Psychological perspectives of intimate partner of Parkinson\u27s disease patients

Raziskava je bila izvedena z namenom zaznavanja potreb življenjskih partnerjev v vlogi skrbnikov bolnikov s parkinsonovo boleznijo in priprave smernic za podporo partnerjev. V raziskavi se ukvarjamo z vprašanjem soočanja s partnerjevo boleznijo, parkinsonovo boleznijo. Zanimalo nas je, kako se partnerji spoprijemajo s spremenjenimi vlogami. Z devetimi udeleženci smo izvedli pol-strukturirane intervjuje, kjer smo se dotaknili treh področij - kontekst, bolnik in partner. Dva intervjuja sta bila narejena s ključnimi deležniki, ki so omogočili umestitev informacij v širši kontekst. Uporabljena je metodologija interpretativne fenomenološke analize (Smith, 1996), s pomočjo katere smo analizirali intervjuje. Izpostavili smo šest večji tem, ki so se v intervjujih ponavljajo: partnerski odnos, soočanje z boleznijo partnerja, sprememba življenjskega sloga, psihološke spremembe bolnika in informiranost o bolezni. Predhodna študija kaže, da je kakovostna partnerska zveza varovalni dejavnik zadovoljstva z življenjem in z nevrodegenerativno boleznijo partnerja (O\u27Connor in McCabe, 2011), kar se je potrdilo tudi znotraj naše študije. Na vprašanje, ki ga omenjena avtorja zastavljata in nista našla odgovora - kaj se dogaja s partnerskim odnosom, ko postaja bolnik vse bolj bolan - smo v naši raziskavi ugotovili, da partner v vseh primerih postaja vse bolj obremenjen in ima vse manj časa za lastne aktivnosti, vendar kaže, da je predhodna kakovostna partnerska zveza še zmeraj varovalni dejavnik zadovoljstva z življenjem in prinaša v odnos smisel vztrajanja v težjih razmerah. Partnerji potrebujejo vsaj eden ali več dobrih odnos, v najboljšem primeru je to odnos s svojim partnerjem, v kolikor pa odnos ne velja za kakovostnega je lahko varovalni dejavnik zadovoljstva z življenjem drug pomemben kakovostni odnos. Življenjskim partnerjem v vlogi skrbnikov je potrebno zagotoviti kontinuirani psihosocialni program, kjer bi se srečevali partnerji skrbniki, izmenjali izkušnje in se posvetili vsebinam s področja psihoedukacije in parkinsonove bolezni.The research was made with the aim to detect the needs of the spouse, caregivers for patients with parkinson\u27s disease and to prepare the psychosocial support program. In the research we revealed the issue of coping with the spouse\u27s disease, parkinson\u27s disease. We are interested in how the spouse is dealing with changing roles in partnership and in family life. We conducted semi-structured interviews with nine participants, who were life partners of patients who had PB. We put focus on three areas - the context of life, patient and the partner. Additional two interviews were made with key stakeholders, which facilitated the installation of previously obtained information in a broader context. We expose six major themes that have been highlighted in interviews: a partnership dealing with partner\u27s illness, lifestyle changes, patient\u27s psychological aspects and changes and provision of information about disease. We used interpretive phenomenological analysis for analysing interviews (Smith, 1996). The conclusions of the study (O\u27Connor and McCabe, 2011) were confirmed well with our study - a high-quality partner life works as a protective factor of satisfaction for the healthy partner of PB partner. We tried to answer the questions raised by the mentioned authors - what is going on when the patient becomes increasingly sick? - spouses become more troubled and have less time for their own activities, but it shows that a high-quality partner life still works as a protective factor of satisfaction with life and brings to the relationship the meaning to stay together and support each other in dire moments. Spouses are in need of at least one or more high-quality relationships and it is a win-win situation if the relationship is a partnership. It is necessary to ensure the continuity of psychosocial programs designed for spouses where they meet for psychosocial support matters and can foremostly be educated about Parkinson\u27s disease and occupy themselves with topics of psychoeducation

ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study

Background: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. Aim: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. Design: Delphi Process comprising the following three stages: 1. Scoping review of literature into palliative care volunteers. 2. Two rounds of Delphi Questionnaire. 3. Nominal Group Meeting. Setting/participants: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. Results: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. Conclusion: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts

ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study

Aim: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. Design: Delphi Process comprising the following three stages:1. Scoping review of literature into palliative care volunteers.2. Two rounds of Delphi Questionnaire.3. Nominal Group Meeting. Setting/participants: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. Results: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. Conclusion: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts

Development of an international Core Outcome Set (COS) for best care for the dying person : study protocol

Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. Methods: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. Discussion: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses

ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study

Background:Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital.Aim:Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life.Design:Delphi Process comprising the following three stages:1. Scoping review of literature into palliative care volunteers.2. Two rounds of Delphi Questionnaire.3. Nominal Group Meeting.Setting/participants:Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries.Results:The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus.Conclusion:Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts