Background Talking about home means talking about ourselves. Our home represents the “movie set” where the film of our lives is shot, and we can choose whether to be simple actors or the directors of it. The house expresses our personality, it identifies us in a unique way, like a fingerprint. Talking about our home means understanding how the way we relate to it can create well-being or discomfort.
Objectives The goal of this project is to promote the empowerment of people with disabilities and chronic diseases. We aim to do that starting from a greater awareness of their living needs and the quality of life and self-esteem enhancements that derives from a tailor-made home.
Methods 308 people participated in the survey and were distributed anonymous questionnaires regarding their experience at home.
Gender: 72 males and 236 females
Age: 24 (18-25); 44 (26-34); 32 (35-42); 88 (43-50); 44 (51-58); 44 (59-66); 32 (67-75)
Percentage of disability: 36 do not know their own percentage; <25%: 52; >25<50: 44; >50<75: 60; >75<100: 112
Pathologies found: Psoriatic arthritis: 52; Rheumatoid arthritis: 116; Connectivitis: 44; Fibromyalgia: 16; Ankylosing spondylitis: 16; Muscle diseases: 64
We found the highest number of severely disabled people (>75<100) among patients with muscle diseases (93,7%), followed by patients with connectivitis (45%) and Rheumatoid arthritis (44%).
Results 92% of the participants agree “very/very much” with the phrase “An accessible home ... (question 12)”, 6% “fairly” agree and only 1.2% “do not agree”. 43% of people like their home “a lot/very much” (question 4), another 43% “quite” and only 13% (40 people) “don’t like it at all/like it a little”. Curiously, 90% of those who do not like it perceive their home as “not very/not at all welcoming”; 70% feel “little /not at all autonomous” and 100% report that the house “reflects them only a little/not at all”; therefore 80% think that the house should “change fairly/a lot”, (but only 10% have done renovations).
82% of the people who carried out renovations (question 9), were aware of tax breaks, while only 36% of those who did not carry out renovations knew about the tax breaks. Males who have done renovations represent 25% of this population and all of them had a great disability (100%); a particular degree of disability was not prevalent among women. 65% of those who have done renovations report that the improvement in their quality of life as a result of the work is “fairly” (question 11), and for the remaining 45% the quality of life has improved “a lot”.
The most necessary and reported renovation works are not “frivolous requests” or “whims”, but practical needs for the daily life: removal of architectural barriers, stair lifts, mobile wall units and adaptation of toilets.
All this is essential and necessary for people with reduced mobility and /or disabilities.
The most interesting part of the survey concerns the “more intimate and personal” question (question 16): “What does your home represent for you”. The concept that is most expressed is “Refuge” or others like that such as “Safe Harbor”, “Nest”, “Freedom” ... concepts that go far beyond the “architectural” and “material” sense of the house.
Conclusion The home represents, for the general population, but above all people with disabilities, a place to take refuge from the dangers/anxieties/ worries of everyday life. Therefore, every effort to inform patients about the possible facilities to make their home more comfortable is fundamental, as well as those to raise the awareness of governments in order to increase the facilities for patients who will need them.
References Martin Severino 1, Sonia Middei2, Raffaele Convertino2, Antonella Celano2
ASL ROMA 6 (Operative Unit of Internal Medicine and Rheumatology), Rome
Apmarr APS (Italian Association of People with Rheumatological and Rare Diseases), Lecce, Italy
Acknowledgements The authors would like to thank all the patients who made this research possible
Disclosure of Interests None declared
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