Perceptions of discrimination among Mexican American families of seriously ill children
Middle Aged; Male; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Critical Illness; California; Mexican Americans/px [Psychology]; Prejudice
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall study. Content analysis of interviews with 13 participants from 11 families who were recruited from two children's hospitals in Northern California resulted in numerous codes and revealed that participants perceived discrimination when they were treated differently from other, usually white, families. They believed they were treated differently because they were Mexican, because they were poor, because of language barriers, or because of their physical appearance.
Davies B; Larson J; Contro N; Cabrera AP
Journal of Palliative Medicine
2011
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/10.1089/jpm.2010.0315" target="_blank" rel="noreferrer noopener">10.1089/jpm.2010.0315</a>
The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring
adolescent; Child; Female; Humans; Male; bereavement; hospice care; Pediatrics; Family; Practice Guidelines as Topic; Professional-Family Relations; Patient-Centered Care; Patient Participation; Ethics; Medical; Palliative Care
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.
2014-02
Jones BL; Contro N; Koch KD
Pediatrics
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/10.1542/peds.2013-3608C" target="_blank" rel="noreferrer">10.1542/peds.2013-3608C</a>
Away from home: Experiences of Mexican-American Families in Pediatric Palliative Care
2010
Contro N; Davies B; Larson JM; Sourkes B
Journal of Social Work in End-of-Life & Palliative Care
2010
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/10.1080/15524256.2010.529020" target="_blank" rel="noreferrer">10.1080/15524256.2010.529020</a>
Introduction of a pediatric palliative care curriculum for pediatric residents
ABSTRACT Introduction: The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in EOL issues so they could become more comfortable and knowledgeable in caring for children and adolescents with life-threatening illnesses. Method: The PPCC consisted of six hour-long sessions run by a clinical psychologist, a licensed social worker, and faculty with experience in EOL care. The curriculum repeated every 6 weeks for 1 year. Residents in the training program at Stanford University rotating through oncology, pulmonology, and pediatric intensive care unit (PICU) were invited to attend. Session topics included: (1) personal coping skills, (2) being a caring professional, (3) recognizing cultural and familial differences, (4) pain management, (5) practical issues, and (6) meeting a bereaved parent. Pretest and posttest surveys with five-point Likert scale questions were used to measure curricular impact. Results: Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions (p
2008
Schiffman JD; Chamberlain LJ; Palmer L; Contro N; Sourkes B; Sectish TC
Journal Of Palliative Medicine
2008
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/10.1089/jpm.2007.0194" target="_blank" rel="noreferrer">10.1089/jpm.2007.0194</a>
Conducting a qualitative culture study of pediatric palliative care
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
2009
Davies B; Larson J; Contro N; Reyes-Hailey C; Ablin AR; Chesla CA; Sourkes B; Cohen H
Qualitative Health Research
2009
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/10.1177/1049732308327346" target="_blank" rel="noreferrer">10.1177/1049732308327346</a>
Culturally-sensitive information-sharing in pediatric palliative care
OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. METHODS: The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged
2010
Davies B; Contro N; Larson J; Widger K
Pediatrics
2010
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/10.1542/peds.2009-0722" target="_blank" rel="noreferrer">10.1542/peds.2009-0722</a>
Food, toys, and love: pediatric palliative care
PedPal Lit; Adolescent Adult Child Child; Non-U.S. Gov't United States; Preschool Cultural DiversityFood Humans Infant Interdisciplinary CommunicationLove Needs Assessment Palliative Care/organization & administrationPediatricsPlay and Playthings Research Support
2005
Sourkes B; Frankel L; Brown M; Contro N; Benitz W; Case C; Good J; Jones L; Komejan J; Modderman-Marshall J; Reichard W; Sentivany-Collins S; Sunde C
Current Problems in Pediatric and Adolescent Health Care
2005
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.cppeds.2005.09.002" target="_blank" rel="noreferrer">10.1016/j.cppeds.2005.09.002</a>
Family perspectives on the quality of pediatric palliative care.
Longitudinal Studies
BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of deceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif. METHODS: Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up. Four clinical social workers and one clinical psychologist reviewed the participants' responses and identified frequently occurring themes. RESULTS: Several areas of unsatisfactory interactions with staff were identified: confusing, inadequate, or uncaring communications regarding treatment or prognosis; preventable oversights in procedures or policies; failure to include or meet the needs of siblings and Spanish-speaking family members; and inconsistent bereavement follow-up. A discrepancy emerged between the high degree of pain described by the families and parents' perceptions that pain had been managed well. Community hospice programs are frequently poorly prepared to serve pediatric patients. CONCLUSIONS: There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.
2002
Contro N; Larson J; Scofield S; Sourkes B; Cohen H
Archives Of Pediatrics & Adolescent Medicine
2002
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/10.1001/archpedi.156.1.14" target="_blank" rel="noreferrer">10.1001/archpedi.156.1.14</a>
Hospital staff and family perspectives regarding quality of pediatric palliative care.
Child; Humans; Attitude to Health; Data Collection; Attitude of Health Personnel; Professional-Family Relations; Communication; Longitudinal Studies; Quality of Health Care; Non-U.S. Gov't; Research Support; bereavement; Family/psychology; Palliative Care/standards; Pain/therapy; Personnel; Hospital/psychology; Pediatrics/education/standards
BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
2004
Contro N; Larson J; Scofield S; Sourkes B; Cohen HJ
Pediatrics
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/10.1542/peds.2003-0857-l" target="_blank" rel="noreferrer">10.1542/peds.2003-0857-l</a>