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.

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.].

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.

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.

Use of Complementary Health Approaches in Individuals With Parkinson's Disease.

Parkinson's disease (PD) is neurodegenerative and requires ongoing therapy. The purpose of the current study was two-fold: to (a) describe the prevalence, types, and associated factors of complementary health approaches (CHA) used in individuals with PD; and (b) explore reasons for CHA use. A self-administered, cross-sectional survey was used. The response rate was 61.9% (N = 135), and 74.1% of participants used CHA for either PD or general health. The most widely used CHA included exercise, yoga, massage, vitamins, coenzyme Q10, and coconut oil. Higher levels of education and treatment by a movement disorder specialist were significantly related to CHA use. Nurses and other health care professionals may have a role in providing safe care for individuals with PD. Further studies on effectiveness and safety of commonly used CHA are warranted. [Journal of Gerontological Nursing, 43(2), 46-54.].

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.

Comparing treatment fidelity between study arms of a randomized controlled clinical trial for stroke family caregivers.

OBJECTIVE: To compare treatment fidelity among treatment arms in the Telephone Assessment and Skill-Building Kit study for stroke caregivers (TASK II) with respect to: 1) protocol adherence; 2) intervention dosage and 3) nurse intervener perspectives. DESIGN: A randomized controlled clinical trial design. SETTING: Urban, community, midwestern United States. SUBJECTS: A total of 254 stroke caregivers (mean ±SD age, 54.4 ±11.8 years), 55 (22.0%) males and 199 (78.4%) females) randomized to the TASK II intervention (n=123) or an Information, Support, and Referral comparison group (n=131). INTERVENTIONS: TASK II participants received the TASK II Resource Guide; Information, Support, and Referral participants received a standard caregiver brochure. At approximately 8 weeks after discharge, both groups received 8 weekly calls from a nurse, with a booster call 4 weeks later. MEASURES: Protocol adherence was evaluated with the TASK II Checklist for Monitoring Adherence. Intervention dosage was measured by the number of minutes caregivers spent reading materials and talking with the nurse. Nurse intervener perspectives were obtained through focus groups. RESULTS: Protocol adherence was 80% for the TASK II and 92% for the Information, Support, and Referral. As expected, intervention dosage differed between TASK II and Information, Support, and Referral with respect to caregiver time spent reading materials (t=-6.49; P<.001) and talking with the nurse (t=-7.38; P<.001). Focus groups with nurses yielded further evidence for treatment fidelity and recommendations for future trials. CONCLUSIONS: These findings substantiate treatment fidelity in both study arms of the TASK II stroke caregiver intervention trial (NIH R01NR010388; ClinicalTrials.govNCT01275495).

Initiation of medications for Parkinson's disease: a qualitative description.

AIMS AND OBJECTIVES: To understand experiences of people with Parkinson's disease to initiate medication therapy for Parkinson's disease. BACKGROUND: Nonadherence to medication regimens and reluctance to initiate medication therapy among people with Parkinson's disease has been documented in previous research. However, little is known about experiences and decisions of people with Parkinson's disease to initiate antiparkinsonian medications and their beliefs or levels of understanding of antiparkinsonian medications in the USA. DESIGN: An exploratory, descriptive qualitative study was employed. METHODS: Semi-structured interviews were conducted with 16 community-dwelling individuals with Parkinson's disease (69% male) and five family caregivers (40% male). Data analysis was performed using content analysis. RESULTS: Two domains emerged from the data: decision-making to initiate antiparkinsonian medications as prescribed and reasons to delay initiation of levodopa to a later stage of Parkinson's disease. CONCLUSIONS: Acceptance of antiparkinsonian medications at the early stage of Parkinson's disease was influenced by the trusting relationship between participants and their health care provider. Fear of levodopa's long-term side effects led to acceptance of non-levodopa therapies first. Complementary and Alternative Medicine was used to manage Parkinson's disease symptoms among participants who delayed antiparkinsonian medication therapy. RELEVANCE TO CLINICAL PRACTICE: Nurses may have a role to assess individuals' beliefs and concerns about antiparkinsonian medication therapy and to provide adequate information to assist with the decision about Parkinson's disease symptom management.

Telephone Assessment and Skill-Building Kit for Stroke Caregivers: A Randomized Controlled Clinical Trial.

BACKGROUND AND PURPOSE: There are few evidence-based programs for stroke family caregivers postdischarge. The purpose of this study was to evaluate efficacy of the Telephone Assessment and Skill-Building Kit (TASK II), a nurse-led intervention enabling caregivers to build skills based on assessment of their own needs. METHODS: A total of 254 stroke caregivers (primarily female TASK II/information, support, and referral 78.0%/78.6%; white 70.7%/72.1%; about half spouses 48.4%/46.6%) were randomized to the TASK II intervention (n=123) or to an information, support, and referral group (n=131). Both groups received 8 weekly telephone sessions, with a booster at 12 weeks. General linear models with repeated measures tested efficacy, controlling for patient hospital days and call minutes. Prespecified 8-week primary outcomes were depressive symptoms (with Patient Health Questionnaire Depressive Symptom Scale PHQ-9 ≥5), life changes, and unhealthy days. RESULTS: Among caregivers with baseline PHQ-9 ≥5, those randomized to the TASK II intervention had a greater reduction in depressive symptoms from baseline to 8, 24, and 52 weeks and greater improvement in life changes from baseline to 12 weeks compared with the information, support, and referral group (P<0.05); but not found for the total sample. Although not sustained at 12, 24, or 52 weeks, caregivers randomized to the TASK II intervention had a relatively greater reduction in unhealthy days from baseline to 8 weeks (P<0.05). CONCLUSIONS: The TASK II intervention reduced depressive symptoms and improved life changes for caregivers with mild to severe depressive symptoms. The TASK II intervention reduced unhealthy days for the total sample, although not sustained over the long term. CLINICAL TRIAL REGISTRATION: URL: https://www.clinicaltrials.gov. Unique identifier: NCT01275495.

Challenges and strategies of medication adherence in Parkinson's disease: A qualitative study.

Little is known about strategies used by people with Parkinson's disease (PD) to facilitate medication adherence in the U.S. The purpose of this study was to describe challenges in adherence to medication regimens and to identify strategies used to facilitate adherence to medication regimens. A qualitative research design was used to interview sixteen community-dwelling people with PD and five caregivers. Data analysis was performed using content analysis. The majority of the participants (81.3%) reported decreased adherence to medication regimens. Seven themes emerged from the data. The main challenges of medication adherence included medication responses, cost of medications, and forgetfulness. Strategies used to facilitate adherence to medication regimens included seeking knowledge about antiparkinsonian medications, seeking advice from family and friends, use of devices, and use of reminders. These findings may be important in formulating interventions to improve adherence to medication regimens for people living with PD.

Emergence and evolution of social self-management of Parkinson's disease: study protocol for a 3-year prospective cohort study.

BACKGROUND: Parkinson's disease affects facial, vocal and trunk muscles. As symptoms progress, facial expression becomes masked, limiting the person's ability to communicate emotions and intentions to others. As people with the disease live and reside in their homes longer, the burden of caregiving is unmitigated by social and emotional rewards provided by an expressive individual. Little is known about how adults living with Parkinson's disease manage their social lives and how an inability to be emotionally expressive can affect social connections and health. Because social networks have been shown to be crucial to the overall well-being of people living with chronic diseases, research is needed on how expressive capacity affects life trajectories and health. METHODS/DESIGN: The overall objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson's disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes. The specific aims of this 3-year longitudinal study of 120 people with the disease and a maximum of 120 care partners are: 1) characterize social self-management trajectories over a 3-year period; 2) estimate the degree to which expressive nonverbal capacity predicts the trajectory; and 3) determine the moderating effect of gender on the association between expressive capacity and change in social self-management. Each participant will be assessed 14 times to detect rapid and non-linear changes in social participation and management of social activities; social network; and social comfort, general health and well-being. DISCUSSION: This project will provide evidence to guide the development of interventions for supporting social integration of those living with Parkinson's disease, thus leading to improved overall health. It focuses on the novel construct of social self-management and known factors-expressive capacity and gender-that contribute to stigmatization. The repeated measures design detects triggers of rapid changes in social and health outcomes.

Task difficulty and life changes among stroke family caregivers: relationship to depressive symptoms.

OBJECTIVES: To investigate differences in stroke caregiver task difficulty and life changes based on level of caregiver depressive symptoms, and to estimate probabilities among task difficulty and life change items. DESIGN: Descriptive analysis of baseline data from an ongoing stroke caregiver intervention trial. SETTING: Hospitals and rehabilitation facilities. PARTICIPANTS: Caregivers (N=242; 78.6% women; 47.7% spouses; 71.8% white; mean age, 54.2±12.1y) caring for stroke survivors within 8 weeks of discharge to home. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Baseline measures for task difficulty (Oberst Caregiving Burden Scale) and life changes (Bakas Caregiving Outcomes Scale) were compared based on level of depressive symptoms (Patient Health Questionnaire-9 [PHQ-9] scores <5 means no depressive symptoms; n=126; PHQ-9 scores ≥5 means mild to severe depressive symptoms, n=116). Mean scores were analyzed using general linear modeling, with item analyses using logistic regression and the Benjamini-Hochberg method to control type I error inflation. RESULTS: Caregivers with mild to severe depressive symptoms have greater difficulty with tasks and worse life changes than those with no depressive symptoms (P<.001). Odds ratios were highest for the task of arranging care while away and for negative life changes (eg, addressing self-esteem, coping with stress, physical health). CONCLUSIONS: Findings underscore the importance of depressive symptom screening for stroke caregivers during or shortly after discharge. Assisting caregivers with depressive symptoms to arrange for respite care and addressing negative physical and psychological changes may be priority areas for future interventions.

Mid-Atlantic primary care providers' perception of barriers and facilitators to end-of-life conversation.

Background: Among the chronically ill, end-of-life conversations are often delayed until emergently necessary and the quality of those conversations and subsequent decision-making become compromised by critical illness, uncertainty, and anxiety. Many patients receive treatment that they would have declined if they had a better understanding of benefits and risks. Primary care providers are ideal people to facilitate end-of-life conversations, but these conversations rarely occur in the out-patient setting. Objective: To investigate the self-reported experiences of physicians and advanced practice nurses with conversational barriers and facilitators while leading end-of-life discussions in the primary care setting. Design: A qualitative descriptive study. Methods: Six physicians and eight advanced practice nurses participated in singular semi-structured interviews. Results were analyzed using a qualitative descriptive design and content analysis approach to coding. Results: Reported barriers in descending order included resistance from patients and families, insufficient time, and insufficient understanding of prognosis and associated expectations. Reported facilitators in descending order included established trusting relationship with provider, physical and/or cognitive decline and poor prognosis; and discussion standardization per Medicare guidelines. Conclusion: Recommendations for improving the end-of-life conversational process in the primary care setting include further research regarding end-of-life conversational facilitators within families, the improvement of patient/family education about hospice/palliative care resources and examining the feasibility of longer appointment allotment.1.

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.

Accruing the sample: strategies for recruiting older adult and African Americans caregivers for persons with Alzheimer's disease.

The challenges and barriers associated with recruiting a representative sample of community-residing older adult caregivers for persons with Alzheimer's disease (AD) may limit efficient accrual in a reasonable period. These limitations may inhibit study completion, result in underpowered samples, or overextend research budgets. With the use of both grassroots recruiting and local community resources, successful recruitment methods and experiences obtained during two studies, the first in older adults caring for a spouse with AD and the second in family caregivers for African Americans with AD, are described. Strategies used to accrue the samples are discussed within the framework of knowledge, planning, and creativity.

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.

Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia.

OBJECTIVE: The aim of this study was to examine the role of finding meaning in caregiving as a way of coping and potential mediator of the effect of caregiver burden on caregiver health, controlling for potentially influencing factors. METHOD: This was a cross-sectional, descriptive study of 84 community-residing spouse caregivers for persons with dementia in which participants completed questionnaires during a face-to-face meeting. Variables included background and contextual variables, caregiver burden, finding meaning through caregiving (FMTCG), and caregiver physical and mental health. Measures included the Zarit Burden Interview, the FMTCG Scale, and the Medical Outcomes Short Form-36, v2. RESULTS: Regression analyses revealed that FMTCG partially mediated the relationship between caregiver burden and caregiver mental health. Caregiver burden was not associated with caregiver physical health. CONCLUSION: This study contributed new information by examining the role of finding meaning in caregiving, conceptualized from an existential perspective, as a mediator in the stress-coping process. Caregiver burden had an indirect effect on caregiver mental health that was partially mediated by finding meaning. Results underscore the importance of the positive aspects of caregiving such as finding meaning as potential buffers of the burden of caregiving.

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.

Research coordinators' experiences with scientific misconduct and research integrity.

BACKGROUND: Most reports of scientific misconduct have been focused on principal investigators and other scientists (e.g., biostatisticians) involved in the research enterprise. However, by virtue of their position, research coordinators are often closest to the research field where much of misconduct occurs. OBJECTIVE: The purpose of this study was to describe research coordinators' experiences with scientific misconduct in their clinical environment. DESIGN: The descriptive design was embedded in a larger cross-sectional national survey. A total of 266 respondents, predominately registered nurses, who answered "yes" to having firsthand knowledge of scientific misconduct in the past year, provided open-ended question responses. METHODS: Content analysis was conducted by the research team, ensuring agreement of core categories and subcategories of misconduct. FINDINGS: Research coordinators most commonly learned about misconduct via firsthand witness of the event, with the principal investigator being the person most commonly identified as the responsible party. Five major categories of misconduct were identified: protocol violations, consent violations, fabrication, falsification, and financial conflict of interest. In 70% of cases, the misconduct was reported. In most instances where misconduct was reported, some action was taken. However, in approximately 14% of cases, no action or investigation ensued; in 6.5% of cases, the coordinator was fired or he or she resigned. CONCLUSIONS: This study demonstrates the need to expand definitions of scientific misconduct beyond fabrication, falsification, and plagiarism to include other practices. The importance of the ethical climate in the institution in ensuring a safe environment to report and an environment where evidence is reviewed cannot be overlooked.

Deciding to institutionalize: why do family members cease caregiving at home?

The primary purpose of this secondary analysis was to identify common themes from the statements of caregivers who ultimately decided to institutionalize their relative with Alzheimer or Parkinson disease. Content analysis of transcripts from caregivers (n=11) who institutionalized their relative during their participation in a caregiver intervention study was performed. Two categories identified from the caregivers' stories were anticipating the inevitable and reaching the limit. The results of the descriptive analysis indicated that 3 to 4 months before institutionalization, caregivers discussed knowing that they would not be able to continue caring for their relative. The most frequent reasons for institutionalization were serious health events. The incidental finding that there were more institutionalizations in the Alzheimer disease participant group than in the Parkinson disease group may indicate that caregiving is more difficult for caregivers in Alzheimer disease than in Parkinson disease. This analysis contributes new and important information about the time interval between caregivers' anticipation of the need for alternative care arrangements and the subsequent placement in formal care. Nurses and other healthcare providers should be alert to the fact that when caregivers express anticipation of the need for change in care arrangements, it may be a signal for immediate assessment and referral to appropriate resources for assistance.