Factors That Distinguish Symptoms of Most Concern to Parents from Other Symptoms of Dying Children

• Published in: Journal of pain and symptom management 2010-04, Vol.39 (4), p.627-636
• Main Authors: Pritchard, Michele, PhD, RN, CPNP, Burghen, Elizabeth A., MSN, PNP, Gattuso, Jami S., MSN, CPON, West, Nancy K., BSN, Gajjar, Poorna, BSN, Srivastava, Deo Kumar, PhD, Spunt, Sheri L., MD, Baker, Justin N., MD, Kane, Javier R., MD, Furman, Wayne L., MD, Hinds, Pamela S., PhD, RN, FAAN
• Format: Article
• Language: English
• Subjects: Adolescent; Anesthesia & Perioperative Care; Attitude to Death; Biological and medical sciences; Cancer; cancer-related death; Child; Child, Preschool; Dying children; end of life; End of life decisions; Female; Grief; Humans; Infant; Infant, Newborn; Male; Medical sciences; Neoplasms - mortality; Neoplasms - nursing; Neoplasms - psychology; Pain Medicine; Parent-Child Relations; Parental perceptions; Parents; Parents - psychology; pediatric oncology; Pharmacology. Drug treatments; Physician-Patient Relations; Psychological distress; Symptoms; Tennessee - epidemiology; Terminal Care - psychology; Young Adult
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2009.08.012

Abstract In a previous study, we conducted telephone interviews with parents 6 to 10 months after their child's death from cancer, using open-ended questions to identify the type and frequency of cancer-related symptoms that most concerned them during the last week of their child's life. Because the parents identified many clinically striking symptoms ( n = 109) that were not of most concern to them, we conducted a secondary analysis of these interviews (48 mothers and four fathers of 52 patients) to identify descriptive factors associated with the parents' level of concern. Six descriptive factors were associated with symptoms of most concern and 10 factors with symptoms not of most concern. Ten of these 16 factors occurred in both categories, indicating that clinicians should directly query parents to identify the symptoms that concern parents the most. Six factors differed between the two categories, and only one (the continuous distress caused by a symptom that is unrelieved) was unique to the category of symptoms of most concern. Five factors (symptom present for at least one week, symptom not seen as remarkable by the parent or causing no distress to the child, symptom well managed, symptom improved, and symptoms for which the parent felt adequately prepared) were unique to the category of symptoms not of most concern. By inquiring about symptoms of most concern and factors that influence parental concern, clinicians may be better able to direct care efforts to reduce patients' and parents' distress and support parents during the difficult end-of-life period.