Cultural Influences in Pediatric Cancer from Diagnosis to Cure/End of Life
Adaptation; Caregivers/px [psychology]; Cultural Characteristics; Neoplasms/px [psychology]; Patients/px [psychology]; Survivors/px [psychology]; Adolescent; Adult; Child; Humans; Infant; Middle Aged; Newborn; Preschool; Psychological
OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. RESULTS: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. CONCLUSION: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.
Gray WN; Szulczewski LJ; Regan SMP; Williams JA; Pai AL
Journal Of Pediatric Oncology Nursing
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).
<a href="http://doi.org/10.1177/1043454214529022" target="_blank" rel="noreferrer noopener">10.1177/1043454214529022</a>
Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study
Caregivers/px [psychology]; Health Status; Neoplasms/px [psychology]; Stress Psychological/px [psychology]; Aged; Cohort Studies; Female; Humans; Male; Socioeconomic Factors; Surveys And Questionnaires; Terminally Ill
PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients. METHOD: We conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socio-economic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress, and health was measured in questionnaires. RESULTS: Of patients to responding caregivers (n = 3635), 89 % suffered from cancer, predominantly lung cancer (23 %). Of responding caregivers, 62 % were partners and 29 % were adult children. In total, one third of caregivers reported severe outcome, 15 % reported severe pre-loss grief symptoms, 16.1 % had moderate to severe depressive symptoms, and 12 % experienced high caregiver burden. Partners had the highest levels of pre-loss grief and depressive symptoms, while adult children reported the highest levels of caregiver burden. CONCLUSIONS: From this cohort, which was estimated to be representative of caregivers to terminally ill relatives in the general population, we found high levels of pre-loss grief, depressive symptoms, and/or caregiver burden in one third of all caregivers. These findings call for increased focus on caregivers' need of support.
Nielsen MK; Neergaard MA; Jensen AB; Bro F; Guldin MB
Supportive Care In Cancer
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).
<a href="http://doi.org/10.1007/s00520-016-3120-7" target="_blank" rel="noreferrer">10.1007/s00520-016-3120-7</a>
A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care
Caregivers/px [psychology]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Quality Of Life; Remote Consultation/ut [utilization]; Adult; Caregivers; Cohort Studies; Female; Health Services Accessibility; Humans; Male; Middle Aged; Outcome And Process Assessment (health Care); Palliative Care; Palliative Care/st [standards]; Patient Satisfaction; Pediatrics/st [standards]; Pilot Projects; Prospective Studies; Referral And Consultation; Rural Population
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.
Bradford N; Young J; Armfield NR; Bensink ME; Pedersen LA; Herbert A; Smith AC
Journal Of Telemedicine & Telecare
2012
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).
10.1258/jtt.2012.gth103