Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Mind the gap: access to ARV medication, rights and the politics of scale in South Africa

Global access to anti-retroviral medication (ARVs) has increased exponentially in recent years. As a relatively recent phenomenon for the global South, much knowledge is being added, but analysis of ‘access’ to ARVs remains partial. The main research objective of this article is to gain a fuller picture of the range of forces constituting ‘access’ to ARVs by providing a local community case study from Hammanskraal, South Africa. A qualitative and relational approach situates specific points of ‘local’ access to ARVs within relations stretched over space. Spatial awareness enables us to consider the reinforcing effects of local geographies upon access to health care but also simultaneously sees this in relation to non-local geographies. The concept of scale is pivotal to creating linkages across space and reveals a number of ‘gaps’ in access that otherwise might not be shown. Elaborating on the meaning of “access” to treatment produces a more rounded picture of the context that people-living-with-AIDS encounter. A multi-scale and multi-disciplinary analysis of ‘access’ is therefore also highly informative in a related sense, namely, for closing the gap between human rights standards and actual implementation. A geographical imagination is useful not only to ‘mind’ but also to close the ‘gap’ in both senses.     

The Costs and Rewards of Caregiving Among Aging Spouses and Adult Children*

Using a social exchange perspective and data from a national sample of 978 spouse and child caregivers of older family members, this study assessed the association between caregiver relationship and gender and the costs and rewards of caregiving. We also evaluated whether relationship and gender moderate the effects of helpfulness on caregiver costs and rewards. Results supported the hypotheses that women, whether wives or daughters, experience more caregiving costs than do men, and that adult children experience more rewards than do spousal caregivers. In addition, care recipient helpfulness was associated with greater increases in rewards for spousal caregivers than for adult children caregivers.     

Caregiving Experiences and Health Conditions of Women Veteran and Non-Veteran Caregivers

BackgroundUnique experiences, for example, trauma, of women veteran caregivers may create differences in the caregiving experience and may be associated with health concerns. We examined caregiving factors and health concerns in women veteran caregivers compared to non-veteran women (civilian) caregivers, and identified variables associated with being a woman veteran caregiver.MethodsWe conducted secondary data analyses using data from a multistate survey to examine sociodemographics, the caregiver experience (relationship to recipient, duration as caregiver, hours of care provided, area help is needed, and greatest difficulty faced as a caregiver); emotional support; life satisfaction; lifestyle behaviors; general, physical, and mental health; and chronic conditions in women informal caregivers.FindingsOf women caregivers, more veteran caregivers provided activities of daily living (ADL) help (33%) than non-veteran caregivers (21%; p = .02). There were no differences in years as a caregiver, hours of care provided, or the relationship to the recipient. Poor sleep and poor mental health were experienced by more women veteran caregivers (vs. non-veteran), but physical health, general health, and chronic condition prevalence did not differ. Women veteran caregivers had twofold greater odds of being Black, never married, college educated, and providing ADL assistance. Odds of obesity were lower for women veteran caregivers relative to other women caregivers.ConclusionsWomen veteran caregivers experience health concerns, including sleeplessness, poor mental health, and some chronic conditions. Our cohort were young women, yet had concerns that may be exacerbated by being a veteran and assuming a caregiver role. Comprehensive services to support their needs as veteran patients and as caregivers are needed.     

Access with evidence development: an approach to introducing promising new technologies into healthcare

The rapid development of new health technologies for which there is limited, but promising, evidence has resulted in a daunting challenge - to provide care that meets population health needs and optimizes patient outcomes, demonstrates an efficient use of healthcare resources, and upholds basic principles of equity, access, and choice. In this paper, we introduce ‘Access with Evidence Development’ as a possible mechanism for addressing this challenge and discuss its application to the “Zamboni procedure” for Multiple Sclerosis.     

Caregiving on the Hopi Reservation: Findings from the 2012 Hopi Survey of Cancer and Chronic Disease

A family caregiver provides unpaid assistance to a family member/friend with a chronic disease, illness or disability. The caregiving process can affect a caregiver’s quality of life by reducing time for themselves, for other family members and for work. The 2000 Behavioral Risk Factor Surveillance Survey estimates that 16 % of adult American Indians (AIs) are caregivers. A 2012 survey collected knowledge and personal experience data from a random sample of Hopi men and women (248 men and 252 women). Self-identified caregivers answered questions on time spent caregiving, caregiver difficulties and services requested. Approximately 20 % of the 500 Hopi participants self-identified as caregivers (N = 98), with 56 % female. Caregivers in contrast to non-caregivers had a lower percentage of ever having a mammogram (86, 89 %), a higher percentage of ever having had a Pap smear test (89.1, 85.6 %), a prostate specific antigen test (35, 30.6 %) and ever having had a colonoscopy (51.2, 44 %). Almost 21 % of caregivers reported difficulty with stress and 49 % reported it as their greatest caregiver difficulty. More males (28.6 %) identified financial burden as the greatest difficulty than females (p = 0.01). Training on patient care was the service that caregivers would like to receive most (18.2 %). The percentage of Hopi’s providing caregiving was similar to national averages, although among men, was somewhat higher than national data (44 vs. 34 %). Stress was identified as a difficulty, similar to national studies.     

Relationship between Mastery and Caregiving Competence in Protecting against Burden,Anxiety and Depression among Caregivers of Frail Older Adults

Objective

Studies suggest the protective effect of mastery and caregiving competence against psychological stressors of caregiving in the context of dementia, although the interplay between the two with caregiver outcomes is not well understood. This study examines the independent and moderating impact of mastery and caregiving competence on burden, anxiety and depression among caregivers of older adults with frailty-related care needs.

Design, Setting and Participants

This is a cross-sectional study of 274 older adults-family caregiver dyads from a hospital in Singapore. Mean ages of the older adults and their caregivers were 85 and 59 years respectively.

Measurements

We performed hierarchical linear regression models to examine the independent influence of mastery and caregiving competence on caregiver burden, anxiety and depression. We also examined the interaction effect between mastery and caregiving competence for each outcome.

Results

Mastery and caregiving competence were independently negatively associated with caregiver burden, anxiety and depression. Mastery explained more variance than caregiving competence and had a stronger correlation with all outcomes. There was a statistically significant interaction between mastery and caregiving competence for depression (interaction term beta=.14, p<0.01), but not burden and anxiety. High levels of mastery are associated with less depression. particularly among caregivers with below-average levels of caregiving competence. Likewise, high levels of caregiving competence are associated with less depression. particularly among caregivers with below-average levels of mastery.

Conclusion

Our findings suggest potential benefits adressing targeted interventions for mastery and caregiving competence of caregivers to older adults as they independently influence caregiver outcomes and moderate each other’s effect on depression. Mastery-based interventions should be incorporated into current caregiver training which traditionally has focused on caregiver competence alone.

     

Conceptualising the prevention of adverse obstetric outcomes among immigrants using the ‘three delays’ framework in a high-income context

Women from high-mortality settings in sub-Saharan Africa can remain at risk for adverse maternal outcomes even after migrating to low-mortality settings. To conceptualise underlying socio-cultural factors, we assume a ‘maternal migration effect’ as pre-migration influences on pregnant women’s post-migration care-seeking and consistent utilisation of available care. We apply the ‘three delays’ framework, developed for low-income African contexts, to a high-income western scenario, and aim to identify delay-causing influences on the pathway to optimal facility treatment. We also compare factors influencing the expectations of women and maternal health providers during care encounters. In 2005–2006, we interviewed 54 immigrant African women and 62 maternal providers in greater London, United Kingdom. Participants were recruited by snowball and purposive sampling. We used a hermeneutic, naturalistic study design to create a qualitative proxy for medical anthropology. Data were triangulated to the framework and to the national health system maternity care guidelines. This maintained the original three phases of (1) care-seeking, (2) facility accessibility, and (3) receipt of optimal care, but modified the framework for a migration context. Delays to reciprocal care encounters in Phase 3 result from Phase 1 factors of ‘broken trust, which can be mutually held between women and providers. An additional factor is women’s ‘negative responses to future care’, which include rationalisations made during non-emergency situations about future late-booking, low-adherence or refusal of treatment. The greatest potential for delay was found during the care encounter, suggesting that perceived Phase 1 factors have stronger influence on Phase 3 than in the original framework. Phase 2 ‘language discordance’ can lead to a ‘reliance on interpreter service’, which can cause delays in Phase 3, when ‘reciprocal incongruent language ability’ is worsened by suboptimal interpreter systems. ‘Non-reciprocating care conceptualisations’, ‘limited system-level care guidelines’, and ‘low staff levels’ can additionally delay timely care in Phase 3.     

Negotiating normalization: The perils of producing pregnancy symptoms in prenatal care

In this paper, I argue that pregnant women confront a “double-bind” in complying with medical directives to report pregnancy symptoms: the combination of the routinization of prenatal care, understandings of fetal subjectivity, and the cultural discourse of maternal sacrifice create a situation in which women are at risk of failing as either as good patients, good mothers, or both. Longitudinal, in-depth interviews were conducted with 64 pregnant women in the New York metropolitan area. I found that health care providers make women’s embodied experiences a priority of surveillance, connecting symptoms to fetal well-being and emphasizing timely reporting of these symptoms to medical authorities. I found that women generally accepted this connection between symptoms and fetus, but were often perplexed as to which symptoms they needed to communicate to their providers when time constraints on routine prenatal appointments limited women’s ability to comply fully. Women also reported cultural pressures to “suffer nobly” the symptoms of pregnancy, no matter how uncomfortable. As a result, women found themselves with considerable responsibility for identifying problems in their pregnancies, with no clear way to adhere to the multiple and sometimes opposing mandates for managing symptoms they encountered.     

Caregiving for Uganda's elders with disability: Using cross-sectional surveillance data to identify healthcare service gaps in low- and middle-income settings

Background

Disability is highly prevalent in low-and-middle-income countries (LMICs), but there is a relative dearth of disability and caregiving research from LMICs.

Investigating the medical forensic examination from the perspectives of sexually assaulted women

Across many jurisdictions, a key institutional response to sexual assault is centred on the collection of medico-legal evidence through a medical forensic examination (MFE). Despite the increased routinization of this practice, such evidence often is not related to positive criminal justice outcomes. As there has been little systematic investigation of the perspectives of victims regarding the MFE, we conducted semi-structured, face-to-face interviews with 19 women aged 17–46 years who had been sexually assaulted and had undergone an MFE in the previous six months at one of four specialized hospital-based sexual assault centres in Ontario, Canada. Extracts from the transcribed interviews were coded into two broad themes, ‘Expectations’ and ‘Experiences’, from which a series of lower order constructs were derived. We found that most women went to a centre to have their physical and emotional needs addressed rather than medico-legal evidence collected and were overwhelmingly satisfied with their interactions with specially trained nurse examiners. However, some women were confused about the purpose of the MFE, believing that their access to treatment hinged upon undergoing this process. Moreover, though optional, several indicated that they had been instructed to have an MFE by the police and/or nurse examiner. Most women who chose to have evidence collected did so with the hope that it would hold the assailant accountable and generate social recognition of the harm done to them. While many stated that they were distressed during the MFE, some reported feeling simultaneously empowered by the fact that the experience fostered a “sense of doing something”. These findings point to the value of collecting medico-legal evidence in settings staffed with supportive practitioners who also attend to women's health related concerns. Implications with respect to issues of informed consent, revictimization, and empowerment, as well as the relative weight given to the MFE in the post-sexual assault care encounter, are discussed.     

Young women facing multiple and intersecting stressors of modernity,gender orders and youth

This article aims to explore stressors experienced by Swedish adolescent girls and young women, specifically understood in relation to social context and gender theory. Interviews were conducted with 40 young Swedish women, aged 16–25 years, who had sought help at a youth health centre for stress problems. Using qualitative content analysis we identified three clusters of stressors: “the stressors of modernity”, “the stressors of gendered orders”, and “the stressors of youth”. The results revealed that multiple and intersecting discourse-shaped stressors and demands connected to essential life spheres contribute not only to experiences of distress but also to feelings of constraint. Gendered individualism and healthism proved to be essential in understanding the young women’s experienced stress. Failing social support from adults, gendered demands and responsibility taking were also illuminated. This calls for a broad contextualized and gender-sensitive approach to young women’s stress and health problems.     

Predictors of risk of alcohol-exposed pregnancies among women in an urban and a rural area of South Africa

The study sought to determine the prevalence and predictors of being at risk of an alcohol-exposed pregnancy (AEP) among women of child-bearing age in an urban and rural location in South Africa. We conducted a cross-sectional household survey of 1018 women aged 18–44 years in one urban (n = 606) and one rural (n = 412) site. The women were interviewed using a structured questionnaire. We defined the primary dependent variable, being at risk of having an AEP, as current alcohol use, not being pregnant, being fertile, and no effective use of contraceptives. The independent variables included demographic, substance use, health perceptions, psycho-social, and partner characteristics. The rural women (21.84%) were more likely than their urban counterparts (11.22%) to be at risk of an AEP. In multiple logistic regression analyses, significant predictors of being in the “at risk” group for the urban women were (a) being ‘white’ as opposed to ‘black/African’, and being ‘coloured’ as opposed to ‘black/African’; and (b) current smoking. For the rural women, significant risk factors were (a) current smoking and (b) early onset of alcohol use. The significant protective factors were (a) education; (b) knowledge about Fetal Alcohol Syndrome; (c) parity. Use of stricter alcohol use criteria (i.e., three or more drinks and five or more drinks per sitting) in the definition of risk of an AEP yielded slightly different patterns of significant predictors. The results revealed high levels of risk of an alcohol-exposed pregnancy, especially amongst the rural women, and a need for location-specific prevention programmes. The high burden of AEP in South Africa calls for the establishment of national AEP prevention strategies and programmes as a matter of urgency.     

Family planning intentions: a qualitative exploration of postpartum women of Mexican descent in North Carolina

Background

North Carolina has one of the fastest growing Mexican–American populations, yet health care providers have minimal information on how to address the family planning needs of this population.

Study Design

We conducted semistructured interviews with postpartum Mexican–American women, aged 18–35 years, within 1 month of delivery. Salient themes were identified, coded and analyzed.

Results

Twenty women were interviewed. The majority had firmly held family size intentions: most desired to have 2 to 4 children with 2 to 5 years between births. Partners’ preferences and the family size in which the participant was raised were factors that most influenced their family size preference. First-generation Mexican–American participants were more likely to have a partner whose intentions are influenced by the gender(s) of their children compared with participants born in Mexico. Participants desired longer intrapartum intervals for optimal infant development, with financial considerations cited less frequently.

Conclusion

Postpartum women of Mexican descent articulate consistent family planning intentions. Partners’ desires may challenge the achievement of these intentions. Providers can encourage the most effective forms of contraception to promote ideal and intended family size.     

The Bambuí Health and Aging Study (BHAS): the experience with home care provided by wives of dependent elderly

This paper investigates the characteristics of caregiving and the experience of women that care for their elderly husbands in Bambuí, Minas Gerais, Brazil. Among the elderly population in this community, the authors interviewed ten wives, using a survey exploring the main themes on the subject of caregiving. The data were interpreted based on an anthropological model of analysis. This model places the interaction between the individual and the context in the center of the interpretative process, underlying the construction and expression of diverse forms of human experience. The results of the survey highlighted the role, responsibilities, and obligations of women in Brazilian society with respect to caregiving for dependent elders. Women are seen as "natural" caregivers, whereby it is their given obligation to take care of their husbands, providing all kinds of support. Both the individual in need of care and the caregiver live the reality of functional disability in a society lacking the proper mechanisms to provide for the elderly population. The current study clearly shows the need to systematize home caregiving in Brazilian society.     

Help seeking for cardiac symptoms: Beyond the masculine–feminine binary

Empirical and theoretical literature suggests that stereotypical gender roles shape men’s and women’s health help-seeking behavior, and plays an important role in the treatment seeking delays of cardiac patients. We were interested in exploring the ways in which gender informs the experiences and help-seeking behavior of men and women who experienced the symptoms associated with acute cardiac events. We undertook 20 in-depth interviews between October 2007 and July 2008 with 11 men and 9 women recently diagnosed with an acute coronary syndrome in British Columbia, Canada. Participants were encouraged to tell their ‘story’ of the event that led to hospitalization and diagnosis, with a focus on the symptoms and decision making processes that occurred before and during the activation of health services: seeking the advice of others including colleagues, family members and healthcare professionals; calling 911; and attending an emergency department. Although we anticipated that distinctive patterns of help-seeking behavior aligned with stereotypical masculine and feminine ideals might emerge from our data, this was not always the case. We found some evidence of the influence of gender role ideology on the help-seeking behavior of both male and female participants. However, men’s and women’s experiences of seeking health care were not easily parsed into distinct binary gender patterns. Behavior that might stereotypically be considered to be ‘masculine’ or ‘feminine’ gender practice was shared by both male and female participants. Our findings undermine simple binary distinctions about gendered help-seeking prevalent in the literature, and contribute towards setting the direction of the future health policy and research agenda addressing the issue of gender and health help-seeking behavior.