The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty

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Attending hospital or indeed any healthcare setting for treatment can be distressing; where children are involved it constitutes a major source of anxiety within families and has the potential to disrupt and influence the course of their lives. This anxiety can be further worsened as a result of the unpredictable or ambiguous nature of some illnesses, the lack of clarity or absence of information about the illness itself or about the chosen treatment regime 1. These four components of the patients’ experiences (ambiguity, unpredictability, lack of clarity and lack of information) are referred to in the literature collectively by the term ‘Illness Uncertainty’ 10. Ambiguity and unpredictability concepts relate to the illness itself in terms of its signs and symptoms, current and future manifestations, developments and effects on the patient. While lack of clarity and lack of information may refer to detailed understanding of the treatment process, how explicit it is and whether information is in a form that the patient can fully receive and appraise 11.
Uncertainty is defined as the state of lacking confidence or being unsure of something not fully decided, nor definite or fixed. It also means being in doubt about something 12. This concept has been recognised as important in healthcare since 1949 when Shannon and Weaver proposed that the effectiveness of communication and exchange of information could be defined in terms of the amount of uncertainty it eliminated. It is accepted that clear, unambiguous communication and exchange of information is important for individuals to reach an understanding of problems and explore alternative solutions, resulting in better decision‐making and better management of difficult situations 2. Conversely, being uncertain about the situation or problem can lead to anxiety, impaired reaction or an unpredictable response, limited problem‐solving and imperfect decision‐making 1.
Mishel 8 defined the concept of uncertainty in the healthcare domain as ‘the inability to determine the meaning of illness related events’ (p. 225). This is due to lack of sufficient cues resulting in potentially impaired patient adaptation, poor quality of life 16 and poor psychosocial adjustment (e.g. cardiac patients) 17.
For parents of sick children, uncertainty is a major source of stress impacting on the whole family, affecting dynamics and quality of life 8. The uncertainty experienced by these parents is similar to that of adult patients, but is compounded by the strong protective emotions experienced through considering the consequences of illness on their child 15. In some situations parents may feel guilty, attributing their child's illness or disorder to their actions or inactions during the gestational period or after delivery 3.
The uncertainty of parents and families has been reported as constant, intensifying from the time it manifests initially in response to abnormal behaviour or symptoms of the sick child. It persists through the process of establishing diagnosis, and throughout the period of the child's treatment. Once established, these feelings of uncertainty can stubbornly persist 4. Consequently, failure of healthcare professionals to address parents’ uncertainty through effective communication can often lead to feelings of distress 21, family maladjustment 9 and a deterioration in their physical and psychological health 4. Mishel 8 emphasises that one factor over all others that can directly affect this uncertainty and improve coping abilities is the healthcare provider's interventions and interactions in giving appropriate, timely information. Well‐communicated and easily understood information, skillfully provided, results in increased familiarity with the illness and its patterns and events, consequently decreasing the intensity of uncertainty and improving coping and adaptation 11.
The concept ‘uncertainty’ has been used as a measure of anxiety, quality of life and the adaptation of patients with various health issues (e.g.
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