The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms.

INTRODUCTION: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. METHODS: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. RESULTS: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. CONCLUSION: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

Quality and extent of implementation of a nurse-led care management intervention: care coordination for health promotion and activities in Parkinson's disease (CHAPS).

BACKGROUND: A recent nurse-led, telephone-administered 18-month intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), was tested in a randomized controlled trial and improved care quality. Therefore, intervention details on nurse care manager activity (types and frequencies) and participant actions are needed to support potential dissemination. Activities include nurse care manager use of a holistic organizing framework, identification of Parkinson's disease (PD)-related problems/topics, communication with PD specialists and care coordination, participant coaching, and participant self-care actions including use of a notebook self-care tool. METHODS: This article reports descriptive data on the CHAPS intervention. The study setting was five sites in the Veterans Affairs Healthcare System. Sociodemographic data were gathered from surveys of study participants (community-dwelling veterans with PD). Nurse care manager intervention activities were abstracted from electronic medical records and logbooks. Statistical analysis software was used to provide summary statistics; closed card sorting was used to group some data. RESULTS: Intervention participants (n = 140) were primarily men, mean age 69.4 years (standard deviation 10.3) and community-dwelling. All received the CHAPS Initial Assessment, which had algorithms designed to identify 31 unique CHAPS standard problems/topics. These were frequently documented (n = 4938), and 98.6% were grouped by assigned domain from the Organizing Framework (Siebens Domain Management Model™). Nurse care managers performed 27 unique activity types to address identified problems, collaborating with participants and PD specialists. The two most frequent unique activities were counseling/emotional support (n = 387) and medication management (n = 349). Both were among 2749 total performed activities in the category Implementing Interventions (coaching). Participants reported unique self-care action types (n = 23) including use of a new notebook self-care tool. CONCLUSIONS: CHAPS nurse care managers implemented multiple activities including participant coaching and care coordination per the CHAPS protocol. Participants reported various self-care actions including use of a personalized notebook. These findings indicate good quality and extent of implementation, contribute to ensuring reproducibility, and support CHAPS dissemination as a real-world approach to improve care quality. TRIAL REGISTRATION: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

Unmet needs of people with Parkinson's disease: A cross-sectional study.

AIMS: To identify the type and extent of unmet needs in people with Parkinson's disease and to examine the impact of health locus of control and family support on these needs. DESIGN: A cross-sectional study. METHODS: This study was conducted from October 2015 - February 2016 in Korea. Data were collected through questionnaires focusing on unmet needs, health locus of control, family support and clinical features. RESULTS: Therapeutic needs represented the highest percentage of unmet needs in people with Parkinson's disease (85.05%), followed by social/spiritual/emotional needs (82.72%). Physical needs were the lowest reported score (75.01%). Unmet needs were more frequent in those with more severe non-motor symptoms. Also, higher family support, internal locus of control and doctor locus of control were correlated with more unmet needs. CONCLUSION: Understanding factors that determine the type and degree of unmet needs in people with PD is important to provide appropriate nursing care. The findings of this study can be used for providing nursing interventions reflecting unmet needs and reducing their unmet needs to improve the overall well-being of people with PD. IMPACT: This study addressed unmet needs unmet needs specific to Parkinson's disease with respect to their nursing needs. Therapeutic needs were the highest unmet needs in people with PD, followed by social/spiritual/emotional needs, need for certainty and physical needs. The findings may be useful for nurses to identify the unmet needs of people with PD which need to be addressed. By reflecting on unmet needs, nurses can give personally tailored nursing care.

Palliative care for Parkinson's disease.

Parkinson's disease (PD) is a slowly progressive multi-system neurodegenerative disorder, with no available disease-modifying treatment. The disease is associated with motor and non-motor symptoms leading to impaired quality of life, disability and signi cant caregiver distress. Patients with PD bene t from palliative care which provides a holistic approach to meet their multi-faceted needs, including symptom control, communication needs and caregiver support. This article would review on recent articles addressing palliative care for PD.

A Guideline for Parkinson's Disease Nurse Specialists, with Recommendations for Clinical Practice.

BACKGROUND: Parkinson's Disease Nurse Specialists (PDNS) play an important role in the care for patients with Parkinson's disease (PD) and their caregivers. Until now, there were no nursing guidelines in PD, and interventions were based solely on daily clinical practice because there is no evidence to support the merits of nursing interventions. Consequently, there is little uniformity in current care delivery. OBJECTIVE: Developing a guideline for PDNS. METHODS: We developed a guideline based on a questionnaire among PDNS and a literature review, supplemented with expert opinion plus the input of patients and caregivers. The questionnaire was filled in by 97 PDNS and 51 generic nurses with knowledge of PD to identify barriers in PD nursing care. Subsequently, we did a systematic literature search and transformed these sources of information into practice recommendations, which were developed according to international standards for guideline development. RESULTS: Based on the results of the questionnaire we identified seven specific core areas: defining the role of PDNS in terms of caseload, education, competences and care coordination; medication adherence; provision of information and education; coping; caregiver support; urogenital function and orthostatic hypotension. The systematic literature search identified 186 studies, of which 33 studies were finally analyzed. Furthermore, we developed practice recommendations based on good clinical practice for the following areas: self-care, mental functioning, mobility, nutrition, sexuality, work, sleep, palliative care and complementary (integrative) care. CONCLUSION: This guideline provide ground to harmonize care delivery by PDNS in clinical practice, and offer a foundation for future research.

What can the treatment of Parkinson's disease learn from dementia care; applying a bio-psycho-social approach to Parkinson's disease.

BACKGROUND: Within contemporary medical practice, Parkinson's disease (PD) is treated using a biomedical, neurological approach, which although bringing numerous benefits can struggle to engage with how people with PD experience the disease. A bio-psycho-social approach has not yet been established in PD; however, bio-psycho-social approaches adopted within dementia care practice could bring significant benefit to PD care. METHODS: This paper summarises existing bio-psycho-social models of dementia care and explores how these models could also usefully be applied to care for PD. Specifically, this paper adapts the bio-psycho-social model for dementia developed by Spector and Orrell (), to suggest a bio-psycho-social model, which could be used to inform routine care in PD. RESULTS: Drawing on the biopsychosocial model of Dementia put forward by Spector and Orrell (), this paper explores the application of a bio-psycho-social model of PD. This model conceptualises PD as a trajectory, in which several interrelated fixed and tractable factors influence both PD's symptomology and the various biological and psychosocial challenges individuals will face as their disease progresses. Using an individual case study, this paper then illustrates how such a model can assist clinicians in identifying suitable interventions for people living with PD. CONCLUSION: This model concludes by discussing how a bio-psycho-social model could be used as a tool in PD's routine care. The model also encourages the development of a theoretical and practical framework for the future development of the role of the PD specialist nurse within routine practice. IMPLICATIONS FOR PRACTICE: A biopsychosocial approach to Parkinson's Disease provides an opportunity to move towards a holistic model of care practice which addresses a wider range of factors affecting people living with PD. The paper puts forward a framework through which PD care practice can move towards a biopsychosocial perspective. PD specialist nurses are particularly well placed to adopt such a model within routine clinical practice, and should therefore be encouraged within PD services.

Spirituality As a Coping Mechanism for Individuals with Parkinson's Disease.

Parkinson's disease (PD) is a chronic neurodegenerative disease that can render individuals totally disabled. Spiritual practices can help mitigate stress and provide a source of strength in PD. This article demonstrates a gap that exists between PD and spiritual coping specific research; discusses existing spiritual coping research in chronic illness; and explores the use of spirituality in managing PD care. Healthcare providers need to provide holistic care and explore mechanisms to assist individuals to manage the demands of living with PD.

Diseño de una escala de medida del grado de convivencia en pacientes con un proceso crónico / Design of a measuring scale to evaluate the degree of living wth a chronic illnes, such as Parkinson´disease

INTRODUCCIÓN. Conocer cómo los pacientes conviven con un proceso crónico es necesario para proporcionar un cuidado individualizado e integral. En la actualidad, no existe ninguna escala validada que evalúe la convivencia con un proceso crónico, como es la enfermedad de Parkinson. OBJETIVOS. Los objetivos fueron: 1) definir el concepto Convivencia con un proceso crónico; 2) diseñar una escala de medición del grado de convivencia en pacientes con un proceso crónico, y en concreto, con la enfermedad de Parkinson. METODOLOGÍA. Se llevaron a cabo dos pasos metodológicos. Respecto al primero, se realizó un análisis del concepto Convivencia con un proceso crónico, a través del método evolutivo de Rodgers. El segundo paso metodológico fue el diseño de la escala, a través de la guía propuesta por DeVellis. RESULTADOS. A través del análisis de concepto se identificó que la Convivencia con un proceso crónico es un proceso complejo, dinámico, cíclico y multidimensional compuesto por los atributos de Aceptación, Afrontamiento, Automanejo, Integración y Adaptación. En cuanto a los resultados del diseño de la escala, se desarrolló una medida autocumplimentada, con cinco opciones de respuesta, tipo Likert y 27 ítems. CONCLUSIONES. La escala diseñada, es una medida innovadora y de interés potencial clínico que permite identificar qué factor o factores hacen que la persona conviva mejor o peor con la enfermedad y, consecuentemente, intervenir de manera integral, acorde con las necesidades individuales de cada persona (AU)

INTRODUCTION. Understanding how a person lives with a chronic illness is necessary to provide care according to the individual’s needs. Nowadays, there is no validated scale to measure how the person is living with a chronic condition, such as Parkinson’s disease. OBJECTIVES. The objectives were to: 1) define the concept of Living with a chronic illness; 2) design a measuring scale of the degree of Living with a chronic illness, in particular with Parkinson’s disease. METHODOLOGY. Two methodological steps were carried out. Regarding the first methodological step, a concept analysis of Living with a chronic illness was done using Rodgers’ evolutionary method. The second methodological step was the design of the scale, following DeVellis guideline. RESULTS. Through the concept analysis it was identified that Living with a chronic illness is a complex, dynamic, cyclic and multidimensional process, involving the attributes of Acceptance, Coping, Self-management, Integration and Adjustment. In relation to the design of the scale, it was developed a self-reported measure, with five Likert response options and 27 items. CONCLUSIONS. The designed scale, is an innovative measure with a high potential interest in clinical community to identify with are the factor(s) that make the person have a positive or negative living with the disease. Consequently, nurses could intervene in a holistic way, according to the patient individual needs (AU)

[Problem solving care models for Parkinson's disease]. / Problémamegoldó ápolási-gondozási modell Parkinson-kórban.

INTRODUCTION: Parkinson's disease affects more than 6,3 million people worldwide. Most patients and relatives are left alone to struggle with the symptoms associated with fluctuations in drug levels and the psychotic side effects of the anti-Parkinson's medications. Moreover, quite often even health providers may find difficult to interpret and manage the problems that have been encountered. AIM: The aims of the authors were to analyze systematically the biopsychosocial needs of Parkinson's patients, and to develop a complex, evidence-based Parkinson's-nursing-care model. METHOD: Patients' needs were assessed based on an observational study involving an old patient with Parkinson's disease for more than 28 years. The model has been specified as a multidisciplinary care framework adapted to the special characteristics of Parkinson's disease which transcends the limitations of different standard nursing models. RESULTS: The elaborated model contains a detailed description of cooperative problem solving, which is organized around individual patients along with recommendations for addressing various potential problems that might be encountered. CONCLUSIONS: Implementation of the presented model can improve the life quality of Parkinson's patients and can facilitate the life of affected families provided that these families are well aware about the potential benefits of the novel care delivery system.

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.

Caring for stoma patients with arthritis and mental incapacities.

Mental incapacities in the form of dementia, Parkinson's disease, Huntington's disease, and the physical incapacities of arthritis are difficult hurdles for an older patient who has to undergo stoma surgery, irrespective of the stoma being temporary or permanent. The loss of intellectual and physical function can cause significant deterioration in the patient's ability to carry out day-to-day activities and can also manifest itself in changes in social behaviour. Caring for these patients in the community will require the nurse to adjust the patient's care accordingly, and provide a holistic and more individualised care package that includes the support of the carer or spouse. This article discusses the ways in which community nurses can help the older stoma patient and carer.

[Needs and support networks of informal caregivers of people with Parkinson's disease: a literature review]. / Cuidadores informales de personal con Parkinson necesidades y redes de apoyo, una revisión bibliográfica.

OBJECTIVE: To develop knowledge about the needs of informal caregivers of people with Parkinson's disease and analyze the evidence of social support interventions to meet these needs. BACKGROUND: Parkinson's disease is a highly prevalent disease that causes a range of physical-psycho-social-emotional needs in the patient and his/her informal caregiver. Although quality of life and wellbeing of informal caregivers affect the care they provide patients with, their needs are not clearly represented in the literature. METHODS: A non systematic literature review of the evidence available in databases: PubMed, Medline, PsycINFO, CINAHL, Cochrane Library, BIREME and CUIDEN, published in the period 2001-2011. In addition, a manual search by reviewing the table of contents of the last 5 years in relevant journals related to the topic of this work and the snowballing technique have taken place. RESULTS: Informal caregivers have lots of needs that are not covered by the social support they receive. Caregivers' most demanded types of support are respite care, financial and socioemotional support, and coordination of continued multidisciplinary care. Precisely, these are rarely offered by professionals. CONCLUSIONS: The results of this review evidence that health professionals must provide social support to ensure holistic and personalized care to patients, and also to ensure caregivers' health as needed.

Cuidadores informales de personas con parkinson. Necesidades y redes de apoyo, una revisión bibliográfica / Needs and support networks of informal caregivers of people with parkinson´s disease: a literature review

Objetivo. Generar conocimiento sobre las necesidades de los cuidadores informales de las personas con la enfermedad de Parkinson y analizar la evidencia de las intervenciones de apoyo social para satisfacer estas necesidades. Contexto. El Parkinson es una enfermedad con alta prevalencia que causa una serie de necesidades físico-psico-socio-emocionales en el paciente y en su cuidador informal. La calidad de vida y bienestar del cuidador informal influye en el cuidado que ofrece al paciente. Sin embargo, sus necesidades no están claramente representadas en la literatura. Metodología. Se presenta una revisión bibliográfica no sistemática de la evidencia disponible en las bases de datos: Pubmed-Medline, PsycINFO, Cinahl, Cochrane Library, CUIDEN y BIREME, publicada en el período 2001-2011. Además, se ha realizado una búsqueda manual revisando las tablas de contenidos de los últimos cinco años en las revistas relevantes relacionadas con el tema de este trabajo y se ha usado la técnica de bola de nieve para buscar más referencias relacionadas. Resultados. Los cuidadores informales tienen gran cantidad de necesidades que la mayoría de las veces no cubren con el apoyo social que reciben. Las ayudas más demandadas por ellos son: el relevo de cuidado, ayuda económica, el apoyo socioemocional continuo y la coordinación del cuidado multidisciplinar. Precisamente, son las menos ofertadas por los profesionales. Conclusiones. El resultado de esta revisión evidencia la urgencia de la proposición del apoyo social por parte de los profesionales del ámbito sociosanitario que asegure el cuidado holístico y personalizado al paciente, promocionando al mismo tiempo la salud de los cuidadores, según sus necesidades (AU)

Objective: To develop knowledge about the needs of informal caregivers of people with Parkinson’s disease and analyze the evidence of social support interventions to meet these needs. Background: Parkinson’s disease is a highly prevalent disease that causes a range of physical-psycho-social-emotional needs in the patient and his/her informal caregiver. Although quality of life and wellbeing of informal caregivers affect the care they provide patients with, their needs are not clearly represented in the literature. Methods: A non systematic literature review of the evidence available in databases: PubMed, Medline, PsycINFO, CINAHL, Cochrane Library, BIREME and CUIDEN, published in the period 2001-2011. In addition, a manual search by reviewing the table of contents of the last 5 years in relevant journals related to the topic of this work and the snowballing technique have taken place. Results: Informal caregivers have lots of needs that are not covered by the social support they receive. Caregivers’ most demanded types of support are respite care, financial and socio-emotional support, and coordination of continued multidisciplinary care. Precisely, these are rarely offered by professionals. Conclusions: The results of this review evidence that health professionals must provide social support to ensure holistic and personalized care to patients, and also to ensure caregivers’ health as needed(AU)

Biopsychosocial and spiritual aspects of Parkinson disease: an integrative review.

The purpose of this study is to systematically examine the scientific literature and report the biopsychosocial and spiritual aspects of persons with Parkinson disease and their adaptation to the disease, to discuss methodological challenges associated with researching this phenomenon, and to propose future research. Synthesis of the literature will reveal the state of the science on the holistic approach to care in persons with Parkinson disease. An exhaustive review of the English language peer-reviewed literature published from January 1961 to July 2011 was conducted utilizing Academic Search Premier, MEDLINE, CINAHL, Psych Articles, Psych Info, PubMed, Wiley InterScience, the Cochrane Center Register for Control Trials, Health and Psychosocial Instruments, and SpringerLink databases. Ninety studies were reviewed. Although numerous medical studies focusing on pharmacological agents for Parkinson disease are reported, there are gaps in the literature on the biopsychosocial, spiritual, and holistic approaches in Parkinson disease care. More research is needed to examine the biopsychosocial and spiritual aspects of persons with Parkinson disease.

Weathering the storm: living with Parkinson's disease.

Parkinson's disease (PD), a movement disorder related to dopamine insufficiency in the brain, affects 7 to 10 million people worldwide. Research has focused on etiology and treatment, while research on how patients deal with PD is limited. This ehnographic study explored the illness experience of 14 participants living with PD. The metaphor, "Sailing the Seas in the Eye of the Storm" depicts their experience. Content themes "Daily Negotiations in the Midst of Uncertainty" (the storm) and "Reconstructin of the Self" (the travler's voyage) suggest aspects of holistic care for PD patients.

Culturally competent care for Parkinson disease.

Findings from a qualitative ethnographic study that examined the experiences of a group of persons with Parkinson disease are presented in this article. Culturally competent care for persons who share a common illness, such as Parkinson disease, is facilitated when the findings are incorporated into the Clinically Relevant Continuum Model. Use of this model allows providers to evaluate and use appropriate published evidence in addition to provider expertise and patient preferences and values.

Sleep disturbance in family caregivers of patients with advanced cancer.

Sleep is a complex process known to be essential for health, well-being, and optimal physical and psychological functioning. Therefore, sleep disturbance may lead to serious consequences. Advanced cancer patients are known to experience a complex constellation of symptoms requiring round-the-clock care. This reality, coupled with the current demographic, social, economic and health policy trends which are shifting palliative care from the hospital to the community setting, will see family members increasingly assuming responsibility for the provision of this care at home. Despite the positive aspects of caregiving, studies report that families experience stress and exhaustion. Given that patient and family constitute the unit of care in palliative care, this area warrants our attention. This article reviews the literature related to family caregivers' disturbed sleep while caring for someone with advanced cancer. What is known and directions for future research will be addressed.