M-Care surveyStavroula PapavasiliouUniversity of AthensAntalya 7/5/2015

M-CARE projecto An estimated 45 million people in Europe have a long-

standing health problem or disability. 70% of them will be over 60 by 2020. Elderly and people with disabilities (PwD) and especially those with mobility & sensory impairment depend considerably on Personal Caregivers (PCGs).

In this respect M-CARE conducted an online survey and a state of the art analysis in order:

o To identify the needs of the project's beneficiaries (PCGs, PwDs, their family members, older people, stakeholders).

o To obtain a good perception of the need for adjustments in existing PCG training practices.

o To define a set of learning activities appropriate to, and usable across, the range of user needs.

o To gain familiarity with the nature and potential value of adjustments in training methods and in their learning strategies to meet their needs.

o To identify and highlight similarities and differences between national contexts in the partner countries.

Methods & Toolso Combination of methods used:

o Online questionnaires

o Questionnaires as basis for face to face interviews / focus groups

o Desktop research

A total of 636 questionnaires were completed by respondents living in Flanders (Belgium), Bulgaria, Germany and Turkey (some responses were submitted in English as well).

PCGs give insights concerning the training they have received, their past working experience and their educational background. Furthermore, they provide valuable information on what type of training they would like to receive (120 respondents)

People with disabilities and older people help us collect information on current PCG practices, on which PwD needs are addressed by the PCGs and on what type of PCG training they think would benefit them (276 respondents)

Policy makers (40), training centres (98), family members (102) contribution in the survey is important in identifying the current situation with PCGs in each country, the qualification for becoming a PCG and the different policies across the project countries

Research sample

Key findings

PCG roleA broad definition of a personal caregiver for people with disabilities and older people could be that of the employed professional who addresses the needs of people who are in one or more ways incapable of personal care tasks.

The PCG profession is formally described only in Bulgaria(among the project countries).

There are a lot of different definitions given for the role in each project country. There are differences concerning what a personal care giver can and cannot do, his/her working conditions and the required training.

PCG role - Flanders (Belgium)There is not a formal job description for the profession of the personal caregiver. There are however three conditions set by the Flemish Agency for Disabled Persons (VAPH) as regards agreements between beneficiaries of the personal assistance budget (PAB), part of which is used to pay the salary of a PCG:

Respecting labour regulations and VAPH regulations ("Guidelines")

Written agreement between the budget and personal assistants (employment contract)

The personal assistant must be an adult (over 18 years)

There is a list of requirements (competences, skills, personal characteristics, working conditions) the Flemish employment agency expects from candidate PCGs.

In practice it is however hardly the case that someone has these combined skills.

PCG role - Flanders (Belgium) The PAB holder can employ personnel to perform a variety of

tasks to assist in the organization of his / her daily life

A PCG cannot do activities that fall under “performing therapies” (for which only the RIZIV has jurisdiction – RIZIVI or NIHDI National Institute for Health and Disability Insurance).

PAB may be used for all tasks that someone with disability no longer can do themselves or with great difficulty. For example:

Household activities (e.g. cooking, cleaning)

Physical support (e.g. dressing, personal hygiene)

Go to other places

Day care (e.g. assistance at work, family visits, recreation)

Administrative work (e.g. help organize papers, read letters)

Pedagogical counseling

PCG role - Bulgaria In Bulgaria, there is a formal job description for PCGs.

Minimum age requirement is 16 years

Graduation from a PCG VET course is required

The working time of caregiver is determined by the needs of staff in institutions for further treatment and rehabilitation. Most often they work under the hourly work schedule of the labour legislation

Caregivers assist patients with dressing and undressing, in keeping the body clean, in moving around. They also provide support of breathing pattern, they monitor clinical information, they ensure that there are optimal conditions for sleep and rest, they provide entertainment for the patient (reading books, walking, etc.) and they provide social and psychological support.

PCG role -Bulgaria Currently caring for the elderly, sick and disabled persons in

the home environment is implemented under a national program "Assistance to People with Disabilities", in European projects and other. National Classification of Occupations enables hiring professional caregivers under the Labor Code.

The families can get a PCG by the following different options:

The family selects a person to be a PCG and pay him/her without employing him/her legally

The family or its member applies to the local authorities that employ long term unemployed people to work as PCGs

The family can apply for service providers (usually NGO) who provide them with a PCG

The family can have an agreement with a volunteer, whose expenses they cover (meals, transport etc.)

PCG role - Germany No formal job description for PCGs

In Germany there is not a general legislative framework including all possible services (caring and nursing). There are rules of law or directives/ requirements for each service or offer.

Medical care and medical nursing care (at home and in residential care home for the elderly) are services of the German health insurance or nursing care insurance (tax funded). 50 – 200 € could be the personal budget for the “extra PCG service”.

The PWD and older people actually do not have to pay for the PCG services, because it is refinanced by different state programs and realised by social and VET institutes

PCG role - TurkeySince 2005 all PwD in need of care -whether they had social insurance or not- became entitled to benefit from care services.

PwDs in need without family and social insurance, are admitted to public or private care institutions or receive care services at home. The role of the personal caregiver is partially covered by the legislation for certified caregivers employed in public and private care institutions.

According to it, their main responsibility is to provide services for PwD following the individual prescribed care program (hygiene, nutrition, etc.), to provide psychological support and inform medical staff if necessary.

Needs of assistanceMost of the PCGs in the project countries provided support to people with motor disabilities.

* The respondents could provide more than one answer, if they encountered a combination of challenges.

67.0%

27.9%24.9%

15.0%19.3%

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

Mobility Visual Hearing Intellectual Chronic

(multiple answers)

Needs of assistanceThe main needs of assistance reported included help with moving around, transportation, being lifted in the house, sitting, carrying heavy things, receiving help when travelling.

Many respondents mentioned that they needed help with their personal hygiene, eating, grooming, toilet usage and getting dressed. Some also needed basic nursing services. It was also noted by some respondents that they needed help with household activities, such as shopping, cooking, cleaning, taking care of pets and maintaining the garden.

An important part of the needs indicated include those related to social activities and provision of emotional support (attending public events and meeting friends, assistance in self-service restaurants, providing emotional / social support services, providing memory workout).

Needs of assistanceWhile most of the respondents (84%) need assistance at home, they also highlighted the need of assistance in the workplace, in education, as well as in vocational rehabilitation.

35% of the respondents stated that they need assistance in the public space. Some respondents noted the need for sign language support and assistance for reading information online.

Six out of ten respondents use some kind of technological support or/and assistance device (wheelchair 75%, bath wheelchair 29%, etc).

Flanders (Belgium)

Bulgaria Germany Turkey

Home 61,9% 85,7% 100,0% 84,5%

Work 19,0% 21,4% 0,0% 6,1%

School 0,0% 28,6% 0,0% 7,4%

Public space 71,4% 85,7% 88,0% 40,5%

Needs of assistanceThe personal care giving needs are addressed mostly by professionals (59,1%)

In Germany 80% use professionals. In Flanders (Belgium) and Turkey the respective rate is 60% and in Bulgaria 58,3%.

40.9%

59.1%

Family

memberProfessional

Satisfaction with PCG servicesThe survey respondents (PWD and their family members) are satisfied in general by the PCG services they receive.

PWD: 81% are either satisfied or completely satisfied, while 13,1% are neutral and 5,9% are dissatisfied/completely dissatisfied

Family members: 65,9% are either satisfied or completely satisfied, 26,4% are neutral and 7,7% are dissatisfied/completely dissatisfied.

This is also mirrored in the fact that the majority of family members (73%) say they trust their PCG.

Employment status of the PCGs37% of PWD and older people said that their PCG is not a member of the legal workforce (with social insurance, license, etc). This indicates that they use non-formal employment, family members or volunteers.

The rate of PwD who say that their PCG is not a member of the legal workforce per country are as follows:

Flanders (Belgium): 33%

Bulgaria: 57%

Germany: 80%

Turkey: 27%

Gender related issuesPWD: In Germany 0% have gender preferences. In Flanders (Belgium) the respective rate is 19%. In Turkey and in Bulgaria the majority of PWD and older people have a preference in a certain gender (73% and 60% responsively).

Families: In Germany 0% have a preference and in Flanders (Belgium) only 16,7%. In Bulgaria the respective rate is 92,3% and 75% in Turkey.

57.6%

42.4%

Yes

No

0.0% 50.0% 100.0%

Do you have a preference of PCG gender? (overall results of PWD/Older people)

Educational background of PCGsEven though in all project countries (apart from Bulgaria) the PCGs have not received special training (60,7%), a relatively high number (43,9%) of them say they wouldn't like to have such training. This fact can be also mirrored in the confidence levels of the PCGs. In general, in all project countries, they feel competent (85,4%) as professionals.

Do you feel competent as a PCG?

85.4%

14.6%

Yes No

Training preferences(PwDs for their PCG)

74,4% of PWD selected basic psychological support as a domain on which they would like their PCG to have extra training on. The second most popular option was understanding a disability (65,3%) and third was practical approaches in daily care with examples (51,1%) (respondents were able to indicate more than one option).

Answer Options Flanders

(Belgium)

Bulgaria Germany Turkey English Total

basic psychological support 5 6 24 122 6 163

understanding a disability 10 12 25 92 4 143

interpersonal communication skills 5 8 25 97 5 140

practical approaches in daily care (examples) 11 8 25 64 4 112

types of technical assistance devices 4 5 24 67 2 102

examples on care per disability 5 9 25 57 2 98

environmental challenges/accessibility 9 3 23 58 1 94

Training preferences (PCGs)PCGs are divided between a broad (50,6%) and a specific (49,4%) training program.

Concerning the issues on which they would like to receive training, PCGs indicated the following (in order of preference -multiple answers were possible):

Practical approaches in daily care with examples (62,9%)

interpersonal communication skills (58,4%)

understanding a disability (58,4%)

basic psychological support (56,2%)

examples on care per disability (55,1%)

environmental challenges/accessibility issues (42,7%)

types of technical assistance devices (28,1%)

Training preferences (PCGs)Most of the respondents prefer a combined training provided by both online resources and face to face activities or using printed material. Some users stress the need for practical exercises. It is important to highlight that the preferred methods for training cover all areas that M-CARE plans to address:

online courses and practical exercises

videos with practical examples accessible through mobile devices

personal training through a course or book

infocards

interactive

face to face

Training practicesThe types of training currently in use (as reported by training centres that participated in the survey) are: Individual interviews / Group discussions, print material, practical training similar to internships, legislation-professional knowledge, in-service training, PowerPoint slides, only one answer for online.

The training centres suggested the following types for PCG training:

Practical training / Training in real environment

Online training

Personal communication program

Individual forms of trainings for special needs

Video

Group training

Type of care / training offered (by training centres)

Answer Options Flanders (Belgium)

Bulgaria

Germany Turkey Total

Providing emotional / social support services

3 7 25 40 76

Observing, documenting and reporting clinical information

2 5 24 31 70

Assisting with meal preparation, grocery shopping, dietary planning, and food and fluid intake

2 6 25 33 66

Taking and recording blood pressure, temperature, pulse, respiration, and bodyweight / Collecting specimens for required medical tests

2 3 24 41 62

Assisting with mobilization 0 6 0 26 32

Assisting with personal hygiene 0 1 0 30 31

Training practicesThe types of training currently in use (as reported by training centres that participated in the survey) are: Individual interviews / Group discussions, print material, practical training similar to internships, legislation-professional knowledge, in-service training, PowerPoint slides, only one answer for online.

The training centres suggested the following types for PCG training:

Practical training / Training in real environment

Online training

Personal communication program

Individual forms of trainings for special needs

Video

Group training

Thank you!For more information please contact:Stavroula Papavasiliou: spapavasiliou@gmail.com

Modules/units/learning objects (Flanders)

“Caregiver” VET course

Duration: 6 months

Total number of hours: 694 hours (266 hours theory, 428 hours practice)

Forms of training: daily course, evening course, weekend course, self-study

Certificate of qualification or certificate training

Minimum age: 16 years of age

mal educational level: elementary education.

Theoretical knowledge of anatomy and physiology, general and special patient care and ethical aspects of communicating with the patient, family and health professionals

Students gain practical skills relating to the physical comfort of the patient, care of the hygiene of the room and the bed of the patient, palliative care.

Modules/units/learning objects (Bulgaria)

“Part of the job profile” 180 hours (4 months and a half) training course

The course is provided on Fridays, Saturdays and Sundays

Students must be at least 16 years old and have completed 10 class of the secondary school. The tuition fee is 1500 BGN (approx. 750 euro)

At the end of the course those who passed successfully both theory and practice are receiving a document for the part of the job profile which is different from the certificate mentioned in the above case.

Training in both is delivered:

o Face-to-face

o Online

o Blended learning

o Internship / mentoring programmes

Modules/units/learning objects (Germany)

Basic course: between 6 and 20 hoursMentoring program: about 2 hours per monthExamples of training contents:Caring and nursing in private homes (bed confinement, daily life support, health care, healthy food)

Caring and nursing for people, who limited in mobility Incontinence DementiaHealth situation of older people (dementia, diabetes, cardiac infarct, stroke)

First aid (reanimation, wound care, bandaging techniques)

Prevention of accidentsRules of law, forms and documents (patient decree, patients wills)

The training is conducted face to face in small units at the CJD premises or individually at home. There is no use of online or mobile platforms.

Modules/units/learning objects (Turkey)There is a training program from the Ministry of Education with 400 contact hours. People between the ages 18-50 may attend these courses. The minimal education level is graduation from entry level.

Training modules have been approved by the Ministry of Education named as “Module program for care givers for the elderly”. This program consists of 1920/1272 contact hours.

The Ministry of Education also has a program named as “Module Program for care givers for a disabled person”. This program consists of 2280/1376 contact hours.

The training is conducted face-to-face, mainly in educational institutions combined with internship in real environment. There is no use of online or mobile platforms.

Who provides the training In Flanders (Belgium) PCG training seems to be done rather

informally.

In Bulgaria a PCG trainer should be a doctor, nurse, midwife, paramedic, physical therapist with the degree "Bachelor" or "Master" in "Health Care Management" with experience of at least 3 years or a non-medical professional in areas related to vocational training. 62,5% of the training centres that participated in the survey offer a PCG training program.

In Germany 92% of the training centres that participated in the M-CARE survey offer a PCG training program. The trainers are nursing professionals for older people and people with disabilities, experts for care giving, other professionals and mobility teachers.

In Turkey 53,8% of the training centres that participated in the M-CARE survey offer a PCG training program. The training is conducted by the manager or deputy manager of care centres, social workers and professional experts. The educational backgrounds of these persons generally include “bachelor's degree, associate degree”.