What is a caregiver?
They are adults with some type of close relationship, who undertake care tasks and activities with someone they love who is in some circumstance of incapacitating illness and intervenes with them in decision-making.
Caregiver duties:
The caregiver can be a family member, an informal or formal person.
The family caregiver is a member of the subject's family who requires care, provides permanent or temporary care, and may not have the training to carry out this task; the informal caregiver is the person who is not trained for this task and does not have a family bond with the subject of care, whether or not their task is paid; and the formal caregiver is the person who has a legal and labor relationship with an entity or a natural person and is trained to perform this role.
This role, according to the Ministry of Health (2015) is commonly assumed by women, due to the fact that there are a series of social and cultural constructions around the care functions linked to gender, such as reproduction, upbringing and care. caring for others, assuming that family care is part of women's nature.
Difficulties for the caregiver:
The caregiver may experience feelings such as loneliness, abandonment, sadness, nervousness, lack of free time to pursue goals, and difficulties with sleep and rest.
This begins to become a problem for him that puts his own well-being in crisis. Likewise, the same authors emphasize that caregivers' quality of life can be affected, due to the fact that the patient's physical, psychological and cognitive limitations, as well as the change in the execution of their roles, concern about the disease of the patient (including the financial burden), the quality of social interactions and the lack of support networks make them experience permanent stress.
Caregivers and children with complex congenital heart disease:
According to Ballesteros de Valderrama, Novoa, Muñoz, Suárez and Zarante (2006), the quality of life of children with congenital malformations and their families is altered by the implications of the disease. In the patient, the situation he is going through generates vulnerability and loss of control and, at the same time, produces in others a particular way of perceiving him.
Maternal attachment and separation anxiety are highlighted. This may be influenced by the type of interaction that is created between the mother and the child, driven by an overprotective tendency and based on feelings of guilt and responsibility.
In the caregiver of a minor with congenital heart disease, on the other hand, there are different circumstances that can be harmful, involving their physical and mental health and their family, social or work conditions, such as, for example, the feeling of loneliness they experience for the lack of support networks with which to count for the expression of feelings and frustrations or support in care and the little time they have for their recreation and rest spaces.
How to take care of the caregiver?
According to the Hospital Clínic de Barcelona (2012,) the caregiver must learn to:
- Ask for help, both from family and friends and from institutions or specialists in the field.
- Maintain healthy habits, in relation to sleep days, physical activity, food and moments of pause and rest.
- Organize time, so that you can organize the tasks and activities you do and set limits on the help you provide.
- Listen to your body's warning signals to take action, such as tiredness, isolation, substance use, concentration or memory problems, palpitations, tremors, joint or muscle pain, increased appetite.
The suffering of the caregiver:
In addition, and considering Romero, Montalvo and Flórez (2010), from the institutional and family perspective, it is important to detect signs and signals of both physical and psychological exhaustion in caregivers.
Fatigue, sleep disturbances and a feeling of loss of control linked to the patient's future are highlighted. On the other hand, the Ministry of Health (2015) highlights the work of care as a task articulated between different levels, with the corresponding actors in this system being the State, society and the family.
This care system promotes shared responsibility among all those involved, highlighting that the foundation of social support is in the family and community network.
In this sense, it is sought that the following environments participate in the task of care: a) Home, b) Community, c) Labor and, d) Educational, seeking to activate social and institutional networks that provide support to adequately deal with the disease, including to psychosocial care programs, support groups with families who are experiencing similar situations, self-care actions, prevention programs from work, linking caregivers to educational processes, among others (Ministry of Health, 2015).
That is why the management of the patient implies a deeper bond with his family and his environment and not only with the diagnosis of the disease and everything that implies medical and surgical procedures, to provide psychological care and favor an increase in quality. of life (Ballesteros et. al, 2006).
