Impacts of Perceived Choice on Physical Strain, Emotional Stress and Health among Caregivers.

BACKGROUND: Having no choice in becoming a caregiver has been associated with higher levels of emotional stress and physical strain. This secondary analysis examined associations between caregivers' perceived choice and health outcomes. METHODS: This study utilized data from caregivers who answered a question about whether they felt they had a choice to take on caring for a care recipient in the Caregiving in the U.S. in 2020 survey. Variables of caregivers' and recipients' characteristics, caregiving activities, and health outcomes were extracted. Data were analyzed using descriptive statistics, t-tests, Chi-squared tests, and regression models. RESULTS: More than half of the 1,642 caregivers (54.4%) perceived no choice in becoming a caregiver. Having no choice was associated with higher levels of physical strain and emotional stress, and greater negative impact on caregiver's health. Other predictive variables of higher physical strain included being a primary caregiver, recipients having more comorbidities, and a higher level of care intensity. Higher education level, household income, number of recipient's conditions, level of care intensity, and being a primary caregiver were associated with higher levels of emotional stress. Taking care of a spouse and non-relative compared to taking care of a grandparent or parent was associated with lower emotional stress. Recipients with more comorbidities and higher care intensity were associated with worse caregiver health. CONCLUSIONS: There is a need to screen and identify caregivers who have no choice in caregiving and assist them in providing care for their recipient to prevent them from being invisible patients.

Caregivers of Adults Living With Alzheimer's Disease or Dementia in 2020: A Secondary Analysis.

Caregiving for people living with Alzheimer's disease and related dementias (ADRD) can negatively impact caregivers' health and well-being. The purpose of this secondary analysis was to describe the characteristics of ADRD caregivers in the Caregiving in the U.S. 2020 dataset, and to compare caregiving activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and health care-related tasks between ADRD caregivers and non-ADRD caregivers. This study included 410 ADRD caregivers and 921 non-ADRD caregivers. ADRD caregivers reported higher levels of burden; a greater number of ADLs and IADLs performed for care recipients; higher emotional, physical, and financial strain; and more difficulty in taking care of their own health than non-ADRD caregivers. ADRD caregivers reported a greater level of lack of support from health care professionals and unmet needs for knowledge and resources for caregiving than non-ADRD caregivers. Developing a comprehensive ADRD care model and health policies is warranted to provide easier access to health care and community resources for caregivers' health and well-being. [Journal of Gerontological Nursing, 48(9), 15-25.].

Nursing research in caregivers of people with Parkinson's disease from 2011 to 2021: A scoping review.

The purpose of this scoping review was to assess the state of empirical research studies related to caregivers of people with Parkinson's Disease (PD) conducted by nurse scientists and their research teams during the 10-year period. A total of 29 studies were included in this review. Twenty-two studies (75.8%) were first authored by a nurse scientist. Eighteen studies (62%) were conducted by interdisciplinary teams. Caregiver burden/strain were the most studied variables (n = 12). Other variables were studied in less than five studies, including caregivers' needs/preferences, coping, caregiver support or support group, decision-making related PD caregiving, and interventions. Various research designs (e.g., qualitative, quantitative, and mixed methods) were utilized to answer the research questions in the included studies. Lack of the nursing intervention studies in PD caregiving suggests a need to develop evidence-based, multicomponent interventions to improve caregiver quality of life and better health outcomes to help caregivers provide caregiving for people with PD.

Immigrant Asian Indian Mothers' Experiences With Pregnancy, Childbirth, and Infant Care in the United States.

INTRODUCTION: The purpose of the study was to explore experiences of immigrant Asian Indian women with pregnancy, childbirth, and infant care in the United States. METHODOLOGY: This study employed a qualitative descriptive approach using semi-structured interviews and followed COREQ (COnsolidated criteria for REporting Qualitative research) guidelines for reporting qualitative research. Nine immigrant Asian Indian mothers residing in the mid-Atlantic region of the United States participated in the study. RESULTS: Four themes emerged: experiencing cultural differences during the perinatal period in the United States, choosing the best perinatal practices for maternal and infant care, recognizing family as the main support system, and having positive experiences with health care providers. DISCUSSION: Findings of this study shed light on the need for culturally appropriate care, including proper assessment of Asian Indian mothers' sociocultural aspects and cultural preferences and provision of support and information needed during the perinatal period.

Profile of social self-management practices in daily life with Parkinson's disease is associated with symptom severity and health quality of life.

PURPOSE: Social participation is a key determinant of healthy aging, yet little is known about how people with Parkinson's disease manage social living. This study describes individual differences in social self-management practices and their association with symptom severity and health quality of life. METHODS: People with Parkinson's disease (N = 90) completed measures of healthy routines, activities and relationships, symptom severity, and health related quality of life. Cluster analysis identified profiles of social self-management practices. Analysis of variance tested differences between profiles in symptom severity and health quality of life. RESULTS: Participants clustered into one of seven groups according to different combinations of three practices: health resources utilization, activities in home and community, and social support relationships. The healthiest cluster engaged equally in all three practices at above sample average degree of engagement. Four clusters that engaged at or above sample average in activities in home and community experienced less health problems than three clusters that engaged below average. Variation in aspects of social lifestyle unrelated to health appeared also to contribute to profile diversity. CONCLUSION: Findings provide insight into similarity and variation in how people with Parkinson's disease engage with social self-management resources and point to person-centered interventions.Implications for RehabilitationSocial self-management is a biopsychosocial construct to identify and describe self-care practices that engage one's social resources for managing healthful daily living.People with Parkinson's disease vary in their profiles of engaging in social self-management practices in daily living, and this variability relates to severity of symptoms and health quality of life.Learning how to identify health-centered social self-management practices may help people with Parkinson's disease to focus on the healthfulness of their own practices.Learning how to strategically engage one's social resources as part of self-care may help people with Parkinson's disease to master managing their health and well-being in daily life.

Key Activities of Caregivers for Individuals With Parkinson Disease: A Secondary Analysis.

BACKGROUND: Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers. METHODS: This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD. RESULTS: Fifty-four caregivers (32 women) were included. The mean (SD) age was 57.7 (16.9) years, and the sample included 57% White, 9% Black, 15% Asian, and 17% Hispanic caregivers. Relationships to care recipient were 32% spouses, 20% mothers, and 11% fathers, with the remaining being a variety of relationships. The number of ADLs and IADLs performed by the caregiver was 2.85 (SD, 2.18) and 4.72 (SD, 2.08), respectively. The most frequent ADLs were getting in and out of beds and chairs, getting dressed, getting to and from the toilet, and bathing/showering. The most frequent IADLs were transportation, shopping, managing finances, giving medicine, preparing meals, and housework. CONCLUSION: This study shows the number of ADLs and IADLs performed by a diverse group of PD caregivers and indicates the need to acknowledge the extensive work performed by caregivers.

My Whole World Changed: A Qualitative Exploration of the Coping Experiences of Transgender Women After an HIV Diagnosis.

The aim of this study was to generate a theoretical stage model that describes transgender women's coping strategies and responses after a new HIV diagnosis. The sample included 18 transgender women living with HIV in a large metropolitan city in central Indiana. Semi-structured interviews were conducted, digitally recorded, transcribed verbatim, and analyzed using grounded theory methods. Participants commonly described the experience of being newly diagnosed with HIV as, having the world change. Four stages through which attempts at coping occurred were identified: having the world come crashing down; shutting out the world; living in a dark world; and reconstructing the world. This model advances our understanding of the social and behavioral factors that influence how transgender women cope with a new HIV diagnosis and how their coping responses influence entry and engagement in the HIV care continuum.

Challenges Experienced by Parents of Emerging Young Adults With Type 1 Diabetes Mellitus During the Transition to College.

PURPOSE: The purpose of this study is to gain a deeper understanding of the challenges experienced by parents of emerging young adults (EYAs) with type 1 diabetes mellitus (T1DM) who completed their freshman or sophomore year of college. METHODS: Using a descriptive, qualitative design, 16 parents participated in semistructured interviews that explored factors impacting the college transition for parents of college freshmen and sophomores with T1DM. Participants were recruited from local endocrinology clinics as well as the College Diabetes Network (CDN) Parent Facebook page, the CDN Facebook page, the CDN Twitter feed, and the Delaware Chapter of the JDRF (formerly Juvenile Diabetes Research Foundation). Researchers used a thematic analysis to analyze the data and develop categories. Interviews were conducted and recorded via video conferencing from July 2019 to September 2019. RESULTS: Results represent data from 16 interviews comprising 15 (94%) mothers and 1 father. Thematic analysis resulted in the emergence of 3 themes: managing parental concerns, changes in the parental role, and identifying sources of parental support. Parents identified several challenges including the EYAs' ability to manage T1DM at college, communication with the EYA, and the availability of support for parents. CONCLUSION: Parents experience several challenges during their EYA's transition to college with T1DM. Supporting the needs of parents and EYAs during this time may serve to reduce diabetes-related complications for EYAs and increase overall quality of life for both members of the dyad.

"I've been to physical therapy before, but not for the knees." A qualitative study exploring barriers and facilitators to physical therapy utilization for knee osteoarthritis.

BACKGROUND: Physical therapy (PT) is recommended to reduce pain and improve function. However, only 10%-15% of adults with knee osteoarthritis (OA) use PT in the United States. The purpose of this study was to explore patient-reported barriers and facilitators to PT utilization for knee OA, to understand why PT is underutilized. METHODS: Qualitative descriptive study using semi-structured interviews was conducted, that is, one-on-one phone interviews with adults from local community centers. Participants were eligible if they were fluent in English and self-reported knee OA (1) over 45 years of age, (2) have activity-related knee pain, and (3) have no morning stiffness or morning stiffness in the knee(s) for ≤30 min. Interviews were audio-recorded and transcribed. To identify barriers and facilitators to PT utilization for knee OA, a coding framework, thematic analysis, and a constant comparative approach were used. RESULTS: Of 22 participants with health insurance and who participated, 59% were considering PT, 23% refused PT, and 18% used PT for knee OA. Themes identified as either barriers or facilitators for participants were (1) previous experience with PT, (2) physician referral, (3) beliefs about treatment efficacy before and after knee replacement surgery, (4) insurance coverage, and (5) preference to avoid surgery. CONCLUSION: A previous positive encounter with PT and a physician referral may facilitate PT utilization for adults with knee OA. Knowledge about and access to PT services were not identified as barriers related to PT utilization. Further research is necessary to confirm findings in a broader group of adults with knee OA.

Dyadic Decision-Making in Advanced Parkinson's Disease: A Mixed Methods Study.

People with advanced Parkinson's disease (PD) are living at home being cared for by a family member. Decisions about health care and living preferences are made in a family context. The aims of the study were to (a) examine the types and timing of the decisions being made by dyads (person with Parkinson's [PWP] and caregiver) in advanced PD; and (b) explore perceived decision quality relative to specific decisions made. A mixed methods design of semi-structured dyad interviews followed by individual completion of decision measures twice at six months apart was utilized. Decisions involved obtaining more services in the home, moving into assisted living communities, maintaining as is, and initiating hospice. There was high decision quality as reflected by low decisional conflict and regret without statistical differences within the dyad. The findings provide insight into the nature of decisions dyads face and suggest ways that health care providers can support decision-making.

Symptom progression in advanced Parkinson's disease: Dyadic perspectives.

This qualitative descriptive study investigated the self-reported symptoms of people with advanced Parkinson's disease. Fifteen dyads (person with Parkinson's and family caregiver) participated in two semi-structured interviews over a six-month time period; content analysis was used to explore the progression and new onset of symptoms. Reported symptoms in descending order included gait deterioration, falls, speech impairment, cognitive decline, functional decline, gastrointestinal and genitourinary changes, and swallowing impairment. The presence of multiple, compounding symptoms present challenges for maintaining safety in the home, highlighting the need for in-home services to assist with symptom management. Change in self-reported symptom experience was not significantly different after a six-month time frame. Symptom progression in advanced Parkinson's disease may take longer than six months to appreciatively manifest. Therefore, future research should explore the progression of advanced Parkinson's disease longitudinally over of period of time that exceeds six months.

They Just Don't Get Me: A Qualitative Analysis of Transgender Women's Health Care Experiences and Clinician Interactions.

Transgender individuals face many barriers when accessing health care, including having to teach clinicians how to care for them to receive appropriate care. We conducted a secondary analysis of qualitative data collected via semistructured interviews with 18 transgender women ranging in age from 21 to 60 years and living with HIV. Data were analyzed using conventional content analysis. Participants encountered two clinician types: Those who get me and Those who don't get me. Clinicians who get me provided gender-affirming care, fostered patient engagement, performed appropriate health screenings, and were willing to learn about transgender health. Clinicians who don't get me were aloof, uninterested, and unwilling to provide care. Clinicians who don't get me and system-level factors such as fragmented care, lack of insurance, and a low volume of transgender-competent clinicians contributed to transgender women's unmet health and education needs. Recommendations for improving transgender health care are provided.

The self-management balancing act of spousal care partners in the case of Parkinson's disease.

BACKGROUND: Living with and caring for someone with chronic illness can lead to limitations in activity and social participation for the care partner. Past research emphasizes the importance of care partners taking care of themselves physically and emotionally so they can stay healthy to support the care recipient. There is little information regarding how the care partner takes care of their own social lives. The purpose of this study was to explore the concept of social self-management from the perspective of spousal care partners of people with Parkinson's disease. METHOD: Twenty spousal care partners of people with Parkinson's disease were interviewed three times. A grounded theory approach informed data analysis. RESULTS: Findings that emerged from the data focused on balance in activities, support, and emotions and were summarized into three main themes: (1) Activities: Caregiving and beyond; (2) Strategies to support self and spouse; and (3) Emotional impact: Burden and compassion. CONCLUSION: This research shows that care partners want to retain social participation and provides support for the importance of addressing the socio-emotional needs of care partners of people with a chronic disease. Interventions that guide care partners to take care of their spectrum of needs may lead to healthier, positive relationships. Implications for rehabilitation The focus of rehabilitation is often on the person diagnosed with the chronic condition. Living with and caring for someone with a chronic illness, such as Parkinson's disease, can lead to limitations in activity and social participation for the care partner. Including care partners in the rehabilitation process is key to helping maintain their health and well-being. Learning caregiving and self-management strategies may help care partners support their loved ones while staying socially engaged.

Feasibility of Using PROMIS® in Individuals With Advanced Parkinson's Disease and Their Caregivers.

The purpose of the current study was to test the feasibility of using the Patient-Reported Outcomes Measurement Information System (PROMIS®) measures to assess change in self-reported health status for dyads of individuals with advanced Parkinson's disease (PD) and their caregivers. Fifteen dyads (N = 30) participated and took 11 PROMIS measures. The measures showed good reliability (all Cronbach's alphas > 0.82). Dyads reported worse health status than the PROMIS reference groups at baseline and 6-month follow up. Paradoxically, individuals with PD scored higher in Applied Cognition-General Concerns, Companionship, and Emotional Support than the reference groups at both times. The only domain that changed significantly for individuals with PD over 6 months was Applied Cognition-General Concerns. The results of this study suggest that future research (a) could use the PROMIS measures with dyads, and (b) would be warranted for tracking changes over time using the PROMIS measures with larger samples, garnering more power. In addition, future research could examine if the computer adaptive versions work for individuals with advanced PD. [Res Gerontol Nurs. 2018; 11(3):129-136.].

Beliefs About Use of Complementary Health Approaches for Parkinson's Disease.

Parkinson's disease (PD) is the second most common neurodegenerative disorder in the United States, which requires ongoing medication therapy. Despite the high prevalence of complementary health approaches (CHA) being used among people with PD in several countries, little is known about the perceived effectiveness, safety, and risk related to use of CHA. The purpose of this study was to describe CHA users' beliefs about the effectiveness, safety, and risk of CHA. A subsample (n = 70) of participants who reported using CHA and who completed all 12 items of the section of participants' beliefs were taken from a larger study (n = 143) that described the proportion of individuals who used CHA to manage PD symptoms. Participants reported that CHAs are somewhat effective to control or manage PD symptoms and necessary for PD management. However, they disagreed on possible adverse effects of CHAs and their potential interactions with prescription medications. Participants were willing to share their CHA use with their doctors and/or nurses and had a neutral response to the costs of CHA. More scientific evidence on effectiveness and safety/risk of CHA is needed to assist individuals' informed decision about using CHA and allocation of their health care spending. Nurses and other health care professionals need to be aware of CHA users' beliefs about CHA used for PD and of the need for provision of adequate information and resources, including locating qualified CHA practitioners or databases of CHA.

HIV Testing and Entry to Care Among Trans Women in Indiana.

Trans women in the United States are disproportionately affected by HIV infection. To improve HIV services for this population, more information is needed about their experiences in early stages of the HIV Care Continuum. Trans women in states such as Indiana, which has moderate HIV incidence but little public health investment in HIV prevention and treatment, experience special challenges. Our qualitative descriptive study describes the circumstances influencing HIV testing and entry to care by 18 trans women living with HIV in Central Indiana. In-depth interviews regarding participants' HIV care experiences were analyzed using standard content analysis. Participants discussed three main topics: (a) HIV testing circumstances, (b) facilitators and barriers to entering care, and (c) motivators for entering care after a delay. Findings indicate that social relationships play a significant role in trans women's care experiences and that stigma, discrimination, and adverse life circumstance are powerful deterrents to care. Practice and policy implications are discussed.

Nursing Research in Parkinson's Disease From 2006 to 2015.

Most people with Parkinson's disease (PD) reside in their homes with their family members. Nurses are in a good position to partner with people with PD and their family members for better self-management of the disease and improved quality of life. The purpose of this systematic review was to assess the state of the science of nursing research related to PD during the 10-year period, 2006 to 2015. A total of 27 studies were included in this review. Family caregiving was the most studied topic, followed by symptom management/medication adherence, quality of life, end-of-life/palliative care, and functional status/improving function. Recommendations for future studies in PD include (a) developing and testing interventions based on theoretical models in the areas of self-management, symptom management, and function improvement in people with PD and for caregivers caring for people with advanced stage PD, and (b) building programs of research with interprofessional teams.

Assessing the effectiveness of Wise Guys: A mixed-methods approach.

Previous research with teens raised questions on the validity of survey studies with this population. As one response, our team implemented a mixed-methods study to evaluate an evidence-based, interactive curriculum, Wise Guys, that is designed to promote healthy relationships and sexual behavior in young men 14-17 years of age. The current study included a Youth Advisory Group, focus groups, and a video-journaling project to delineate teens' thoughts on the most salient aspects of Wise Guys and we used these to develop a stakeholder-informed survey instrument. The survey was administered via REDCap, a computer-based medium via phones and mobile devices. Quantitative survey analyses revealed significant positive changes in study constructs. Qualitative interpretations provided rich data that validated the survey findings. Community engagement in the research process and mixed methods may provide the infrastructure for future research and evaluation efforts related to teens.

Preferences and concerns for care needs in advanced Parkinson's disease: a qualitative study of couples.

AIMS AND OBJECTIVES: To explore how couples with Parkinson's disease discuss their needs, concerns and preferences at the advanced stages of illness. BACKGROUND: The majority of care for people with Parkinson's disease is provided at home by family members. Parkinson's disease is characterised by a slow progressive decline with care needs often exceeding a decade. DESIGN: A descriptive qualitative study with 14 couples. METHODS: Data were collected on two occasions over a one-month period using semi-structured interviews, with both individual and couple interviews. Data were analysed thematically by the research team. RESULTS: All participants discussed the strong desire to remain in their homes for as long as possible. For the people with Parkinson's disease, placement to long-term facilities was not an option to be considered. For spouses, there was an acknowledgement there may come a time when they could no longer continue to provide care. Concerns regarding falls, choking, voice production, financial strain and need for prognostic information from providers were influences on what they believed the future would hold and the decisions they would need to make. CONCLUSIONS: The need for improved communication between providers and Parkinson's disease couples is evident. Interventions to support the couple in their discussions and decision-making regarding remaining in the home or not, and options to support advanced care needs are required. RELEVANCE TO CLINICAL PRACTICE: Nurses can help support decision-making by providing tangible information regarding the advanced stages of Parkinson's disease including adequate prognostic information.