
Background:
- Type 1 diabetes incidence is rising globally, particularly in younger children.
- Intensive diabetes management disrupts family life and requires significant behavioral adaptation.
- Limited research exists on the holistic lived experiences of families managing childhood type 1 diabetes.
Purpose of the Study:
- To explore the lived experiences of families one year after a child's type 1 diabetes diagnosis.
- To understand the multifaceted challenges and adaptations families face.
- To provide insights for improved family-centered diabetes care.
Main Methods:
- Hermeneutic phenomenological study design.
- Interviews conducted one year post-diagnosis.
- 11 Swedish-speaking families with children aged 9-14 years participated.
Main Results:
- Families described their lives as 'ordinary yet different'.
- Key themes included: acceptance vs. frustration, perceived health vs. invisible illness, independence vs. supervision, and confidence vs. insecurity.
- Experiences were neither extremely difficult nor easy compared to pre-diagnosis life.
Conclusions:
- Healthcare professionals should leverage family expertise to address specific needs, especially during blood sugar fluctuations.
- Health-promoting collaborations must be individualized and integrated into the family's daily life.
- Recognizing the paradoxical experiences of families is crucial for effective support.
Aim:
This paper is a report of a study to elucidate families' lived experience of diabetes one year after a child was diagnosed with type 1 diabetes.
Background:
The incidence of type 1 diabetes is rapidly increasing worldwide, with a shift towards younger age groups. This illness is treated by means of an intensive management regimen that often disrupts the child's usual activities and requires disease-focused behaviours from the child and his or her family. However, research elucidating families' lived experience from the perspective of all its members is sparse.
Method:
A hermeneutic phenomenological study was carried out in 2004, based on interviews one year after diagnosis with 11 consecutively chosen Swedish-speaking family members with children aged between 9 and 14 years.
Findings:
The families described their one year of lived experience as living an ordinary yet different life. They experienced their lives to be neither particularly difficult nor as easy as they had been before the child was diagnosed with diabetes. Related themes were 'feeling acceptance yet frustration', 'being healthy yet invisibly ill', 'feeling independent yet supervised' and 'feeling confident yet insecure'.
Conclusion:
It may be helpful if healthcare professionals make use of the knowledge and experience of families living with the illness to meet their specific needs, especially when the affected child is experiencing fluctuating blood sugar levels. Thus, health-promoting collaboration should be tailor-made for every individual and proceed from each family's everyday life.
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