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Parental information needs in chronic renal failure and diabetes mellitus
J Collier1, H Pattison, A Watson
1Division of Child Health, Queen's Medical Centre, University of Nottingham, UK. jacqueline.collier@nottingham.ac.uk
Insights
Parents of children with end-stage renal failure (ESRF) or insulin-dependent diabetes mellitus (IDDM) primarily need detailed test results and information on their child's future social development. Socioeconomic status significantly influences these information needs.
Area of Science:
- Pediatric Nephrology
- Pediatric Endocrinology
- Family Medicine
Background:
- Parents of children with chronic illnesses like end-stage renal failure (ESRF) and insulin-dependent diabetes mellitus (IDDM) face unique information challenges.
- Understanding parental information needs is crucial for effective family-centered care and support.
Purpose of the Study:
- To assess the specific information needs of mothers and fathers of children diagnosed with ESRF or IDDM.
- To identify key areas of concern for parents regarding their child's condition, treatment, and future.
Main Methods:
- A longitudinal study design was employed over two years.
- Questionnaires were administered seven times at four-month intervals to both mothers and fathers.
- Data were analyzed to identify significant associations between parental information needs and factors such as child's age, treatment changes, parental occupation, and socioeconomic status.
Main Results:
- Parents expressed the highest need for detailed test results, updates on the child's condition, and information regarding future social development, fertility, career prospects, and treatment advancements.
- Parental occupation and socioeconomic status were significantly associated with information needs, with lower socioeconomic status linked to higher needs.
- No significant differences were found in information needs between parents of children with ESRF and IDDM, nor between mothers and fathers.
Conclusions:
- Information provision for families managing pediatric ESRF or IDDM should be individualized, considering specific parental concerns.
- Healthcare providers must be sensitive to socioeconomic factors and communication barriers when disseminating information.
- Tailoring information delivery to family circumstances enhances support and care for children with chronic kidney and endocrine conditions.
Unlabelled:
The information needs of parents of children with end stage renal failure (ESRF) or with insulin dependent diabetes mellitus (IDDM) were assessed by questionnaires over a 2-year period. Questionnaires were posted on seven occasions at 4-monthly intervals and were sent to both mothers and fathers. Most information needs were reported to be for detailed test results, for new information about the condition and about the child's future social development. Questions responsible for the three highest scores were concerned with the future: the child's fertility; their social, career and marriage prospects; and the hope for a new improved treatment. For the IDDM mothers, scores were significantly different depending on age of the child (P = 0.02). Change in treatment mode had no significant effect on the information needs of parents of children with ESRF (P = 0.81). Occupation was significantly associated with the mean general information needs scores for parents, with occupations of a lower socioeconomic status associated with higher information needs scores. There were no significant differences between the reported mean general information needs scores of parents of children with ESRF and of parents of children with IDDM (P = 0.69) or between mothers and fathers mean general information needs scores (P = 0.58).
Conclusion:
Multidisciplinary team members need to tailor information to the needs of the individual families and be sensitive to socioeconomic factors and communication issues.