Parents experience of using "cold" facilities at a children's hospice after the death of their baby: A qualitative study
children; Cold cot; death; hospice; parent experience; qualitative study
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three fathers). Our thematic analysis identified six themes: being able to care for my baby in a way that I never had, space and time to adjust to the loss, time as a family, having my baby close, creating memories, and awareness of societal perceptions. The authors conclude that these facilities provided memories, strengthened legacy, and were a valuable experience.
Norton EA; Mastroyannopoulou K; Rushworth I
Death Studies
2020
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/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1836070</a>
Parents experience of using "cold" facilities at a children's hospice after the death of their baby: A qualitative study
Cold cot; death; hospice; qualitative study
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three fathers). Our thematic analysis identified six themes: being able to care for my baby in a way that I never had, space and time to adjust to the loss, time as a family, having my baby close, creating memories, and awareness of societal perceptions. The authors conclude that these facilities provided memories, strengthened legacy, and were a valuable experience.
Norton EA; Mastroyannopoulou K; Rushworth I
Death Studies
2020
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/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1836070</a>
Development of the paediatric pain profile: role of video analysis and saliva cortisol in validating a tool to assess pain in children with severe neurological disability
Child; Female; Humans; Male; Reproducibility of Results; Child Behavior; adolescent; Preschool; Biomarkers of Pain; Hydrocortisone/metabolism; Nervous System Diseases/complications/metabolism/psychology; Pain Measurement/methods; Pain/etiology/metabolism/psychology; Saliva/metabolism; Videotape Recording
The Paediatric Pain Profile (PPP) is a 20-item behavior-rating scale designed to assess pain in children with severe to profound neurological impairment. Three raters independently used the PPP to rate behavior of 29 children (mean age 9.6, SD 5.8) filmed during everyday morning activities. The validation process included assessment of interrater reliability and exploration of the relationship of PPP scores with saliva cortisol concentration. There was substantial agreement between raters. The PPP showed strong association with global pain assessments and differentiated between preselected high- and low-pain groups. PPP score showed moderate correlation with saliva cortisol concentration, but a single child explained the strength of the relationship and overall, saliva cortisol concentrations appeared low. The data provide additional evidence that the PPP is a reliable and valid instrument for pain assessment in neurologically impaired children. Cortisol levels are not a useful criterion for pain in this population and further study of cortisol response to stress/pain in children with severe neurological impairments is needed.
2007
Hunt A; Wisbeach A; Seers K; Goldman A; Crichton N; Perry L; Mastroyannopoulou K
Journal Of Pain And Symptom Management
2007
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/10.1016/j.jpainsymman.2006.08.011" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2006.08.011</a>
Clinical validation of the paediatric pain profile
Child; Female; Humans; Male; Sensitivity and Specificity; Analgesia; Reproducibility of Results; Communication Disorders; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Q3 Literature Search; Nervous System Diseases/complications; disabled children; Pain Measurement/methods; Operative; Surgical Procedures
The Paediatric Pain Profile (PPP) is a 20-item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11 months, SD 4 years 7 months; range 1 to 18 years), unable to communicate through speech or augmentative communication. Parents used the PPP to rate retrospectively their child's behaviour when 'at their best' and when in pain. To assess interrater reliability, two raters concurrently observed and individually rated each child's behaviour. To assess construct validity and responsiveness of the scale, behaviour of 41 children was rated before and for four hours after administration of an 'as required' analgesic. Behaviour of 30 children was rated before surgery and for five days after. Children had significantly higher scores when reported to have pain than 'at their best' and scores increased in line with global evaluations of pain. Internal consistency ranged from 0.75 to 0.89 (Cronbach's alpha) and interrater reliability from 0.74 to 0.89 (intraclass correlation). Sensitivity (1.00) and specificity (0.91) were optimized at a cut-off of 14/60. PPP score was significantly greater before administration of the analgesic than after (paired-sample t-tests, p<0.001). Though there was no significant difference in mean pre- and postoperative scores, highest PPP score occurred in the first 24 hours after surgery in 14 (47%) children. Results suggest that the PPP is reliable and valid and has potential for use both clinically and in intervention research.
2004
Hunt A; Goldman A; Seers K; Crichton N; Mastroyannopoulou K; Moffat V; Oulton K; Brady M
Developmental Medicine And Child Neurology
2004
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/10.1017/s0012162204000039" target="_blank" rel="noreferrer">10.1017/s0012162204000039</a>
Not knowing-the problem of pain in children with severe neurological impairment.
Longitudinal Studies
This study uses a grounded theory approach to explore the diagnostic and clinical decision-making processes used by parents and healthcare professionals in relation to pain in children with severe to profound neurological impairment. Three forms of knowledge are required for optimal pain assessment and management (1) knowing the child, (2) familiarity with children with the same or similar conditions and (3) knowing the science. Pain relief can be compromised by systems of care that fragment rather than integrate care. A model which integrates knowledge of child, population and science is proposed together with an intersubjective attitude to assessing pain.
2003
Hunt A; Mastroyannopoulou K; Goldman A; Seers K
International Journal Of Nursing Studies
2003
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
The Siblings of Children with Life-threatening conditions
Palliative Care; Siblings; Chronic disease; Life Threatening illness
1992
Stallard P; Mastroyannopoulou K; Lewis M; Lenton S
Child Psychology & Psychiatry Review
1992
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/10.1111/j.1475-3588.1997.tb00042.x" target="_blank" rel="noreferrer">10.1111/j.1475-3588.1997.tb00042.x</a>
Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood
Child; Cross-Sectional Studies; infant; Family; Adult; Prevalence; Parent-Child Relations; Mental Health; adolescent; Preschool; Non-U.S. Gov't; infant; Newborn; Human; Support; Great Britain/epidemiology; Child Welfare/statistics & numerical data; Chronic Disease/epidemiology/psychology; Disabled Children/psychology/statistics & numerical data
OBJECTIVE: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members. DESIGN: Cross-sectional survey. SETTING: Bath Clinical Area (total population 411,800). SUBJECTS: Children aged 0-19 years. RESULTS: One hundred and twenty-three children were identified, giving a prevalence of 1.2/1000 children. Morbidity assessed in 93 children showed 60% in pain or discomfort, 35% unable to walk and 25% with severe cognitive impairment. Mental health problems were found in 54% of mothers and 30% of fathers, and significant emotional and behavioural problems in 24% of healthy siblings. CONCLUSIONS: Non-malignant life-threatening illness is more prevalent than reported in previous studies. Considerable morbidity is experienced by the child and their family. An individual and family approach is required. Key messages (1) The prevalence of non-malignant life-threatening illness is four times greater than previous estimates. (2) This group of conditions have significant implications for all family members. (3) Early comprehensive assessment and access to effective interventions may pre-empt later problems.
2001
Lenton S; Stallard P; Lewis M; Mastroyannopoulou K
Child: Care, Health And Development
2001
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