Evaluation of paediatric palliative care ambulance plans: A retrospective study
ambulance; palliative therapy; article; Australia; child; data completeness; drug therapy; drug use; human; male; New South Wales; Palliative Care; paramedical personnel; Retrospective Studies; retrospective study; scope of practice; special situation for pharmacovigilance; terminal care
Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.
Wan J; Vaughan A; Shepherd E; Coombs S; Trethewie S; Jaaniste T
Journal of Child Health Care
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener">10.1177/13674935231225714</a>
Evidence-based assessment of coping and stress in pediatric psychology
Longitudinal Studies
OBJECTIVE: To review selected measures of stress and coping in pediatric populations. Stress and coping are presented within a risk and resiliency framework. METHODS: The Society of Pediatric Psychology (SPP) surveyed the membership to identify the most frequently used assessment instruments. Twelve measures of coping and three measures of stress were reviewed. These instruments were evaluated using the Stress and Coping workgroup's modification of the criteria developed by the SPP Assessment Task Force (SPP-ATF). RESULTS: One of the three measures of stress and five of the 12 measures of coping were Well-established measures that broaden understanding. Additionally, one of the coping measures was categorized as a Well-established measure that guides treatment. Merits of the individual measures are discussed. CONCLUSIONS: Recommendations for future research are provided, including suggestions for the construction and use of measures to inform treatment research.
2008
Blount RL; Simons LE; Devine KA; Jaaniste T; Cohen LL; Chambers CT; Hayutin LG
Journal of Pediatric Psychology
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsm071" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm071</a>
Living with a child who has a life-limiting condition: The functioning of well-siblings and parents
child; sibling; life-limiting condition; functioning; parent
BACKGROUND: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning. METHODS: Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family. RESULTS: The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's < .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's < .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's < .126, all p's > .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's > .318, p's < .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = -.369, p < .05) and anxiety symptoms (r = -.473, p < .01) but not stress scores (r = -.074, p = .644). CONCLUSION: Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported well-sibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.
Jaaniste T; Cuganesan A; Chin WLA; Tan SC; Coombs S; Heaton M; Cowan S; Aouad P; Potter D; Smith PL; Trethewie S
Child: Care, Health and Development
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/cch.12927" target="_blank" rel="noreferrer noopener">10.1111/cch.12927</a>
Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey Data
child; communication; life-limiting condition; parent; sibling
OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children are faced with stressful situations. The overall aim of the study was to learn more about illness-related communication between parents and well-siblings, giving particular consideration to the amount of illness-related communication, and sibling satisfaction with familial communication. METHODS: Participants included 48 well-siblings (aged 6-21 years) of children with LLCs and their parents. Parents and well-siblings independently completed validated measures of familial communication and sibling functioning. Parents also provided demographic information and completed a questionnaire assessing amount of illness-related information provided to well-siblings. RESULTS: Parents reported that 47.8% of well-siblings never or rarely initiated conversations about their sibling's illness. Moreover, 52.2% of well-siblings never or rarely spoke about death. Amount of illness-related communication between parents and well-siblings was most strongly predicted by parental resilience and well-sibling age. Parents engaged in significantly more illness-related communication with girls than boys (t(44)=-2.28, p = .028). Well-siblings (p < .01) and parents (p < .05) rated satisfaction with familial communication significantly higher than published norms. The only significant predictor of well-sibling satisfaction with familial communication was greater familial cohesion. Family communication variables were not significantly correlated with measures of sibling functioning (all p's>.05). CONCLUSIONS: This study provides new information regarding parent and well-sibling communication in families who have a child with a LLC.
Jaaniste T; Chin WLA; Tan SC; Cuganesan A; Coombs S; Heaton M; Cowan S; Potter D; Aouad P; Smith PL; Trethewie S
Journal of Pediatric Psychology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/jpepsy/jsab128" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsab128</a>
Somatosensory Test Responses And Physical And Psychological Functioning Of Children And Adolescents With Chronic Non-neuropathic Pain: An Exploratory Study.
OBJECTIVES:
This study was designed to establish preliminary feasibility testing of a set of inherently benign somatosensory stimulus-response tests (to cutaneous and deep stimuli) for bedside or office evaluation of pain disorders in children and adolescents. Associations between, and the relative influence of, cutaneous somatosensory testing (SST) responses, deep SST responses, and psychological factors (depression, pain-related catastrophizing) on pain outcomes (worst pain intensity, pain-related disability) were considered.
METHODS:
Sixty participants (6 to 18 y) were recruited from the pediatric chronic pain clinic. SST responses were assessed at the pain site (PS) and control sites to diverse stimuli (static/dynamic touch, punctate pressure, vibration, cool, deep pressure) using Colored Analogue Scales (CAS) with modified anchors. Validated measures of depression, pain-related catastrophizing, and pain-related functional interference were administered.
RESULTS:
Responses at the PS were more frequently hypersensitive than hyposensitive for all SST measures except vibration. Deep pressure responses were the only statistically significant predictor of worst pain intensity. Depression and pain-related catastrophizing accounted for a statistically significant amount of variance of pain-related disability, over and above that which was accounted for by SST responses.
DISCUSSION:
Preliminary feasibility of a set of somatosensory stimulus-response tests for bedside or office evaluation of pain disorders in children and adolescents was established. Deep pressure responses contributed unique information in predicting worst pain intensity but not functional interference. Although cutaneous SST responses at the PSs were frequently abnormal, cutaneous SST responses were not confirmed in this study to have clinical utility, but rather might be centrally mediated epiphenomena.
Lim SW; Gunaratne Y; Jaaniste T; McCormick M; Champion GD
Clinical Journal Of Pain
2016
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DOI: 10.1097/AJP.0000000000000385
Young Children's Ability To Report On Past, Future, And Hypothetical Pain States: A Cognitive-developmental Perspective
Declarative Memory; Randomized-trial; Mental Time-travel; Recall; Needle Pain; Child; Clinical Neurology; Age-children; Cognitive-development; Medical Procedures; Attention; Self-report; Memory; Pain Assessment; Intensity; Neurosciences; Anesthesiology; Self
Children are at times asked by clinicians or researchers to rate their pain associated with their past, future, or hypothetical experiences. However, little consideration is typically given to the cognitive-developmental requirements of such pain reports. Consequently, these pain assessment tasks may exceed the abilities of some children, potentially resulting in biased or random responses. This could lead to the over- or under-treatment of children's pain. This review provides an overview of factors, and specifically the cognitive-developmental prerequisites, that may affect a child's ability to report on nonpresent pain states, such as past, future, or hypothetical pain experiences. Children's ability to report on past pains may be influenced by developmental (age, cognitive ability), contextual (mood state, language used by significant others), affective and pain-related factors. The ability to mentally construct and report on future painful experiences may be shaped by memory of past experiences, information provision and learning, contextual factors, knowledge about oneself, cognitive coping style, and cognitive development. Hypothetical pain reports are sometimes used in the development and validation of pain assessment scales, as a tool in assessing cognitive-developmental and social-developmental aspects of children's reports of pain, and for the purposes of training children to use self-report scales. Rating pain associated with hypothetical pain scenarios requires the ability to recognize pain in another person and depends on the child's experience with pain. Enhanced understanding of cognitive-developmental requirements of young children's pain reports could lead to improved understanding, assessment, and treatment of pediatric pain.
Jaaniste T
Pain
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/j.pain.0000000000000666