Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
pediatrics; Attitude to Health; Adolescent; Adult; Attitude to Death; Child; Cohort Studies; Female; Health Surveys; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Only Child; Parents/ psychology; Pediatrics; Prevalence; Quality of Life/ psychology; Terminal Care/ psychology; Young Adult; decision-making; problems; Parent-Child Relations; Hope; Preschool; serious illness; child; female; male; young adult; adult; Child Health/statistics & numerical data; Critical Illness/epidemiology/ psychology; hopes; parental concordance; Philadelphia/epidemiology
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. METHODS: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. RESULTS: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. CONCLUSION: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Hill DL; Nathanson PG; Fenderson RM; Carroll KW; Feudtner C
Journal of Pain and Symptom Management
2017
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/10.1016/j.jpainsymman.2016.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.11.007</a>
Symptoms and problem clusters in cancer and non-cancer patients in specialized palliative care-is there a difference?
Female; Humans; Male; Palliative Care; Neoplasms; symptoms; Aged; Inpatients; Germany; cancer; Cluster Analysis; non-cancer; problems
CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to differentiate symptom clusters in the non-cancer population from those in cancer patients. METHODS: Inpatient data from the German Hospice and Palliative Care Evaluation between 2007 and 2011 were used for a cluster analysis of a 16-item symptom and problem checklist. An agglomerative hierarchical method was chosen. Coefficients from distance matrix ranging between 0 and 1 were calculated to indicate the interrelationship of clustered symptoms. RESULTS: The analysis identified five clusters in cancer patients: 1) nausea and vomiting (d = 0.000); 2) anxiety, tension, and feeling depressed (d = 0.125); 3) wound care and disorientation/confusion (d = 0.229); 4) organization of care and overburdening of family (d = 0.202); and 5) weakness, tiredness, need for assistance with activities of daily living, and loss of appetite (d = 0.207). Five comparable clusters were identified in non-cancer patients: 1) nausea and vomiting (d = 0.000); 2) anxiety, tension, and feeling depressed (d = 0.166); 3) organization of care and overburdening of family (d = 0.187); 4) weakness and need for assistance with activities of daily living (d = 0.139); and 5) tiredness and loss of appetite (d = 0.182). CONCLUSION: As symptom clusters do not significantly differ between cancer and non-cancer patients, specific frequent symptoms in non-cancer patients should be assessed. Identification of symptom clusters may help to target therapies and focus the use of medications to improve patients' quality of life.
2014-07
Stiel S; Matthies Dominik MK; Seuß D; Walsh D; Lindena G; Ostgathe C
Journal Of Pain And Symptom Management
2014
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.2013.08.018" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.08.018</a>