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1.
Article in English | MEDLINE | ID: mdl-38502817

ABSTRACT

Children with cancer in low- and middle-income countries were disproportionately impacted by the COVID-19 pandemic, but little is known about how adolescents and young adults (AYAs) with cancer were affected. Sixty-seven physicians and nonphysician providers were interviewed about their experiences caring for AYAs with cancer in Latin America. Quotes related to the COVID-19 pandemic were identified and grouped into themes. Barriers from the COVID-19 pandemic included limited space, restrictions on travel, reduced funding, limited staff, limited services, and changes to treatment. However, improvements to care that arose from the COVID-19 pandemic included better access to distance learning and telemedicine.

2.
J Adolesc Young Adult Oncol ; 12(6): 923-928, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37699237

ABSTRACT

Chemotherapy can cause many distressing side effects, potentially impacting treatment completion and quality of life in adolescent and young adult (AYA) patients with cancer. To identify ways to help mitigate chemotherapy-related symptoms, we sought to elicit barriers and facilitators to managing symptoms experienced by AYAs with cancer through interviews. Qualitative thematic analysis identified three main domains: (1) managing chemotherapy symptoms (e.g., medication, home remedies), (2) anticipating and mitigating symptoms (e.g., management of symptoms at home, anticipatory guidance), and (3) knowing when to seek care (e.g., unexpected and unusual symptoms). This study elucidated that AYAs can successfully manage symptoms at home when given the proper guidance and this could be a focus of future efforts to improve outcomes in this population. The Clinical Trial Registration number is NCT04594096.


Subject(s)
Neoplasms , Quality of Life , Humans , Adolescent , Young Adult , Neoplasms/drug therapy
3.
Article in English | MEDLINE | ID: mdl-37227854

ABSTRACT

OBJECTIVES: Older Vietnamese adults are among the most underserved groups in the United States, despite being at high risk for stress and other negative experiences (e.g., access to same-language practitioners, transportation barriers, lack of health care). Minimal progress has been made in decreasing treatment barriers for this underserved population. One promising approach involves using indigenous, culturally based interventions to enhance psychological and physical well-being. Such interventions may reduce utilization and quality of care disparities because they emphasize a more holistic approach to health, thereby limiting the shame and face loss often experienced due to the stigma associated with mental illness. The present study examined the efficacy of lishi, a traditional East Asian movement form of exercise, in promoting mental and physical health outcomes for older Vietnamese immigrant adults. METHOD: Seventy-one older Vietnamese adults participated in this randomized waitlist control study. Participants were between 60 and 75 years old. Multivariate analysis of covariance was used to determine posttest outcomes differences between the intervention and control groups. RESULTS: Intervention group participants experienced significantly higher levels of self-efficacy and physical energy, less bodily pains, and better body balance at posttest compared to the control group. CONCLUSIONS: Lishi may be an effective culturally valid intervention for older Vietnamese adults and demonstrated promise at engaging this hard-to-reach population in treatment and services. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

4.
Vaccine X ; 11: 100162, 2022 Aug.
Article in English | MEDLINE | ID: mdl-35492506

ABSTRACT

Despite a national vaccination effort prioritizing frontline healthcare workers, COVID-19 vaccination rates among nurses have been lower than necessary to protect workforce and patient health. Historically, nurses have been more vaccine hesitant than other healthcare workers. To assess the vaccine attitudes and COVID-19 vaccine intent of California's registered nurses, we conducted a statewide cross-sectional survey among 603 licensed RNs working in direct patient care. Of 167 respondents (27.7%), 111 met inclusion criteria. Their mean score of 3.01 on a 6-point rating scale on the Vaccine Attitudes Examination scale measuring general vaccine hesitancy was comparable to previous findings among U.S. West Coast adults. Greater vaccine hesitancy was significantly associated with lower COVID-19 vaccine intent, after controlling for relevant confounders. Since nurses make up the largest portion of the healthcare workforce, it is crucial to specifically address this group's vaccine hesitancy.

5.
Ann Thorac Surg ; 110(6): 1840-1846, 2020 12.
Article in English | MEDLINE | ID: mdl-32707197

ABSTRACT

BACKGROUND: Lung cancer surgery has a significant impact on health-related quality of life (HRQOL). In prior studies of HRQOL after lung cancer surgery, researchers selected the HRQOL domains of interest. To increase the patient-centeredness of these studies, we conducted a qualitative study to ascertain which aspects of HRQOL are most relevant to them postoperatively and to identify Patient-Reported Outcome Measurement Information System measures most germane to patients undergoing lobectomy for lung cancer. METHODS: We conducted in-depth semistructured interviews with 25 patients after lobectomy for lung cancer to solicit input regarding the physical, social, and emotional HRQOL domains relevant after surgery. Interviews were transcribed verbatim, and a thematic content analysis to identify HRQOL themes was performed. Themes were integrated to create a conceptual framework to guide outcome measurement selection. RESULTS: Qualitative analysis indicated that within the physical health domain, patients were most concerned about general physical function (100% of participants), pain (96%), fatigue (96%), and dyspnea (76%). Neuropathic pain was reported by 28% of participants. Instrumental (100%) and emotional social support (88%) and positive emotions/relief/hope (96%) were also important. Two cross-cutting themes were the desire to maintain independence (32%) and preparing for surgery/expectations (92%). CONCLUSIONS: Our results indicate that a number of physical, social, and emotional HRQOL domains are relevant after lobectomy for lung cancer. These domains are currently represented by Patient-Reported Outcome Measurement Information System measures and can be readily assessed for clinical or research purposes.


Subject(s)
Lung Neoplasms/surgery , Patient Reported Outcome Measures , Pneumonectomy , Quality of Life , Adult , Aged , Aged, 80 and over , Cohort Studies , Emotions , Female , Health Status , Humans , Lung Neoplasms/psychology , Male , Middle Aged , Qualitative Research , Recovery of Function
6.
Soc Sci Med ; 256: 113026, 2020 07.
Article in English | MEDLINE | ID: mdl-32474392

ABSTRACT

The dementia care literature in the home is vast, particularly in the health sciences where the focus remains on intervention to address carer emotional distress and burden. The sociological literature on dementia care has primarily utilized the illness disruption and (bio)medicalization models to show how meaning and practices are negotiated in the non-expert setting. Instead, I apply a feminist labor process perspective to examine the question of why women dementia kin carers resist relinquishing care responsibilities to others. This qualitative grounded theory study is based on seven waves of interviews (total = 98) conducted over approximately five years with 15 Latina dementia kin carers recruited through clinic and community sites in Northern California. Findings show how Latina kin carers exercise a degree of control and autonomy over the care process because they have developed tacit knowledge and skills to craft quality care of kin. In facing the dilemma of ceding care to others they perceive as unprepared, they reject available help. This study reveals how carers maintain quality care with dignity and comfort for the care recipient and themselves.


Subject(s)
Caregivers , Dementia , Adult , Aged , Child , Cross-Sectional Studies , Dementia/therapy , Family , Female , Humans , Middle Aged , Qualitative Research
7.
Nurs Inq ; 27(3): e12349, 2020 07.
Article in English | MEDLINE | ID: mdl-32154647

ABSTRACT

Social justice is put forth as a core professional nursing value, although conceptualizations within foundational documents and among nurse educators remain inconsistent and contradictory. The purpose of this study was to explore how faculty teach social justice in theory courses in Baccalaureate programs. This qualitative study utilized constructivist grounded theory methods to examine processes informing participants' teaching. Participants utilize four overarching approaches: fostering engaging classroom climates, utilizing various naming strategies, framing diversity and culture as social justice, and role modeling a critical stance. They deploy specific strategies, varying largely by race, educational background, and nursing specialty. A background in social sciences supports pedagogy that interrogates health inequities rather than merely raising awareness about disparities. Findings also reveal that faculty of color navigate institutional structures predicated upon colorblind racism and problematic views of culture, which many white faculty teaching non-Community Health Nursing courses described doing. To enact social justice and be answerable to our communities, concerted anti-oppression efforts are needed across education, research, practice, and policy. This includes sustained commitment to address colonialism and whiteness in every institution that defines, promotes, and claims to advance nursing so that we can fulfill our responsibility to address unjust systems and structures to serve our communities.


Subject(s)
Education, Nursing, Baccalaureate/standards , Faculty, Nursing/psychology , Social Justice/psychology , Education, Nursing, Baccalaureate/methods , Female , Humans , Male , Middle Aged , Qualitative Research , Racism/prevention & control , Racism/psychology , Social Justice/standards
8.
Gerontologist ; 60(Suppl 1): S29-S40, 2020 02 14.
Article in English | MEDLINE | ID: mdl-32057080

ABSTRACT

This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.


Subject(s)
Caregivers/psychology , Dementia/nursing , Research Design , Humans , Quality of Life
9.
Gerontologist ; 60(Suppl 1): S41-S49, 2020 02 14.
Article in English | MEDLINE | ID: mdl-32057082

ABSTRACT

An array of technology-based interventions has increasingly become available to support family caregivers, primarily focusing on health and well-being, social isolation, financial, and psychological support. More recently the emergence of new technologies such as mobile and cloud, robotics, connected sensors, virtual/augmented/mixed reality, voice, and the evermore ubiquitous tools supported by advanced data analytics, coupled with the integration of multiple technologies through platform solutions, have opened a new era of technology-enabled interventions that can empower and support family caregivers. This paper proposes a conceptual framework for identifying and addressing the challenges that may need to be overcome to effectively apply technology-enabled solutions for family caregivers. The paper identifies a number of challenges that either moderate or mediate the full use of technologies for the benefit of caregivers. The challenges include issues related to equity, inclusion, and access; ethical concerns related to privacy and security; political and regulatory factors affecting interoperability and lack of standards; inclusive/human-centric design and issues; and inherent economic and distribution channel difficulties. The paper concludes with a summary of research questions and issues that form a framework for global research priorities.


Subject(s)
Caregivers , Technology/methods , Telemedicine/methods , Humans
10.
Policy Polit Nurs Pract ; 20(4): 239-251, 2019 Nov.
Article in English | MEDLINE | ID: mdl-31619145

ABSTRACT

Despite institutional claims that social justice is a core professional nursing value, efforts to fulfill this claim remain uneven. The purpose of this study was to examine the circumstances that shape nursing educators' approaches to social justice. In-depth semi-structured interviews with 28 educators teaching theory courses in baccalaureate nursing programs shed light upon the influences that shape how educators integrate social justice. These include formative experiences, institutional factors, and curricular opportunities. Formative experiences include upbringing, educational background, and preparation to teach. Institutional factors consist of the type of institution, geographic location, and the specter of retention, promotion, and tenure. Finally, curricular opportunities and fit include the positioning of Community Health Nursing, fragmentation and tension between "content and context," and the "driving force" of the National Council Licensure Examination for Registered Nurses (NCLEX). Findings indicate that the capacity to uphold the value of social justice is shaped by experiences across the lifespan, institutional policies, and practices related to faculty hiring, development, career advancement, as well as curricular vision. This study calls for a concerted effort to enact social justice nursing education.


Subject(s)
Curriculum , Education, Nursing, Baccalaureate/ethics , Faculty, Nursing/psychology , Social Justice/education , Female , Humans , Male , Middle Aged , Organizational Policy , Social Values , Socioeconomic Factors
11.
Int J Geriatr Psychiatry ; 34(12): 1808-1814, 2019 12.
Article in English | MEDLINE | ID: mdl-31414506

ABSTRACT

OBJECTIVE: Families provide considerable support to many older adults with depression, yet few intervention studies have sought to include them. Family participation in depression treatment aligns with the preferences of older men, a group at high risk for depression under treatment. This study examined the feasibility of a family-centered depression intervention for older men in a primary care setting. METHODS: A clinical trial was conducted in a Federally Qualified Health Center (FQHC) in California's Central Valley. Depressed older men (age 50 and older) were allocated to usual care enhanced by depression psychoeducation or a family-centered depression intervention delivered by a licensed clinical social worker. Intervention feasibility was assessed in terms of recruitment, retention, and extent of family engagement. The PHQ-9 was administered at baseline, 1, 3, and 6 months. RESULTS: For more than 6 months, 45 men were referred to the study; 31 met the inclusion criteria, 23 were successfully enrolled, and 20 (88%) participated in more than or equal to one treatment sessions. Overall, 85% (11 of 13) of men allocated to the intervention engaged a family member in more than or equal to one session and 54% (7 of 13) engaged the family member in more than or equal to three sessions. While men in both groups showed evidence of a significant decline in PHQ-9 scores early on, which attenuated over time, there were no significant between group differences. CONCLUSIONS: Our family-centered depression intervention showed acceptable feasibility on the basis of a variety of parameters. Future research on family-based approaches may benefit from longer duration and more intensive treatment as well as additional strategies to overcome recruitment barriers.


Subject(s)
Depressive Disorder/therapy , Family , Primary Health Care/methods , Psychotherapy/methods , Aged , California , Family/psychology , Feasibility Studies , Humans , Male
12.
Public Health Nurs ; 36(5): 735-743, 2019 09.
Article in English | MEDLINE | ID: mdl-31168869

ABSTRACT

OBJECTIVE: The purpose of this study was to explore nurse educators' conceptualizations of social justice in theory courses. The findings contextualize the role of nurse educators in promoting social justice among future health care providers and the relevance of their perspectives on social justice. DESIGN: This descriptive qualitative study was completed utilizing constructivist grounded theory methods. SAMPLE AND MEASUREMENTS: I interviewed 28 nurse educators teaching theory courses in Baccalaureate nursing programs on the West coast of the United States. Initial and focused codes were constructed from interview transcripts to understand and contextualize statements about social justice. RESULTS: Participants' conceptualizations of social justice include equity, equality, self-awareness, withholding judgment, and taking action. CONCLUSIONS: Notable differences emerged along racial lines and, less so, in relation to educational background and nursing specialty. This study highlights areas of concern with respect to how nurse educators enact the claim that social justice is a core professional nursing value. The findings call attention to tensions and contradictions as individuals navigate the landscape of nursing with limited structural and institutional effort.


Subject(s)
Education, Nursing/methods , Faculty, Nursing/statistics & numerical data , Social Justice/statistics & numerical data , Education, Nursing, Baccalaureate , Female , Humans , Male , Middle Aged , Qualitative Research , Social Justice/psychology , Students, Nursing/statistics & numerical data , United States
13.
J Sch Nurs ; 35(6): 412-421, 2019 Dec.
Article in English | MEDLINE | ID: mdl-30012071

ABSTRACT

Despite a well-documented need for school health programs (SHPs) among schoolchildren, there is little school health funding in California and limited research on the role of those who manage SHPs. This qualitative study investigated the work of a selected group of school health administrators (SHAs) in California. Study aims were to explore SHA job pathways and responsibilities, the contextual factors influencing their work, and how they get their work done, given limited funding for SHPs. Thirty in-depth, semistructured interviews were conducted with SHAs and their staff, supervisors, and deputy SHAs. The main themes and subthemes are (1) district hierarchies marginalize SHAs and (2) in response to this marginalization, SHAs engage in brokering strategies to get their work done, including (a) raising awareness, (b) cultivating powerful allies, and (c) adjusting to working conditions. Despite structural disempowerment, SHAs have developed strategies to secure political support for SHPs and school nurses.


Subject(s)
Administrative Personnel/psychology , Health Promotion/organization & administration , Professional Role/psychology , School Health Services/organization & administration , School Nursing/organization & administration , Adult , Attitude to Health , California , Female , Humans , Male , Middle Aged
14.
Crisis ; 39(5): 397-405, 2018 Sep.
Article in English | MEDLINE | ID: mdl-29618265

ABSTRACT

BACKGROUND: Suicide rates in older men are higher than in the general population, yet their utilization of mental health services is lower. AIMS: This study aimed to describe: (a) what primary care providers (PCPs) can do to prevent late-life suicide, and (b) older men's attitudes toward discussing suicide with a PCP. METHOD: Thematic analysis of interviews focused on depression and suicide with 77 depressed, low-socioeconomic status, older men of Mexican origin, or US-born non-Hispanic whites recruited from primary care. RESULTS: Several themes inhibiting suicide emerged: it is a problematic solution, due to religious prohibition, conflicts with self-image, the impact on others; and, lack of means/capacity. Three approaches to preventing suicide emerged: talking with them about depression, talking about the impact of their suicide on others, and encouraging them to be active. The vast majority, 98%, were open to such conversations. An unexpected theme spontaneously arose: "What prevents men from acting on suicidal thoughts?" CONCLUSION: Suicide is rarely discussed in primary care encounters in the context of depression treatment. Our study suggests that older men are likely to be open to discussing suicide with their PCP. We have identified several pragmatic approaches to assist clinicians in reducing older men's distress and preventing suicide.


Subject(s)
Attitude to Health , Depressive Disorder/psychology , Men/psychology , Primary Health Care , Suicide Prevention , Aged , Cross-Sectional Studies , Humans , Male , Middle Aged , Patient Participation , Poverty , Qualitative Research , Religion , Role , Self Concept
16.
BMC Fam Pract ; 18(1): 88, 2017 Sep 29.
Article in English | MEDLINE | ID: mdl-28962555

ABSTRACT

BACKGROUND: Family members often play important roles in the lives of depressed older men and frequently attend primary care visits with their loved ones, yet surprisingly little is known about how to most effectively engage and include family members in depression treatment. However, including family in depression treatment may be difficult due to several factors, such as depression stigma and family conflicts. The objective of this study was to describe challenges in engaging family members in older men's depression treatment and potential strategies to overcome those challenges. METHODS: A cross-sectional, qualitative descriptive interview study was conducted in a safety-net, Federally Qualified Health Center in California's Central Valley. A total of 37 stakeholders were recruited, including 15 depressed older (i.e. age ≥ 60) men, 12 family members, and 10 clinic staff. Depressed men were identified through mail outreach, waiting room screening, and referral. Depressed men identified family members who were later approached to participate. We also recruited a purposeful sample of clinic staff. Interviews explored stakeholder perspectives on family involvement in men's depression treatment as part of a primary care intervention. Interviews were conducted using a semi-structured interview guide, tape-recorded, transcribed verbatim, and translated if the interview was conducted in Spanish. RESULTS: Four themes were identified representing core challenges: engaging men at the right time; preserving men's sense of autonomy; managing privacy concerns; and navigating family tensions. Stakeholders also provided practical suggestions and advice about how each of these challenges might be addressed. CONCLUSIONS: While engaging family is a promising approach to strengthen depression care for older men in primary care settings, several potential challenges exist. Family- centered depression intervention development and clinical practice need to anticipate these challenges and to develop approaches and guidelines to address them.


Subject(s)
Depression/therapy , Depressive Disorder/therapy , Family , Men/psychology , Primary Health Care/methods , California , Cross-Sectional Studies , Depression/diagnosis , Depression/psychology , Depressive Disorder/diagnosis , Depressive Disorder/psychology , Family Conflict , Humans , Male , Mass Screening , Middle Aged , Qualitative Research , Referral and Consultation , Social Stigma
17.
Rural Remote Health ; 17(3): 4202, 2017.
Article in English | MEDLINE | ID: mdl-28992713

ABSTRACT

INTRODUCTION: Although the association between child mortality and socioeconomic status is well established, the role of household assets as predictors of child mortality, over and above other measures of socioeconomic status, is not well studied in developing nations. This study investigated the contribution of several household resources to child mortality, beyond the influence of maternal education as a measure of socioeconomic status. METHODS: This secondary analysis used data from the 2007 Ghana Maternal Health Survey to explore the relationship of child mortality to household resources. The analysis of 7183 parous women aged 15-45 years examined household resources for their association with maternal reports of any child's death for children aged less than 5 years using a survey-weighted logistic regression model while controlling for sociodemographic and health covariates. RESULTS: The overall household resources index was significantly associated with the death of one or more child in the entire sample (adjusted odd ratios (OR)=0.95; 95% confidence interval (CI): 0.92, 0.98]. In stratified analysis, this finding held for women living in rural but not in urban areas. Having a refrigerator at the time of interview was associated with lower odds of reporting child mortality (OR=0.63; 95%CI: 0.48, 0.83). Having a kerosene lantern (OR=1.40; 95%CI: 1.06, 1.85) or flush toilet (OR=1.84; 95%CI: 1.23, 2.75) was associated with higher odds of reporting child mortality. Adjusted regression models showed only possession of a refrigerator retained significance. CONCLUSIONS: Possession of a refrigerator may play a role in child mortality. This finding may reflect unmeasured socioeconomic status or the importance of access to refrigeration in preventing diarrheal disease or other proximal causes of child mortality in sub-Saharan Africa.


Subject(s)
Child Mortality , Data Collection/methods , Health Surveys/methods , Infant Mortality , Adolescent , Adult , Child, Preschool , Developing Countries , Female , Ghana/epidemiology , Humans , Infant , Infant, Newborn , Rural Population/statistics & numerical data , Social Determinants of Health , Socioeconomic Factors , Young Adult
18.
Soc Sci Med ; 188: 51-59, 2017 09.
Article in English | MEDLINE | ID: mdl-28732235

ABSTRACT

Older adults consume the most prescription medication in the U.S. For those who develop Alzheimer's disease, risk of medication misuse increases with the progression of the disease. Family members commonly intervene to lessen risks by taking over the management and administering of a medication regimen. Despite the potential for grave harm around the misuse of powerful drugs, few studies provide insight into the household social context of medication use for this disease. Drawing on 60 in-depth interviews conducted in four waves over 2.5 years, this study investigates how family members administered prescription and over-the-counter medications to elders with Alzheimer's. The findings detail how family members initially created and enacted the role of proxy-administrator to avoid self-administration errors and then expanded the role to manage disruptive behaviors. During this process, family members perceived themselves as working in partnership with doctors, especially in the effort to craft a regimen that controlled the affected individual's mood and sleep/wake cycle. The paper concludes by discussing the implications that family members used medications to improve conformity to a preferred household social order. The study offers conceptual advances in understanding 1) the process of proxy-administration in Alzheimer's care and 2) the role of proxy-administrators in the medicalization of deviant behavior.


Subject(s)
Alzheimer Disease/drug therapy , Family/psychology , Medication Adherence , Adult , Aged , Aged, 80 and over , Alzheimer Disease/complications , California , Female , Grounded Theory , Humans , Male , Middle Aged , Patient Safety/standards , Prescription Drugs/therapeutic use , Qualitative Research
19.
J Cross Cult Gerontol ; 30(3): 305-18, 2015 Sep.
Article in English | MEDLINE | ID: mdl-26208782

ABSTRACT

Older men are less likely than older women to receive depression treatment. Latino older men in particular have been found to have significantly lower rates of depression treatment than their white-non-Mexican (WNM) counterparts. Prior research has shown that men are less likely than women to express overt affect and/or report depression symptoms that may prompt primary care physicians' inquiry about depression. Previous studies have overlooked the idioms of distress common among older men. This study investigates: a) the range of idioms of distress that emerge in the narratives of depressed older men, and b) the use of these idioms among depressed WNM and Mexican-origin older men. The present report is based on qualitative data collected through the Men's Health and Aging Study (MeHAS), a mixed-method study of clinically depressed WNM and Mexican-origin older (65 and above) men recruited in primary care settings. Qualitative analysis of 77 interviews led to identification of idioms of distress and informed idiom categories. Study findings show that: a) both groups of men utilized a range of idioms of distress that met current DSM criteria for depression, b) both groups were also likely to utilize idioms that feel outside clinical depression criteria, and c) there were similarities as well as differences between WNM and Mexican-origin men. This study provides a larger vocabulary that clinicians might consider in recognizing depression and initiating depression care for older men from diverse ethnic backgrounds. This is important to improve depression care among older men in general and those of Mexican-origin in particular.


Subject(s)
Communication , Depression/ethnology , Depression/psychology , Mexican Americans/psychology , White People/psychology , Aged , Aging , California , Humans , Interviews as Topic , Male , Mexican Americans/statistics & numerical data , Middle Aged , Narration , Qualitative Research , Surveys and Questionnaires , White People/statistics & numerical data
20.
Soc Sci Med ; 130: 107-14, 2015 Apr.
Article in English | MEDLINE | ID: mdl-25697634

ABSTRACT

Most dementia research investigates the social context of declining ability through studies of decision-making around medical treatment and end-of-life care. This study seeks to fill an important gap in research about how family members manage the risks of functional decline at home. Drawing on three waves of in-depth interviewing in 2012-2014, it investigates how family members in US households manage decline in an affected individual's natural range of daily activities over time. The findings show that early on in the study period affected individuals were perceived to have awareness of their decline and routinely drew on family members for support. Support transformed when family members detected that the individual's deficit awareness had diminished, creating a corresponding increase in risk of self-harm around everyday activities. With a loss of confidence in the individual's ability to regulate his or her own activities to avoid these risks, family members employed unilateral practices to manage the individual's autonomy around his or her activity involvements. These practices typically involved various deceits and ruses to discourage elders from engaging in activities perceived as potentially dangerous. The study concludes by discussing the implications that the social context of interpretive work around awareness and risk plays an important role in how families perceive an elder's functional ability and manage his or her activity involvements.


Subject(s)
Adaptation, Psychological , Alzheimer Disease/physiopathology , Family , Personal Autonomy , Risk Reduction Behavior , Adult , Aged , Aged, 80 and over , Awareness , Caregivers , Emotions , Female , Humans , Interviews as Topic , Male , Middle Aged , Retrospective Studies
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