Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.

BACKGROUND: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving. AIM: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving. METHOD: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16). Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes. RESULTS: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress. Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth. CONCLUSIONS: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.

Establishing Predictive Criterion Validity of the Parkinson's Disease Caregiver Strain Risk Screen-10.

BACKGROUND AND PURPOSE: Studies reveal that caring for persons with Parkinson's disease affects informal caregivers psychologically and physically, yielding negative impacts on caregiving abilities. The purpose was to establish predictive criterion validity of the Caregiver Strain Risk Screen-10 (CSRS-10), a tool designed to monitor risk for strain in informal caregivers of persons with Parkinson's disease. METHODS: Caregivers (N = 137) of persons with Parkinson's disease completed surveys that included CSRS-10 and Pennebaker Inventory of Limbic Languidness, to measure strain risk and frequency of physical health symptoms, respectively. RESULTS: Hierarchical regression indicated that higher CSRS-10 scores were predictive of greater frequency of physical health symptoms in caregivers. CONCLUSIONS: The study established predictive criterion validity of CSRS-10, further demonstrating it as an effective evidence-based tool for assessing risk for strain in this informal caregiver population.

Barriers and Motives to PA in South Asian Indian Immigrant Women.

The high prevalence of chronic illnesses in South Asian Indian immigrant women underscores the need for identifying factors that could influence their PA. The purpose of this qualitative study was to examine the perspectives of South Asian Indian immigrant women related to barriers to and motives for lifestyle PA within the PA Framework for South Asian Indian Immigrants. Forty women participated in focus groups that were conducted in English and Hindi. Focus group questions were open-ended and semistructured. Transcribed and de-identified audiotaped sessions were coded and analyzed using Atlas.ti software. Role expectation was a core theme for barriers with four subthemes: lack of time, loss of interest, diminished social support, and environmental constraints. Self-motivation was a core theme for motives with three subthemes: optimal physical and psychological health, emphasis on external beauty, and strong social support. Future PA interventions need to target these culturally sensitive factors.

Moving Nursing Program Portfolio Assessment From Midterm to End of Program: Lessons Learned.

Portfolio assessment promotes a culture of evidence, evaluates program outcomes, and provides an opportunity to assess the acquisition of knowledge and skills that are not easily assessed by examinations and other traditional assessment methods in nursing curricula. The portfolio program of 1 Midwestern school of nursing recently moved portfolio assessment to the end of program. The process of this change including logistics, rubric development, and lessons learned is highlighted.

Psychometric Testing and Modification of the Parkinson's Disease Caregiver Strain Risk Screen.

BACKGROUND AND PURPOSE: The Caregiver Strain Risk Screen-10 (CSRS-10) was psychometrically tested as a modification of the 28-item Caregiver Strain Risk Screen (CSRS) to measure risk for strain in caregivers of persons with Parkinson's disease. Risk for strain in this population is high because of the unpredictability of disease progression. METHODS: Caregivers (N = 223) provided data for confirmatory factor analysis (CFA) to assess the factor structure of the items. RESULTS: CFA and subsequent modification indices supported a 10-item, single-factor model and was determined to be a valid, reliable measure of risk for strain in this population. CONCLUSIONS: The CSRS-10 is an efficient, theory-based instrument to assess caregiver strain risk throughout the care recipient's illness progression. It is ideal for researchers and nurses seeking a succinct strain risk measure for this population.

Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice.

BACKGROUND: The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief. MATERIALS AND METHODS: A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community-based organizations. RESULTS: Findings were supported in the context of seminal grief and bereavement theories. Three themes (i.e. reactions to loss, processing the loss and incorporating the loss) and related subthemes emerged from the data. CONCLUSIONS: PWIDDs are susceptible to traumatic grief, and DCWs are often key witnesses to such experiences. DCWs' perspectives can guide the development of grief and bereavement training which can lead to more tailored support systems.

Development and initial validation of a Parkinson's disease caregiver strain risk screen.

BACKGROUND AND PURPOSE: Family caregivers face potential strain in caring for persons with Parkinson's disease because of the unpredictability of symptom presentation. The Caregiver Strain Risk Screen (CSRS) was developed and tested for initial validation. METHODS: Instrument item development was guided by focus-group and interview data and a theoretical conceptualization of caregiver strain risk in caregivers of persons with Parkinson's disease. Caregivers of persons with Parkinson's disease (N = 217) provided data. RESULTS: Principal components analysis supported a 28-item instrument with 4 factors: self-preservation, nursing home consideration, coping through spirituality, and coping through formal support. CONCLUSION: The 28-item CSRS demonstrated acceptable validity and reliability in measuring the construct. Research using a new sample is underway to further psychometrically test and validate the CSRS through confirmatory factor analysis.

The value of peer-led support groups among caregivers of persons with Parkinson's disease.

Many persons with Parkinson's disease are cared for by family members. The strain of caregiving can negatively affect the health of the caregiver and affect long-term care decisions, making caregiver support a priority. This study highlights the importance of peer-led support groups for family caregivers of persons with Parkinson's disease.

Integrating care of older adults into the nursing curriculum: a case exemplar project.

The growing number of older adults in the United States necessitates that nurses be prepared to care for this population. A case exemplar was created for use in a baccalaureate nursing program to prepare students for care of older adults in multiple settings, as well as to heighten interprofessional health care partnerships. The case exemplar follows the character, Mrs. Gates, in a scenario throughout the program. Another character, Mrs. Strokes, is introduced in a high-fidelity laboratory simulation activity for more advanced students. The case scenario uses a team approach to care and includes activities that optimize critical thinking. This article describes the process of creating a case exemplar, including project pilot testing, and the potential for interprofessional education. The incorporation of case exemplars such as these can enhance the teaching-learning process, thereby improving care for older adults and their families.

Family caregivers' decision process to institutionalize persons with Parkinson's disease: a grounded theory study.

BACKGROUND: Parkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers. AIMS: The purpose of the study was to understand (1) family caregivers' experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility. PARTICIPANTS: Twenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease. METHOD: Grounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis. FINDINGS: The caregiving model developed from the data illustrated that heightened caregiver strain-a risk factor for institutionalization-results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease. CONCLUSIONS: Implications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.