Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

Objectives

A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care.

Design

Qualitative in-depth interviews with bereaved informal carers of people with dementia.

Setting

United Kingdom.

Participants

Forty bereaved carers – 31 women and nine men – with an age range of 18–86 years and from wide socioeconomic backgrounds participated.

Main outcome measures

Experiences of carers of care for person with dementia during last year of life.

Results

The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices.

Conclusion

The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings – examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.     

Is there a bias in patient choices for hospital care? Evidence from three Italian regional health systems

Patients choice is at the core of competition in hospital care. In spite of a flourishing literature, little is known about the true process leading patients to choose a specific provider. Most models in this literature assume - without testing - that hospitals are perceived to be homogeneous providers. In this article we take a different direction. We assume that patients have a bias towards some types of hospitals, we test this hypothesis and show which attributes determine this bias. We exploit the characteristic of Italian health care organization, where devolution has allowed regional systems to choose the level of competition and the private-public hospitals mix. We estimate conditional logit models for hip replacement admissions in three regions (Lombardy, Veneto, and Emilia-Romagna) over the period 2014- 2016. We show that, depending on the competition framework (peculiar to each region) patients are aware that some hospitals are best performers in their area and are willing to travel more to be admitted there. This is particularly true for regional health care systems where competition between public and private providers is well developed. Our model provides interesting policy implications: a) the idea that hospitals are different in patients perception should be kept in mind in the architecture of the market for hospital care; b) clinical quality as a driver to patients choice seems to work better in a less regulated competition settings     

HIV prevention and men who have sex with women and men in México: findings from a qualitative study with HIV-positive men

Unprotected sex between men is the major risk factor for HIV infection in México and many other Latin American countries. There is a substantial body of literature demonstrating that the relationship between sexual identity and sexual practice is not binary or causal -- men who have sex with other men do not necessarily perceive themselves as gay -- and there is increasing interest in HIV prevention with men who have sex with both men and women. In México, HIV prevention with men who have sex with women and men and who are not socially affiliated or identified with gay men is lacking. This paper explores the sexual histories and HIV-risk perception of HIV-positive Mexican men who indicated that they have sex with women in a screening interview and then in the context of an in-depth interview also reported having had sex with men. We consider the sexual practices and sexual and social identities of these men, examining their explanations for having sex with other men, the strategies used to affirm their masculinity, the management of their sexual identity in their social networks, HIV-risk perception before diagnosis and sexual practices after diagnosis. Recommendations are made to improve HIV prevention for men who have sex with men as well as women and who do not assume a gay or bisexual identity.     

Core binding factor acute myeloid leukemia (CBF-AML) in México: a single institution experience

Twenty one patients with CBF-AML presented prospectively in the Centro de Hematología y Medicina Interna de Puebla (Puebla, México) between February 1995 and March 2010, 14 with the t(8;21)(q22;q22) and 7 with the inv(16)(p13;q22)/t(16;16)(p13;q22); they represent 13% of all cases of AML. The median age of the patients was 24 years (range 1 to 61). Seven of 14 patients with t(8;21)(q22;q22) had an M2 morphology whereas 3/7 with the inv(16) had an M4 morphology; in addition to the myeloid markers identified by flow-cytometry (surface CD13, surface CD33, and cytoplasmic myeloperoxidase) lymphoid markers were identified in the blast cells of 8/14 cases of the t(8;21) patients, but in no patient with the inv(16). Nineteen patients were treated with combined chemotherapy and 16 (84%) achieved a complete molecular remission. Seven patients were auto or allografted. Relapses presented in 10/16 patients. The median probability of overall survival (OS) has not been reached being above 165 months, whereas the 165-month probability of OS and leukemia-free survival was 52%; despite a tendency for a better outcome of patients with the t(8;21), there were no significant differences in survival of patients with either the t(8;21) or the inv(16). In this single institution experience in México, we found that the CBF variants of AML have a similar prevalence as compared with Caucasian populations, that the co-expression of lymphoid markers in the blast cells was frequent in the t(8;21) and that these two AML subtypes were associated with a relatively good long-term prognosis. Further studies are needed to describe with more detail the precise biological features of these molecular subtypes of acute leukemia.     

The in-home environment and household health: a cross-sectional study of informal urban settlements in northern México

People living in poverty make up nearly half of the global population and a large proportion of these individuals inhabit cities, living in informal settlements. However, only limited research on in-home environmental exposures and the associated health effects in these communities is available. This research investigates the home environment in unplanned settlements of a rapidly growing city on the U.S.-México border and its impact on the health of households with children under 12 years of age. A cross-sectional design was used to assess household exposures and health outcomes at the household level. A total of 202 households were selected from two informal settlements in the peri-urban region of Ciudad Juárez, México. The following variables were significantly associated with the report of at least one household member experiencing a health outcome in a two week period. Allergies were positively associated with insecticide use inside the home (adjusted Relative Odds (RO), 2.71; 95% confidence interval (CI), 1.2-6.3). Respiratory problems were associated with households using a wood burning stove vs. a gas stove (adjusted RO, 5.64; 95% CI, 1.1-27.9). Diarrhea was negatively associated with presence of a flush toilet in the home (adjusted RO, 0.22; 95% CI,0.1-0.6). Finally, eye irritations were positively associated with indoor tobacco smoke (adjusted RO, 2.23; 95% CI, 1.1-4.5). This research highlights exposures associated with poor living conditions in informal settlements and their associations with detrimental effects on health. More efforts should be made to understand the dynamics of poor urban environments including the health effects of exposures linked with poor housing conditions.     

HIV prevention and men who have sex with women and men in México: Findings from a qualitative study with HIV‐positive men

Unprotected sex between men is the major risk factor for HIV infection in México and many other Latin American countries. There is a substantial body of literature demonstrating that the relationship between sexual identity and sexual practice is not binary or causal — men who have sex with other men do not necessarily perceive themselves as gay — and there is increasing interest in HIV prevention with men who have sex with both men and women. In México, HIV prevention with men who have sex with women and men and who are not socially affiliated or identified with gay men is lacking. This paper explores the sexual histories and HIV‐risk perception of HIV‐positive Mexican men who indicated that they have sex with women in a screening interview and then in the context of an in‐depth interview also reported having had sex with men. We consider the sexual practices and sexual and social identities of these men, examining their explanations for having sex with other men, the strategies used to affirm their masculinity, the management of their sexual identity in their social networks, HIV‐risk perception before diagnosis and sexual practices after diagnosis. Recommendations are made to improve HIV prevention for men who have sex with men as well as women and who do not assume a gay or bisexual identity.     

Puréed diet: prevalence and reported reasons for use in a long-term care hospital

Although puréed diets are thought to be widely used for patients in long-term care facilities, there is little specific information concerning prevalence and reasons for the actual use of this diet texture. At Saint-Vincent Hospital, a 516 bed, long-term care and rehabilitation facility, 25.9% of the chronic-care population (n = 424) were on a puréed diet. Those who received puréed diets tended to be older (83.5 years versus 75.4 years, P < 0.001) and were more likely to be female (82.7% versus 70.8% P < 0.006), than the total population of long-term care patients. A greater percentage of patients receiving a puréed diet had dementia (43.0% versus 30.6%, P < 0.02), and fewer had cerebrovascular accident as a primary diagnosis (22.6% versus 33.9%, P < 0.05), than the total population of long-term care patients at this hospital. Following data collection, reasons for patients being on a puréed diet were grouped into five categories. The most popular categories were "Physiological/Mechanical" and "Cognitive" problems.     

Determining patient and primary care delay in the diagnosis of cancer – lessons from a pilot study of patients referred for suspected cancer

Background

Migraine is considered to have a negative influence on sex life. The present study was to analyse the perceptions of importance of and satisfaction with sex life as well as the expression of interest in sex among people having migraines in a prospective follow-up mail survey in 1998 and 2003.

Methods

The random sample was stratified according to gender and age in four age groups (20–24, 30–34, 40–44, and 50–54 years). Altogether 25 898 individuals responded to the baseline and 19 626 to the follow-up questionnaire (75.8% response rate). We examined as to how the perceptions of sex life of those suffering from migraine changed during a 5-year follow-up. Conditional logistic regression was used to analyse the data of the responses on self-reported migraine in the baseline and follow-up surveys (N = 2 977, 79.2% women). Each person with migraine was assigned a gender- and age-matched control in the analysis.

Results

All three outcome variables tended to decrease in value. Importance of sex life was higher among men with migraine than among their controls. Among women migraine lessened interest in sex life.

Conclusion

Our findings suggested that migraine has a different impact on sex life among women from that among men.     

Relative risk of death from exposure to air pollutants: a short-term (2003-2007) study in Mexicali, Baja California, México

Studies have shown associations between respiratory diseases and air pollutants in Mexicali, México; however, none have addressed relative risk (RR) of death. By using Poisson regression models, we quantified the RR by exposure for: particulate matter (PM(10), PM(2.5)), carbon monoxide (CO), nitrogen dioxide (NO(2)), ozone (O(3)), and sulfur dioxide (SO(2)) over a 5-year period and by climate (winter or summer). RRs were estimated utilizing each pollutant (single-pollutant model) on the same day as pollutant concentration were measured (lag 0) and up to 7 days later to the pollutant measurements (lag 7). Significant associations were found in RRs for one interquartile range increment of the corresponding pollutant, such as: PM(2.5) lagged 5 days in winter and for the 5-year period (RR, 1.041 and 1.028, respectively); CO lagged 1 day in winter and for the 5-year period (RR, 1.044 and 1.032, respectively); NO(2) on the current day (lag 0) in summer (RR = 1.037); and SO(2) lagged one day for the 5-year period (RR = 1.023).     

Ten-Year Viability Study on Natural Populations of <Emphasis Type="Italic">Drosophila</Emphasis> Sibling Species from Laguna Verde,Veracruz, México

The generation of electricity in nuclear power plants produces an increase in background radiation that could possibly have some impact on the organisms that live in that area. In order to identify and quantify any such possible effect, the natural populations of two sibling species, D. melanogaster and D. simulans, that live in the immediate vicinity of the first Mexican Nuclear Power Plant were analyzed for a period of 10 years. Collections of flies were made at two sites, one close to and one farther from the power plant, during the pre and operational stages of the reactor, and their egg-to-adult viability was analyzed. The data obtained indicate that in both sites, the egg-to-adult viability was generally higher in D. melanogaster than in D. simulans. Further, a relationship was found between egg-to-adult viability and the season of the year (warm–wet or cool–dry season). Some differences were found between the two sites. It may be concluded that there is no negative impact on the Drosophila populations studied.     

Chain of care for patients who have attempted suicide: a follow-up study from Bærum,Norway

Background

Individuals who have attempted suicide are at increased risk of subsequent suicidal behavior. Since 1983, a community-based suicide prevention team has been operating in the municipality of Bærum, Norway. This study aimed to test the effectiveness of the team's interventions in preventing repeated suicide attempts and suicide deaths, as part of a chain of care model for all general hospital treated suicide attempters.

Methods

Data has been collected consecutively since 1984 and a follow-up was conducted on all individuals admitted to the general hospital after a suicide attempt. The risk of repeated suicide attempt and suicide were comparatively examined in subjects who received assistance from the suicide prevention team in addition to treatment as usual versus those who received treatment as usual only. Logistic regression and Cox regression were used to analyze the data.

Results

Between January 1984 and December 2007, 1,616 subjects were registered as having attempted suicide; 197 of them (12%) made another attempt within 12 months. Compared to subjects who did not receive assistance from the suicide prevention team, individuals involved in the prevention program did not have a significantly different risk of repeated attempt within 6 months (adjusted OR = 1.08; 95% CI = 0.66-1.74), 12 months (adjusted OR = 0.86; 95% CI = 0.57-1.30), or 5 years (adjusted RR = 0.90; 95% CI = 0.67-1.22) after their first recorded attempt. There was also no difference in risk of suicide (adjusted RR = 0.85; 95% CI = 0.46-1.57). Previous suicide attempts, marital status, and employment status were significantly associated with a repeated suicide attempt within 6 and 12 months (p < 0.05). Alcohol misuse, employment status, and previous suicide attempts were significantly associated with a repeated attempt within 5 years (p < 0.05) while marital status became non-significant (p > 0.05). With each year of age, the risk of suicide increased by 3% (p < 0.05).

Conclusions

The present study did not find any differences in the risk of fatal and non-fatal suicidal behavior between subjects who received treatment as usual combined with community assistance versus subjects who received only treatment as usual. However, assistance from the community team was mainly offered to attempters who were not receiving sufficient support from treatment as usual and was accepted by 50-60% of those deemed eligible. Thus, obtaining similar outcomes for individuals, all of whom were clinically judged to have different needs, could in itself be considered a desirable result.

     

‘Gaining health and wellbeing from birth to three’: a web-based positive parenting programme for primary care settings

ABSTRACT

Current models of pediatric care include parental support as part of health promotion in the early years. This study introduces the modality of e-health by describing the universal ‘Gaining Health and Wellbeing from Birth to Three’ programme, reporting on the level of programme satisfaction among 249 parents and 350 professionals. The average level of satisfaction was very high for both groups. The professionals showed significantly higher rates than the parents in the ‘Activity’ factor, but there were no significant differences with regard to the ‘Programme experience’ and ‘Parenting impact’ factors. Parents living in single-parent families were more satisfied, whereas professionals who were more heavily engaged with the Internet were less satisfied with the parenting impact of the programme. In sum, this study has demonstrated that a cost-efficient (brief and fully automated) structured programme was able to reach a large population of participants and satisfy their expectations about the programme.     

How much is not enough? Human resources requirements for primary health care: a case study from South Africa

OBJECTIVE: To quantify staff requirements in primary health care facilities in South Africa through an adaptation of the WHO workload indicator of staff needs tool. METHODS: We use a model to estimate staffing requirements at primary health care facilities. The model integrates several empirically-based assumptions including time and type of health worker required for each type of consultation, amount of management time required, amount of clinical support required and minimum staff requirements per type of facility. We also calculate the number of HIV-related consultations per district. The model incorporates type of facility, monthly travelling time for mobile clinics, opening hours per week, yearly activity and current staffing and calculates the expected staffing per category of staff per facility and compares it to the actual staffing. FINDINGS: Across all the districts there is either an absence of doctors visiting clinics or too few doctors to cover the opening times of community health centres. Overall the number of doctors is only 7% of the required amount. There is 94% of the required number of professional nurses but with wide variations between districts, with a few districts having excesses while most have shortages. The number of enrolled nurses is 60% of what it should be. There are 17% too few enrolled nurse assistants. Across all districts there is wide variation in staffing levels between facilities leading to inefficient use of professional staff. CONCLUSION: The application of an adapted WHO workload tool identified important human resource planning issues.     

Discrete choice experiments for complex health‐care decisions: does hierarchical information integration offer a solution?

This paper describes an application of hierarchical information integration (HII) discrete choice experiments. We assessed theoretical and construct validity, as well as internal consistency, to investigate whether HII can be used to investigate complex multi-faceted health-care decisions (objective 1). In addition, we incorporated recent advances in mixed logit modelling (objective 2). Finally, we determined the response rate and predictive ability to study the feasibility of HII to support health-care management (objective 3). The clinical subject was the implementation of the guideline for breast cancer surgery in day care, which is a complex process that involves changes at the organizational and management levels, as well as the level of health-care professionals and that of patients.We found good theoretical and construct validity and satisfactory internal consistency. The proposed mixed logit model, which included repeated measures corrections and subexperiment error scale variations, also performed well. We found a poor response, but the model had satisfactory predictive ability. Therefore, we conclude that HII can be used successfully to study complex multi-faceted health-care decisions (objectives 1 and 2), but that the feasibility of HII to support health-care management, in particular in challenging implementation projects, seems less favourable (objective 3).     

How far?: Using geographical information systems (GIS) to examine maternity care access for expectant mothers in a rural state

Various factors have made rural access to maternity care a significant problem for rural women. The geographic distance between a mother's county of residence and the county in which she gave birth was examined in a rural state. Analyzing North Dakota county-level data using geographic information system (GIS) software, women from over half of the state's counties, making up nearly 18% of all births, were found to be over 40 miles to the hospital in which they gave birth. These findings suggest that rural women may experience significant geographic barriers as they receive health services in the prenatal, delivery, and postpartum periods of their pregnancy. We highlight the value of GIS, particularly geovisualization power, and note models of care that may be effective for rural women.