Health: here is the Charter of Rights of the 'Family Caregiver'

A decalogue that complements that on the rights of the patient, conceived and elaborated by a joint team of psychologists and oncologists of the Campus Bio-Medico University Hospital. Main objective: to shed light in an institutionalized way on the role and commitment of patients' family members and on the responsibilities and support that healthcare facilities must and can offer them in order to limit the effects of the relative's illness on their quality of life and relationships

Rome, 1 March 2018 – Comes fromUniversità Campus Bio-Medico di Roma la Bill of Rights of the Family Caregiver: a document in ten points which shines a light on tasks, prerogatives, importance, but also on difficulties, needs, the upheaval in which the existence of family members 'providers of care' runs up, one of the key elements in the therapeutic path of anyone who has to deal with a disease, especially if it is chronic, disabling or oncological.

The Charter has attracted theattention of the medical and scientific world and in particular of the oncological one, to the point of having been recently published in the prestigious magazine ESMO Open, with the title 'The Bill of Rights of the Family Caregiver. The role and importance of the caregiver: an Italian proposal'.

A Decalogue of the rights of family members who assist a sick person

Inside, there are enshrined principles that are important for care providers, such as “il right to receive adequate information on the disease and on the proposed treatments", the one to receive "by the team taking care of all information you need to best care for your loved one"and "clear and comprehensive information in order to use all the local services useful in family care”, as well as to “legitimize your feelings: along the path of assistance to your loved one it is normal to feel tired, sad, nervous or in trouble”; moreover, there are contemplated the right "to take care of yourself","to recognize your own limitations and capabilities","di keep living spaces for themselves” and, if necessary, “to ask for and receive help” or, again, “to protect your health” through healthy eating, adequate hours of rest and routine medical check-ups, as well as “the right to access high quality health services".

The US study on caregivers: doctors lacking clinical information for family members

Apparently trivial topics, if it were only one recent survey conducted by three American centers (University of Michigan, University of Pittsburgh and VA Ann Arbor Healthcare System) out of 700 adults committed to helping a member of the family suffering from a chronic disease such as diabetes, heart disease, depression or arthritis (pathologies, however, which do not necessarily compromise the caregiver's self-sufficiency and require an average of a couple of hours a week for the caregiver) has shown how 41 percent of family members feel they do not know enough about their loved one's condition and treatments which should follow. Not only: a third among caregivers those interviewed who were able to speak to the referring physician (45 per cent of the total) havechiarato that the health workers have never shown themselves willing to share with them the clinical information of your spouse.
The researchers justified these results by highlighting that “i doctors avoid involving family members due to lack of time either because of privacy concerns, or because they never asked the patient if there was anyone close to them to help them”. Data which, if confirmed on a global scale, would say a lot about the difficulties experienced by many family members involved in the process of caring for a relative.

In Europe, 80 per cent of care for dependent patients is provided by family members

- Authors of the Charter there are five of them and they all belong to the Campus Bio-Medico University Hospital: Daniele Santini e Giuseppe Tonini, respectively head of the medical Day-Hospital and of the Medical Oncology Complex Operative Unit; Daniela Tartaglini, Director of the Department of Nursing Sciences; Antonella Sisto e Flavia Vicinanza, psychologists and psychotherapists of the Clinical Psychology service.

They left, as often happens, come on numbers: in particular, those of a study (Ripamonti et al. 2014) according to which in Europe it is estimated that 80 percent of assistance lent to non self-sufficient people is provided by spouses, children and other family members. In this sense, the activity of care giving implies for them a constant and long-term commitment, that it can get wearing and cause high levels of stress and psycho-physical discomfort. “In literature - Explains Antonella Sisto, expert of the Clinical Psychology Service of the Campus Bio-Medico University Hospital and first author of the publication – it is often noted that caregivers are exposed to stressful factors on a prolonged basis, defined as 'burden'. This term actually encompasses a multi-dimensional concept and indicates the impact and the effects of the care burden on psychophysical well-being and on quality of life of informal caregivers".

"This Charter, which is the shared heritage of our structure - he adds Daniele Santini, head of the Oncological Day-Hospital e principal investigator of the publication – was born out of the need to think about choices of care and professional support that allow families to experience the difficult task of providing assistance being able to be supported in turn, to face the path traced by the disease in the best possible way”. In fact, one of the main objectives of the document is to place not only the patient but also his family at the center of the treatment process caregiver, giving a new and very special value to the role of the family in strengthening and supporting the person's commitment to managing their own health.

'Side' effects: anxiety, sleep disturbances, depression, gastrointestinal problems and headache

In fact, the repercussions on the life of the caregiver appear multiple and may favor the onset of sleep disturbances, depression, anxiety, asthenia, gastrointestinal disturbances and headache, up to compromising functioning in areas of daily life such as the personal environment, the work role, the sphere of relationships and family dynamics (Ronald D et al., 2014). From research involving i family members of lung cancer patients it emerged that the 46,5 percent of the participants suffered from anxiety, while the subjects depressed were 27,9 percent. The same study also showed that the incidence of anxiety in caregiver exceeded the rate of the same cancer patients (46,5 percent versus 32,6 percent).

"From these evidences - highlights Daniela Tartaglini, co-author of the Charter – derives that if the caregiver falls ill, instead of representing a resource it could constitute an aggravating circumstance in an already very difficult context. It is therefore necessary that the healthcare professionals recognize the importance of the care function and intervene promptly to prevent or reduce the onset of the 'caregiver burden'". Studies show, in fact, that as the family member's illness progresses, the psycho-physical problems related to the care burden tend to worsen, with direct consequences on the quality of life of the family member who provides assistance (Johansen S, Cvancarova M, Ruland C, 2017).

La Bill of Rights of the Family Caregiver is an integral part of the kit services of the Campus Bio-Medico University Hospital. "It arises in the context of a integrated approach to care which has seen the growth in recent years of a multidisciplinary team made up of oncologists and psychologists who work together, side by side, to place the patient at the center of the treatment path and support the family caregiver in an effective and innovative way, accompanying him in his onerous task of assisting the sick family member”, he clarifies Flavia Vicinanza, psychologist of the Clinical Psychology Service and co-author of the document.

A role that the experts of the Campus Bio-Medico University Hospital wanted to recognize and enhance in such a way as to make all personnel responsible in this direction of the structure. “Feel recognized as bearers of rights, as well as providers of support and patient support - he adds Giuseppe Tonini, Head of Oncology at the Campus Bio-Medico University Hospital – for family members who assist a relative, it represents a key step in favoring the activation of the so-called 'resilience' processes, i.e. the ability for a person to face and successfully overcome a traumatic event or a period of difficulty".