The Quality of Life is a polysemic and ubiquitous concept which is used in different ways and has different definitions based on the analysis contest. Overtime, mass media provided different meanings to this concept, up to describing it as an universal ideal of high quality of the most commercial and material aspect of life (e.g. objects, success in the work field, money, vacation and free time, social contest, physical performance), losing by time its true and original meaning (Bertelli M. e Brown 2006).. Today, we can find only in the medical and scientifical filed a more coherent and appropriate acceptation of the concept of the Quality of Life , which is now described as an “uniquely personal perception, denotating the way that individual patients feel about their health status and/or nonmedical aspects of their lives”. (Gill TM, Feinstein AR , 1994) Quality of Life (QoL) is also defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns" (WHOQOL, 1995), and since some years it has become a key measure of outcome for researchers, mostly on the mental health and disability filed, due to the fact that a lot of these disorders have a big effect in the individual’s and their family life. It is important, indeed, to remember that psychiatric and neurodevelopmental disorder are one of the leading causes of morbidity and mortality in the world population, and mostly, they are one of the main causes of disability in the whole world (WHO). However, several studies still show a clear lacking conceptual basis for this concept and the few attempts to develop models or operational definitions of quality of life have been inadequate (Hunt, S. M. ,1997), which has lead to the creations of doubts, confusion and misunderstandings among practitioners, researchers and patients. Nevertheless, it appears in general that the best approach to the measurement of the QoL is a comprehensive one, which integrates the both subjective and objective aspects (Bertelli M, Francescutti C, Brown, 2020).. In this contest, the approach to the Quality of Life acquires the purpose of exploring the rich tapestry of the personal quality of life, and through different methods, many researchers worldwide started gathering data to help understand and discover this particular and wide notion. Since the 90s, the Quality of Life has become an important research area, but only starting from the 2000s it started to work also on the mental health field, increasingly broadening its horizons. Today, indeed, we can count a lot studies and researchers done on this area, and a lot of tool for assessing the Quality of Life has been created and used during the years. One of the most popular and often-used tools is the FQOLS-2006 scale (SIQF-2006, ID/DD version), which analyses the different areas that make up the quality of life concept through the administration of a questionnaire to the family members of a patient with a disability. And it is from this very scale that our project took its origins. The aim of our study, indeed, was to develop and administer a digital questionnaire (based on the FQOLS-2006 scale ) to the family members of a patient with a psychiatric or neurodevelopmental disorder in order to obtain and collect compliance data and information from all those families who are burdened by the weigh of a family member diagnosis, and to help further researchers to understand more and more about the family quality of life and its use.
La qualità della vita è un concetto polisemico che prende diverse accezioni in base al contesto in cui viene analizzato. Nell’ambito dei mass media, esso viene definito come un ideale universale di ala qualità degli aspetti più commerciali e materiali della vita (Bertelli M. e Brown 2006), viceversa nell’ambito medico viene descritta come un’unica percezione individuale, rispetto alla propria posizione nella vita, al contesto culturale e al sistema di valori in cui si vive, in relazione ai propri obiettivi, aspettative, standard e preoccupazioni (Gill TM, Feinstein AR , 1994; WHOQOL, 1995). È da un po’ di anni ormai che la QdV è diventata una misura fondamentale di esito per i ricercatori, soprattutto nell’ambito sanitario e delle malattie mentali e disabilità: bisogna, infatti, considerare che disturbi psichiatrici, del neurosviluppo e disabilità di vario tipo hanno da sempre avuto un grande peso e un forte impatto non solo nella vita dei soggetti affetti da tali patologie, ma anche in quella dei loro familiari e persone a loro care. A livello globale, infatti, le malattie psichiatriche e i disturbi del neurosviluppo sono tra le principali cause di morbilità e mortalità nella popolazione, e soprattutto, sono una delle prime cause di disabilità nel mondo (WHO), e proprio per questo nel corso degli anni è nata la necessità di riuscire a fornire un sempre maggiore supporto e comprensione a tutti i soggetti che vengono coinvolti dal decorso di queste patologie, e in questo i concetti di qualità di vita e qualità di vita della famiglia (FQoL – Family Quality of Life) si sono rivelati di fondamentale importanza. Al giorno d’oggi, però, diverse ricerche dimostrano, una considerevole mancanza di studi rispetto a questi concetti e le poche contribuzioni presenti nella letteratura mostrano un significativo limite concettuale e metodologico (Hunt, S. M. ,1997) rispetto al significato stesso del termine. Ancora oggi, infatti, esistono diversi dubbi sulla sua applicazione e sul suo significato generale, e per questo sono ancora in atto molti studi e ricerche col fine ultimo di sviluppare un approccio sempre migliore a queste teorie. Attualmente, infatti, sembrerebbe che l’approccio migliore alla misurazione della QdV fosse un approccio di tipo comprensivo, che integri aspetti sia soggettivi che oggettivi, sia di auto che di etero valutazione (Bertelli M, Francescutti C, Brown, 2020), e che permetta, quindi, di osservare in maniera sempre più ampia e comprensiva questo concetto. In questo contesto, quindi, l’approccio alla QdV acquisisce lo scopo di esplorare il ricco intreccio della qualità di vita personale, e grazie ai molteplici studi che sono stati compiuti nel corso degli al giorno d’oggi si possono contare anche numerosi strumenti per la sua valutazione e assestment. Uno degli strumenti più conosciuti e utilizzati è la scala SIQF-2006 (FQOLS-2006, ID/DD version), la quale va ad analizzare i diversi ambiti di cui è composto il concetto di Qualità di Vita attraverso la somministrazione di un questionario che deve essere compilato dai familiari dei soggetti affetti da disabilità. Ed è proprio da questa scala che nasce l’idea di questo progetto di tesi: somministrare un questionario informatizzato, strutturato a partire dalla SIQF-2006, ai familiari di soggetti con diagnosi psichiatrica e/o disturbo del neurosviluppo al fine di ottenere e raccogliere dei dati rispetto alla QdV percepita da tutte quelle famiglie sottoposte al peso della diagnosi di un loro familiare, nel tentativo di aiutare anche ricerche successive a capire e utilizzare sempre meglio il concetto di FQOL e QdV nella pratica clinica quotidiana.
Digitalizzazione della scala SiQF: studio osservazionale descrittivo sulla Qualità di Vita percepita dalle famiglie
ZANON, IRENE
2022/2023
Abstract
The Quality of Life is a polysemic and ubiquitous concept which is used in different ways and has different definitions based on the analysis contest. Overtime, mass media provided different meanings to this concept, up to describing it as an universal ideal of high quality of the most commercial and material aspect of life (e.g. objects, success in the work field, money, vacation and free time, social contest, physical performance), losing by time its true and original meaning (Bertelli M. e Brown 2006).. Today, we can find only in the medical and scientifical filed a more coherent and appropriate acceptation of the concept of the Quality of Life , which is now described as an “uniquely personal perception, denotating the way that individual patients feel about their health status and/or nonmedical aspects of their lives”. (Gill TM, Feinstein AR , 1994) Quality of Life (QoL) is also defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns" (WHOQOL, 1995), and since some years it has become a key measure of outcome for researchers, mostly on the mental health and disability filed, due to the fact that a lot of these disorders have a big effect in the individual’s and their family life. It is important, indeed, to remember that psychiatric and neurodevelopmental disorder are one of the leading causes of morbidity and mortality in the world population, and mostly, they are one of the main causes of disability in the whole world (WHO). However, several studies still show a clear lacking conceptual basis for this concept and the few attempts to develop models or operational definitions of quality of life have been inadequate (Hunt, S. M. ,1997), which has lead to the creations of doubts, confusion and misunderstandings among practitioners, researchers and patients. Nevertheless, it appears in general that the best approach to the measurement of the QoL is a comprehensive one, which integrates the both subjective and objective aspects (Bertelli M, Francescutti C, Brown, 2020).. In this contest, the approach to the Quality of Life acquires the purpose of exploring the rich tapestry of the personal quality of life, and through different methods, many researchers worldwide started gathering data to help understand and discover this particular and wide notion. Since the 90s, the Quality of Life has become an important research area, but only starting from the 2000s it started to work also on the mental health field, increasingly broadening its horizons. Today, indeed, we can count a lot studies and researchers done on this area, and a lot of tool for assessing the Quality of Life has been created and used during the years. One of the most popular and often-used tools is the FQOLS-2006 scale (SIQF-2006, ID/DD version), which analyses the different areas that make up the quality of life concept through the administration of a questionnaire to the family members of a patient with a disability. And it is from this very scale that our project took its origins. The aim of our study, indeed, was to develop and administer a digital questionnaire (based on the FQOLS-2006 scale ) to the family members of a patient with a psychiatric or neurodevelopmental disorder in order to obtain and collect compliance data and information from all those families who are burdened by the weigh of a family member diagnosis, and to help further researchers to understand more and more about the family quality of life and its use.File | Dimensione | Formato | |
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https://hdl.handle.net/20.500.12608/58053