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>
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>
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>
Making sense of loss and benefiting from the experience: two construals of meaning
Female; Humans; Male; Grief; Adult; Interpersonal Relations; Middle Aged; Social Adjustment; Cognition; Life Change Events; Spirituality; Analysis of Variance
Theoretical models of the adjustment process following loss and trauma have emphasized the critical role that finding meaning plays. Yet evidence in support of these models is meager, and definitions of meaning have been too broad to facilitate a clear understanding of the psychological process involved. Using a prospective and longitudinal study of people coping with the loss of a family member, we differentiate 2 construals of meaning--making sense of the event and finding benefit in the experience--and demonstrate that both independently play roles in the adjustment process following the loss. Results indicate that making sense of the loss is associated with less distress, but only in the 1st year postloss, whereas reports of benefit finding are most strongly associated with adjustment at interviews 13 and 18 months postloss.
1998
Davis CG; Nolen-Hoeksema S; Larson J
Journal Of Personality And Social Psychology
1998
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/10.1037//0022-3514.75.2.561" target="_blank" rel="noreferrer">10.1037//0022-3514.75.2.561</a>