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| Name | Class |
|---|---|
| Four Seasons Health Care | UNKNOWN |
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The purpose of this study is to evaluate the application of a best-practice Advance Care Planning (ACP) model for individuals living with dementia in a sample of nursing homes in Northern Ireland
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention | Experimental | 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. |
|
| Usual care | No Intervention | Care will continue as usual for the nursing home residents |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 'Comfort Care at the End of Life for Persons with Dementia' | Other | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Level of family carer satisfaction in decision making about the care of the resident | 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 | Baseline, up to 2 months |
| Measure | Description | Time Frame |
|---|---|---|
| The level of family carer satisfaction with nursing home care | 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. |
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Inclusion Criteria:
Family Caregivers
Health Care Professionals
Nursing home managers, registered nursing staff and GPs who:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Kevin Brazil, PhD | Contact | 0044 289097 | 5782 | k.brazil@qub.ac.uk |
| Name | Affiliation | Role |
|---|---|---|
| Kevin Brazil, PhD | Queen's University, Belfast | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Four Seasons Health Care -- Nursing Homes | Belfast | United Kingdom |
| Type | Date | Date Unknown |
|---|---|---|
| Release | Apr 4, 2017 | |
| Reset | Jun 16, 2017 | |
| Release | Jul 4, 2019 | |
| Reset | Aug 14, 2019 | |
| Release | Feb 20, 2020 | |
| Reset | Mar 13, 2020 |
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| Release Date | Unrelease Date | Unrelease Date Unknown | Reset Date | MCP Release Number |
|---|---|---|---|---|
| Apr 4, 2017 | Jun 16, 2017 | |||
| Jul 4, 2019 |
| ID | Term |
|---|---|
| D003704 | Dementia |
| D019636 | Neurodegenerative Diseases |
| D003142 | Communication |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
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| Project Nurse - ACP Facilitator | Other | 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. |
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| Baseline up to 2 months |
| Level of family carer anxiety and depression | 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. | Baseline up to 2 months |
| The comfort of the resident at the end of life | 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. | Baseline up to 2 months |
| Number of unnecessary hospitalisations | Assessed through the facility care home administrative records | Baseline up to 12 months |
| Aug 14, 2019 |
| Feb 20, 2020 | Mar 13, 2020 |
| D001523 | Mental Disorders |
| D001519 | Behavior |