Paediatric Palliative Care: A Survey Of Paediatricians And Family Practitioners
Adaptation Psychological; Adult; Aged; British Columbia; Curriculum; Data Collection; Education Medical Continuing; Female; Humans; Male; Middle Aged; Palliative Care/ Psychology; Pediatrics/ Education; Physicians Family/ Education/ Psychology; Self Care/psychology; Surveys And Questionnaires
BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness. The purpose of this study was to assess the experience with and confidence in providing paediatric palliative care of practicing family/general practitioners (GPs) and paediatricians. In addition, the learning needs, modes of learning and their methods of coping/self-care were questioned. METHODS: Two hundred paediatricians and GPs in the province of British Columbia were randomly selected to participate in a mailed survey. The survey consisted of three categories: demographic information, experience and knowledge of paediatric palliative care, educational needs and preferences for learning and provision of their own self-care. RESULTS: The response rate of completed surveys was 56.5%. Only 40.1% of respondents felt their knowledge and experience were adequate. Overall, 73.5% of the respondents reported that they would like to learn more about paediatric palliative care. Over 53% of those surveyed preferred that learning be offered remotely through either internet or correspondence. Seventy-four per cent of respondents expressed they had adequate or very adequate self-care strategies to meet their own needs of well-being. CONCLUSIONS: The results of the survey will guide the paediatric palliative care community to design programmes that will better educate practicing physicians and future physicians about paediatric palliative and end of life care, healthcare services and family communication and support.
Straatman L; Miller T
Bmj Supportive & Palliative Care
2013
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="https://doi.org/10.1136/bmjspcare-2011-000058" target="_blank" rel="noreferrer">10.1136/bmjspcare-2011-000058</a>
Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment
Adolescent; Analgesics/ Therapeutic Use; Child; Developmental Disabilities/ Complications; Female; Humans; Male; Pain/complications/ Drug Therapy; Pain Management/ Methods; Pilot Projects; Practice Patterns Physicians'/ Statistics & Numerical Data
BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain. OBJECTIVE: To assess how physicians use pharmacotherapy to treat PIUO, and to report a pilot study of a standardized approach to investigating and treating PIUO. METHOD: Part 1 of the present study involved independently presenting a case vignette of a patient with PIUO to six experienced physicians who care for children with neurological impairments. They were asked for medication choices and sequences to empirically treat PIUO. Part 2 was a pilot study of a PIUO protocol. Patients followed a standard pathway for PIUO, referred to as the pathway for unknown pain (PUP). The initial drug sequence for the PUP was based on Part 1. RESULTS: In Part 1, physicians responding to the case vignette listed eight medications (atypical antipsychotics, benzodiazepines, gabapentin, methadone, opioids, selective serotonin reuptake inhibitors, tramadol and tricylic antidepressants) and eight empiric drug sequences. In Part 2, eight children with PIUO (six to 17 years of age; five females, three males) were enrolled in a pilot clinic. Only two had been fully evaluated for nociceptive-inflammatory pain sources before enrollment. At the end of the pilot study, four patients were clinically improved and only three required a study medication. DISCUSSION AND CONCLUSION: Even experienced physicians do not agree on a common approach for medical treatment of PIUO. A standardized pathway is feasible and readily implemented. The proposed PUP has the potential to address PIUO and be the basis for future intervention studies.
Siden H; Carleton BC; Oberlander TF
Pain Research & Management
2013
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="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805346/" target="_blank" rel="noreferrer">PMC3805346/</a>
Moving Family-centered Care Forward: Bereaved Fathers' Perspectives
Bereaved Fathers; Family-centered Care; Pediatric Health Care Providers Behaviors
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.
Davies B; Baird J; Gudmundsdottir M
Journal Of Hospice And Palliative Nursing
2013
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="https://doi.org/10.1097/NJH.0b013e3182765a2a" target="_blank" rel="noreferrer">10.1097/NJH.0b013e3182765a2a</a>
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Terminal Care; Adolescent; British Columbia; Child; Child Preschool; Female; Health Resources/ Utilization; Health Services Needs And Demand; Humans; Infant; Infant Newborn; Length Of Stay/statistics & Numerical Data; Male; Patient Discharge/statistics & Numerical Data; Young Adult
BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the pediatric population in British Columbia, Canada. METHODS: Data from Vital Statistics British Columbia were obtained for the pediatric population that died between 2002/03 and 2006/07. Our sample included three age groups: less than 1 year (excluding sudden infant death syndrome cases), 1 to 19 years, and 20 to 24 years. Using data from the Medical Services Plan and Discharge Abstract Database, we calculated annual rates of resources utilized (number of discharges, number of days in hospital, and number of medical services used) for every pediatric death that was due to an LTD in our selected 5-year time frame. Place of death was also explored. RESULTS: During the fiscal year of death and the fiscal year prior to death, children/adolescents and young adults dying of a pediatric LTD respectively experienced 5.3 and 3.7 hospital discharges, spent 48 and 39 days in the hospital, and required approximately 222 and 230 medical services. Infants were discharged once on average, and required 21 medical services. CONCLUSIONS: Resource utilization was very high for all three age groups, demonstrating the intense need for care by children dying of disease. These findings call for the strengthening of palliative care services in the province.
Chavoshi N; Miller T; Siden H
Journal Of Palliative Medicine
2013
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="https://doi.org/10.1089/jpm.2013.0110" target="_blank" rel="noreferrer"> 10.1089/jpm.2013.0110</a>