Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2‐year period (2000–2002) in south‐central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross‐sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = –2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting‐related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01–3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility‐related tasks (OR = 0.41, 95% CI = 0.21–0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05–0.53, P = 0.002). To address gender differences in caregiving, a realistic home‐based palliative care approach must take into account the importance of informal caregivers.     

Caregiving work: The experiences and needs of caregivers in Australia

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in‐depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long‐term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.     

An exploratory study of spiritual care at the end of life

PURPOSE Although spiritual care is a core element of palliative care, it remains unclear how this care is perceived and delivered at the end of life. We explored how clinicians and other health care workers understand and view spiritual care provided to dying patients and their family members.     

Migration and health at older age in rural Malawi

The connection between migration and health has long been established, but relatively little is known about this relationship for older persons, particularly in sub-Saharan Africa (SSA). In this paper, we examine migration selection with regards to health status among older individuals in Malawi, by testing whether older migrants differ from non-migrants in health status before migration. To do so, we use data from the Malawi Longitudinal Study of Families and Health, a longitudinal panel dataset that includes a relatively large number of individuals at older ages. We focus on three measures: mental health, physical health, and HIV status. We find that the relationship between migration and health selection differs by gender. Older women who are HIV-positive are nearly 10 times more likely to migrate compared to their HIV-negative counterparts. For men, those with better mental health are less likely to migrate in the future. These results suggest that, although research in some settings shows that migrants have better health before moving, some older migrants have worse health than their non-migrant peers, and may, therefore, add to the already-heavy burden on rural health centres in Africa.     

Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care

BACKGROUND: Specialist Hospice at Home (HAH) services play an important role in the provision of care for people who choose to die at home. METHODS: A pilot evaluation of a new HAH scheme in East Midlands, UK was carried out between January and December 2003, in which routine data were collected and analysed. RESULTS: In 2003, 155 people received the HAH service. Most patients (83%) were over the age of 60 and had a cancer diagnosis (92%). Almost one-third of patients waited for 2 days or longer to receive care from the HAH scheme. These patients were around three times as likely to be in an inpatient hospice (RR=3.27; 95% CI=1.19-8.95) or an acute hospital (RR=2.85; 95% CI=1.33-6.09) when they were referred. The median length of service use was 4 days. CONCLUSIONS: The HAH service enabled people to die at home in the last days of life. Given the aging population, we would expect the demand for such services to further increase. Shortcomings identified included delay in receiving care for people moving to home from hospices and acute hospitals.     

Growing old and getting sick: maintaining a positive spirit at the end of life

End of life throws up significant mental health challenges. A high proportion of people in the terminal stages of illness experience depressive symptoms. This paper integrates a theory of hierarchy of human needs and empirical research describing experiences of grief and depression in terminal illness, to develop a model of care aimed at reducing depression and suffering. This care attends to physical, psychological, social and spiritual aspects, taking into account the concerns of patients and their families. Professional help can be offered to patients to restore dignity and hope, strengthen their ways of coping, and encourage social connections. To offer this, a well-resourced and coordinated, multidisciplinary and skilled workforce is needed.     

The implementation of environmental health policies in health care facilities: The case of Malawi

Establishing and maintaining safe and sufficient environmental health (EH) conditions in health care facilities (HCFs) is important to prevent and control infections. In 2018, the Government of Malawi finalized an environmental health policy that defines specific targets and programs for EH in healthcare settings. This and other related policies have been used since 2010 as a guide for EH practice in HCFs, but the implementation of these policies has been incomplete to-date. This study qualitatively examines the successes and shortcomings of implementing these policies in Malawi's public HCFs. Thematic analysis of interviews with 53 respondents from all levels of government was used to identify the successes of the policies and the barriers to effective implementation using Contextual Interaction Theory. The greatest identified strength lies in the design of the EH department and its ability to connect individual HCFs and EH actors directly to the policy-making level of government. Identified barriers to implementation include: insufficient financial support; lack of human resources; incomplete reporting; poor stakeholder coordination; and insufficient training of EH actors. We recommend refresher trainings for all EH actors, the establishment of a directorate level EH position, and strengthened coordination to improve the collection, analysis, and reporting of monitoring data to enable EH actors to advocate for the additional funding needed to develop programs for EH personnel and to apply effective EH interventions.     

Promoting health and well-being at the end of life through client-centered care

Background: Client-centered care is the cornerstone of the hospice and includes family members and significant others as the client unit. There needs to be a conceptual shift away from “medicalizing” patients at the end of life to promoting their health and considering their well-being a shared responsibility. Using the hospice philosophy of client-centered care can inform and expand health-promotion occupational therapy practice, particularly for people at the end of life. Objectives. This paper examines client-centered care at the end of life as that which enables engagement in meaningful occupation and promotes health and well-being until one dies. Methods: Constant comparison and thematic analysis is used for 12 interviews of hospice professionals. One of the themes, client-centered care, is discussed relative to the promotion of health and well-being at the end of life. Results: Client-centered care is deemed to be an important approach at the end of life. Conclusions/significance: It is determined that client-centered care at the end of life is vital to promote quality of life, health, and well-being. Further research is indicated.     

The end of life and the family: hospice patients’ views on dying as relational

The end of life is a highly emotive and critical period in the life course and families often play a central role during this time. Despite significant sociological work on dying as a relational experience, there has been little exploration of the significance of contemporary family structures and relations. In this article, drawing on the accounts of twenty hospice in‐patients, we explore how the end of life (in this case within an in‐patient unit) is mediated by family dynamics and expectations. Participants’ accounts reveal a range of interpersonal experiences, including: pressures and strains on families and patients; differentiation in family responses to and involvement in the dying process; and tensions between individual and family preferences/desires. We argue that family dynamics strongly influence individual experiences near death and that the focus on individual preferences and the management of disease in palliative care contexts must be augmented with sophisticated and nuanced understandings of the family context. We suggest that sociological conceptual explanations of shifts in social and family life, such as individualisation and ontological security, may also help us better understand the ways families approach and respond to the dying process.     

The effect of marriage and HIV risks on condom use acceptability in rural Malawi

A large and increasing proportion of HIV transmissions in sub-Saharan Africa occur within marriage. Condom use within marriage could, therefore, be an important prevention strategy, but there is considerable debate about whether married couples would be willing to use condoms. This paper contributes to this debate by identifying key factors that affect the acceptability of condom use within marriage and actual condom use among men and women in rural Malawi, using three waves of longitudinal data from 2004, 2006 and 2008. Specifically, we focused on the effect of (1) entry into first marriage, (2) respondent's HIV status, HIV perceptions, and risk behaviors, and (3) spouse's HIV characteristics on condom use acceptability within marriage and actual condom use with a spouse or steady partner. Using fixed-effects regression, we found that getting married coincides with a pronounced attitudinal shift regarding the acceptability of condom use within marriage that cannot be explained by differences in fertility status or selection into marriage. In addition, we found that, for women, perceived HIV status of the respondent and spouse generally had greater influence than actual HIV status on the acceptability of condom use within marriage and actual condom use with a spouse or steady partner, even after HIV status is known; while actual HIV status and HIV risk behaviors are generally more important among men. Although condom use within marriage remained low, these findings suggest that attitudes about and use of condoms are susceptible to change and that both marital status and perceptions of risk are important influences on condom use.     

The condom is an 'intruder' in marriage: evidence from rural Malawi

This paper assesses the condom situation within marriage in Malawi with particular attention to people's perceptions about the compatibility of condoms and marriage by analyzing the Malawi Demographic and Health Surveys 1992 and 2000, and via semi-structured interviews with married men and women from three districts in rural Malawi. There are four striking findings. First, condom use is negligible inside marriage. Second, there is considerable talk about condoms, especially among male social network partners. Third, virtually all the discussion of condoms, by both men and women, is in the context of preventing STI/HIV-AIDS infection in extramarital partnerships. Lastly, and critical for this paper, is that initiating a discussion of condom use for preventing infection in marriage is like bringing an intruder into the domestic space. Thus, there is evidence that change in attitudes about condom use may be occurring, but only outside marriage. This evidence concurs with Malawian government policy that advocates for condom use in marriage only if either spouse has more than one sexual partner. The AIDS epidemic is therefore bringing sexual behavior change outside marriage and not within.     

Together to end violence against women in Tanzania: Results of a pilot cluster randomized controlled trial to evaluate preliminary effectiveness of interpersonal and community level interventions to address intimate partner violence

ABSTRACT

In Tanzania, women suffer high rates of intimate partner violence (IPV). We conducted a pilot cluster randomised controlled trial to test the feasibility, acceptability and preliminary effectiveness of IPV prevention interventions targeting men and communities in nine villages randomly assigned to one of three study arms (n = 450 couples). In the Control Group, women participated in savings groups while male partners received no intervention. In Intervention Group 1, women participated in savings groups and men participated in peer-groups addressing gender relations and IPV prevention. In Intervention Group 2, women participated in savings groups, men participated in peer-groups, and community leaders facilitated dialogues on similar topics. Recruitment was completed within one month with 95% retained in the intervention and 81% retained in the endline survey. Acceptability was high, with men participating in 82% of peer-group session hours. More men in Interventions 1 (24%) and 2 (19%) disagreed with wife-beating compared to men in the Control (13%); and more men reported non-perpetration of IPV in Interventions 1 (16%) and 2 (14%) compared to the Control (?2%). Findings suggest a fully powered RCT may detect significant reductions in men’s justification and use of IPV, paving the way for evidence-based violence prevention programming.

Trial registration: ClinicalTrials.gov identifier: NCT02434796.     

Locating care at the end of life: burden,vulnerability, and the practical accomplishment of dying

Home is frequently idealised as the preferred location for end‐of‐life care, while in‐patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in‐patient unit. Drawing on semi‐structured interviews with in‐patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.     

Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan

Background Family caregiving is common and important in Taiwanese culture. However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC’s QOL has been explored in western countries—primarily with small sample sizes or short-term follow-ups—but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies. Methods A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs’ QOL were identified by a generalized estimation equation (GEE). Results Caregiving for a terminally ill cancer patient extracts a toll from a FC’s QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC’s QOL reflects the patient’s increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient’s death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC. Conclusion Taiwanese FCs’ QOL deteriorated significantly as the patient’s death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the ‘appraisals of caregiving’ are more salient in determining a FC’s QOL than the patient’s/FC’s characteristics and the caregiving demands.     

The family and nurse in partnership: providing day-to-day care for rural cancer patients

OBJECTIVE: To explore demands made on family members in managing symptoms and providing for the day-to-day care of relatives with cancer in rural New South Wales and how specialist palliative care nurses support these family members. DESIGN: Cross sectional qualitative study. SETTING: Seven health centres across rural New South Wales that cover a broad geographical area and reflect the diversity in economic conditions, population density and distance from three major urban centres in New South Wales. SUBJECTS: The study involved two groups of participants. The first group consisted of one or more members of families of oncology patients who were accessed through health workers at the seven centres. Nineteen family members from 17 families were interviewed. The second group comprised 10 nursing staff working as specialist palliative care nurses across the same geographical area as the families. MAIN OUTCOME MEASURES: Physical care and symptom management were the two main areas of interest. RESULTS: The rural experience of caring for palliative care patients was challenging, with support nurses needing to take into consideration all aspects of the patients' and families' living environments. CONCLUSION: There is a need for equipment and basic resources to be readily available to practitioners, funding for ongoing education and 24-h care.     

Empowerment through information: supporting rural families of oncology patients in palliative care

A research project examining the support needs of families caring for a relative in palliative care was conducted in New South Wales in 1997. Data were collected from 19 families and 10 specialist palliative care nurses from eight centres throughout New South Wales using audio-taped interviews. The findings show that information was one of the most important support needs for families to enable them to effectively care for their sick relative. The information provided needed to meet the individual and varying needs of families at different stages of their palliative care journey. Often the families described not knowing what their information needs were until a crisis occurred. Lack of information on a range of areas, from practical resources to providing physical care and managing medications, was problematic. Health professionals need to take responsibility in determining if families are aware of the information available, identify the most appropriate medium for this material and provide it at the pace and time wanted by the individual family.     

Marriage as a risk factor for HIV: Learning from the experiences of HIV-infected women in Malawi

Abstract

The gender inequalities that characterise intimate partner relationships in Malawi, a country with one of the highest HIV prevalence rates in the world, arguably place marriage as an important risk factor for HIV infection among women, yet few studies detail the complex interactions of marriage and risk. In order to develop HIV-prevention interventions that have lasting impacts in such communities, we need a deeper understanding of the intricacies of women's lives, how and why they are involved in marital relationships, and the implications of these relationships for HIV transmission or prevention. This article describes how women understand marriage's effects on their lives and their HIV risks. Drawing from focus group discussions with 72 women attending antiretroviral clinics in Malawi, we explore why women enter marriage, what women's experiences are within marriage and how they leave spouses for other relationships. Based on their narratives, we describe women's lives after separation, abandonment or widowhood, and report their reflections on marriage after being married two or three times. We then review women's narratives in light of published work on HIV, and provide recommendations that would minimise the risks of HIV attendant on marriage.     

Early clinical exposure to people who are dying: learning to care at the end of life

BACKGROUND: The nature of medical care at the end of life and, in particular, the way in which caring is learned remain problematic for medical educators and the profession. Recent work has indicated that doctors learn to care, in an emotional and intimate way, from people who are dying. METHODS: This paper reports on the development of a programme designed for medical students in their first clinical year who spend time with a person who is dying and their family. The students are required to produce a portfolio assignment that includes a personal reflection of the experience. The findings from a phenomenological study undertaken using these personal reflections are reported. These reflections and comments are interpreted as being embedded in five key themes. RESULTS: The actual encounters differed from the medical students' anticipation of them. Students identified an emotional component to the experience; they explored their own and the patient's understandings of spirituality; they reflected on personal meanings of the encounter and they suggested ways in which they might learn to care more effectively for people who are dying. DISCUSSION: The way in which many of these students approach end-of-life care has been altered through a transformative educational experience that encouraged them to draw on their own experiences and skills. Their learning was facilitated by the writing of accounts and the discussion that each group held with teaching staff at the conclusion of the programme.