Living with chronic illness in the family setting

This paper discusses the ways in which family practices and family relationships interact with the demands of diet-related chronic illness. It uses a study that examined the management of food and diet in families where one member had been diagnosed with one of two medical conditions: coronary heart disease (CHD) and coeliac disease (CD). The data revealed a propensity for family members, especially female partners/wives, to see the tasks and activities related to the special diet in terms of family practices rather than individual (patients') responsibilities. These family practices could be seen to be gendered but also part of the ongoing lived experience of the family relationship. It is speculated that this is part of a desire for what Giddens has described as 'ontological security'. Thus, the special diet tends to be assimilated into family practices in ways that promote a sense of continuity that is described as 'normality' or 'leading a normal life'.     

Boyfriends and injecting: the role of intimate male partners in the life of women who inject drugs in Central Java

The international literature shows that HIV-risk behaviour for women mostly occurs in the context of intimate relationships. Power imbalances in the social, economic and cultural spheres put women at risk. This paper addresses the roles of male partners in women's engagement in drug-use behaviour and drug-related HIV-risk behaviour in Indonesia. Data were gathered through in-depth interviews with 19 women who had injected drugs in the previous month in three sites in central Java. Most of the women had male partners who also injected drugs. Results show that male partners play a significant role in the initiation of drug use, the provision of drugs, injecting behaviour and in the constitution of women injectors' social networks. These findings suggest the need to develop couple-based interventions and to facilitate women-only groups as part of HIV prevention.     

The experience of chronic illness in women: a comparison between women with endometriosis and women with chronic migraine headaches

The diagnosis of a chronic illness is a life changing event that affects the biological, psychological, and sociological aspects of a person's life. The purpose of the present study was to compare the experiences of pain, physical and psychological well-being, stress, patient satisfaction, social support, and attitudes toward menstruation of women who suffer from endometriosis and women who suffer from chronic migraine headaches. It was hypothesized that women with endometriosis would have more negative scores than women who have migraines on all measures because endometriosis is not understood by society to be a valid source of pain. Participants were 41 women with endometriosis and 32 women with migraines who were recruited from support groups and online listservs. Women with endometriosis reported significantly more pain, stress, and negative attitudes toward menstruation than did women with migraines. Implications for the differential treatment of women with chronic illnesses related to the menstrual cycle are discussed.     

SA HealthPlus: a controlled trial of a statewide application of a generic model of chronic illness care

SA HealthPlus, one of nine national Australian coordinated care trials, addressed chronic illness care by testing whether coordinated care would improve health outcomes at the cost of usual care. SA HealthPlus compared a generic model of coordinated care for 3,115 intervention patients with the usual care for 1,488 controls. Service coordinators and the behavioral and care-planning approach were new. The health status (SF-36) in six of eight projects improved, and those patients who had been hospitalized in the year immediately preceding the trial were the most likely to save on costs. A mid-trial review found that health benefits from coordinated care depended more on patients' self-management than the severity of their illness, a factor leading to the Flinders Model of Self-Management Support.     

Negotiating health and chronic illness in Filipino-Australians: a qualitative study with implications for health promotion

Objective: In spite of the healthy immigrant effect, the prevalence of lifestyle-related chronic diseases among migrants is reported to approximate that of the host country with longer duration of stay. For example, higher rates of chronic diseases such as Type 2 diabetes and hypertension have been observed among Filipino migrants and these have been linked to acculturation. The aim of this study was to explore the experiences of Filipino-Australian migrants in managing their chronic health conditions in a Western host country.

Design: This paper reports on qualitative findings of a mixed methods study that used an explanatory sequential design. Nine focus group discussions were undertaken with 58 Filipino-Australian migrants with chronic disease. Thematic analysis was undertaken using a five-stage general purpose thematic framework ensuring that themes closely identified key participants’ experiences.

Results: Findings revealed that health benefits provided by the health system in Australia were considered advantageous. However, a lack of social and instrumental support compounded isolation and disempowerment, limiting self-management strategies for chronic illnesses. Cultural beliefs and practices influenced their knowledge, attitude to and management of chronic disease, which health service providers overlooked because of perceived acculturation and English language skills. Overall this study has clearly identified recognition of cultural beliefs, language needs and support as three core needs of Filipino-Australian migrants with the elderly the most vulnerable.

Conclusion: This paper highlights that self-management of chronic disease among elderly Filipino immigrants may be adversely affected by host language difficulties, a lack of social support and cultural issues, impacting on access to services, health-seeking behaviours and participation in health promotion initiatives. Language, culture-specific health interventions and resources and enhancing social support are likely important strategies in promoting chronic disease self-management among the elderly. These interventions have the potential to empower and encourage individuals to take control and better manage their chronic disease.     

Postinjury Marriage to Men with Spinal Cord Injury: Women's Perspectives on Making a Commitment

No previous research seems to have examined why able-bodied women might choose to marry men with a significant, permanent physical impairment. This exploratory study employed a grounded theory methodology to examine the courtship experiences of 8 able-bodied women who made postinjury marital commitments to men with a spinal cord injury (SCI). A tentative model of relationship development integrated salient factors which emerged from the data. Contrary to what one might expect to find based on maladaptive motivations attributed to nondisabled mates by some authors, the present findings suggest a substantial overlap with existing models of courtship. There were evident, though, significant individual factors and external social forces influencing relationship development in the context of disability. Participants described their mates as positively adjusted to their disability and as demonstrating autonomous attitudes which, along with personality variables, were considered important elements of attraction. Participants revealed: an openness to a relationship with a partner with SCI; prior personal experience with disability; flexibility regarding role performance; acceptance of disability and need for assistance; an attitude aimed at fostering their partner's independence; and, resiliency when faced with social disapproval.     

Intervening in masculinity: work,relationships and violence among the intimate partners of female sex workers in South India

Although health researchers have begun to examine the forms of violence and power dynamics that play out in the intimate relationships of female sex workers (FSWs) in India, this knowledge has tended to focus on the perspectives of women, leaving men’s motivations and attitudes relatively unexamined. This paper examines the contours of masculinity and gender norms from the perspective of the intimate partners of FSWs. Based on six months of ethnographic research in Northern Karnataka, the study employed two focus group discussions (FGDs) with Devadasi FSWs (N = 17), as well as four FGDs (N = 34) and 30 in-depth interviews with their intimate partners. Given the precarious labour conditions in this region, tensions developed in the participants’ relationships with FSWs, as these men were unable to meet local ideals of manhood. Violence became a way that men attempted to re-secure a sense of control in their relationships with women, and to fulfil fantasies of male power. We recommend that programs engaging men not only address intimate partner violence but also attend to the social and structural realities surrounding these men’s daily lived experiences.     

Chronic illness, expert patients and care transition

During the last century demographic and epidemiological transitions have had a radical impact upon health and health service provision. A considerable body of research on the sociological aspects of living with chronic illness has accumulated. Debate has focused on how social environments shape disability-related experiences, and the extent to which individual responses define health outcomes. Through the establishment of the Expert Patients Programme (EPP) in 2001, the Department of Health has sought to enhance NHS patients' self-management capacities. This paper discusses three areas relevant to this: the policy formation process leading up to the EPP's present stage of development; the evidence base supporting claims made for its effectiveness; and the significance of psychological concepts such as self-efficacy in approaches to improving public health. The conclusion discusses NHS developments in primary care and public involvement in health and healthcare, and the implications that initiatives such as the EPP carry for the future. It is argued that to facilitate a constructive process of 'care transition' in response to epidemiological and allied change, awareness of cognitive/psychological factors involved in illness behaviours should not draw attention away from the social determinants and contexts of health.     

Stigma,trauma and sexuality: the experiences of women hospitalised with serious mental illness

Women with serious mental illness (SMI) occupy a social position in which their experiences are simultaneously influenced by stigmatisation, institutionalisation and gendered dimensions of trauma and power. Women with SMI are stigmatised in society, pushed to the margins and left vulnerable to victimisation and rejection, particularly if hospitalised in psychiatric institutions. Using modified labelling theory, I investigate how women hospitalised with SMI, especially those who have histories of sexual abuse and trauma, experience sexuality and perceive men and masculinity. I extend modified labelling theory by empirically analysing the role of social status and power in the labelling process. Specifically, I focus on gender, and analyse interviews with 55 women in US psychiatric hospitals, focusing on gendered experiences of trauma, stigma and attitudes about sexuality. I show how trauma increases the salience of stigma and potential for retraumatisation, both of which are amplified by the institutional setting. I find meaningful differences in the narratives of women who have experienced trauma and those who have not. Modified labelling theory helps explain how labelling can perpetuate self-stigma, which threatens women's self-esteem, safety and trust in others. The intersection of these experiences extends modified labelling theory and may have profound implications for recovery.     

Managing the risk of intimacy: accounts of disclosure and responsiveness among people with HIV and intimate partners of people with HIV

Abstract

It is well known that concerns about sexual risk tend to decline among people in intimate relationships where there is established commitment and trust. In the context of relationships at increased risk for HIV transmission, interactions involving disclosure and partner responsiveness are key to maintaining intimacy and physical safety. This paper explores concepts of risk and sexual intimacy articulated by a community sample of 30 people living with HIV and their intimate relationship partners. Data revealed the shifts in intimate relationship dynamics upon the disclosure of an HIV diagnosis, the importance of intimacy in the context of managing one or both partners’ HIV care and responses to new advances in HIV prophylaxis. Findings suggest that participants’ experiences of self-disclosure and partner responsiveness most often resulted in an increased sense of protectiveness from and for partners. This suggests that health-promoting messaging should be adapted to be more relevant to intimate couple communication and mutual support.     

Living vigilant lives with chronic illness: stories from older low-income minority women

Our purpose in this pilot study is to test the validity of the concepts in the Evolutionary Empowerment-Strength model, which was developed through analysis of data from a previous study that observed how older women coped with a hip fracture. Thirteen minority women aged 63 to 88 years with chronic illness participated in this pilot study. Findings indicate four themes: (1) Positive Self-Talk, (2) Strong Spiritual Faith, (3) Refusal to Dwell on Deficits, and (4) Sense of Survival. Three of the five concepts in the Evolutionary Empowerment-Strength model were supported, which demonstrates initial usefulness of the model for varied populations.     

Personalization of Helping Relationships: Resident Service Coordinators' Work with Elderly Residents

As part of a larger study, in-depth interviews were conducted with 26 Resident Services Coordinators (RSCs) working in elderly housing to explore their experiences working with residents. Qualitative analysis revealed a major theme: RSCs view themselves as critical sources of support in residents' lives. Additionally, two subthemes reveal the affective nature of the relationships that RSCs form with residents: (a) Some RSCs working with elders report a very strong sense of obligation to familyless or isolated elders; and (b) in some instances, they describe their relationships with residents using “family-like” terms. Frail residents' limited access to support appears to strengthen the affective bond that some RSCs form with residents. The findings have implications for understanding how RSCs view their role and the emotional rewards and costs that RSCs experience in their role.     

Men living with long‐term conditions: exploring gender and improving social care

Disabled men have traditionally been seen as incomplete men or as entirely gender‐less. Research which has looked at the intersection of disability and male gender has largely treated disabled men as a homogeneous group with little reference to, for example, impairment‐related differences. The ongoing move towards self‐directed, personalised social care in England suggests that support needs relating to gender may be taken more seriously. A qualitative study with 20 men with Duchenne muscular dystrophy in England in 2013 explored the men's experiences of the organisation and delivery of social care as it pertained to their sense of being men. Our main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. More often than not the organisation and delivery of social care people de‐gendered or emasculated many of the men who took part in the study. Our paper speaks to the need to explore impairment‐specific issues for disabled men; to deliver a more person‐centred approach to social care which recognises the importance of the social and sexual lives of disabled men; and to create ways in which men can support and empower each other to assert essential human rights relating to independence, dignity and liberty.     

Gender reorientation,psychological adjustment,and involvement with female partners in female-to-male transsexuals

The present research examined the relationship, in a sample of female-to-male transsexuals, between psychological and social adjustment, on the one hand, and gender reorientation (approximation of the status of the opposite biological sex) on the other. This work was conducted in two stages. The quantification of the gender reorientation construct was investigated in Study 1. A gender reorientation index (GRI) was developed and subjected to standard tests of psychometric adequacy. The GRI proved to be reliable and to have a satisfactory factorial composition, and it was considered an adequate measure of gender reorientation for use in the second study. Study 2 investigated the relationship between symptomatic depression and tension, involvement with a female partner, and gender reorientation. Four stepwise multiple regression analyses were carried out, one for each of four criterion variables (depression, tension, partner-involvement, and the MMPI Lie Scale). The predictor variables, gender reorientation and age, were the same in each analysis. There was a statistically significant negative correlation between depression and gender reorientation and between tension and gender reorientation, and a significant positive correlation between involvement with a female partner and gender reorientation. The GRI did not correlate with the MMPI Lie Scale, and age was not significantly related to any of the criterion variables. Thus, the present findings support the notion that gender reorientation is accompanied by improved psychological and social adjustment.     

Rural women with chronic illness: computer use and skill acquisition.

Chronically ill rural women must manage complex illness without easy access to health care resources including support and health information. The Women to Women project is a technology-based program with an overarching aim to assist rural women in the day-to-day management of their illnesses. An important aspect of the Women to Women program is teaching the women how to use the Internet to meet their support and informational needs. The purposes of this article are to examine changes in 1) the level of computer skills, 2) degree of comfort in using the computer, and 3) knowledge of Internet functions for the participants in the Women to Women computer-based intervention. Results of the initial analysis of data from 63 women (intervention group n = 29, control group n = 34) indicate that women participating in the intervention reported greater computer skills and computer comfort and greater knowledge of specific aspects of Internet use than women in the control group. These findings were further strengthened considering that intervention and control group differentials were sustained 8 months after the end of the women's participation in the computer intervention. With the attainment of computer and Internet skills, it is expected that these rural women will have a sustained ability to access quality Internet information that will allow them to better manage and adapt to their chronic illnesses.     

‘Men are leavers alone and women are worriers’: Gender differences in discourses of health

This paper explores gender differences in health talk, how such talk is informed by discourses at a societal level and the extent to which talking about health is a way of ‘doing gender.’ It draws on in-depth interviews with 48 women and men in their twenties and thirties showing that gender influences both the way people talk about health and their willingness to engage in health talk. It explores the way cultural constructions of gender influence the propensity to take risks with particular reference to HIV/AIDs and recreational drug use and the extent to which discourses of risk inform health talk. We discuss how changes in the occupational structure and the associated influx of men into ‘women's’ work are associated with more ‘feminized’ masculinities and a recognition among some men of the male body's vulnerability. They are also associated with men's health talk becoming more like women's. We conclude that cultural constructions of gender not only have an impact on health talk but also on the regulatory power of discourses of risk and risk management.     

Preventive care visits with OB/GYNs and generalist physicians among reproductive-age women with chronic conditions

Objective

To examine services delivered during preventive care visits among reproductive-age women with and without chronic conditions by physician specialty.

Data Sources

National Ambulatory Medical Care Surveys (2011–2018).

Study Design

We examined provision of specific services during preventive care visits by physician specialty among reproductive-age female patients, overall and among women with five common chronic conditions (diabetes, hypertension, depression, hyperlipidemia, and asthma).

Data Collection/Extraction Methods

The sample included preventive visits to OB/GYNs or generalist physicians where the patient was female, age 18–44, and not pregnant.

Principal Findings

In OB/GYN preventive visits, reproductive health services were more likely to be provided, while non-reproductive health services were less likely to be provided, both among reproductive-age female patients overall and among those with chronic conditions. For example, pap tests were provided in 44.5% of OB/GYN preventive visits (95% CI: 40.6–48.4) and in 21.4% of generalist preventive visits (95% CI: 17.2–26.6). Lipid testing was provided in 2.8% of OB/GYN preventive visits (95% CI: 1.7–3.9) and in 30.3% of generalist preventive visits (95% CI: 26.1–34.6).

Conclusions

Understanding the full range of care received in preventive visits across settings could guide recommendations to optimize where reproductive-age women with chronic conditions seek care.