The Parental Experience of Caring for a Child With Pain and Irritability of Unknown Origin

Rizakos, Sara; Parmar, Arpita; Siden, Harold; Orkin, Julia

doi:10.1016/j.jpainsymman.2021.07.026

Cited by 2 publications

(3 citation statements)

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“…However, there is clear evidence that even though pain is often identified as a contributing factor for IUO, IUO and pain are indeed distinct conditions that should be recognized and treated as such in clinical practice [6,7,13,15]. IUO can significantly reduce both the patient's and the parents' quality of life, for example, by disrupting or not establishing normal family routines, causing parental mental health problems, leaving siblings with insufficient attention, or forcing parents to terminate their employment relationship [16]. Because IUO is so stressful for patients, parents, and professional caregivers, the accurate diagnosis of potential contributing factors (PCFs) is essential.…”

Section: Introductionmentioning

confidence: 99%

“…Nevertheless, parents in particular often report dissatisfaction with IUO diagnostics. This may be due to the feeling that too little has been carried out to get to the bottom of the exact causes of IUO, or the fact that too many burdensome and costly measures have been carried out [16]. One possible reason for this could be the hitherto absence of established approaches to the structured recording and treatment of IUO [16].…”

Section: Introductionmentioning

confidence: 99%

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Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care

Kubek,

Angenendt,

Hasan

et al. 2023

Children

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Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO. Assessments from parents as well as nursing, psycho-social, and medical professionals were used to determine the contribution of different PCFs in the development and maintenance of IUO. For this, individual PCFs of N = 22 inpatient children with IUO were presented to four raters. Descriptive statistics, Kruskal–Wallis tests, and Krippendorff’s alpha were used to determine which PCFs were most relevant to explain IUO and rater agreement. Psycho-social aspects (44.7%), hyperarousal (47.2%), pain (24.6%), and dystonia (18.1%) were identified as the most relevant PCFs for IUO. Descriptively, physicians’ relevance rating regarding psycho-social aspects, hyperarousal, and dystonia deviated the most from the overall group rating. All professional raters considered psycho-social aspects to be more relevant than did parents. Parents rated pain as more relevant than the other raters. Kruskal–Wallis tests showed no significant differences between relevance ratings (H = 7.42, p = 0.059) or the four parties’ deviations (H = 3.32, p = 0.344). A direct comparison of the six two-party constellations showed that across all factors, agreement was weak to moderate. The highest agreement was between physicians and nurses (α = 0.70), and the lowest was between nurses and psycho-social experts (α = 0.61). Understanding which psycho-social and various biological PCFs are significant for IUO can facilitate more targeted and individualized pediatric palliative care for affected patients.

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