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Away from Home: Experiences of Mexican American Families in Pediatric Palliative Care
Abstract
In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty--especially with a critically ill child--are needed.
... The obstacles of language barriers in pediatric palliative care have been reported by caregivers, especially in the context of accurate and complete dissemination of information [11][12][13]. From the perspective of foreign families, language barriers may result in dissatisfaction with care [14]; difficulties in utilizing health care services [14,15] and reduced quality of care [16][17][18]. In the clinical routine in general and particularly in pediatric palliative care, different strategies such as the involvement of (professional) translators are used to overcome language barriers between care providers and patients/families [13,[18][19][20][21][22][23][24][25]. ...
... The results show that almost half of the parents on the pediatric palliative care unit speak a mother tongue other than the local language. This finding demonstrates on the basis of concrete data that language barriers seem to be pervasive in pediatric palliative care and is therefore generally consistent with other research [15,26,35,36]. At the same time, this implies the need for culturally sensitive communication in the health care sector and in the field of pediatric palliative care [22,30,[37][38][39]. ...
... However, language barriers faced by such a large national group also imply that critically ill children may not receive the best possible care. One essential care objective of pediatric palliative care, which is to take into account the whole family, can only be insufficiently fulfilled if, due to insufficient language skills, parents receive an inadequate picture of their child's disease situation, are less able to participate in the treatment process of their child or are unable to express their own wishes or needs [7,13,15,39]. This last point can also complicate good interpersonal relationship building and the important joint collaboration between healthcare professionals and parents. ...
To date, there are no specific figures on the language-related characteristics of families receiving pediatric palliative care. This study aims to gain insights into the languages spoken by parents, their local language skills and the consistency of professional assessments on these aspects. Using an adapted version of the “Common European Framework of Reference for Languages”, the languages and local language skills of parents whose children were admitted to an inpatient pediatric palliative care facility (N = 114) were assessed by (a) medical staff and (b) psychosocial staff. Nearly half of the families did not speak the local language as their mother tongue. The most frequently spoken language was Turkish. Overall, the medical staff attributed better language skills to parents than the psychosocial staff did. According to them, only 27.0% of mothers and 38.5% of fathers spoke the local language at a high level while 37.8% of mothers and 34.6% of fathers had no or rudimentary language skills. The results provide important information on which languages pediatric palliative care practitioners must be prepared for. They sensitize to the fact that even within an institution there can be discrepancies between the language assessments of different professions.
... Poverty, absence of traditional social supports, and difficulties with the healthcare system are important mediators of PC experiences for Latino families [41]. Poverty can interfere with cultural practices around death and the bereavement process, as when some families are forced to opt for cremation [41]. ...
... Poverty, absence of traditional social supports, and difficulties with the healthcare system are important mediators of PC experiences for Latino families [41]. Poverty can interfere with cultural practices around death and the bereavement process, as when some families are forced to opt for cremation [41]. Furthermore, the high cost of healthcare is an added source of burden for poor families [19,42]. ...
... Furthermore, the high cost of healthcare is an added source of burden for poor families [19,42]. In addition, geographic separation from family and traditional social supports can lead to feelings of isolation, as expected given the cultural value of familismo [16,41,43]. Despite this, however, Latino families also report a sense of trade-off that being in the US allows their child to receive the best care possible [41]. ...
As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related to PC for Latino children and their families in the United States. In the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. Education of providers on Latino cultural values is necessary. Additionally, advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population.
... Facilitators to good care included strategies to overcome communication barriers such as modifying the language used (Brassart et al., 2017) and using signs, charades, and picture charts (Pergert et al., 2008); however, this offered potential for misunderstandings (Pergert et al., 2008). Non-verbal communication, such as expressive eye contact (Khanlou et al., 2015), engagement (King et al., 2015), or human connection (Contro, Davies, Larson, & Sourkes, 2010), were linked to empathy, trust (Khanlou et al., 2015), and open-minded, non-judgemental interactions (King et al., 2015). ...
... Insufficient systematic resources decreased mother's ability to cope(Burnes et al., 2008). Furthermore, some families appeared to be missing out on services and resources(Gulati et al., 2012) and even struggling to get appropriate diagnosis and treatment(Pinheiro & Jaff, 2018).Families discussed financial stresses, with limited time and unemployment appearing important factors within the structural challenges to care(Beatson, 2013;Brassart et al., 2017;Contro et al., 2010). Financial stressors sometimes related directly to the cost of medical care or lack of insurance and associated implications(Fellin et al., 2013;Pinheiro & Jaff, 2018;Wolff et al., 2010). ...
Aims
To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications.
Design
Systematic literature review.
Data Sources
The following search engines were searched from 2008 ‐ 2018: Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health, MEDLINE, Embase, ProQuest, Scopus, Psycinfo, and Web of Science. Extensive reference and citation checking were also conducted.
Review Methods
Systematic review followed PRISMA guidelines with prepared PROSPERO registered protocol #CRD42019129200. English language qualitative, quantitative, or mixed methods studies were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT).
Results
Eighteen studies (reported in 20 articles) met the final inclusion criteria. Most focused on challenges to care provision. Thematic analysis following methods proposed by Braun and Clarke was undertaken. Five themes were identified: (a) divergence of beliefs and expectations; (b) communication; (c) navigating healthcare systems; (d) burdens and coping strategies; and (e) training and knowledge. A compassionate, collaborative approach with mutual respect crossed themes and was linked to high‐quality care.
Conclusion
Forced migrant families have multiple needs including physical and emotional support and help in navigating complex systems. Professional interpreters can ease communication barriers when resourced appropriately. Individualized care is crucial to addressing the intricate mosaic of culture such families present. A cultural sensitivity/insensitivity framework is presented that may help guide future interactions and priorities for those working in children's palliative care.
Impact
This systematic review explored the international experiences of palliative care for forced migrant families. The findings highlight the plight of families who experience multiple traumas and increased levels of grief and loss through their migration experiences and when caring for a child with a life‐limiting condition. This research has potential to have an impact on professionals working with culturally diverse families in all palliative care settings.
... A developing, multicultural society makes sure that healthcare providers will have no easy mission of providing proper healthcare services for persons who have different beliefs, principles, cultural experiences, religions, values, languages, and concepts of healthcare. Many people base their lives around cultural practices and spiritual beliefs, and in order to provide healthcare services of sufficient quality healthcare providers should be both customarily sensitive and culturally experienced (39), (40). ...
... As most of the Syrian refugees have an Islamic culture, females may feel uncomfortable to use a stranger to help them in communicating with healthcare providers, especially if the interpreters are males. This finding might demonstrate that some barriers are created by the strict religious modesty norms and associated gender preference of their health care provider and religious understanding of illness (40,42). ...
The Syrian war which has started in 2011, caused the largest humanitarian and refugee crisis of the present time. Healthcare services are provided at no cost to the Syrian refugees in Turkey, however, the language barrier remains a major problem in accessing healthcare services. We aimed to examine the dimensions of language problem among Syrian refugees, while accessing healthcare services in Ankara. A questionnaire consisting of 38 questions was used as the survey tool. For the study sample characteristics, frequencies and percentages were reported. For cross-tabulations, statistical significance was determined using the Pearson Chi-Square test. Of the 221 participants 46.6% were males, while 53.4% of them were females. Participants were between 18-85 years old (mean: 36 years old). 11.1% can speak Turkish. 77.1% of the participants believed that the language barrier has a negative effect in accessing healthcare services. 51.1% of the participants did not use healthcare services at least once, despite their need. 48.5% of the participants used hospital interpreters while 20.6%, 17.6% and 13.2% of them did not get any help, used ad hoc interpreters such as friends or family members and used a private interpreter respectively during healthcare visits. Perception of language as a barrier was more common, among participants, who were married, jobless, illiterate, had no Turkish speaking relatives or had diseases. Gender, economic status, having Turkish-speaking relatives and having diseases were variables showing association with the method they used to cope with the language barrier. Employment status and having social relationships with the local people seem to be very important in learning the Turkish language, hence having a better access to healthcare services, which highlighted the issue of integration. Nevertheless, with a society like Syrian one, gender preference might be an important factor in this aspect even if such opportunities are available.
... This support may come in the form of emotional (e.g., spending time, expressing affection) or practical (e.g., helping with child care or household tasks) support. 4,16 Qualitative, [17][18][19][20] case/control, 21 and crosssectional 22 studies have suggested that perceived social support may lessen the impact of a child's illness on parents' mental health, and more specifically, research on parents of children with cancer has found that perceived social support may affect parental mood, 21 stress and coping, 6,21 levels of psychological distress, 23,24 and mental health-related functioning. 25 The protective association of perceived social support with parental anxiety over time has been empirically tested in parents of children with cancer, 24,25 but not in other diagnosis groups. ...
... Qualitative studies have found that while parents sometimes felt isolated from their social network, parents identified social support as critical for coping with the emotional stress of parenting a seriously ill child. [17][18][19][20] One cross-sectional case/ control study of parents of children with cancer found that poor social support was the most important factor linked with poor mental health outcomes. 21 Our two-year study time frame allowed us to examine the temporal relationship between social support and anxiety, affirming our hypothesis that social support has a protective association on parental anxiety over time. ...
Background:
Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses.
Objective:
To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time.
Design:
Prospective cohort study.
Setting/Subjects:
Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia.
Measurements:
Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months.
Results:
The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling.
Conclusions:
Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.
... Families described the need for professionals to understand their migration experiences to better empathise with them. Scholars have stressed the importance of listening to migration experiences to better understand individuals past traumas and family context (69). However, such conversations may prove difficult and can be challenging for professionals to pitch correctly, which can lead to avoidance. ...
Introduction
This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with a focus upon improving quality of life. Forced migrant families encounter a range of additional challenges including the loss of family, belongings, and all sources of familiarity and support. The difficulties of navigating complex bureaucratic systems can confound access and communication difficulties.
Methods
Interpretative Phenomenological Analysis methodology was used in this study to privilege participant perspectives and apply an active in-depth cyclical process of reflection and reflexivity. Advisory group members provided expertise in childhood illness, palliative care and forced migration, throughout the study. The Silences Framework offered novel theoretical and philosophical concepts, which helped to situate and prioritise the “silences” within the marginalised discourses of forced migration and palliative care. Seven family members and seven health care professional participants were interviewed from hospital, hospice and community palliative care settings in the UK.
Results
Four overarching themes were identified related to experiences of loss and grief, communication, faith and coping strategies and alienation and discrimination. Compassionate, empathetic, family-centred care which valued family belief systems and coping strategies, optimised care. Learning with and from families was described by all participants, which enhanced understanding and fostered mutual respect. However, barriers included poor access to services and resources, protocol-led care, limited time with families, communication barriers and staff burnout.
Discussion
The findings suggest the need for a specific educational pathway for palliative care professionals to include spiritual care provision, cultural humility, and moral reasoning. Interdisciplinary education including the use of lived-experience expert insights is also advocated. Sufficient time to build relationships, the importance of interpreter support and the need for better access to hospice care for forced migrant families is also recommended.
... Support for families living in regional, rural and remote parts of Australia can be improved through strategies such as the 'pop-up' model described above 16 and through telehealth. 24 A small number of literature sources emphasise the specific needs of culturally and linguistically diverse populations, 25,26 and key policymaking organisations recommend addressing these. 4,8,10 In Australia, policymaking organisations place particular emphasis on Aboriginal and Torres Strait Islander people. ...
Aim
Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice.
Methods
A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness.
Results
A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness.
Conclusions
The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.
... These moments represent the last time the family will be with the child and are likely to remain in the family's memory permanently. This time, often referred to as a "death vigil," may include any religious and cultural practices important to the child and family [64]. Many families choose to engage in quiet prayer, lay with the child, play music, or speak softly to the child to provide final words or sentiments. ...
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.
... Attending these death events is often seen as a family obligation (Baloyi, 2014;Schoulte, 2011). Family members unable to attend often experience feelings of loneliness and isolation (Contro et al., 2010). Knowledge of these ritual practices is important for community health nurses in providing support that is sensitive and appropriate for the remaining immediate family members and friends. ...
Aims
The purpose of this study was to examine the reported ritual practices (dealing with the deceased's remains, wake, funeral, burial and celebration) of White non‐Hispanic, Black non‐Hispanic and Hispanic/Latino adults in their country of origin or ethnic or cultural group in the United States following the death of a loved one.
Design
This descriptive study is a secondary analysis from a longitudinal mixed‐methods study that examined parents' health and functioning following the death of a child.
Methods
Adult parents whose child died in neonatal intensive care units or paediatric intensive care units were recruited from four hospitals and from death records. Data were collected from 61 adult parents at 7 and 13 months postinfant/child death using semi‐structured interviews about the child's death. Only those parents who responded to questions about usual death practices in their country of origin or cultural group were included in the data analysis.
Results
Thirty‐two adults from 14 countries reported practices in their country or cultural group after a loved one's death including keeping the front door closed, walking funeral processions with a band playing, the deceased in a car accompanied by family and friends, fireworks, making home altars for deceased spirits with food and water for adults, toys and candy for children and no TV or radio for sometime.
Relevance to clinical practice
For community health nurses, understanding these practices is important in being sensitive and appropriate around the death. Asking the family about specific practices they hope to carry out and noting this in the family's record will help alert providers to the family's wishes at this challenging time.
... The extent to which previously described disparities in communication and care apply to children with advanced cancer is not well understood. The limited existing work has identified 17 cultural and language barriers to optimal palliative care for Spanish-speaking and Mexican immigrant families 18,19 and higher rates of inpatient deaths among children with cancer who are racial or ethnic minorities relative to whites. 20−22 However, important gaps in knowledge remain, including the underpinnings of disparities. ...
Context
Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer.
Objectives
To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.
Methods
We conducted a prospective cohort study at 9 pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify higher intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, Asian/other race) parents.
Results
26% of parents recognized the child’s low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (OR .19, 95%CI .06-.63, P=.006) and the fact that current treatment was unlikely to offer cure (OR .07, 95%CI .02-.27, P<.0001). Children of minority parents were more likely to experience higher intensity medical care (OR 3.01, 95%CI 1.29-7.02, P=.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with higher intensity medical care (aOR 2.14, 95%CI .84-5.46, P=.11), although power to detect an association was limited.
Conclusion
Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations.
... 67,72 26 studies were carried out with parents post-bereavement. [31][32][33][34][36][37][38]41,42,44,46,[50][51][52]54,58,63,64,66,68,71,73,74,78,80,81 Studies were heterogeneous in terms of methods; the majority made use of qualitative methods including individual interviews, 31 ...
Background
Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises.
Aim
The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved.
Design
This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646).
Data sources
An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included.
Results
Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care.
Conclusion
Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.
... 21,46 In 2012, Latinos represented the largest minority group in the United States, comprising 17% of the population; this number is expected to rise to 31% by 2060. 47 Contro et al. 48 described the experiences of Mexican American immigrants who moved to the United States and then experienced the death of a child; challenges faced by these families in being far from home included a backdrop of poverty, absence of traditional social support, and challenges in caring for healthy siblings. Other studies about the influence of culture in hospice care have highlighted the importance of the family in EOL decision-making in Latino families, the belief that truth telling about prognosis was harmful to the patient, and a preference to not discuss death openly. ...
Objective:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience.
Study design:
We held 20 semistructured interviews with 34 caregivers of children who died of cancer and used hospice. Interviews were conducted in the caregivers' primary language: 12 in English and 8 in Spanish. Interviews were recorded, transcribed, and analyzed using accepted qualitative methods.
Results:
Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. Five English-speaking families returned to the hospital because of unsatisfactory symptom management and the need for additional supportive services. Alternatively, Spanish speakers commonly stressed the importance of being at home and did not focus on symptom management. Both groups invoked themes of caregiver appraisal, but English-speaking caregivers more commonly discussed themes of financial hardship and fear of insurance loss, while Spanish-speakers focused on difficulties of bedside caregiving and geographic separation from family.
Conclusions:
The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.
... In the Latino, African American and Afro-Caribbean cultures attending the funeral of family members is considered a family obligation (Schoulte, 2011). For other families newly immigrated to the US, family members may live in the native country and not be able to attend the burial, leaving the newly immigrated family members feeling alone and isolated (Contro, Davies, Larson, & Sourkes, 2010). In many cultures it is customary to stay with the family until after the burial. ...
Design and methods:
Qualitative design, 63 parents completed English or Spanish semi-structured interviews at 7 & 13months after infant's/child's death. Interviews were audio-recorded, transcribed verbatim, and entered into Atlas.ti for analysis. An inductive approach to thematization was used to develop codes.
Results:
Parents: mean age 35.1years (SD=9.03); 33% Black, 27% White, 40% Hispanic; from 17 countries. Three themes emerged: immediately after death - shock and stress, needing help with arrangements, decisions on burial or cremation (conflicts due to finances, religion, culture), when and where to hold wakes, funerals/burials. Wakes and funerals - who prepares child's body, appropriate dress (deceased child, mourners), who can come (cultural restrictions),-variations by child age, parent choice, culture, religion, country. After burial/cremation - being with family, milestone celebrations.
Conclusion:
Child death is devastating for parents, other children, grandparents, and family members.
Practice implications:
Rituals after child death require decisions about the child's remains, wakes, funerals/burials at time of great pain for parents. This is especially true for newly immigrated parents and those with language barriers where making arrangements is especially hard and often very isolating. Health professionals who provide support need to be cognizant of practice differences based on religion, culture, economics, family traditions, and individual preference and provide as much support and resource as possible. A list of religious leaders representing the community's cultures and funeral service providers who may provide lower cost burials/cremations is helpful.
... 58 When faced with a poor prognosis, Latino parents may have limited understanding of end-of-life issues or their therapeutic options. 59 Therefore, health care professionals have greater responsibility to ensure that a critically ill Latino child's parents or guardians clearly understand the issues and options related to end-of-life care. Cultural factors also have an important part in the family's approach to end-of-life care and their interactions with the health care team. ...
Research on health equity has focused on documenting health care disparities or understanding factors leading to disparities, but limited efforts have focused on reducing health care disparities in children. Latino children have increased prevalence of acute and chronic conditions; they have limited access and other barriers to high-quality health care, including intensive care.
To determine whether pediatric intensive care unit mortality can be reduced by a multilevel health care delivery intervention.
Observational study of factors associated with pediatric intensive care unit mortality at a tertiary care metropolitan children's hospital in Memphis, Tennessee. Participants were children younger than 18 years discharged from the pediatric intensive care unit during the 3-year preintervention period of 2007 to 2009 (n = 3891) and 3-year postintervention period of 2010 to 2012 (n = 4179).
Multilevel health care intervention to address the increased odds of mortality among Latino children.
The odds of mortality were analyzed over the 3-year preintervention period (2007-2009) using multivariable logistic regressions to control for age, sex, race/ethnicity, severity of illness, major diagnostic categories, diagnosed infections, and insurance status. Data from the postintervention period (2010-2012) were analyzed similarly to measure the effect of changes in health care delivery.
Unadjusted mortality rates for white, African American, and Latino children in 2007 to 2009 were 3.3%, 3.3%, and 8.6%, respectively. After controlling for covariates, no differences in the odds of mortality were observed between white children and African American children (odds ratio [OR], 1.0; 95% CI, 0.6-1.7; P = .97), but Latino children had 3.7-fold (95% CI, 1.8-7.5; P < .001) higher odds of mortality. A multilevel and multidisciplinary intervention was launched to address these differences. In the postintervention period, unadjusted mortality rates for white, African American, and Latino children were 3.6%, 3.2%, and 4.0%, respectively, with no differences observed after adjustment for covariates (OR, 0.7; 95% CI, 0.2-2.1; P = .49). The odds of mortality decreased between the preintervention period and postintervention period for Latino children (OR, 0.24; 95% CI, 0.06-0.88; P = .03) but remained unchanged for white and African American children (OR, 1.02; 95% CI, 0.73-1.43; P = .90).
Latino children had higher odds of mortality, even after controlling for age, sex, severity of illness, insurance status, and other covariates. These differences disappeared after culturally and linguistically sensitive interventions at multiple levels. Local multilevel interventions can reduce the effect of health care inequities on clinical outcomes, without requiring major changes in health care policy.
... A prospective design was, however, neither feasible nor respectful of the enormous burden that fathers facing the loss of a child must endure. Further, past research and clinical experience has shown that parents are unlikely to quickly forget the details of such a monumental event 29 ; moreover, the fathers' experiences as they remember them is the focus of this study. As well, the reflective nature of the questions asked were, in some instances, therapeutic for the fathers who participated. ...
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.
... Cultural practices and spiritual beliefs are the foundations on which many lives are based, and quality care requires medical providers to be both culturally sensitive and culturally competent. This is especially vital during the vulnerable period of end-of-life during childhood (Levetown, 1998; Contro et al., 2010). Although research has been growing in the palliative care field, the majority of literature on pediatric palliative care focuses on epidemiology, parental decision-making factors, models of care, ethical and legal considerations, symptom management, and ways of providing total care for the family (Gilmer, 2002; Tomlinson et al., 2006; Moody et al., 2011). ...
Objective:
A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.
Method:
Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine.
Results:
Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.
Significance of results:
The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
... Individually, AJHPC had 16 articles, [20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35] BMCPC had 0 article, COSPC had 0 article, IJPC had 3 articles, [36][37][38] IJPN had 12 articles, [39][40][41][42][43][44][45][46][47][48][49][50] JHPN had 1 article, [51] JPC had 11 articles, [52][53][54][55][56][57][58][59][60][61][62] JPM had 35 articles, JPPCP had 1 article, [98] JSWELPC had 5 articles, [99][100][101][102][103] PM had 9 articles, [104][105][106][107][108][109][110][111][112] and PSC had 4 articles [113][114][115][116] on "pediatric palliative care." Also refer to Table 1 for respective reporting rates for journals and Figure 3 for the comparison of number of "pediatric" articles and "nonpediatric" articles between the journals. ...
Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence.
This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care.
This was a systematic review of palliative care journals.
Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs.
Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.
The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206).
The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
... Interviewing families with children in palliative care presents many challenges . First, we recognized that participants in the study would be undergoing a period of considerable stress (Contro et al., 2010). Therefore, when they were first approached regarding the study, when they signed the consent form, at the beginning of each interview and in the course of all interviews, the families were reassured that they could choose to stop the interview at any time. ...
Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.
... In large part, these responses arise from having to watch their child suffer, ensuring effective symptom management (Goldman et al., 1990; Kreicbergs et al., 2005; Theunissen et al., 2007 ), engaging in sensitive, potentially distressing, discussions (for example, talking to their child/sibling about death) (Kreicbergs et al., 2004) and making difficult decisions about a wide range of other issues such as place of death and withdrawal of treatment (Hinds et al., 2001; Vickers and Carlisle, 2000). The importance of differences in parental caring for children across diagnostic groupings (Wood et al., 2010) as well as according to cultural context (for example, how language barriers mediate parents' experiences), has been highlighted (Contro et al., 2002Contro et al., , 2010 Davies et al., 2010). Notwithstanding these differences, parents efforts to maintain, as far as possible, 'normality' in family life have been shown to be fundamental to effective coping. ...
Objectives
Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers’ ability to align their support with the perspectives and needs of families. This review provides insight into how families from EM backgrounds experience children’s palliative care (CPC) by answering the question, “What are the experiences of EM families of children’s palliative care across developed countries?”
Methods
A systematic search of articles from 6 databases (Scopus, Medline, Web of Science, APA PsycINFO, CINAHL, and Global Health) with no limit to the date of publication. The search was conducted twice, first in June 2022 and again in December 2022. The extracted data were analyzed using thematic synthesis.
Results
Eight studies explored the experiences of families of EM in different high-income countries. Four themes were identified: unmet needs leading to communication gaps, accessibility of hospital services and resources, the attitude of healthcare workers, and the need for survival as an immigrant.
Significance of results
Overall, the study shows EM families rely heavily on healthcare professionals’ cultural competence in delivering palliative care for their children. There is an interplay between EM families’ culture, spiritual ties, communication, and social needs from this review. Understanding how to bridge the communication gap and how families use their culture, faith, and spirituality to manage their pain, and grief and improve their quality of life would be extremely beneficial for healthcare practitioners in increasing their support to EM families accessing CPC.
Pediatric Palliative Care: A Model for Exemplary Practice lays out a road map for
health-care providers interested in optimizing care for seriously ill children
and their families.
Grounded in clinical practice and the study of positive rather than
problematic encounters between providers and parents, this book presents
an evidence-based model of exemplary interaction. The chapters offer a
clear understanding of the complex, holistic process of interaction between
providers and parents, as well as the personal and professional knowledge
and skills needed to interact in optimal ways.
This is a one-of-a-kind guidebook for health-care providers interested in
(re)discovering how to maximize positive outcomes for both families and
providers. It is also a valuable source of inspiration for educators, supervisors,
and hospital administrators who want to facilitate personal and professional
development and create supportive environments for students, providers,
seriously ill children, and their families.
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.
Background:
Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care.
Methods:
We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having ≥2 intensity markers (including hospital death).
Results:
There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had ≥2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and ≥2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and ≥2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and ≥2 intensity markers.
Conclusions:
Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.
Context:
In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital.
Objectives:
We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care delivery.
Methods:
Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations.
Results:
Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes.
Conclusion:
Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.
Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018. © 2018 American Cancer Society.
Qualitative research makes a unique and valuable contribution to health evidence by illuminating the attitudes, opinions, feelings, and behavior of individuals around common phenomena. Knowledge of the state of qualitative research in pediatrics is important to identify what qualitative research has been done, how qualitative evidence has been used, and to identify opportunities for future work. This chapter provides a scoping review of the use of qualitative research in pediatrics to identify key approaches, applications, and trends in the use of these qualitative methods. One hundred and sixty three articles were included in the review. Extracted data was coded and categorized and a cross-comparison of methods and discipline, methods and year, perspective and year, and sample and year was conducted. Nurses most commonly used qualitative methods, and the dominant qualitative tradition was phenomenology. Of the five themes explored (care experiences, health and illness experiences, care delivery systems, care needs, and family dynamics), care experiences was the most commonly identified theme. There is an underutilization of qualitative approaches to explore family dynamics in pediatrics and additional health services research concepts. The use of qualitative methods has steadily increased with time in pediatrics, demonstrating an increasing recognition of the value of qualitative research to shape decisions and link evidence with practice. Going forward, we urge the use of more detailed methods of reporting and encourage even more qualitative inquiry in pediatrics. The use of qualitative methods provides a voice to patient and family experiences, and allows for the evaluation of treatment responses and explanations of processes within disease trajectories and health care systems.
The kind of care that nurses provide for dying persons is influenced by their perceptions and attitudes toward death. Gaining an increased understanding of nurses' perceptions of changes that would facilitate appropriate end-of-life care is important to improve quality care. Using a translated modified version of The National Survey of Critical Care Nurses Regarding End-of-Life questionnaire, the correlation between 151 nurses' demographic factors and their perceptions of supportive behaviors' magnitude was assessed. The highest/lowest perceived supportive behavior magnitude scores belonged to items, respectively, "providing a peaceful, dignified bedside scene for family once the child has died" (5.75) in health care professional-related category and "letting the religious leader take primary care of the grieving family" (1.08) in organizational-related category. Some nurses' demographic factors including family and close friends' death experience, number of dying children who were cared for, and previous education toward death and dying were positively correlated with perceived supportive behavior magnitude scores. This study revealed that nurses' personal and professional experience may affect their perceptions of supportive behaviors in providing end-of-life care. Some educational programs in raising nurses' self-awareness of their perceptions, accompanied by interventions, are required to improve pediatric end-of-life care.
Hospice is an important provider of end of life care. Adult minorities are less likely to enroll on hospice; little is known regarding the prevalence of pediatric hospice use or the characteristics of its users. Our primary objective was to determine whether race/ethnicity was associated with hospice enrollment in children with cancer. We hypothesized that minority (Latino) race/ethnicity is negatively associated with hospice enrollment in children with cancer.
In this single-center retrospective cohort study, inclusion criteria were patients who died of cancer or stem cell transplant between January 1, 2006 and December 31, 2010. The primary outcome variable was hospice enrollment and primary predictor was race/ethnicity.
Of the 202 patients initially identified, 114 met inclusion criteria, of whom 95 were enrolled on hospice. Patient race/ethnicity was significantly associated with hospice enrollment (P = 0.02), the association remained significant (P = 0.024) after controlling for payor status (P = 0.995), patient diagnosis (P = 0.007), or religion (P = 0.921). Latinos enrolled on hospice significantly more often than patients of other races. Despite initial enrollment on hospice however, 34% of Latinos and 50% of non-Latinos had withdrawn from hospice at the time of death (P = 0.10). Race/ethnicity was not significantly associated with dying on hospice.
These results indicate that race/ethnicity and diagnosis are likely to play a role in hospice enrollment during childhood. A striking number of patients of all race/ethnicities left hospice prior to death. More studies describing the impact of culture on end of life decision-making and the hospice experience in childhood are warranted. Pediatr Blood Cancer 2013;60:1662–1666.
Objective:
Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families.
Method:
Twenty-one qualitative and survey-based studies published between 2000 and 2010 that met the selection criteria were retrieved from MEDLINE, PsycINFO, and CINAHL. All studies reported on the needs of patients and families receiving pediatric palliative and end-of-life care--from either the patient's, parent's, sibling's, or health care provider's perspective. Findings from these studies were aggregated using a metasummary technique.
Results:
Findings were extracted and grouped into the following 10 thematic domains pertaining to patient and family needs: interactions with staff, health care delivery and accessibility, information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, sibling's needs, and decision making.
Conclusions:
The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.
Purpose:
To describe parents' perspectives of health care provider actions that helped or did not around the time of infant/child's intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified.
Findings:
What helped most: compassionate, sensitive staff; understandable explanations of infant's/child's condition; experienced, competent nurses; providers did everything to help infant/child; and parents' involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child's disease, care, complications.
Conclusions:
Compassionate, sensitive staff and understandable explanations of children's conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.
More than 9 million Latino children currently live in the United States. Latinos will soon be the largest minority group in the country, but little is known about access barriers to health care faced by Latino children. We reviewed the literature to define specific barriers to care for Latino children, identify methodologic problems, and highlight the clinical and research implications of the identified barriers.
We did a MEDLINE search, using combinations of the key words Hispanic, children, and access. Study exclusion criteria included "not an original research article," "enrolled only adult subjects," "no separate data analysis for children," and "dental care focus."
The search yielded 497 citations, of which 27 met the inclusion criteria. Of the 32 potential barriers identified, 21 had good supportive evidence. Lack of health insurance was a consistent barrier; recent data revealed that 26% of Latino children are uninsured, compared with 10% of white children and 14% of African-American children. Latino children also are at greater risk for episodic insurance coverage, low rates of private insurance, and loss of employee-based coverage. Parent beliefs about the etiology and treatment of their child's illness, use of home remedies, choice of sources of advice, and folk medicine practices may also influence how health care is obtained. Few data are available on differences in access among major Latino subpopulations, and no studies focused primarily on barriers as perceived by Latino parents. Evidence is equivocal or lacking that the following are barriers for Latino children: immigration status, duration of parent residency in the United States, and acculturation. Several barriers were identified that originate with practices and behaviors of health care providers, including reduced screening, missed vaccination opportunities, decreased likelihood of receiving prescriptions, and poor communication.
Lack of health insurance and lack of a regular source of care are major access barriers for Latino children, but many other barriers were identified that also can have a substantial effect on health care. In addition, the behaviors and practices of both health care providers and parents can affect access to care. Too little is known about what parents perceive to be the major barriers, access differences among Latino subpopulations, the roles of language and culture, and the causes of obstacles resulting from the actions of providers.
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.
Latinos recently became the largest racial/ethnic minority group of US children. The Latino Consortium of the American Academy of Pediatrics Center for Child Health Research, consisting of 13 expert panelists, identified the most important urgent priorities and unanswered questions in Latino child health. Conclusions were drawn when consensus was reached among members, with refinement through multiple iterations. A consensus statement with supporting references was drafted and revised. This article summarizes the key issues, including lack of validated research instruments, frequent unjustified exclusion from studies, and failure to analyze data by pertinent subgroups. Latino children are at high risk for behavioral and developmental disorders, and there are many unanswered questions about their mental health needs and use of services. The prevalence of dental caries is disproportionately higher for Latino children, but the reasons for this disparity are unclear. Culture and language can profoundly affect Latino children's health, but not enough cultural competency training of health care professionals and provision of linguistically appropriate care occur. Latinos are underrepresented at every level of the health care professions. Latino children are at high risk for school dropout, environmental hazards, obesity, diabetes mellitus, asthma, lack of health insurance, nonfinancial barriers to health care access, and impaired quality of care, but many key questions in these areas remain unanswered. This article suggests areas in which more research is needed and ways to improve research and care of Latino children.
Using a collective case study ethnographic approach, nine individuals comprising three Mexican American families were interviewed about their family bereavement experiences after the death of a child. All families were Catholic, had surviving siblings, and had had three or more years to grieve their loss when interviewed. The deceased children ranged in age from 3 to 14, and all experienced sudden, traumatic, nonsuicide deaths. To provide a broader, contextual picture of their grief experiences, four individuals who supported these family members after the loss were also interviewed. Unique grief experiences were identified, and eight common themes emerged, reflecting the ways in which family members maintained their bond to the deceased: dreams, storytelling, keepsakes, sense of presence, faith-based connections, proximity connections, ongoing rituals, and pictorial remembrances. The cultural implications of family bereavement are highlighted.
Latino children experience a higher prevalence of caries than do children in any other racial/ethnic group in the US. This paper examines the intersections among four societal sectors or contexts of care which contribute to oral health disparities for low-income, preschool Latino1 children in rural California.
Findings are reported from an ethnographic investigation, conducted in 2005-2006, of family, community, professional/dental and policy/regulatory sectors or contexts of care that play central roles in creating or sustaining low income, rural children's poor oral health status. The study community of around 9,000 people, predominantly of Mexican-American origin, was located in California's agricultural Central Valley. Observations in homes, community facilities, and dental offices within the region were supplemented by in-depth interviews with 30 key informants (such as dental professionals, health educators, child welfare agents, clinic administrators and regulatory agents) and 47 primary caregivers (mothers) of children at least one of whom was under 6 years of age.
Caregivers did not always recognize visible signs of caries among their children, nor respond quickly unless children also complained of pain. Fluctuating seasonal eligibility for public health insurance intersected with limited community infrastructure and civic amenities, including lack of public transportation, to create difficulties in access to care. The non-fluoridated municipal water supply is not widely consumed because of fears about pesticide pollution. If the dentist brought children into the clinic for multiple visits, this caused the accompanying parent hardship and occasionally resulted in the loss of his or her job. Few general dentists had received specific training in how to handle young patients. Children's dental fear and poor provider-parent communication were exacerbated by a scarcity of dentists willing to serve rural low-income populations. Stringent state fiscal reimbursement policies further complicated the situation.
Several societal sectors or contexts of care significantly intersected to produce or sustain poor oral health care for children. Parental beliefs and practices, leading for example to delay in seeking care, were compounded by lack of key community or economic resources, and the organization and delivery of professional dental services. In the context of state-mandated policies and procedures, these all worked to militate against children receiving timely care that would considerably reduce oral health disparities among this highly disadvantaged population.
As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.
Researchers increasingly include multicultural respondents in qualitative research studies. The grounded theory method, a currently popular qualitative methodology, seeks to interpret data for theory development. However, analysis of respondents from a culture(s) significantly different from the researcher's culture requires special attention to methodological issues. Requirements for conducting a grounded theory analysis with respondents from varying cultural orientations include personal or professional experience in the respondent's culture, professional literature of the respondent's culture around the phenomenon of interest, data analysis conducted in the language of the respondents, and a constant comparison of emerging concepts from the cultural perspective of the respondents. Only by attending to the cultures of the respondents and of the researchers can the social sciences create sufficiently rich inductively derived grounded theory.
In our chapter in the first edition of this Handbook (see record
1994-98625-005), we presented two tables that summarized our positions, first, on the axiomatic nature of paradigms (the paradigms we considered at that time were positivism, postpositivism, critical theory, and constructivism, p. 109, Table 6.1); and second, on the issues we believed were most fundamental to differentiating the four paradigms (p. 112, Table 6.2). These tables are reproduced here as a way of reminding our readers of our previous statements. The axioms defined the ontological, epistemological, and methodological bases for both established and emergent paradigms. The issues most often in contention that we examined were inquiry aim, nature of knowledge, the way knowledge is accumulated, goodness (rigor and validity) or quality criteria, values, ethics, voice, training, accommodation, and hegemony. An examination of these two tables will reacquaint the reader with our original Handbook treatment. Since publication of that chapter, at least one set of authors, J. Heron and P. Reason, have elaborated on our tables to include the participatory/cooperative paradigm (Heron, 1996; Heron & Reason, 1997, pp. 289-290). Thus, in addition to the paradigms of positivism, postpositivism, critical theory, and constructivism, we add the participatory paradigm in the present chapter (this is an excellent example, we might add, of the hermeneutic elaboration so embedded in our own view, constructivism). Our aim here is to extend the analysis further by building on Heron and Reason's additions and by rearranging the issues to reflect current thought. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Recent publications have suggested that research with diverse ethnic groups requires a reexamination of the methods and measures that have been developed on European-American samples. This is a methodological paper, sharing the lessons learned in the field by one research team. It reports on a study of persons with type 2 diabetes and their partners that included both Latino and European-American participants. Involvement of a multiethnic research team, the willingness to be flexible, and a healthy skepticism about our current methods are among the suggestions that emerge. More specifically, the article addresses such topics as the establishment of trust in the participants, language and meaning, the practical implications of cultural values, and the impact of social class on procedures. © 2002 Wiley Periodicals, Inc.
The agricultural economy in the United States has relied heavily on migrant farmworkers and, in particular, on Latinos. However, migrant families remain one of the most disadvantaged groups in the United States. This research focuses on a subsample of migrant families of Mexican origin (n= 13), who participated in the Rural Families Speak multistate study. Qualitative findings described numerous challenges that Mexican-origin migrant families continue to experience. Results were also illustrative of the resilience of migrant families, which is influenced by specific Latino cultural values and is reflected in the successful adaptation of these families to the challenges associated with a migrant lifestyle.
In a study of extended familism among Mexican Americans and Anglo Americans in three southern California cities, the Mexican Americans were found to have more kin in town, more frequent interaction with nearby relatives, and more exchange of mutual aid with kin. There is no indication that the traditional Mexican-American extended family breaks down with urbanization, acculturation, or socioeconomic mobility. It is suggested that discrimination by the Anglo majority reinforces kin ties among Mexican Americans.
If we return to Alan's situation, it was clear that the difficult decision to discontinue aggressive treatment had been made. This decision was based on the uncertainty about benefit. Alan had reached the maximum amount of radiation and there was still active disease present. He had become increasingly resistant to, and was not responding to, treatment. Yet, some team members did not identify him as requiring palliative care. Their perception was based on their subjective impressions of the child's and the mother's conditions. The incongruity between their subjective impressions and the other criteria for determining palliative status could have been heeded as a signal of potential distress, uncertainty, or confusion, and a need for further discussion and clarification of the issues. Nurses caring for terminally ill children who experienced similar incongruencies reported that the resultant distress was best managed through open discussion with their colleagues (7). A major concern exists for the children and families receiving palliative care when there are discrepancies among staff perceptions of the situation. If the staff are confused, then it is likely that the recipients of their care will receive inconsistent and confusing messages from the members of the care team. The successful transition to palliative care as well as thorough palliative care itself depends on doctors, nurses, social workers, psychologists, parents, and children all accepting that the philosophy of care should change. There must be consensus about the overall goals of management and the desirability of specific interventions as the child's condition deteriorates. Collaborative decision making and optimal adjustment can be facilitated by open and honest communication among parents, child, and staff. The most critical aspect is creating a milieu in which each person's view is respected and which allows everyone to talk openly about the fact that cure is no longer possible. If providers are willing to undertake the emotionally challenging tasks of acknowledging that the child is terminally ill, of not avoiding sensitive issues with parents, and of communicating openly and respectfully with each other, they will be able to determine with a reasonable degree of certainty which children need palliative care. This decision is important for sensitive care, treatment, and research.
Clinics that primarily see members of ethnic minority groups have been found to provide inadequate treatment of cancer-related pain. The extent of undertreatment of pain in these patients and the factors that contribute to undertreatment are not known.
To evaluate the severity of cancer-related pain and the adequacy of prescribed analgesics in minority outpatients with cancer.
Prospective clinical study.
Eastern Cooperative Oncology Group.
281 minority outpatients with recurrent or metastatic cancer.
Patients and physicians independently rated severity of pain, pain-related functional impairment, and pain relief obtained by taking analgesic drugs. Analgesic adequacy was determined on the basis of accepted guidelines.
77% of patients reported disease-related pain or took analgesics; 41% of patients reporting pain had severe pain. Sixty-five percent of minority patients did not receive guideline-recommended analgesic prescriptions compared with 50% of non-minority patients (P < 0.001). Hispanic patients in particular reported less pain relief and had less adequate analgesia.
The awareness that minority patients do not receive adequate pain control and that better assessment of pain is needed may improve control of cancer-related pain in this patient population.
The goals of the current studies were: 1) to determine the pain treatment needs of socioeconomically disadvantaged African-American and Hispanic patients with recurrent or metastatic cancer and 2) to assess the attitudes of health care professionals who treat them.
In the first study 108 African-American and Hispanic patients with metastatic or recurrent cancer and pain completed a survey about their pain intensity, pain interference, and attitudes toward analgesic medications. Physicians also rated their patients' pain and the adequacy of the patients' current analgesic prescriptions was assessed. In the second study 55 physicians and nurses who treat these patients completed a questionnaire regarding cancer pain and its management in their practice settings.
Approximately 28% of the Hispanic and 31% of the African-American patients received analgesics of insufficient strength to manage their pain. Although the majority of patients received appropriate analgesics, 65% reported severe pain. Physicians underestimated pain severity for 64% of the Hispanic and 74% of the African-American patients. Physicians were more likely to underestimate the pain severity of female patients than male patients. Inadequate pain assessment, patient reluctance to report pain, and lack of staff time were perceived as barriers to pain management.
Although the data suggest recent improvements in analgesic prescribing practices for African-American and Hispanic cancer patients, the majority of patients reported high levels of pain and limited pain relief from analgesic medications. Inadequate pain assessment remains a major barrier to optimal cancer pain treatment.
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.
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.
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.
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.
Since the Nazi medical experiments in Europe and the Tuskegee Syphilis Study in the United States, members of ethnic groups have been reluctant to participate in research. However, a National Institutes of Health policy mandates that researchers develop and implement strategies to insure the inclusion of women and minorities as subjects in clinical investigations. The purpose of this paper is to discuss methods found to be effective in recruiting and retaining members of ethnic groups as participants in three research projects. The three studies were: (a) Gambling Behaviors in African American Elders and Perceived Effects on Health, (b) Adolescent Risk Behavior, Self Esteem, and Social Influence: Comparison of Dominican Youth in Their Homeland and in the United States, and (c) A Multicultural Study of Support for Alzheimer's Caregivers.
This article presents a summary of an earlier monograph on the recruitment and retention of older ethnic minority individuals.
The authors provide an overview of recruitment and retention efforts made by six National Institutes of Health Office of Minority Research/National Institute on Aging-funded Centers on Minority Aging and Health Promotion. We rely on a model that focuses on barriers and enablers to recruitment that stem from the minority community as well as the research community.
The summary of findings suggests that recruitment and retention success occurs when there is a match between the goals of the ethnic minority communities and the research community.
Recognizing and understanding the culture of each ethnic minority community as well the research perspectives is essential to successful recruitment and retention of ethnic minority elderly individuals.
Migrant attackers sentenced. San Diego Union-Tribune, pp. B1, B4. Mexican American Families and Pediatric Palliative Care 203 Downloaded by
- G Moran
Moran, G. (2002, June 27). Migrant attackers sentenced. San Diego Union-Tribune, pp. B1, B4. Mexican American Families and Pediatric Palliative Care 203 Downloaded by [McGill University Library] at 10:36 19 November 2014
Quality of health care for Hispanic populations: Findings from the Commonwealth Fund Health Care Quality Survey (Publication No. 526)
- M M Doty
- B L Ives
Doty, M. M., & Ives, B. L. (2001). Quality of health care for Hispanic populations: Findings from the Commonwealth Fund Health Care Quality Survey (Publication No. 526). New York: The Commonwealth Fund.
United States Census Families with Latino roots
- U S Bureau
U.S. Census Bureau. (n.d.). United States Census 2000. Retrieved December 1, 2008, from http://www.census.gov/main/www/cen2000.html Zuniga, M. (1998). Families with Latino roots. In E. Lynch, & M. Hanson (Eds.), Developing cross-cultural competence (pp. 209–245). Baltimore: Paul Brookes. 204 N. Contro et al. Downloaded by [McGill University Library] at 10:36 19 November 2014
Memorializing border crossers
- L Sanchez
Sanchez, L. (2002, June 24). Memorializing border crossers. San Diego Union-Tribune, pp. B1, B4.