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1.
Inj Epidemiol ; 8(Suppl 2): 72, 2024 Mar 19.
Article in English | MEDLINE | ID: mdl-38504377

ABSTRACT

BACKGROUND: Violence is a serious public health concern disproportionately experienced by American Indian and Alaska Native (AIAN) people. While the burden and impact of violence may be explained by the presence of risk factors among this group, AIAN communities benefit from unique protective factors and universal strategies which may be tailored with tribal adaptations. We sought to identify and explore violence prevention strategies specific to AIAN populations. METHODS: A review was conducted to systematically identify violence prevention programs, policies, and practices implemented in AIAN communities. We searched nine electronic databases and relevant gray literature released between January 1980 and June 2018. We included intervention-focused records targeting at least one violence topic area (child abuse/neglect, elder abuse, intimate partner violence, sexual violence, youth violence, and suicide) in a majority (> 50%) AIAN population. RESULTS: A total of 5220 non-duplicate records were screened, yielding 318 full-text records. After applying exclusion criteria, 57 records describing 60 program, policy, or practice implementations of 43 unique interventions were identified. All six violence types were represented, although more than half (58%; n = 25/43) focused on suicide prevention. Among suicide prevention programs, the most common strategies were identifying and supporting people at risk (80%; n = 20), teaching coping and problem-solving skills (56%; n = 14), and promoting connectedness (48%; n = 12). Two-thirds of the implementations (67%; n = 40/60) were in fully (100%) AIAN communities. Programs were implemented across many settings, though schools were the most common (35%, n = 21/60) setting. Of the 60 total implementations, a majority (80%; n = 48) were new approaches developed by and for AIAN communities, while the remainder were AIAN adaptations of programs previously created for non-AIAN populations. Most implementations (60%; n = 36/60) provided some evaluation data although less than half (45%; n = 27/60) reported evaluation results. CONCLUSIONS: This review identified many violence prevention strategies specific to AIAN populations. While programs developed in one tribe may not be completely generalizable to others, shared tribal risk and protective factors suggest programs could be successful across diverse communities. Findings indicate there is a need to develop and evaluate violence prevention programs, policies and practices for AIAN populations.

2.
J Health Care Poor Underserved ; 33(3): 1245-1257, 2022.
Article in English | MEDLINE | ID: mdl-36245161

ABSTRACT

OBJECTIVES: To examine the impact of racial/ethnic coding strategies on the estimated prevalence of risk behaviors among American Indian/Alaska Native (AI/AN) high school students. METHODS: Data from the national Youth Risk Behavior Survey (2017 and 2019) were analyzed (N=28,422). Racial/ethnic data were coded to identify "Multiracial/ethnic AI/AN students" and "AI/AN alone students." The prevalence of persistent feelings of sadness or hopelessness, suicidality, and violence victimization were compared across the coding schemes and with non-Hispanic White students. RESULTS: Of students who selfidentified as AI/AN, one in six (18%) were AI/AN alone. The prevalence of many health risk behaviors was significantly higher among AI/AN students than non-Hispanic/Latino White students. The precision of the risk behavior prevalence estimates, however, varied considerably. CONCLUSION: How racial/ethnic data were coded affected the precision of calculations of risk behavior prevalence among AI/AN students, who are often multiracial and of Hispanic/Latino ethnicity.


Subject(s)
Indians, North American , Adolescent , Ethnicity , Humans , Racial Groups , Risk-Taking , Students , United States/epidemiology
3.
Dep Justice J Fed Law Pract ; 69(2): 149-188, 2021 Mar.
Article in English | MEDLINE | ID: mdl-34734212

ABSTRACT

Violence against American Indian and Alaska Native (AIAN) women, children, two-spirit individuals,1 men, and elders is a serious public health issue. Violence may result in death (homicide), and exposure to violence has lasting effects on the physical and mental health of individuals, including depression and anxiety, substance abuse, chronic and infectious diseases, and life opportunities, such as educational attainment and employment. All communities are affected by some form of violence, but some are at an increased risk because of intergenerational, structural, and social factors that influence the conditions in communities where people live, learn, work, and play. Using a violence prevention public health approach, we discuss the role public health can play in addressing and preventing the prevalence of missing or murdered indigenous persons (MMIP).2 This paper is written as a public health primer and includes a selective overview of public health and Native public health research. It also includes case studies and Native experts' reflections and suggestions regarding the use of public health knowledge and theory, as well as Native knowledge and cultural practices to combat violence. An effective public health prevention approach is facilitated by complex, contextual knowledge of communities and people, including individual and community risk factors, as well as protective factors in strengthening Native communities and preventing MMIP. Public health promotes and protects the health of people and the communities where they live, learn, work, and play. To prevent violence, public health seeks to create safe, stable, and nurturing relationships and environments for all people. MMIP affects communities, families, and loved ones, and its victims may be women and girls, children, men, two-spirit individuals, and elders. Violence is defined as "the intentional use of physical force or power, threatened or actual, against oneself, another person, or against a group or community, that either results in or has a high likelihood of resulting in injury, death, psychological harm, maldevelopment, or deprivation."3 Violence, including adverse childhood experiences (ACEs), has a lasting impact on health, spanning injury, disease outcomes, risk behaviors, maternal and child health, mental health problems, and death.4 This paper serves as a public health primer to prevent MMIP. MMIP context is provided by weaving public health, research, and applied examples from AIAN experts, best practices in public health, and legal approaches using traditional wisdom and culture. Woven throughout the text, author perspectives are provided as applied examples to contextualize and complement the topics raised based on the individual experiences of several authors.

4.
MMWR Surveill Summ ; 70(8): 1-19, 2021 11 19.
Article in English | MEDLINE | ID: mdl-34793415

ABSTRACT

PROBLEM/CONDITION: Homicide is a leading cause of death for American Indians/Alaska Natives (AI/ANs). Intimate partner violence (IPV) contributes to many homicides, particularly among AI/AN females. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) on AI/AN homicides. Results include victim and suspect sex, age group, and race/ethnicity; method of injury; type of location where the homicide occurred; precipitating circumstances (i.e., events that contributed to the homicide); and other selected characteristics. PERIOD COVERED: 2003-2018. DESCRIPTION OF SYSTEM: NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, and law enforcement reports and links related deaths (e.g., multiple homicides and homicide followed by suicide) into a single incident. This report includes data on AI/AN homicides that were collected from 34 states (Alabama, Alaska, Arizona, California, Colorado, Georgia, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, Nevada, New Jersey, New Mexico, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, Utah, Virginia, Washington, and Wisconsin) and the District of Columbia. RESULTS: NVDRS collected data on 2,226 homicides of AI/ANs in 34 states and the District of Columbia during 2003-2018. The age-adjusted AI/AN homicide rate was 8.0 per 100,000 population. The homicide rate was three times higher in AI/AN males than females (12.0 versus 3.9), and the median age of AI/AN victims was 32 years (interquartile range: 23-44 years). Approximately half of AI/AN homicide victims lived or were killed in metropolitan areas (48.2% and 52.7%, respectively). A firearm was used in nearly half (48.4%) of homicides and in a higher percentage of homicides of AI/AN males than females (51.5% versus 39.1%). More AI/AN females than males were killed in a house or apartment (61.8% versus 53.7%) or in their own home (47.7% versus 29.0%). Suspects were identified in 82.8% of AI/AN homicides. Most suspects were male (80.1%), and nearly one third (32.1%) of suspects were AI/ANs. For AI/AN male victims, the suspect was most often an acquaintance or friend (26.3%), a person known to the victim but the exact nature of the relationship was unclear (12.3%), or a relative (excluding intimate partners) (10.5%). For AI/AN female victims, the suspect was most often a current or former intimate partner (38.4%), an acquaintance or friend (11.5%), or a person known to the victim but the exact nature of the relationship was unclear (7.9%). A crime precipitated 24.6% of AI/AN homicides (i.e., the homicide occurred as the result of another serious crime). More AI/AN males were victims of homicides due to an argument or conflict than females (54.7% versus 37.3%), whereas more AI/AN females were victims of homicides due to IPV than males (45.0% versus 12.1%). For homicides related to IPV, 87.2% of AI/AN female victims were killed by a current or former intimate partner, whereas approximately half (51.5%) of AI/AN male victims were corollary victims (i.e., victims killed during an IPV-related incident who were not the intimate partners themselves). INTERPRETATION: This report provides a detailed summary of NVDRS data on AI/AN homicides during 2003-2018. Interpersonal conflict was a predominant circumstance, with nearly half of all AI/AN homicides precipitated by an argument and for female victims, 45.0% precipitated by IPV. PUBLIC HEALTH ACTION: NVDRS provides critical and ongoing data on AI/AN homicides that can be used to identify effective and early intervention strategies for preventing these deaths. When possible, violence prevention efforts should include community-developed, culturally relevant, and evidence-based strategies. These efforts should incorporate traditional native knowledge and solutions, implement and possibly adapt evidence-based IPV and other violence prevention strategies, and consider the influence of historical and larger societal factors that increase the likelihood of violence in AI/AN communities.


Subject(s)
/statistics & numerical data , American Indian or Alaska Native/statistics & numerical data , Homicide/ethnology , Population Surveillance , Adolescent , Adult , Aged , Child , Child, Preschool , Female , Humans , Infant , Male , Middle Aged , United States/epidemiology , Young Adult
5.
MMWR Morb Mortal Wkly Rep ; 70(37): 1267-1273, 2021 Sep 17.
Article in English | MEDLINE | ID: mdl-34529634

ABSTRACT

Native Hawaiian and Pacific Islander populations have been disproportionately affected by COVID-19 (1-3). Native Hawaiian, Pacific Islander, and Asian populations vary in language; cultural practices; and social, economic, and environmental experiences,† which can affect health outcomes (4).§ However, data from these populations are often aggregated in analyses. Although data aggregation is often used as an approach to increase sample size and statistical power when analyzing data from smaller population groups, it can limit the understanding of disparities among diverse Native Hawaiian, Pacific Islander, and Asian subpopulations¶ (4-7). To assess disparities in COVID-19 outcomes among Native Hawaiian, Pacific Islander, and Asian populations, a disaggregated, descriptive analysis, informed by recommendations from these communities,** was performed using race data from 21,005 COVID-19 cases and 449 COVID-19-associated deaths reported to the Hawaii State Department of Health (HDOH) during March 1, 2020-February 28, 2021.†† In Hawaii, COVID-19 incidence and mortality rates per 100,000 population were 1,477 and 32, respectively during this period. In analyses with race categories that were not mutually exclusive, including persons of one race alone or in combination with one or more races, Pacific Islander persons, who account for 5% of Hawaii's population, represented 22% of COVID-19 cases and deaths (COVID-19 incidence of 7,070 and mortality rate of 150). Native Hawaiian persons experienced an incidence of 1,181 and a mortality rate of 15. Among subcategories of Asian populations, the highest incidences were experienced by Filipino persons (1,247) and Vietnamese persons (1,200). Disaggregating Native Hawaiian, Pacific Islander, and Asian race data can aid in identifying racial disparities among specific subpopulations and highlights the importance of partnering with communities to develop culturally responsive outreach teams§§ and tailored public health interventions and vaccination campaigns to more effectively address health disparities.


Subject(s)
COVID-19/ethnology , Health Status Disparities , Racial Groups/statistics & numerical data , COVID-19/mortality , Community Health Services/organization & administration , Data Interpretation, Statistical , Hawaii/epidemiology , Humans
6.
J Cancer Educ ; 27(1 Suppl): S91-105, 2012 Apr.
Article in English | MEDLINE | ID: mdl-22351428

ABSTRACT

The cost of smoking has been explored for residents of the U.S. living in several states. Recent evidence has indicated that the prevalence and cost of smoking are associated with racial and ethnic groups. This study provides information on tobacco prevention and control for American Indians (AI) (American Indians refers to American Indians and Alaska Natives throughout this article. Where we use the term California tribe we specifically mean persons who are members of Indigenous tribes geographically located in the geographic area now known as the state of California.) and examines the relative impact of smoking by using behavioral and demographic characteristics in order to predict the economic cost on AIs. The analysis suggests that AIs smoke more frequently than other Californians, which results in higher health care costs, as well as morbidity and mortality due to high levels of tobacco related chronic disease. Based on these factors we urge tribes to exercise their sovereignty as governments and implement local tobacco control policy strategies. We call for public health action by community leaders in Indian country and nationwide. We must act now to protect future generations.


Subject(s)
Community Health Services/economics , Health Care Costs/statistics & numerical data , Health Policy/economics , Indians, North American/statistics & numerical data , Smoking Cessation/economics , Smoking/economics , Adult , Age Factors , California/epidemiology , Community Health Services/statistics & numerical data , Female , Health Promotion/economics , Health Promotion/methods , Health Status , Humans , Male , Middle Aged , Minority Health/economics , Minority Health/statistics & numerical data , Prevalence , Risk Factors , Risk-Taking , Smoking/epidemiology , Smoking Prevention , Stroke , United States/epidemiology
7.
J Gen Intern Med ; 24(6): 758-64, 2009 Jun.
Article in English | MEDLINE | ID: mdl-19381730

ABSTRACT

BACKGROUND: Many American Indian and Alaska Native veterans are eligible for healthcare from Veterans Health Administration (VHA) and from Indian Health Service (IHS). These organizations executed a Memorandum of Understanding in 2003 to share resources, but little was known about how they collaborated to deliver healthcare. OBJECTIVE: To describe dual use from the stakeholders' perspectives, including incentives that encourage cross-use, which organization's primary care is "primary," and the potential problems and opportunities for care coordination across VHA and IHS. PARTICIPANTS: VHA healthcare staff, IHS healthcare staff and American Indian and Alaska Native veterans. APPROACH: Focus groups were conducted using a semi-structured guide. A software-assisted text analysis was performed using grounded theory to develop analytic categories. MAIN RESULTS: Dual use was driven by variation in institutional resources, leading patients to actively manage health-seeking behaviors and IHS providers to make ad hoc recommendations for veterans to seek care at VHA. IHS was the "primary" primary care for dual users. There was little coordination between VHA and IHS resulting in delays and treatment conflicts, but all stakeholder groups welcomed future collaboration. CONCLUSIONS: Fostering closer alignment between VHA and IHS would reduce care fragmentation and improve accountability for patient care.


Subject(s)
Health Personnel/psychology , Patient Satisfaction , United States Department of Veterans Affairs/statistics & numerical data , United States Indian Health Service/statistics & numerical data , Veterans/psychology , Attitude of Health Personnel , Female , Humans , Male , Middle Aged , United States
8.
Article in English | MEDLINE | ID: mdl-20052630

ABSTRACT

Racial classification is a paramount concern in data collection and analysis for American Indians and Alaska Natives (AI/ANs) and has far-reaching implications in health research. We examine how different racial classifications affect survey weights and consequently change health-related indicators for the AI/AN population in California. Using a very large random population-based sample of AI/ANs, we compared the impact of three weighting strategies on counts and rates of selected health indicators. We found that different weights examined in this study did not change the percentage estimates of health-related variables for AI/ANs, but did influence the population total estimates dramatically. In survey data, different racial classifications and tabulations of AI/ANs could yield discrepancies in weighted estimates for the AI/AN population. Policy makers need to be aware that the choice of racial classification schemes for this racial-political group can generally influence the data they use for decision making.


Subject(s)
Data Collection/methods , Ethnicity/classification , Indians, North American/classification , Inuit/classification , Racial Groups/classification , Adolescent , Adult , Alaska/ethnology , Behavioral Risk Factor Surveillance System , California/ethnology , Censuses , Child , Data Collection/statistics & numerical data , Ethnopsychology/statistics & numerical data , Female , Health Care Surveys/statistics & numerical data , Humans , Indians, North American/statistics & numerical data , Inuit/statistics & numerical data , Male , Politics , Population Groups/classification , Research Design/standards , Surveys and Questionnaires/standards , United States/ethnology
9.
J Cancer Educ ; 21(1 Suppl): S15-21, 2006.
Article in English | MEDLINE | ID: mdl-17020497

ABSTRACT

Background. We used the 2001 California Health Interview Survey (CHIS) to examine differences in cancer care access and utilization by subgroups of American Indian and Alaskan Natives (AIAN). Methods. The CHIS 2001 includes over 55,000 Californian households, with an oversampling of California American Indian, non-California AIAN, and unknown AIAN tribal groups. Results. We found significant differences among the 3 tribal subgroups for various measures of health care coverage and utilization. Conclusions. AIAN must be disaggregated to provide appropriate data for public health and policy making.


Subject(s)
Health Policy , Health Services Accessibility , Health Services/statistics & numerical data , Indians, North American/statistics & numerical data , Adolescent , Adult , Aged , Alaska , California , Child , Child, Preschool , Educational Status , Female , Health Services Accessibility/statistics & numerical data , Health Status , Health Surveys , Humans , Infant , Infant, Newborn , Interviews as Topic , Male , Middle Aged , Neoplasms/ethnology , Neoplasms/nursing , Social Class
10.
Am J Public Health ; 96(2): 340-50, 2006 Feb.
Article in English | MEDLINE | ID: mdl-16380573

ABSTRACT

OBJECTIVES: We examined cancer screening and risk factor patterns in California using 4 different statistical tabulations of American Indian and Alaska Native (AIAN) populations. METHODS: We used the 2001 California Health Interview Survey to compare cancer screening and risk factor data across 4 different tabulation approaches. We calculated weighted prevalence estimates by gender and race/ethnicity for cancer screening and risk factors, sociodemographic characteristics, and access to care variables. We compared AIAN men and women with members of other racial groups and examined outcomes among AIAN men and women using the 4 tabulation methods. RESULTS: Although some differences were small, in general, screening and risk factor rates among American Indians/Alaska Natives were most similar to rates among Whites when the most inclusive multiracial tabulation approach was used and least similar when the more exclusive US census "single-race" approach was used. CONCLUSIONS: Racial misclassification and undercounting are among the most difficult obstacles to obtaining accurate and informative data on the AIAN population. Our analysis suggests some guidelines for overcoming these obstacles.


Subject(s)
Indians, North American , Mass Screening , Neoplasms/epidemiology , California/epidemiology , Female , Humans , Male , Middle Aged , Neoplasms/ethnology , Prevalence , Risk Factors
11.
J Cancer Educ ; 20(1 Suppl): 58-64, 2005.
Article in English | MEDLINE | ID: mdl-15916523

ABSTRACT

BACKGROUND AND METHODS: The purpose of this article was to examine differences in demographics, general health status, and utilization of breast and cervical cancer screening for subgroups of American Indians and Alaska Natives (AIAN) using the 2001 California Health Interview Survey. RESULTS: The statewide distribution of California American Indians, non-California AIANs, and unknown AIANs are 10%, 51%, and 39%, respectively. Significant differences exist among the 3 tribal subgroups. CONCLUSIONS: Overall, AIAN women aged 40+ years are close to the Healthy People 2010 goals for receipt of a mammogram in the past 2 years and for receipt of a Pap test ever and in the past 3 years. Less than 5% of AIAN in California report Indian Health Service coverage.


Subject(s)
Breast Neoplasms/ethnology , Indians, North American , Inuit , Mass Screening/statistics & numerical data , Uterine Cervical Neoplasms/ethnology , Adolescent , Adult , Aged , Breast Neoplasms/diagnosis , Breast Neoplasms/prevention & control , California , Female , Health Behavior/ethnology , Health Services Accessibility , Health Status , Humans , Male , Mammography/statistics & numerical data , Middle Aged , Uterine Cervical Neoplasms/diagnosis , Uterine Cervical Neoplasms/prevention & control , Vaginal Smears/statistics & numerical data
12.
J Cancer Educ ; 20(1): 49-51, 2005.
Article in English | MEDLINE | ID: mdl-15876183

ABSTRACT

Background. California is home to the largest number of American Indians in the United States, including large numbers of residents who are from tribes outside of the state, in addition to Alaska Natives. In 2000 to 2001, the California Health Interview Survey randomly surveyed, by telephone, approximately 54,122 households throughout the state, focusing on public health and access to health care. Methods. American Indian and Alaska Native cultural competency training materials were developed for the data collection interviewers. Unique cultural and linguistic issues identified were (1) reservation dialect English, (2) the long pause, (3) slow speaking, (4) "walking on words," and (5) a brief review of the importance of collecting tribal heritage information. Conclusions. Since the successful implementation of the competency training, several researchers, practitioners, state agencies, and others have requested and implemented the training materials in their work. In this article, we review the training materials. We hope that these few tips will help others have successful experiences communicating respectfully with American Indian and Alaska Natives.


Subject(s)
Communication Barriers , Indians, North American , Inuit , Public Health Administration/education , Alaska , California , Cultural Characteristics , Health Care Surveys , Humans
13.
Public Health Rep ; 119(4): 388-95, 2004.
Article in English | MEDLINE | ID: mdl-15219795

ABSTRACT

The cultural and linguistic diversity of the U.S. population presents challenges to the design and implementation of population-based surveys that serve to inform public policies. Information derived from such surveys may be less than representative if groups with limited or no English language skills are not included. The California Health Interview Survey (CHIS), first administered in 2001, is a population-based health survey of more than 55,000 California households. This article describes the process that the designers of CHIS 2001 underwent in culturally adapting the survey and translating it into an unprecedented number of languages: Spanish, Chinese, Vietnamese, Korean, and Khmer. The multiethnic and multilingual CHIS 2001 illustrates the importance of cultural and linguistic adaptation in raising the quality of population-based surveys, especially when the populations they intend to represent are as diverse as California's.


Subject(s)
Ethnicity , Health Surveys , Interviews as Topic/standards , Surveys and Questionnaires/standards , Translating , Adolescent , Adult , Black or African American , Asian , Bias , California , Child , Communication Barriers , Cultural Diversity , Feasibility Studies , Focus Groups , Hispanic or Latino , Humans , Indians, North American , Multilingualism , Psychometrics , Telephone , Time Factors , White People
14.
Arch Dis Child ; 66(11): 1309-14, 1991 Nov.
Article in English | MEDLINE | ID: mdl-1755644

ABSTRACT

Antenatal inquiry of 658 parents in the North Staffordshire District Health Authority showed at least 13% to lack knowledge about a baby's potential for personal interaction when under 1 week old. Mothers and fathers varied significantly, independent of parity. Experienced parents expected later smiles. Two hundred and seventy eight of the same families were questioned three to four months after birth. Most parents had observed their baby's early responsiveness. Specific responses (Looking, listening) were noted earlier when anticipated and looked for. Significant among postnatal non-responders was their antenatal selection of predominantly impersonal stimulation for a baby. The greatest degree of warmth noted in postnatal observations correlated notably with a father's antenatal interest and postnatal support from him and their friends, a mother's commitment to breast feeding and her knowledge that a very young baby can see, like faces, and cries for emotional reasons. This highlights areas for antenatal tuition and postnatal encouragement, aiming to enhance warm early mutual regard between parents and child.


Subject(s)
Infant, Newborn/psychology , Maternal Behavior , Parent-Child Relations , Paternal Behavior , Adolescent , Adult , Age Factors , Father-Child Relations , Female , Follow-Up Studies , Humans , Male , Mother-Child Relations , Parenting/psychology , Social Class
15.
Dev Med Child Neurol Suppl ; 61: 1-58, 1990 Aug.
Article in English | MEDLINE | ID: mdl-1698678

ABSTRACT

Looking back over the span of years surveyed, it appears that a sad experience, even many years ago, commonly leaves residual pain. This can be modified by sympathetic support enabling parents and baby to interact, although such interaction is not without painful as well as pleasurable effects. Coming to terms with loss may take longer than was previously thought. This study highlights the need for bereavement care, which aims to leave families with positive rather than negative feelings. Perhaps, for mental health, the eventual feelings about past happenings are more important than the happenings themselves, although we have also shown that a greater insight into the needs of parents at the time modified their long-term feelings for the good, some even indicating that they had been enriched by the whole experience. The interviews suggested that parents who were involved with their baby's care were more able to accept the reality of their loss and to adjust to the experience of pain and grief than was possible for those who had been kept apart from their children. This supports conclusions by other grief counsellors (e.g. Warden 1983).


Subject(s)
Grief , Love , Palliative Care/psychology , Parents/psychology , Spinal Dysraphism/psychology , Terminal Care/psychology , Adaptation, Psychological , Female , Home Nursing/psychology , Humans , Infant , Infant, Newborn , Male , Parent-Child Relations , Social Support , Spina Bifida Cystica/psychology , Spinal Dysraphism/therapy
16.
BMJ ; 297(6658): 1230-3, 1988 Nov 12.
Article in English | MEDLINE | ID: mdl-2462949

ABSTRACT

From 1971 to 1981, 98 babies born with meningomyelocoele at the North Staffordshire Hospital Centre's district maternity hospital, were thought not suitable for surgery. Sixty three survived for more than one week. Over the period the hospital's policy changed: initially all such babies were kept in hospital, but later parents were given the choice of taking their baby home for palliative and terminal care. In an attempt to determine parents' views on the care of their baby the parents of 44 of the babies who survived to one week were traced in 1985-6, five to 14 years later; 80 of them were asked how they felt about the lives and deaths of their babies. Eighteen babies had been taken home, and they had lived longer than the 26 who had been cared for in hospital. Parents whose baby had remained in hospital were sadder than those who had taken their baby home when they looked back at their experiences, and they also considered that their baby's life had been of poor quality. Most of those who had taken their baby home had a more positive view of their child's life. The figures suggest that the bereavement process after a baby's death is longer than has been thought, but despite residual sadness just over half of the parents interviewed thought that something positive had come out of their experience.


Subject(s)
Attitude to Health , Home Care Services , Hospitalization , Meningomyelocele/psychology , Parents/psychology , Disclosure , Grief , Humans , Infant, Newborn , Meningomyelocele/therapy , Palliative Care/psychology , Quality of Life , Social Support , Terminal Care/psychology
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