A Parkinson care-coordinator may make a difference: A scoping review on multi-sectoral integrated care initiatives for people living with Parkinson's disease and their caregivers.

OBJECTIVE: To identify multi-sectoral integrated care initiatives for people with Parkinson's disease and caregivers. METHOD: Following the Matrix Method we created a synthesis of literature across methodological approaches. The search was conducted in four databases until June 2022, and included studies focusing on multi-sectoral integrated care initiatives, and how they helped people with Parkinson's disease and caregivers in everyday living. RESULTS: The search yielded 5921 articles of which nine were included. We identified four topics describing characteristics of multi-sectoral integrated care initiatives: 1) Peer-support, 2) Personalised care plan, 3) One-off initiatives limited in time and 4) Presence of a coordinator. And four topics describing how the initiatives helped in everyday living: 1) Confidence, trust and support, 2) Positive changes in health outcomes, 3) Quality of life, coping skills & psychosocial adjustment, and 4) A strengthened multi-agent collaboration and personalised assistance. CONCLUSION: Multi-sectoral integrated care initiatives should be ongoing offers, and include a Parkinson care-coordinator, who can enhance multi-sectoral communication and an individualised approach to information about resources responsive to evolving needs at different disease stages. PRACTICE IMPLICATIONS: Initiatives should be multidisciplinary, multi-sectoral and aimed at people with Parkinson's disease and caregivers, preferably facilitated by a care-coordinator to promote cross-sectoral communication.

Filling the gap in service provision. Partners as family carers to people with Parkinson's disease: A Scandinavian perspective.

OBJECTIVES: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway. METHODS: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n = 9) and Norway (n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches. RESULTS: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role. DISCUSSION: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.

Perspectives of people with Parkinson's disease and family carers about disease management in community settings: A cross-country qualitative study.

AIM: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease. BACKGROUND: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting. DESIGN: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ. METHODS: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings. RESULTS: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management. CONCLUSIONS: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions. PATIENT OR PUBLIC CONTRIBUTION: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. RELEVANCE TO CLINICAL PRACTICE: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson' disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.

Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study.

BACKGROUND: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. OBJECTIVE: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. METHODS: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. RESULTS: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. CONCLUSIONS: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. PATIENT OR PUBLIC CONTRIBUTION: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.

Clinical Markers of 6 Pre-dominant Coping Behaviors in Living With Parkinson Disease: A Convergent Mixed Methods Study.

People with Parkinson's disease (PwP) experience a variety of symptoms and fluctuations in these, which they have to cope with every day. In tailoring a person-centered treatment to PwP there is a lack of knowledge about the association between pre-dominant coping behaviors and clinical markers among PwP. To describe and compare specific clinical markers between 6 suggested coping behaviors. Thirty-four PwP, who previously had been classified into 6 different pre-dominant coping behaviors, were included in this mixed methods study. Six primary variables were included in the descriptive analysis; motor function (UPDRS-III), non-motor symptoms score (NMS-Quest), change in bradykinesia score, apathy score (LARS), personality traits (NEO-FFI), and cognitive status (evaluated by a neuropsychologist). The merged results of this mixed methods study indicate that clinical markers as apathy, burden of non-motor symptoms, cognitive impairments and personality traits, have the potential to impact the coping behavior in PwP. In a clinical setting the markers; NMS-burden, degree of apathy, cognition, and personality traits may indicate specific coping behavior. Three of the six suggested typologies of coping behaviors differed from the other groups when comparing descriptive data. In order to improve patient care and guide the development of person-centered therapies, each PwP should be approached based on those typologies.

Walking a tightrope - as a next-of-kin to an adolescent or young adult with cancer facing eating difficulties.

PURPOSE: Eating difficulties cause reduced food intake and poor quality of life among adolescents and young adults (AYAs) with cancer. Therefore, next-of-kin eating support is crucial. The purpose of this study was to explore the lived experiences of being close to AYAs with cancer in the context of eating when they are at home between high-emetogenic chemotherapy (HEC) sessions. METHOD: In-depth interviews were conducted with 12 next-of-kin to AYAs (15-29 years old) with oncological or haematological diseases, treated with HEC. Van Manen's hermeneutic-phenomenological approach guided the design. RESULTS: The essential meaning of the next-of-kin experiences is reflected in the overarching theme "Utilizing meals as an action-opportunity" consisting of two subthemes: 'Being on constant alert' and "Walking a tightrope to maintain usual everyday life." CONCLUSIONS: Findings revealed that utilizing meals as an action-opportunity towards AYAs' food intake involved existential feelings including fear of losing their loved ones. Next-of-kin experienced that providing support through and with food was their only avenue of action. However, this sparked feelings of frustration and powerlessness.

Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson's care pathways. A document analysis.

People with Parkinson's disease (PD) may find it difficult to identify and access the wide number of services they need and are entitled to along their complex PD journey. As part of the project OPTIM-PARK - Optimisation of community resources and systems of support to enhance the process of living with Parkinson's Disease, document analysis was developed to create overviews of existing resources and systems of support in Denmark, Norway, Spain and the United Kingdom. Documents on community resources, policies, guidelines and professional recommendations were the main sources of information. They were sought systematically at official websites of the public sector (national and regional levels) and websites of non-governmental organisations and scientific societies; searches were performed in October 2020 and updated in September 2021. A higher-level cross-national content analysis integrated all the country-specific information. Data- and concept-driven coding frames were developed; trial coding and peer review strengthened face validity and reliability. The analysis led to overviews of: (1) Key aims at patient and societal levels. (2) Key elements in form of professional approaches. (3) Community resources. (4) Legally anchored services. In general, clear descriptions of how to implement care pathways and tools to facilitate delivery were missing in the included documents, and pathways and guidelines did not include referral to general social support, social security support or labour and employment support. The results shed light on the complex support systems and resources and can inspire the planning of more comprehensive care pathways for people with PD and other long-term conditions.

Struggling to Eat to Survive Cancer-Lived Experiences of Eating Among Adolescents and Young Adults Undergoing High-Emetogenic Chemotherapy.

Purpose: The purpose of this study was to provide in-depth understanding of adolescents' and young adults' (AYAs') lived experiences of eating when they are at home between high-emetogenic chemotherapy sessions. Methods: The study was guided by van Manen's hermeneutic-phenomenological methodology. Eligible AYAs were 15-29 years old, diagnosed with either oncological or hematological cancer, treated with high-emetogenic chemotherapy, and Danish speaking. AYAs were recruited from three university hospital departments. Data were collected using semi-structured in-depth interviews. Results: Thirteen AYAs, aged 17-29 years, participated in the interviews via telephone or face-to-face in their homes. The essential meaning of the phenomenon of eating can be characterized by the overarching theme "Struggling to eat to survive" and unfolded through the following three themes: "Cooperating with a deceiving body", "Capturing moments of eating opportunities", and "Being loved and cared for at home". Conclusions: Struggling to eat was essential for survival and a fundamental existential challenge that required reflection and consciousness. AYAs experienced their deceiving bodies as a major concern, which challenged their ability to eat and forced them to develop strategies to capture moments of eating opportunities. AYAs kept hold of doing "something" themselves to maintain the slightest control of their own lives and thereby assist clinical outcomes and cure. However, AYAs had to struggle with food and start viewing food as a friend, not an enemy.

Love, joy and necessity - A phenomenological study of food and meals in adolescents and young adults with cancer receiving high-emetogenic chemotherapy.

PURPOSE: This study explored how the phenomenon of meals appeared in the interrelationship between adolescents and young adults (AYAs) receiving high-emetogenic chemotherapy, their next of kin and health professionals in the clinical setting. METHOD: Data were collected by 140 h of participant observation conducted to gain insights into the nature of how meals appeared in the interrelationship between 12 AYAs (age 15-29 years), their next-of-kin and health professionals. The AYAs were patients with oncological and haematological diseases recruited from three university hospital departments. Data analysis was guided by van Manen's hermeneutic-phenomenological approach. RESULTS: The essential meaning of the phenomenon may be characterized by the overarching theme; 'Seeking the joy of meals in the shadow of treatment' and the following three themes: 'Meals as a necessary evil' (AYAs); 'Meals as a matter of love' (next-of-kin); and 'Meals in the shadow of medical treatment' (health professionals). CONCLUSIONS: Meals is a multi-facetted and complex phenomenon that has different meanings to AYAs, next-of-kin and health professionals. To the AYAs, meals emerged as a necessary evil in connection with which urges to eat occurred as glimpses of desire. Prominent feelings of powerlessness and food as love were highlighted by the next-of-kin, whereas food and meals appeared secondary to treatment for health professionals, reflecting the traditional biomedical paradigm. The findings revealed that adopting a holistic approach to AYAs concerning meals can have the potential to increase their food intake.

'Striving for normality' when coping with Parkinson's disease in everyday life: A metasynthesis.

BACKGROUND: Parkinson's disease is a chronic, progressive neurodegenerative disease which affects more than ten million people worldwide. Living with Parkinson's disease has a high impact on everyday life, and may affect quality of life negatively. Individualized coping strategies are needed to deal with the disease on a daily basis and still enjoy a social life. OBJECTIVE: The aim of this study was to identify and describe strategies for coping adopted by individuals living with Parkinson's disease in their daily lives. DESIGN: The study is designed as a meta-ethnographic metasynthesis and follows Sandelowski and Barroso's guidelines for synthesizing qualitative research. DATASOURCES: Based on an exhaustive literature search in the following databases: CINAHL, MEDLINE, PsychINFO, Scopus and Swemed, as well as Mednar, parkinson.org, Google Scholar and OpenGrey, with no limit on the search date, 14 articles were included. REVIEW METHODS: The data were analyzed through a taxonomic and inductive analysis focusing on coping with Parkinson's disease in daily life. RESULTS: The findings revealed that the overarching motivation for patients to cope with Parkinson's disease was maintaining normality and preserving the self. The coping strategies used were: Staying independent, Focusing on the present and Avoiding challenging situations. CONCLUSIONS: Coping with Parkinson's disease is an ongoing and complex process of balancing the strategies used, while holding on to the 'self' that pre-dated Parkinson's disease, and at the same time adjusting one's identity to embrace living with a chronic condition. In this process, optimism and positive thinking would seem to be very fruitful. Further, the synthesis revealed that relatives often act as informal caregivers and hence as an important support in daily life. Healthcare professionals must know about coping strategies in order better to support the patients.

Identification of Pre-Dominant Coping Types in Patients with Parkinson's Disease: An Abductive Content Analysis of Video-Based Narratives.

BACKGROUND: People with Parkinson's disease suffer from a range of various symptoms. Altered movement patterns frequently represent the prevailing symptom experience and influence the everyday life of the affected persons. OBJECTIVE: This qualitative study explores how persons with Parkinson's disease experience everyday life with a complex symptom profile and how they manage the consequential challenges in their daily life, as well as the motivation and consequences of these coping behaviours. METHODS: Thirty-four patients with Parkinson's disease were interviewed as an integrated part of the method Video-based Narrative. The interviews were analysed by means of qualitative content analysis according to Graneheim & Lundman. RESULTS: The analysis identified six predominant coping types with different behavioural traits: The convincing behaviour, The economizing behaviour, The encapsulating behaviour, The evasive behaviour, The adaptable behaviour, and The dynamic behaviour. The strategies embedded in each of the six types are diverse, but all participants seek to maintain their integrity in different ways leading to the main motivation "To stay the same person". CONCLUSION: Healthcare professionals should be aware of the patients' various coping behaviour in order to offer a person-centred approach. Psychoeducational interventions to promote coping skills may be essential in incorporating disease-related changes in the conduct of everyday life with Parkinson's disease to maintain integrity.

"Does the Response to Morning Medication Predict the ADL-Level of the Day in Parkinson's Disease?"

BACKGROUND: Individuals with Parkinson's Disease (PD) have bradykinesia during mobility tasks in the morning before intake of dopaminergic treatment and have difficulties managing Activities of Daily Living (ADLs). Early morning off (EMO) refers to off-states in the morning where the severity of bradykinesia is increased and causes a decrease in mobility related to wearing off of effects of medication. Measurements from devices capable of continuously recording motor symptoms may provide insight into the patient's response to medication and possible impact on ADLs. OBJECTIVES: To test whether poor or slow response to medication in the morning predicts the overall ADL-level and to assess the association between change in bradykinesia score (BKS) and the risk of having disabilities within three selected ADL-items. METHODS: In this cross-sectional study, the sample consists of 34 patients with light to moderate PD. Data collection encompasses measurements from the Parkinson KinetiGraph, and the ADL-limitations are assessed by the Movement Disorder Society Unified Parkinson Disease Rating Scale (MDS-UPDRS) Part II. RESULTS: The association between UPDRS- II and BKS from the algorithm was -0.082 (p < 0.01), 95% CL:-0.113; -0.042). The individuals experienced disabilities in performing "Speech" (p=0.004) and "Doing hobbies" (p=0.038) when being slow or poor responders to dopaminergic therapy. The PD patients' L-dopa equivalent dose seems to be a strong predictor of the ADL-level in the morning. CONCLUSION: Slow response to the medication dosages in the morning is correlated with disabilities in the overall ADL-level in PD. The combination of PD-drugs and precise, timely dosages must be considered in the improvement of the ADL-level in PD patients.

Sharing our story individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson's disease.

Treatment with deep brain stimulation for Parkinson's disease, leads to a rapid improvement in mobility, which may challenge patients and spouses when adjusting to everyday life. An intervention, developed to support the adjustment to everyday life with DBS, demonstrated that individualized meetings with a specialized nurse was experienced as important and fruitful by both patient and spouses. Purpose: The aim was to gain a deeper understanding of how the meetings contributed to the adjustment process. Method: 38 audio-recorded meetings and six written summaries from eight couples participating in the intervention, were analyzed in a hermeneutic process. Results: The analysis revealed four themes: A relational triad of co-creating personal knowing. Sharing and listening in an atmosphere of trust and openness. Unveiling the couple's everyday life, coping strategies and expectations. Supporting adjustment through knowing their personal story. Conclusion: The triadic dynamics in the meetings were quite particular. The main focus was the patients' and spouses' stories, individually and as a couple. The DBS nurse pursues solutions based on professional and specialized knowledge of Parkinson's disease and the couple's everyday life. Thus, the intervention meetings offered tailored, individualized and specialized care in supporting adjustment to DBS for PD both individually and as couples.

Nurses experiences of ethical dilemmas: A review.

BACKGROUND: Nursing care is rapidly evolving due to the advanced technological and medical development, and also due to an increased focus on standardization and the logic of production, permeating today's hospital cultures. Nursing is rooted in a holistic approach with an ethical obligation to maintain and respect the individual's dignity and integrity. However, working within time limits and heavy workload leads to burnout and ethical insensitivity among nurses, and may challenge nurses' options to act on the basis of ethical and moral grounds in the individual care situation. AIM: The aim of this study is to describe and discuss ethical dilemmas described and experienced by nurses in clinical practice today. METHOD: The study was performed as a literature review following the matrix method allowing to synthesize literature across methodological approaches. A literature search was performed, including relevant studies published between 2011 and 2016. A total of 15 articles were included and analyzed focusing on their description of ethical dilemmas. ETHICAL CONSIDERATION: We have considered and respected ethical conduct when performing a literature review, respecting authorship and referencing sources. RESULTS: The analysis revealed three themes, relating to important aspects of nursing practice, such as the nurse-patient relationship, organizational structures, and collaboration with colleagues. The findings are summarized in the following three themes: (1) balancing harm and care, (2) work overload affecting quality, and (3) navigating in disagreement. Ethically difficult situations are evident across settings and in very diverse environments from neonatal care to caring for the older people. Organizational structures and being caught in-between professional values, standardization, and busyness was evident, revealing the complexity of nursing practice and the diversity of ethical dilemmas, concerns, and distress experienced by clinical nurses. CONCLUSION: Nursing practice is challenged by organizational structures and the development of the health care system, inhibiting nurses' professional decision-making and forcing them to compromise basic nursing values.

Coping with the unfamiliar: How do children cope with hospitalization in relation to acute and/or critical illness? A qualitative metasynthesis.

The aim of this study was to identify and describe how young children cope with hospitalization in relation to acute and/or critical illness. The study is a qualitative metasynthesis inspired by the approach described by Sandelowski and Barroso. Based on an exhaustive literature search, six studies were included. Data were analyzed through a taxonomic analysis. The findings revealed that the hospitalized children face a variety of challenges during admission to the hospital due to acute and/or critical illness. The main challenge was that hospitalized children strive to cope with different aspects of 'the unfamiliar' that emerge in their illness treatment and hospital stay. The unfamiliar refers to unknown experiences on a physical, emotional, and relational level. Subsequently, children cope with the unfamiliar by striving to convert the hospital stay into something more similar to everyday life, using strategies to secure basic needs and constructing familiarity in the hospital stay. The consequences of the children's coping behavior are discussed and how children strive to keep their integrity intact during illness and hospitalization are revealed.

"It Is Hard Work, But It Is Worth It": Patients and Spouses' Experiences of a Nursing Intervention to Promote Adjustment to Deep Brain Stimulation for Parkinson's Disease-A Feasibility Study.

This article evaluates the feasibility of a nursing intervention when adjusting to deep brain stimulation for Parkinson disease. Eight couples were included in the study. Main activities of the intervention were a diary and individualized meetings between nurses, patients, and spouses with a focus on everyday life and expectations to deep brain stimulation. All meetings were audio recorded and analyzed together with the content of the diary. The intervention was evaluated as feasible and experienced as meaningful. It supports the need for individualized care involving both patients and spouses and contributes to the development of an evidence-based nursing practice.

Patients' experience of thirst while being conscious and mechanically ventilated in the intensive care unit.

BACKGROUND: Because of changes in sedation strategies, more patients in the intensive care unit (ICU) are conscious. Therefore, new and challenging tasks in nursing practice have emerged, which require a focus on the problems that patients experience. Thirst is one such major problem, arising because the mechanical ventilator prevents the patients from drinking when they have the urge to do so. To gain a deeper understanding of the patients' experiences and to contribute new knowledge in nursing care, this study focuses on the patients' experiences of thirst during mechanical ventilation (MV) while being conscious. AIMS: To explore patients' experience of thirst while being conscious and mechanically ventilated. DESIGN: This hermeneutic study used qualitative interviews of 12 patients. METHOD: Data were analyzed based on content analysis. Interviews were conducted between September and October 2014 in two large ICUs in Denmark. RESULT: Four themes relating to the patients' experiences of thirst during MV were identified: a paramount thirst, a different sense in the mouth, deprivation of the opportunity to quench thirst and difficulties associated with thirst. CONCLUSION: Patients associate feelings of desperation, anxiety and powerlessness with the experience of thirst. These feelings have a negative impact on their psychological well-being. A strategy in the ICU that includes no sedation for critically ill patients in need of MV introduces new demands on the nurses who must care for patients who are struggling with thirst. RELEVANCE TO CLINICAL PRACTICE: This study shows that despite several practical attempts to relieve thirst, it remains a paramount problem for the patients. ICU nurses need to increase their focus on issues of thirst and dry mouth, which are two closely related issues for the patients. Communication may be a way to involve the patients, recognize and draw attention to their problem.

High on Walking: Conquering Everyday Life.

The aim of this study is to discuss the meaning of walking impairment among people who have previously been able to walk on their own. The study is based on findings from three different life situations: older people recovering after admission in intermediate care, people who have lost a leg, and people who live with Parkinson's disease. The analysis of the data is inspired by Paul Ricoeur's philosophy of interpretation. Four themes were identified: (a) I feel high in two ways; (b) Walking has to be automatic; (c) Every Monday, I walk with the girls in the park; and (d) I dream of walking along the street without sticks and things like that. The findings demonstrate that inability to walk profoundly affected the participants' lives. Other problems seemed small by comparison because walking impairment was at the same time experienced as a concrete physical limit and an existential deficit.

Coping with Parkinson's disease in everyday life: a systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The purpose of this systematic review is to synthesize the best available qualitative evidence on how individuals with Parkinson's disease cope with the disease in daily life.