2020 PATIENTS AND FAMILIES

Education, support and accompaniment programs for patients and families

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The Institut Guttmann offers a whole series of accompaniment, support, counseling and information programs aimed at patients undergoing treatment and their families. These help to minimize the threat perceived by the losses suffered after an injury of neurological origin, and serve to enhance their own and community resources, to face the new situation, in order to facilitate their recovery and adaptation process.

Interventions aimed at relatives and / or caregivers

The aim of the sessions run for families is to provide them with the support, guidance and information they need on admission and during their hospital stay. In cases such as those treated at the Institut Guttmann, it is very important for the family to feel accompanied, as people close to a patient who has suffered a neurological disability experience a major shock to the system and have to face the physical and neuropsychological changes (emotional, psychological, cognitive and behavioural) that come from a neurological injury, as well as the changes that take place in the relationships established between them, and alterations to the expectations and goals of the family unit. The family is a key element in the rehabilitation of individuals affected by a disability of neurological origin.

2020 was a year during which we were forced to restrict, and on some occasions even cancel, many training and education activities for patients and families due to the pandemic emergency situation and the restrictions imposed by it. We have had to reinvent ourselves and direct our relationship with them using telematic methods on most occasions.

Therefore, during 2020 we ran the Family Support Programme for patients admitted to the Institut Guttmann during the period of social distancing caused by Covid-19, focusing on:

  1. Organising a Telephone Service to provide more complete and continuous information and support to all patients admitted to each of the four Hospitalisation Units to compensate the lack of face-to-face contact. There were a total of 2,668 phone calls. The purpose of the calls was:
  • To inform the family directly, providing daily contact on everyday aspects, and above all to make up for the enforced absence.
  • To give families peace of mind and confidence.
  • To accompany people and offer an active listening space.
  • To offer an alternative to help solve practical aspects: family contacts, protection measures, answering doubts or concerns.
  • Helping manage the collection of clothes and personal items between relatives and patients. Given that family members could not access the hospital for a long period of time and due to the application of hospital biosecurity measures in order to avoid contagion, the Social Work and Nursing departments have carried out valuable support work in this management.

Launching the “Covid-19 Platform” on SiiDON, created specifically to provide guidelines, exercises, videos and recommendations for patients and their families during and after lockdown. Here they could find general information about coronavirus, daily routines to improve cognitive performance, guidelines for families on how to manage behavioural disorders, physiotherapy and occupational therapy exercises, crisis management, and guidelines on health and healthy habits.

The initiative was very well received with a very significant increase in the number of people registered, 86% more views and more than 23,000 visits in the first 4 months and over 80,000 throughout the year. This action was recognised as Good Practice by the Campus Arnau d’Escala Foundation and the Department of Employment, Social Affairs and Families at the conference “Rights and Innovation in services to people in times of crisis”.

A programme to support brain health during lockdown using telematic cognitive stimulation tools

During the first half of April, given the situation generated by the Covid-19 pandemic and the effects that lockdown could have on the over-50s, the Institut Guttmann decided to launch an open version of the Guttmann, NeuroPersonalTrainer® platform, known as Open GNPT, so that people with a higher risk of neurological or psychiatric pathologies could do exercises from home that would help stimulate their brain and keep it active during lockdown. The application let them choose from over 50 tasks related to attention, calculation, reasoning and memory. Cognitive training is a good option during situations like lockdown or isolation, helping us focus and direct our attention, at least for a period of time, towards cognitive activities that challenge our ability to think, help us to keep our mind active and to function better in our daily life, optimising our brain’s resources. A total of 3,500 people registered and completed over 90,000 cognitive training tasks.

Education and support programmes for relatives of patients admitted during the period of social isolation caused by Covid-19

The Institut Guttmann offers a series of support, guidance, orientation and information programmes aimed at patients undergoing treatment and their families. They help minimise the perceived threat of losses suffered after a neurological injury and leverage resources available to address the new situation, be they from the individuals themselves or their communities, facilitating their process of recovery and adaptation..

However, this year and due to the pandemic and restrictions, as of 14 March, all the information sessions at the Meeting Point had to be suspended. The same happened with training sessions for patients, mutual support groups and experiences such as the Voice of the Patient.

Before 14 March, 14 sessions of the Meeting Point had been held with 163 people attending and 12 different topics of interest. 78.2% of those attending the training sessions for families and caregivers are women and 24.8% men. The largest group of caregivers are parents followed by partners. In order to continue offering the “Meeting Point” programme to families and patients, during the last quarter of the year we launched an initiative consisting of digitising these capsules for virtual sharing.

Ubuntu programme

The Social Work Area of ​​the Institut Guttmann runs the UBUNTU programme, an initiative that aims to detect and act in an urgent and positive way to resolve or mitigate cases of vulnerability that affect patients/families, and who are or may be suffering from marginalisation, abuse or social exclusion.

The program includes:

  • A protocol for detecting situations of precariousness, vulnerability and social exclusion.
  • A protocol for the identification of possible abuse in children, women (gender violence) and presumed situations of cognitive disability.
  • The psychosocial frailty protocol, developed by the Specialist Counselling and Support Team (EASE) in home and community interventions.
  • The active participation programme “La voz del Paciente” (The Voice of the Patient).
  • The “Treatment Grants” programme was created to prevent people, due to lack of resources, from being left without a necessary innovative treatment that is not included in the public portfolio of health services.

Profiles of people seen:

  • Families in a precarious situation.
  • Families with limited capacity to offer personal support to the patient.
  • People without family and without income.

During 2020, 25 people were assisted with a total of 35 services related to: purchasing clothes, laundry, orthoses to the Social Security, food bank, bathing and hygiene items, etc. A total of 9,547.78 € was earmarked for the programme during 2020.


Volunteering

Being a volunteer at the Institut Guttmann is much more than doing a specific action, it is more about occasionally helping or accompanying somebody when they are most vulnerable or in need. Being a volunteer means being committed to and working for the benefit of a group; it is about discovering solidarity and participation not as the result of an action, but as an option for living together in harmony. This is how we contribute to building a better, fairer and, above all, more humane model of society.

During 2020, volunteer activity only took place during the months of January and February, as the hospital decided to suspend all services related to accompanying patients in March and due to the state of alarm put in place because of the pandemic.

The main activities carried out by the volunteers are accompaniment, helping with different procedures, outings to the city, accompanying patients to medical tests, training, translation, support in leisure and recreational activities, etc.

During 2020, a total of 222 hours of volunteer services were carried out, including accompaniment, help with attending religious events, leisure and recreational activities, among others.

Participation and Social Inclusion Programme

During 2019, a new Hospital Participation and Social Inclusion Programme was launched with a team made up of different members of the Social Work Area, and a new position was created with a social integrator.

The purpose of the Participation and Social Inclusion Programme (PPIS) is to promote the comfort of our patients and their emotional environment by offering recreational, artistic, social and educational activities within the daily environment of the hospital and with the approach of attending to individuals and their families.

Due to the pandemic, on 14 March the hospital was forced to suspend all activities in the leisure programme. However, before that date and in addition to the regular scheduled activities (art, basketball, cinema, crochet, reading and yoga), other activities were held with the collaboration of third parties:

  • Art Exhibition with the artist and doctor Joan Dalmau (January).
  • Concert of habaneras by the Barrigones de Girona (January).
  • Carnival celebration with a performance by Verissimus and a chocolate workshop with the Taradell Chocolatier (February).
  • Also for Carnival, necklace workshop run by patients and their families (February).
  • Art exhibition by a group of immigrant “arpilleras” from Badalona (March).

During 2020, a total of 34 regular sessions were held with 166 participants and 8 sessions with external staff with a total of 144 attendees, of which 59% were women and 41% were men. The satisfaction index for the activities was 9.4 out of 10.