Evaluation of the EHPAD Caregiver/Pact & Pad Psycho-educational Program for Caregivers With an Institutionalized Parent
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Enrollment
- 73
- Locations
- 1
- Primary Endpoint
- HADS (Hospital Anxiety and Depression scale)
Study Overview
Brief Summary
Moving into an institution is a new stage in the life of the patient but also of the caregiver. The caregiver is overwhelmed by various feelings such as loss of control, powerlessness, guilt, sadness, the feeling of loneliness at home but also relief. This experience can be characterized by great anxiety and the feeling of being misunderstood by the family and professional environment.
This emotional state is not without consequences for the caregiver/resident and caregiver/care team relationship.
Several factors have been identified that may be at the origin of these states.
A new training, information and support program has been created to present these different factors to caregivers and to allow them to address them with professionals in a group setting.
Detailed Description
In 2015, there were 593,005 places for dependent elderly people in institutions in France. The increase in the life expectancy of the population and the decrease in the number of caregivers predicted by the World Health Organization suggests that institutions will be increasingly solicited. Also, due to the increase in neurodegenerative diseases, family caregivers are being forced to resort to institutionalization. According to the study conducted by the number of family caregivers of sick, elderly, or dependent individuals is estimated to be around 11 million in France. 58% of these caregivers are women. 52% work, 86% help a family member, including 41% one of their parents, 34% help several people, compared to 28% in 2017 (multi-caregivers), 57% help a relative in a situation of dependence due to old age (compared to 48% in 2017). Finally, 82% devote at least 20 hours per week on average to their loved one(s), 37% of the caregivers surveyed admit to receiving no outside help even though they are often elderly themselves.
Moving into an institution is a new stage in the life of the patient but also of the caregiver. The caregiver is overwhelmed by various feelings such as loss of control, powerlessness, guilt, sadness, the feeling of loneliness at home but also relief. This experience can be characterized by great anxiety and the feeling of being misunderstood by the family and professional environment.
This emotional state is not without consequences for the caregiver/resident and caregiver/care team relationship.
Several factors have been identified that may be at the origin of these states.
A new training, information and support program has been created to present these different factors to caregivers and to allow them to address them with professionals in a group setting.
Study Design
- Study Type
- Interventional
- Allocation
- Randomized
- Intervention Model
- Parallel
- Primary Purpose
- Prevention
- Masking
- None
Eligibility Criteria
- Ages
- 18 Years to — (Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Family caregivers defined according to the European charter for family caregivers COFACE: "the non-professional person who comes to the aid mainly, in part or totally, to a person dependent on his or her entourage, for activities of daily living. This regular help can be provided on a permanent basis or not and can take several forms, in particular: nursing, care, support for education and social life, administrative procedures, coordination, permanent vigilance, psychological support, communication, domestic activities. . Currently, these caregivers have an elderly relative living in an institution or in the process of institutionalization
- •Have been a caregiver for at least six months
- •Have a parent in an EHPAD for less than 25 weeks
- •The loved one is not at the end of life when the caregiver starts the program
- •Participate in at least five workshops out of the seven offered as part of the program.
- •Be of legal age (at least 18 years old)
- •Presence of depression or anxiety according to HAD
- •Be motivated to follow the program
- •Signature of consent.
- •Be affiliated with a social security scheme
Exclusion Criteria
- •Caregiver with a loved one living at home without institutionalization plans
- •Professional caregivers, former caregivers
- •Absence of depression and/or anxiety
- •Deceased relative
- •Have untreated diagnosed psychiatric disorders
- •To be suffering from proven cognitive disorders
- •Already benefit from another caregiver assistance program.
- •Patient under AME
- •Vulnerable people
Arms & Interventions
N arm
Intervention: Psycho-educational program EHPAD caregivers / Pact & Pad for caregivers with a parent in an institution (Behavioral)
Control group
Intervention: Psycho-educational program EHPAD caregivers / Pact & Pad for caregivers with a parent in an institution (Behavioral)
Outcomes
Primary Outcomes
HADS (Hospital Anxiety and Depression scale)
Time Frame: Week 24 for the group C (T3)
Reduction in anxiety symptoms of 1 to 3 points according to the HADS Hospital Anxiety and Depression scale) between the start and the end of the program. The depression score assessed by the HADS will be measured. The maximum score that can be obtained for this sub-score is 21. Within the questionnaire, the order of scoring (from 0 to 3 or from 3 to 0) is alternated, in order to limit the bias linked to their repetition. Depending on the participants' scores on the depression subscale, it is possible to determine the presence or not, as well as the intensity of the depressive disorder: absence of depressive disorder (score ranging from 0 to 7), suspected depressive disorder (score ranging from 8 to 10) and proven depressive disorder (score ranging from 11 to 21). Thus, the higher the score, the more severe the participant's symptomatology. The first French validation of this scale was carried out by Lepine et al., 1985.
HADS (Hospital Anxiety and Depression scale)
Time Frame: Inclusion
Reduction in anxiety symptoms of 1 to 3 points according to the HADS Hospital Anxiety and Depression scale) between the start and the end of the program. The depression score assessed by the HADS will be measured. The maximum score that can be obtained for this sub-score is 21. is possible to determine the presence or not, as well as the intensity of the depressive disorder: absence of depressive disorder (score ranging from 0 to 7), suspected depressive disorder (score ranging from 8 to 10) and proven depressive disorder (score ranging from 11 to 21). Thus, the higher the score, the more severe the participant's symptomatology.
HADS (Hospital Anxiety and Depression scale)
Time Frame: Week 16 for the group N (T2)
Reduction in anxiety symptoms of 1 to 3 points according to the HADS Hospital Anxiety and Depression scale) between the start and the end of the program. The anxiety score assessed by the HADS will be measured. The maximum score that can be obtained for this sub-score is 21. Within the questionnaire, the order of scoring (from 0 to 3 or from 3 to 0) is alternated, in order to limit the bias linked to their repetition. Depending on the participants' scores on the depression subscale, it is possible to determine the presence or not, as well as the intensity of the depressive disorder: absence of depressive disorder (score ranging from 0 to 7), suspected depressive disorder (score ranging from 8 to 10) and proven depressive disorder (score ranging from 11 to 21). Thus, the higher the score, the more severe the participant's symptomatology. The first French validation of this scale was carried out by Lepine et al., 1985.
Secondary Outcomes
- Visual scale(Week 24 for the group C (T3))
- CAMI (Carers Assessment of Managing Index)(Week 24 for the group C (T3))
- Zarit Caregiver Burden Scale(Week 24 for the group C (T3))
- CASI (Carers Assessment of Satisfaction Index)(Week 24 for the group C (T3))
- CADI (Carers Assessment of Difficulties Index)(Week 24 for the group C (T3))
- Quality of life (QOL AD)(Week 24 for the group C (T3))
- HADS (Hospital Anxiety and Depression scale)(Week 16 for the group C (T2))
- Scale of Intolerance to Uncertainty(Week 24 for the group C (T3))
- HADS (Hospital Anxiety and Depression scale)(Week 8 (T1) for both groups)
- Zarit Caregiver Burden Scale(Inclusion)
- Zarit Caregiver Burden Scale(Week 8)
- Zarit Caregiver Burden Scale(Week 16)
- CADI (Carers Assessment of Difficulties Index)(Inclusion)
- CADI (Carers Assessment of Difficulties Index)(Week 8)
- CADI (Carers Assessment of Difficulties Index)(Week 16)
- CAMI (Carers Assessment of Managing Index)(Inclusion)
- CAMI (Carers Assessment of Managing Index)(Week 8)
- CAMI (Carers Assessment of Managing Index)(Week 16)
- CASI (Carers Assessment of Satisfaction Index)(Inclusion)
- CASI (Carers Assessment of Satisfaction Index)(Week 8)
- CASI (Carers Assessment of Satisfaction Index)(Week 16)
- Quality of life (QOL AD)(Inclusion)
- Quality of life (QOL AD)(Week 8)
- Quality of life (QOL AD)(Week 16)
- Visual scale(Inclusion)
- Visual scale(Week 8)
- Visual scale(Week 16)
- Scale of Intolerance to Uncertainty(Inclusion)
- Scale of Intolerance to Uncertainty(Week 8)
- Scale of Intolerance to Uncertainty(Week 16)