Client satisfaction with developmental disabilities services

Data from a representative sample of 312 developmentally disabled clients of Florida's Department of Health and Rehabilitative Services are analyzed to discover the characteristics of the clients and to determine the extent to which the clients are satisfied with various services, reasons for any dissatisfaction that exists, and the factors which are related to satisfaction with services. Clients are least likely to be satisfied with the caregiver support services and the vocational and rehabilitative services they receive. Across all categories, reasons most often given for dissatisfaction with services are inappropriateness and insufficient amount. The factors most strongly related to client satisfaction with services are age, living arrangements, and number of services received. Adolescents are less likely than persons at other ages to be satisfied with the services they receive, persons living in a family setting are less likely than persons in nonfamily settings to be satisfied with services, and the greater the number of services received the lower the likelihood of client satisfaction. Combined with information showing that most of the clients have multiple disabilities, these data suggest that the service delivery system does a better job of delivering some services than others. A slot oriented program such as that in Florida may pay insufficient attention to the existence of multiple needs among persons who are developmentally disabled and to providing services to the networks which form the client's economic and social support system.     

Living arrangements of older malaysians: Who coresides with their adult children?

More than two-thirds of Malaysians age 60 or older coreside with an adult child. Data from the Senior sample of the Second Malaysian Family Life Survey (MFLS-2) are used to investigate which “seniors” (persons age 60 or older) live in this way. The analysis generally supports the notion that coresidence is influenced by the benefits, costs, opportunities, and preferences for coresidence versus separate living arrangements. For example, married seniors are more likely to coreside with adult children when housing costs are greater in their area or when the husband or wife is in poor health. This finding suggests that married parents and children live together to economize on living costs or to receive help with household services. Unmarried seniors who are better off economically are less likely to live with adult children, presumably because they use their higher incomes to “purchase privacy.”     

Receiving maternity care during the COVID-19 pandemic: Experiences of women’s partners and support persons

BackgroundIn Australia, the provision of maternity care during the COVID-19 pandemic was significantly altered to limit transmission of the virus. Many hospitals limited face-to-face appointments to only the pregnant woman and restricted the number of support people present during labour, birth, and postnatal visits to one person. How these restrictions were experienced by partners and support persons of childbearing women are unknown.AimTo explore the experiences of partners and support persons of women receiving maternity care during the COVID-19 pandemic.MethodsA two-phased qualitative study including an online survey and interviews. Analysis was undertaken using content analysis.FindingsPartners and support persons experienced a sense of ‘missing out’ from the pregnancy and maternity care experience because of changes in the provision of care during the pandemic. They reported feelings of isolation, psychological distress, and reduced bonding time with babies. Conflicting information and processes within and across maternity services contributed to feelings of uncertainty and a perceived reduction in the quality of care. Partners and support persons were negatively impacted by restrictions on maternity wards, however they also perceived these to be of benefit to women.DiscussionMany partners and support persons were negatively impacted by restrictions in maternity services during the pandemic; strategies to ensure their active involvement in maternity care are needed.ConclusionThis study offers insights from the unique perspective of partners and support people of women receiving maternity care during the pandemic. Policies and processes that exclude partners and support persons need to be reconsidered.     

The role of support person for Ngaanyatjarra women during pregnancy and birth

BackgroundThis study took place in a remote community on the Ngaanyatjarra Lands, Western Australia. Ngaanyatjarra women's cultural practices have been subject to erosion during the past 70 years. Women are now expected to birth hundreds of kilometres from home and, due to financial barriers, without family support. Older women lament their lack of input into, and control of, contemporary birthing services.Research questionIn order to provide culturally appropriate maternity services we asked: What issues would the Ngaanyatjarra women of the community like to see resolved in the area of antenatal and birthing services?Participants and methodsEligible participants were any Ngaanyatjarra women of the study community who had birthed at least once. We utilised a participatory research methodology. 36 women were interviewed.FindingsThis paper discusses one finding related to support for child-bearing women. The role is important in many ways. Ngaanyatjarra women did not traditionally have their support persons with them during labour and birth, nor do they necessarily expect them to be present in current times. Most women do, however, wish to have a support person with them during antenatal checkups and when they travel to town to await birth.ConclusionAboriginal women from remote communities should be able to have a support person with them when they access regional birthing services, but the nature of this role must not be assumed. A culturally appropriate service has input from the community, provides options and respects choices.     

The need for improved emotional support: A pilot online survey of Australian women’s access to healthcare services and support at the time of miscarriage

ProblemWomen need improved emotional support from healthcare professionals following miscarriage.BackgroundSignificant psychological morbidity can result following miscarriage and may be exacerbated by poor support experiences. Women frequently report high levels of dissatisfaction with healthcare support at this time.AimThis study was developed to pilot a survey aimed at exploring women’s access to healthcare services and support at the time of miscarriage.MethodsWomen over 18 years, residing in Australia, who had experienced a miscarriage in the past two years completed a 29-item online survey.FindingsA total of 399 women completed the survey. Two key findings arose: 1) More than half of women (59%) were not offered any information about miscarriage or pregnancy loss support organisations or referral/access to counselling services at the time of miscarriage, despite almost all reporting they would have liked various forms of support from items listed 2) More than half (57%) did not receive follow up care, or emotional support at this time, beyond being asked how they were coping emotionally. Other findings showed 3) Women accessed various healthcare services at the time of miscarriage and 4) Women often saw a general practitioner at the time of miscarriage despite having a private obstetrician.ConclusionThere is clear mismatch between the support women want at the time of miscarriage and the care they receive from healthcare professionals. Despite considerable structural barriers, it seems likely there is scope within healthcare professionals’ usual practice for improved support care through simple measures such as increased acknowledgement, information provision and referral to existing support services.     

Residential independence among older persons: community and individual factors

The objective of this study is to evaluate an expanded version of the resource model of living arrangements among older persons. This expanded model includes community-level measures of geriatric health services and housing market conditions. We employ the first two waves of the National Survey of Families and Households to test static and longitudinal fixed effects models of residential living arrangements. We find that residing in areas with higher levels of geriatric health care services increases the likelihood of residential independence, net of other contextual factors and individual characteristics. Our results show that housing market conditions are not related to levels of or changes in residential independence when control variables are included in the models. The results for the individual-level resource variables show that persons with greater economic resources, more children, and better functional status are better able to maintain independence and are less likely to die or live in a nursing home. This study shows the utility of expanding on micro-level approaches to understanding community living arrangements among older persons. Future investigations should include measures of the policy environment, transportation constraints and opportunities, and a more complete array of indicators of health and social services oriented toward helping elderly persons maintain their independence.     

Negotiating the Intersection of Racial Oppression and Heteronormativity

This qualitative study examines the narratives of seven heterosexual, cisgender individuals who identify both as persons of color and as positively disposed toward LGB and transgender-identified persons. Using psycho-discursive qualitative methodology, the authors will present the narrative strategies taken up by these positively disposed cisgender heterosexuals of color as they attempt to position themselves as supportive of LGB and transgender persons while negotiating the discourse of heteronormativity. The three narrative strategies have been titled differentiation, empathy, and coherence. In addition to mapping the three narrative strategies, the authors also explore why informants may choose certain strategies over others and argue that the intersection of social identities must be considered when attempting to understand social oppression. Implications for the human services fields will be discussed.     

Using administrative data to estimate population displacement and resettlement following a catastrophic U.S. disaster

After a large scale evacuation, authorities need to know the new and frequently changing population distributions in order to meet needs for housing, schools, health care, and other services. This paper reviews literature from the fields of demography and other disciplines to identify available administrative data sets that can form the basis of sound, relevant, and timely county-level population estimates following a catastrophic U.S. event. The most appropriate data to estimate population in damaged counties will be disaster-specific data such as housing damage estimates and FEMA applicant counts initially, and later electric accounts and USPS active residences. In heavily damaged counties, data on electric accounts and USPS active residences may not be consistently collected for many months, during which time sample surveys may be needed. For counties that receive an influx of population, school enrollment data provide the most appropriate basis for population estimates. Population estimates for large, heavily damaged counties are highly uncertain. Sensitivity analysis when using estimates for planning in these areas is recommended. The Census Bureau can build on this research by codifying recommendations to local authorities for developing frequent post-disaster population estimates.     

The potential impact of discrimination fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care

As an exploration of the potential impact of fears of discrimination against GLBTs in long-term health care settings, this study compared perceptions of GLBT persons and heterosexuals. A total of 132 GLBT persons and 187 heterosexuals living in Eastern Washington completed a survey that contained demographic questions and perceptions of discrimination in long-term care settings. Most respondents suspected that staff and residents of care facilities discriminate against GLBTs. GLBT respondents who believed that residents of care facilities are victims of discrimination were more likely to believe that they would have to hide their sexual orientation if admitted to a care facility. GLBT respondents were more likely than heterosexual respondents to believe that GLBTs do not have equal access to health care and social services, that GLBTs residents of care facilities are victims of discrimination, that GLBT sensitivity training programs would benefit staff and residents of care facilities, and that GLBT retirement facilities would be a positive development for older GLBTs. This study is offered as a preliminary investigation of concerns about GLBT discrimination in health care settings, how concerns are expressed, and the implications of those concerns for health care needs.     

A qualitative study of innovations implemented to improve transition of care from maternity to child and family health (CFH) services in Australia

BackgroundThe transition of care (ToC) from maternity services, particularly from midwifery care to child and family health (CFH) nursing services, is a critical time in the support of women as they transition into early parenting. However significant issues in service provision exist, particularly meeting the needs of women with social and emotional health risk factors. These include insufficient resources, poor communication and information transfer, limited interface between private and public health systems and tension around role boundaries. In response some services are implementing strategies to improve the transition of care from maternity to CFH services.AimThis paper describes a range of innovations developed to improve transition of care between maternity and child and family health services and identifies the characteristics common to all innovations.MethodsData reported were collected in phase three of a mixed methods study investigating the feasibility of implementing a national approach to child and family health services in Australia (CHoRUS study). Data were collected from 33 professionals including midwives, child and family health nurses, allied health staff and managers, at seven sites across four Australian states. Data were analysed thematically, guided by Braun and Clarke's six-step process of thematic analysis.FindingsThe range of innovations implemented included those which addressed; information sharing, the efficient use of funding and resources, development of new roles to improve co-ordination of care, the co-location of services and working together. Four of the seven sites implemented innovations that specifically targeted families with additional needs. Successful implementation was dependent on the preliminary work undertaken which required professionals and/or organisations to work collaboratively.ConclusionImproving the transition of care requires co-ordination and collaboration to ensure families are adequately supported. Collaboration between professionals and services facilitated innovative practice and was core to successful change.     

"Katiwala": trustee of community health

The setting up of a medical cooperative in a squatter community in Davao City, Philippines, and the training of women from the community to serve as paramedical health visitors and family planning workers, is described. The clinic charges each family a small fee and sells drugs at cost. The health visitor program was initiated by the poor families themselves to reach those who could not come to the clinic. The 1st groups trained chose the name Kaunaunahang Katiwala ng Kalusugan, or First Trustees of Health, and they are called katiwala for short. Since 1973 about 80 of these women, usually about 30 years of age, with home and family responsibilities, and of low educational background, have bee n trained. The dialogic method of Paolo Fraire of Brazil is used, which focuses on the native intelligence of the student and emphasizes a mutual learning process on the part of both teacher and student. Upon graduation the katiwala take care of minor ailments, refer major problems to the clinic, distribute family planning information, and encourage sanitation and good health practices. The barrios are divided into districts and 2 katiwala assigned to each. They receive some compensation. The program has proved it is possible to train persons with little education to be effective health workers and free physicians and nurses for more serious cases.     

America's elderly

The older population in the US has grown twice as fast as the rest of the population in the last 20 years. This growth is expected to accelerate early in the next century as the large baby boom cohorts move through middle age and become elderly. Today, about 1 in 8 Americans is 65 years of age or older. By 2030, 1 out of every 4 persons will be in older person. Substantial improvements in life expectancy at all ages, particularly at extreme old age, mean that not only will there be a greater proportion of elderly in the population, but the more will be the "oldest-old," over 85. By 2050, they will be more than 1/4 of the population. As people live longer, many are active and healthy well past retirement. However, many individuals living into their 80s have to cope with chronic disabilities affecting their capacity to perform day-to-day activities. Modern medicine has made great inroads against mortality from such illnesses as heart disease and stroke, but has not eliminated all the effects of these diseases. As the population ages, the issues of health care funding and availability, particularly long-term care, increase in importance. Contrary to widespread belief, the elderly are not abandoned by their families to nursing home care. The vast majority--95%--live in the community. Those needing assistance generally receive help from family and friends. This has created a tremendous demand for federal subsidies to support community-based long-term care services. 1/4 of the federal budget is now spent on the elderly--$270 billion in 1986. Medicaid and Medicare are among the government's success stories, but these programs are threatened by their very success. Economists estimate that government expenditures are 3 times greater for the elderly than for children, raising the issue of "intergenerational equity"--how to balance the amount of care society provides to those who have already contributed with what is provided to those who will contribute in the future. The view that the young and old simply compete for fixed resources is misleading. It ignores the interdependence among generations, and the burdens and benefits of intergenerational transfers at all stages of the life course.     

The Potential Impact of Discrimination Fears of Older Gays,Lesbians, Bisexuals and Transgender Individuals Living in Small- to Moderate-Sized Cities on Long-Term Health Care

ABSTRACT

As an exploration of the potential impact of fears of discrimination against GLBTs in long-term health care settings, this study compared perceptions of GLBT persons and heterosexuals. A total of 132 GLBT persons and 187 heterosexuals living in Eastern Washington completed a survey that contained demographic questions and perceptions of discrimination in long-term care settings. Most respondents suspected that staff and residents of care facilities discriminate against GLBTs. GLBT respondents who believed that residents of care facilities are victims of discrimination were more likely to believe that they would have to hide their sexual orientation if admitted to a care facility. GLBT respondents were more likely than heterosexual respondents to believe that GLBTs do not have equal access to health care and social services, that GLBTs residents of care facilities are victims of discrimination, that GLBT sensitivity training programs would benefit staff and residents of care facilities, and that GLBT retirement facilities would be a positive development for older GLBTs. This study is offered as a preliminary investigation of concerns about GLBT discrimination in health care settings, how concerns are expressed, and the implications of those concerns for health care needs.     

Quality of care and family planning drop-outs in Bukidnon province: a survey study

A study was undertaken in the province of Bukidnon in the Philippines to determine the actual percentage of family planning (FP) acceptors who become dropouts, the reasons they drop out, and the factors most strongly associated with this phenomenon. Data were collected through interviews with married women of reproductive age who had been recorded as being a FP acceptor during 1992. The sample size was set at 400 using a probability-proportionate-to-size sampling technique. In examining the extent of the drop-out problem, it was found that the actual FP status of each respondent agreed with the clinic records in 73.4% of cases and that 22% of those thought to be dropouts had actually switched methods. Most of the women who stopped using oral contraceptives said they did so because of side effects. The drop-out problem was most acute among women who were poorer, less educated, and of higher parity. The attitude of a husband towards use of a method was a better predictor of continuation than the wife's attitude. Clients who felt their provider was approachable and friendly were significantly less likely to drop out. Despite the fact that the FP program is modeled on a "cafeteria" approach which provides choices to acceptors, 9.5% of acceptors in this survey claimed they were not offered a choice. Women who received limited information were more likely to become drop-outs. Clients who had to return to clinics frequently for resupply of OCs or condoms were most likely to become drop-outs. While the number of dropouts identified in this study was only half the official estimate for the province, the short time between FP acceptance and the survey may have reduced the number of dropouts. The program implications of these findings are that 1) the occurrence of side effects needs study, 2) groups characterized by high drop-out rates should receive immediate attention, 3) favorable attitudes should be fostered in husbands, 4) women must receive more information on their options, 5) quality of care must be improved, 6) the use of the IUD should be promoted, and 7) resupply procedures should be revised to reduce trips to the clinic.     

Problems in sampling the Native American and Alaska Native populations

Selecting a scientific national sample of Native Americans and Alaska Natives is difficult for at least four reasons: (1) they are a small proportion of the total population, (2) they are not so segregated that geographic oversampling can reach most of the population, (3) criteria for deciding who is a member of the Native American and Alaska Native population are not well defined, and (4) they are so culturally diverse that subclass estimates may be of equal or greater importance than overall estimates. The goal of this paper is to identify key design choices a statistician must face when selecting a sample of these populations, and to discuss alternative strategies. I also provide commentary on sampling plans that have been used for previous surveys, and explain why these plans, while sufficient for the purposes of their particular surveys, do not provide general solutions. Of particular importance is a careful definition of the study population. For example, some studies would focus on the reservation population, others would focus on persons listed on tribal rolls, and still others on persons eligible for coverage by the Indian Health Service. The numbers of persons included in all of these groups is far short of the two million Native Americans and Alaska Natives counted in the 1990 Census. I conclude that there is no sampling strategy that is appropriate for all surveys, but also provide suggestions for certain survey situations.     

Craving closeness: a grounded theory analysis of women's experiences of mothering in the Special Care Nursery

AIM: The aim of the study was to increase knowledge and understanding of how women begin their roles as mothers when their infant is in the neonatal nursery. BACKGROUND: Research is limited into how women experience mothering in contexts such as the neonatal nursery. Consequently many nurses and midwives remain inadequately informed of parents' experiences which we know may have long-term family outcomes. METHOD: This paper presents the overarching synthesis of a grounded theory analysis of data collected from 28 Australian women whose infants were in Special Care Nurseries. It draws together a number of previous publications that have described in detail the categories derived from the analysis that explain the actions, interactions and reactions women engage in as they seek to 'connect' with their infant. Data collection consisted of two in-depth interviews conducted with women, 333h of taped cot side recordings, field notes and interview data collected from 20 nursery staff, 19 of whom were midwives. FINDINGS: Six major categories were identified that, when combined, explained the intense emotional, cognitive and worry 'work' women undertook with both their infants and the nursery staff in an effort to learn how to mother in the nursery. Four explained how women worked to get to know and connect with their infants. The first three were labelled 'just existing', 'striving to be the baby's mother' and 'trying to establish competence'. The fourth, 'learning and playing the game', overlays the first three and represents the reality of having to undertake these already difficult and unexpected activities of mothering in the nursery. Two categories 'becoming connected' and 'struggling to mother' were identified as the consequences of women's actions and interactions. A significant finding of the study was the impact of the interactions between nurses and mothers' mothering. The nurse-mother relationship had the potential to significantly affect how women perceived their connection to the infant and their confidence in caring for their infant which occurred through a three way interaction. CONCLUSIONS: It becomes clear that the intense work women undertake as mothers in the nursery is focused on not only the infant, which might have been expected, but also the nursery staff. It is driven by their desire to develop or re-establish some sense of competence in the eyes of the nurse and to achieve control over the situation. Achieving physical closeness with the baby was a major strategy through which women not only learned about and gained intimate knowledge of their infant, but also demonstrated authority and ownership. It appears that reorientating the delivery of services from the infant to the mother-infant dyad would improve the care women and families receive during their nursery experience.     

Early Pregnancy Assessment Services in Australia: What psychosocial support is available? A qualitative study

ProblemWomen commonly experience emotional distress following miscarriage but do not receive the support they need from healthcare providers.BackgroundMiscarriage can result in psychological morbidity; however, appropriate support at the time of a miscarriage can lead to better psychological outcomes. Early Pregnancy Assessment Services (EPASs) are dedicated outpatient services considered the “gold standard” for miscarriage care. Little is known about the psychosocial support EPASs provide in Australia.AimsThe aim of this study was to explore the provision of psychosocial support in Australian EPASs.MethodsSemi-structured interviews were conducted with 29 purposively sampled key-informants from 13 EPASs. Interviews were audio-recorded, transcribed, and thematically analysed.FindingsConsiderable variation was found in how EPASs functioned and their provision of psychosocial support. Many services were co-located with antenatal services, run by doctors with limited experience and most did not offer any psychosocial training to staff specific to EPAS. Referrals for additional support were generally not offered for first trimester miscarriages, and follow-up typically focused on physical management rather than emotional wellbeing. All EPAS staff demonstrated a strong commitment to providing best possible care to women within their own clinical setting and acknowledged the need for improved psychosocial support.ConclusionThis study provides the first exploration of Australian EPASs’ provision of psychosocial support. It has shown that while health care professionals working in EPASs are dedicated to providing the best possible care to women within their clinical setting, psychosocial support is very limited and could be improved.     

Navigating infant feeding supports after migration: Perspectives of Arabic and Chinese mothers and health professionals in Australia

Optimal feeding practices can establish lifelong, transgenerational and global health benefits. Migration and cultural factors impact infant feeding practices and the support mothers receive for optimal infant feeding. This qualitative study explored support for infant feeding among Arabic and Chinese speaking migrant mothers in Australia.Semi-structured focus groups were conducted in language with 24 Arabic and 22 Chinese-Mandarin speaking migrant mothers with children under five years of age. Individual interviews were conducted in English with 20 health professionals working with Arabic or Chinese speaking migrant families. Data were thematically analysed using the framework method.Traditional family networks and trusted bi-cultural doctors were influential infant feeding supports for mothers. Health professionals perceived maternal and child health services to be poorly understood, and some mothers who accessed services felt they were not always culturally sensitive. Mothers sought additional information and support through online sources and peers. Both mothers and health professionals recognised the challenges of managing conflicting infant feeding advice and seeking best-practice support.The findings of this study highlight opportunities for health professionals to better support migrant mothers’ infant feeding practices, for example through engaging families and working with doctors. There is a need for greater cultural sensitivity within maternal and child health services and culturally relevant programs to support healthy infant feeding practices among migrant communities.