Promoting Informed Decision Making Through Advance Care Planning
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|ClinicalTrials.gov Identifier: NCT02211287|
Recruitment Status : Unknown
Verified April 2014 by Kevin Brazil, Queen's University, Belfast.
Recruitment status was: Not yet recruiting
First Posted : August 7, 2014
Last Update Posted : August 7, 2014
|Condition or disease||Intervention/treatment||Phase|
|Dementia Neurodegenerative Diseases||Other: 'Comfort Care at the End of Life for Persons with Dementia' Other: Project Nurse - ACP Facilitator||Not Applicable|
|Study Type :||Interventional (Clinical Trial)|
|Estimated Enrollment :||420 participants|
|Intervention Model:||Parallel Assignment|
|Primary Purpose:||Supportive Care|
|Official Title:||Promoting Informed Decision Making and Effective Communication Through Advance Care Planning for People With Dementia and Their Family Carers|
|Estimated Primary Completion Date :||August 2015|
|Estimated Study Completion Date :||August 2016|
The intervention will include five key elements: a Project Nurse - ACP facilitator; family education on comfort care at the end of life for individuals with dementia using the 'Comfort Care at the end of life for persons with dementia' booklet; a family meeting with follow-up telephone call; documentation of ACP decisions, and orientation and education directed towards General Practitioners (GPs) and nursing home staff about the intervention.
Other: 'Comfort Care at the End of Life for Persons with Dementia'
A guide for caregivers to provide information on the trajectory of the disease, clinical issues, decision-making processes, and symptom management. The guide is written in a Q&A form and can help answer frequent family questions.
Other: Project Nurse - ACP Facilitator
A nurse will receive training in the 'Respecting Choices Facilitator Curriculum' - an online program consisting of a series of six critical thinking modules designed for healthcare professionals who want to enhance their ACP facilitation skills. Local training resources in Northern Ireland will supplement.
No Intervention: Usual care
Care will continue as usual for the nursing home residents
- Level of family carer satisfaction in decision making about the care of the resident [ Time Frame: Baseline, up to 2 months ]Decisional Conflict Scale (DCS). This measures uncertainty and difficulties in the decision making process. The 16 item version measures four domains: a) uncertainty in choosing options; b) unsupported in decision making; c) feeling informed; d) decision is consistent with values
- The level of family carer satisfaction with nursing home care [ Time Frame: Baseline up to 2 months ]The Family Perception of Care Scale (FPCS). This instrument will represent a global measure on the quality of nursing home care. It is comprised of four subscales: 1) resident care, 2) family support, 3) communication, and 4) rooming. One can investigate both the total and the subscale scores. Family members will also be asked to identify three of the 25 items in the instrument as the highest priorities for providing quality care in the nursing home. Respondents will also be invited to include written comments.
- Level of family carer anxiety and depression [ Time Frame: Baseline up to 2 months ]General Health Questionnaire (GHQ-12). This 12-item instrument is a self-report measure of psychological morbidity. It is widely used in clinical practice, epidemiological research and for research in psychology. The GHQ-12 is often used to assess general distress. It is designed to cover four identifiable elements of distress: anxiety, depression, social impairment, and hypochondriasis.
- The comfort of the resident at the end of life [ Time Frame: Baseline up to 2 months ]Quality of Dying in Long Term Care (QoDLTC). This instrument is a retrospective scale representing psychosocial aspects of quality of dying. The questionnaire contains 11 items with three subscales: personhood (5 items), closure (3 items) and preparatory tasks (3 items). Factor scores (means of item scores within each factor) may be averaged for an overall quality of dying score (range 1 - 5), with a higher score indicating a more positive experience. Individual factor scores may also be used separately.
- Number of unnecessary hospitalisations [ Time Frame: Baseline up to 12 months ]Assessed through the facility care home administrative records
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02211287
|Contact: Kevin Brazil, PhD||0044 289097 ext firstname.lastname@example.org|
|Four Seasons Health Care -- Nursing Homes||Not yet recruiting|
|Belfast, United Kingdom|
|Contact: Jim McCall|
|Principal Investigator:||Kevin Brazil, PhD||Queen's University, Belfast|