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1.
Artigo em Inglês | MEDLINE | ID: mdl-38684334

RESUMO

BACKGROUND: Adults with fetal alcohol spectrum disorder (FASD) can thrive with lifelong support in daily living activities. Previous research examining living support for adults with FASD has heavily relied on caregiver reports rather than lived experiences, which can undermine opportunities for self-determination. In this study, we examined the perspectives of adults with FASD to better understand: (1) the ways in which they are supported with daily life activities; and (2) their ideal future living arrangements and supports. METHODS: This article presents findings from the perspective of adults with FASD as part of a broader project involving both adults with FASD and the caregivers who support them. Interviews were conducted with four Canadian adults with FASD who live in housing with supportive services and seven adults with FASD who live at home with the support of caregivers. Framework analyses, a structured approach to analyzing qualitative data, were used to examine participants' perspectives. RESULTS: In addition to providing support for previous findings, participants provided novel information regarding: (1) their daily living supports; (2) positive and negative aspects of their arrangements; and (3) ideal living environments and supports. CONCLUSIONS: This study offers insight into participants' perspectives regarding their living support, which is critical to inform housing and aid in self-determination. Areas of support outlined by participants can be used to begin conversations regarding the support required in housing arrangements for adults with FASD.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38684339

RESUMO

BACKGROUND: Caregivers supporting adults with fetal alcohol spectrum disorder (FASD) report concerns regarding living arrangements and services for their adult children with FASD. Best practices for living support for adults with FASD are under-researched, and few studies have explored the experiences of caregivers whose children are adults. This study examined the perspectives of caregivers who support adults (18+) with FASD regarding: (1) current ways adults with FASD are supported with daily life activities; and (2) ideal future living arrangements and supports. METHODS: This article presents findings from the perspective of caregivers who support adults with FASD, as part of a broader project involving both adults with FASD and caregivers. Semi-structured interviews were conducted with 11 Canadian caregivers who live at home with an adult with FASD (aged 18+). Responses were examined using framework analysis, a structured approach to analyzing qualitative data. RESULTS: Caregivers described their experiences and perspectives regarding: (1) current ways adults with FASD are supported in their daily activities; (2) strategies for successful support; (3) ideal future living arrangements and supports; and (4) concerns for the future. Notably, almost every participant raised pressing concerns regarding the future living arrangements for the person they support once they are no longer able to provide care. CONCLUSIONS: This study explores caregivers' perspectives regarding living support needed by adults with FASD, which can inform support programs and housing services. Findings demonstrate an urgent need for policy change directed toward developing available, affordable, and appropriate housing for adults with FASD.

3.
J Can Assoc Gastroenterol ; 6(5): 172-178, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37811528

RESUMO

Background: Inflammatory bowel disease is characterized by chronic inflammation of the gastrointestinal tract. Research on inflammatory bowel disease has shown a connection to childhood traumatic events. However, few studies have focused on specific types of traumatic experiences and the impact of confiding in others on disease-related outcomes. This comparative, cross-sectional study expected that: (1) patients would report higher prevalence rates of childhood traumas than healthy controls; (2) healthy controls would report fewer and less severe traumatic experiences than patients and less confiding in others compared to patients; (3) childhood trauma severity would be indirectly related to depressive symptoms through resilience and confiding in others would moderate this relationship. Methods: Participants completed an online survey; an inflammatory bowel disease patient group (N = 195, Mage = 40.48, 76.4% female) was compared to a similarly recruited sample of healthy controls (N = 190, Mage = 31.16, 59.5% female). Results: Patients reported a higher prevalence of experiencing sexual traumas (P = .031), major upheavals (i.e., disruptions) (P = .048), and violence (P = .050) than controls. Patients had significantly higher total trauma severity odds ratios (OR 0.89, 95% CI[0.81,0.97]) and significantly lower total confiding in other odds ratios than controls (OR 1.09, 95% CI[1.02,1.16]). Childhood trauma severity was indirectly related to depressive symptoms through resilience, b = .05, SE = 0.09, 95% CI[0.01,0.09]; however, confiding did not moderate this relationship. Conclusions: Patients reported more sexual, disruptive, and violent traumas. Although confiding did not act as a moderator, trauma was related to depressive symptoms through resilience.

4.
Qual Life Res ; 32(12): 3309-3326, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37347396

RESUMO

BACKGROUND: Ulcerative colitis and Crohn's disease are subtypes of inflammatory bowel disease: a chronic condition of unclear etiology characterized by inflammation of the small and large intestine. Inflammatory bowel disease is managed with diet, medications, and surgeries, with the most common surgery, recommended to ulcerative colitis patients being j-pouch surgery. PURPOSE: To assess the current literature concerning psychosocial factors associated with j-pouch surgery for patients with inflammatory bowel disease. METHODS: A systematic scoping review of the empirical and grey literature was conducted for original research on j-pouch surgery and psychosocial variables. Eight databases were searched: Medline, PsychInfo, CINAHL, EBM Reviews, ProQuest Dissertations and Theses Global, ResearchGate, Prospero, and PrePubMed. RESULTS: Thirty-nine articles were identified. Many studies (n = 18) adopted a case-series design, and none examined psychosocial interventions. The most popular psychosocial variables assessed were quality of life (n = 34) and those associated with sexual health and functioning (n = 9). CONCLUSIONS: Despite being an established surgical procedure, little research has examined the psychosocial implications of j-pouch surgery. As such, clinicians lack a robust understanding of how this procedure affects patients' psychiatric and social status and adaptive abilities. There is a need for high-quality research utilizing validated measures and rigorous design methodologies with control populations.


Assuntos
Colite Ulcerativa , Bolsas Cólicas , Doença de Crohn , Doenças Inflamatórias Intestinais , Humanos , Colite Ulcerativa/cirurgia , Qualidade de Vida/psicologia , Doenças Inflamatórias Intestinais/cirurgia , Doenças Inflamatórias Intestinais/complicações
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