Chapitre 6. Soutien social, santé et maladie

Fischer, Gustave-Nicolas; Tarquinio, Cyril; Dodeler, Virginie

doi:10.3917/dunod.fisch.2020.02.0173

Cited by 2 publications

(1 citation statement)

References 45 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…However, although these diseases can cause social difficulties, these seemed to be compensated by the support patients receive from family, friends, or other patients involved in the same associations or organizations [31, 33, 37-39, 44, 89, 110, 111, 117, 119, 120, 133]. Indeed, social or family support was shown to be an important factor buffering the negative effects of stress in a wide range of clinical populations, for example, in the case of chronic skin conditions [137,138] or in more critical health issues such as cancer [139][140][141][142]. However, some conditions within a specific context (in this case, albinism in Africa) can induce a very ambivalent family functioning mixing fear, protection, guilt, and violence [41].…”

Section: Discussionmentioning

confidence: 99%

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Fournier¹,

Calcagni

Morice‐Picard

et al. 2023

Orphanet J Rare Dis

View full text Add to dashboard Cite

Background Since the beginning of human genetic research, there are very few publications sharing insights of the negative impact of rare genetic skin diseases (RGSD) on patients’ experiences. This systematic review assessed the psychosocial implications of these conditions in terms of daily life experiences, emotional state, self-perception, and Quality of Life (QoL). Methodology A systematic review was carried out on albinism, neurofibromatosis type 1 (NF1), birthmarks and inherited ichthyosis. The PubMed, Scopus, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection, and SOCindex databases were queried. Inclusion criteria were adult patients with one of these RGSDs. Simple descriptive statistics and qualitative content analysis were conducted to summarize the main results reported by the authors. Results Of the 9987 articles retrieved, 48 articles were included: albinism (16), NF1 (16), inherited ichthyosis (10), birthmarks (6). The majority of the studies on albinism were conducted in Africa. Twenty-seven studies quantitatively assessed diverse psychological parameters: 13 showed a significant impact of the disease on QoL, five on emotional state, two on self-representation and two others on psychiatric comorbidities. Disease severity and visibility were good predictors of QoL (except for albinism). Body image and appearance concerns were also associated with QoL and emotional state. The 19 qualitative studies highlighted recurring themes across each of these diseases: discrimination and stigma during childhood and adolescence, discomfort in social interactions, guilt of transmission, the importance of social support from family and friends, altered daily life functioning, altered romantic and sex life, limited academic and professional aspirations, lack of interest and support from the medical field, and the unpredictability of the evolution of the disease. The only two mixed-method studies in this review were unable to contribute to any inferential analyses but could corroborate some of the qualitative findings. Conclusion These results showed that RGSDs have a significant impact on different aspects of patients’ lives. This review has demonstrated that there is a real need for support systems for patients with these diseases. Such systems should be developed to provide them with necessary information and to guide them through an appropriate care pathway.

show abstract

Section: Discussionmentioning

confidence: 99%

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Fournier¹,

Calcagni

Morice‐Picard

et al. 2023

Orphanet J Rare Dis

View full text Add to dashboard Cite

show abstract

Weight gain and social support networks in Canadian federal correctional facilities

Johnson,

Dupuis,

Robichaudb

et al. 2024

IJOPH

View full text Add to dashboard Cite

Purpose This study aims to examine whether inmate’s social support network is related to changes in anthropometric data among individuals in Canadian correctional facilities. Design/methodology/approach Methods: A total of 754 participants in federal correctional facilities who had been incarcerated for at least six months responded to the questionnaire by interview regarding their social support network. Chi-square tests and non-parametric tests for median comparison were used to measure changes in anthropometric data [weight and body mass index (BMI)] between the date of admission into custody and the date of the interview. Subsequently, a multivariate regression analysis for BMI change was conducted to adjust for covariates such as sex, age and ethnicity. Findings Results: Participants who received more than two visits per month had significantly lower weight gain (2.6 kg) than those who received less than one visit per month (7.1 kg, p = 0.02). Similar results were observed for the average change in BMI (p = 0.01). The influence of an external social support network on BMI change remained significant after adjusting for covariates. Conclusions: An individual's external social support network (outside the prison environment) may protect against weight gain in correctional facilities. Given how social support will vary based on the prison context by country and jurisdiction, individual and organizational strategies should be considered to maintain a healthy social support network and increase the number of visits (at every stage of incarceration) to counteract this weight gain and its adverse health consequences. Originality/value The social support network outside the prison environment may protect against weight gain in correctional facilities. Strategies should be considered to maintain a healthy social support network and increase the number of visits to counteract this weight gain and its adverse health consequences.

show abstract

Chapitre 6. Soutien social, santé et maladie

Cited by 2 publications

References 45 publications

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

Weight gain and social support networks in Canadian federal correctional facilities

Contact Info

Product

Resources

About