VIVA caregivers: proposal of a methodology for social inclusion of female caregivers

Introduction

Traditional health programmes are limited to providing tools that ensure caregivers being physically adequate to perform a good job, but do not focus on the fact that caregivers also require time for themselves and their specific needs. The social inclusion programme focuses on the improvement of quality of the family life of caregivers who look after their disabled relatives. The programme is called VIVA, which in Spanish means LIVE.

Vive: Means ‘live’ and is an invitation to reconnect with one’s own project of life. The main objective is identification and thereafter development of personal competences. These competences are life project, assertive communication, charisma and empathy. The main objective is identification.

Interioriza: Means that by deep reflection, the person recognises feelings, personal challenges and burdens, in order to create awareness and acceptance for change and improvement, and also promote the real appropriation of one’s integral development. The main objective is recognition.

Valora: Is about the discovery of caregivers’ identity, values and principles, talents and abilities that structure themselves, restoring their self-image, self-concept, self-esteem, self-control and self-care, for their personal development and sustainability. The main objective is re-signifying their experiences.

Actúa: The aim here is helping caregivers in the construction of new strategies to improve their ability to create and be recursive in all the challenges of daily life, giving new meaning to their projects through sharing experiences and learn from others. On the other hand, they develop skills to improve their interpersonal relationships such as problem-solving. The main objective is transformation.

A pilot programme was conducted with 400 caregivers through four phases: information gathering, design, implementation and measurement from five different elements: body expression, emotions, skills development, empirical knowledge and legal rights.

Sample

A total of 400 caregivers were summoned to attend the programme. Only 359 completed it, 83.6% women and 16.4% men, between the ages from 31 to 60 years. 45% of the caregivers live in consensual union. On average, they have spent between 30 and 40 years caring.

Methods

Several qualitative data collection methods were used, such as observation, exchange of knowledge [1] and discussion groups, in order to identify and share the acquired experience of both female and male caregivers. These experiences were from ordinal life, lived in an individual way. For this reason, the caregivers did not have awareness that caring has social and political impact too [1,2].

Different pedagogical moments were constructed within the strategy of workshops. The workshops were expected to have therapeutic effects because the health professionals, called facilitators, and the caregivers together developed relational exercises from dialogue, affection, understanding, solidarity, empathy and joy while teaching and learning. These experiences build knowledge and promote the capacity of analysis, reflection and the commitment of skills’ discovery of the caregivers. Other therapeutic effects of the workshops allowed the caregivers clarify their doubts, listen to their philosophies of life and encourage better ways to manage their time, their emotions, their knowledge, thought arts and crafts including technical and professional knowledge, as well as the knowledge acquired in the daily care of other human beings.

Each dimension and their results are described as follows:

Dimension of corporal expression

Body expression workshops were performed to identify feelings and emotional needs. By focussing on corporal strategies, caregivers identified and recognised their competences, values, accomplishments, errors and feelings of guilt. From these components, we could understand the role of a caregiver, their struggles and achieved goals in order to identify strategies of how to overcome sufferings and hardships.

In general, at the beginning, the participants had difficulty expressing their feelings and needs with their bodies. At the end of the programme, they managed to recognise achievements and to propose life projects independent of their care task.

Dimension of empirical knowledge

An occupational questionnaire was applied to identify the knowledge, expertise and capabilities of the caregivers so they could recognise their needs and interests.

Leaders were named and strategies for vocational training were developed to encourage the caregivers to express themselves and participate in activities at work, educational and social environments.

Emotional Dimension

Once the emotional foundation of the caregivers was identified (composed by the basic feelings – happiness, sadness, fear and anger), strategies were designed for the emotion management.

Contrary to expectations, the permanent emotional base within the caregivers was highly positive (43%) (joy 14%, dynamism 11% and serenity 18%). At the end, 96% of the caregivers said they learned how to better handle their emotions and 91% felt better prepared to manage them.

Legal and political Dimension

From the human rights perspective, the caregivers were inquired to determine their knowledge of legal processes, disability policies and citizenship rights. Based on this information, we established an empowerment proposal that provides tools to the caregivers to understand and gain knowledge regarding legal means and disability public policies in order to facilitate the satisfaction of needs and the exercise of citizenship.

At the beginning, most participants related the perception of care with the feelings of love and protection; however, it was also associated with multitasking. The caregivers also perceived that the main human rights violated regarding caregivers were the Right to Health, the Right to Education, the Right to Work and the Right to Mobility.

The most relevant aspects for the caregivers were healthcare rights, recreation, freedom of expression and non-discrimination, but committees’ participation and voting rights were considered relevant to a lesser extent.

Conclusions

When the care activities were permanent and developed by a single person, the caregivers’ perception of themselves was blurred over time, which was evident in the absence of personal activities that were not constantly connected with the disabled person.

The society has recognised the importance of the care task within the frames of old age and childhood; however, the care in situations of permanent disability continues being invisible. In the social imaginary, the care of disabled people is understood as a responsibility of the relatives within their private sphere. This fact generates processes of discrimination and social exclusion of these families.

The caregivers disregarded their own needs and life project prioritising those of their relative with disability. For this reason, they were not aware of the importance of their growth as human being and the need of time for themselves.

The lack of disability policies focus on care leads the development of private care services offered by the market. However, families with low income do not access to these services, which generates economic disadvantages for them affecting the family’s quality of life.

Finally, women have been socially and culturally assigned to the work of caring within the family causing that being mother, daughter, wife or sister determines the responsibilities of caring for relatives with disabilities without receiving any monetary compensation. Thus, women are living in gender and kinship-based inequality regimes because caring is a filial, affective and emotional duty.

Implications

Physiotherapy interventions should not focus exclusively on the person with disability, and caregivers should be one of the main protagonists in the rehabilitation process. It is necessary to design and implement special programmes that focus on the work of caring and the people in charge of it, in a way to ensure that they also have a life project to be lived. We recommend future research in order to document quantitative and qualitative improvements in each one of the dimensions developed within the VIVA Program.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The study was funded by Universidad Nacional de Colombia and Secretaria Distrital de Integración Social, La Unidad de Apoyo y orientación de Suba y el Instituto Colombiano de Bienestar Familiar, whom it was possible to implement different projects aimed at caregivers of persons with disabilities.