Exploring the complex cognitive, affective and behavioural processes of individuals with intellectual disabilities in financially abusive situations.

BACKGROUND: Understanding the cognitive processes of individuals with intellectual disabilities in financially abusive situations is critical to develop effective prevention strategies. AIMS: This study investigated how persons with intellectual disabilities define and analyse financially abusive situations, and how they would feel and act in situations that they consider abusive. MATERIALS AND METHODS: Twelve participants with intellectual disabilities participated in a semi-structured interview where they were asked to reflect on three vignettes illustrating financial abuse. We analysed the interviews using thematic analysis. FINDINGS: The findings revealed that individuals with intellectual disabilities considered the type of relationship between the victims and the perpetrators, the behavioural patterns of the perpetrators, and their own experiences when interpreting the situation. Furthermore, they discussed their emotional and behavioural reactions to the vignettes. CONCLUSION: This study has important implications in supporting the autonomy and decision-making rights of persons with intellectual disabilities regarding their finances and developing effective preventions against financial abuse among this population.

Investigating inequalities in cancer staging and survival for adults with intellectual or developmental disabilities and cancer: A population-based study in Manitoba, Canada.

BACKGROUND: Cancer is a leading cause of death among adults living with intellectual or developmental disabilities (IDD). However, few epidemiological studies exist worldwide quantifying inequalities in cancer stage at diagnosis and survival for people with IDD relative to those without IDD. METHODS: A population-based, retrospective cohort study was conducted using provincial health and social administrative data in Manitoba, Canada. Adults (≥18 years) with a cancer diagnosis between 2004 and 2017 were included. Lifetime IDD was identified before the cancer diagnosis using an established algorithm. Modified Poisson regression with robust error variance was used to estimate the association between IDD status and metastatic cancer at diagnosis. Multivariable Cox proportional hazards analyses were used to the effect of IDD on overall survival following the cancer diagnosis. RESULTS: The staging and prognosis cohorts included 62,886 (n = 473 with IDD) and 74,143 (n = 592 with IDD) cancer patients, respectively. People living with IDD were significantly more likely to be diagnosed with metastatic cancer and die following their cancer diagnosis compared to those without IDD (RR=1.20; 95 % CI 1.05-1.38; HR= 1.53; 95 % CI 1.38-1.71). Significant heterogeneity by sex was identified for cancer survival (p = 0.005). DISCUSSION: People with IDD had more advanced cancer stage at diagnosis and worse survival relative to those without IDD. Identifying and developing strategies to address the factors responsible that contribute to these disparities is required for improving patient-centred cancer care for adults with IDD.

What adults with intellectual and developmental disabilities say they need to access annual health examinations: System navigation support and person-centred care.

OBJECTIVE: To gain an understanding of the support needs of adults with intellectual and developmental disabilities (IDD) when scheduling, traveling to, and attending annual health examinations (AHEs). DESIGN: Qualitative study that is part of a large population-level intervention aiming to increase uptake of AHEs among adults with IDD. SETTING: Ontario. PARTICIPANTS: A total of 8 men and 5 women with IDD took part in semistructured interviews about their personal experiences related to AHEs. METHODS: Thematic analysis was used to examine experiences relating to scheduling, traveling to, and attending AHEs. MAIN FINDINGS: Support emerged as the overarching theme. Support included assistance navigating the health care system (assistance scheduling AHEs, reminders to book AHEs, financial assistance, transportation) and person-centred care (respect of privacy and autonomy, communication style, kindness, compassion, rapport with physician, health advocacy, and collaboration). Barriers to this support were also identified (lack of rapport, perception of unfriendliness, perception that the physician is too busy to tend to needs, and perception that the physician did not want to perform AHEs). CONCLUSION: For adults with IDD, system navigation support and person-centred care were central to accessing AHEs. In collaboration with informal caregivers, physicians have an important role in reducing barriers to patients accessing this valuable preventive care opportunity. Physicians can fulfil some of the needs disclosed by adults with IDD related to attending AHEs by offering support for scheduling appointments, by linking patients with IDD to resources that facilitate appointment attendance, and by increasing consultation duration.

The Association Between Continuity of Primary Care and Preventive Cancer Screening in Women With Intellectual Disability.

Women with intellectual disability have low screening rates for breast and cervical cancer. This population-based cohort study examined the association between the level of primary care continuity and breast and cervical cancer screening rates in women with intellectual disability. Data were obtained from the Institute for Clinical Evaluative Sciences and the Ontario Ministry of Community and Social Services. Neither high (adjusted OR [aOR] = 1.06; 95% CI: 0.88-1.29) nor moderate (aOR = 1.11; 95% CI: 0.91-1.36) continuity of care were associated with mammography screening. Women were less likely to receive a Pap test with high (aOR = 0.70; 95% CI: 0.64-0.77) and moderate (aOR = 0.81, 95% CI 0.74-0.89) versus low continuity of care. Improving continuity of care may not be sufficient for increasing preventive screening rates.

Social support received by women with intellectual and developmental disabilities during pregnancy and childbirth: An exploratory qualitative study.

OBJECTIVE: this study aims to contribute to the development of a conceptual framework that will inform maternity care improvements for expectant mothers with intellectual and developmental disabilities (IDD) by exploring the structure, functions, and perceived quality of social support received by women with IDD during pregnancy and childbirth. DESIGN/SETTING: using a grounded theory approach, we conducted an exploratory study set in Ontario, Canada in 2015. PARTICIPANTS: the sample included four adult women with IDD who had given birth in the last five years. MEASUREMENTS: data were collected using semi-structured interviews. FINDINGS: the structure of social support received by women with IDD consisted of both formal and informal sources, but few or no friendships. Women with IDD reported high levels of informational and instrumental support and low levels of emotional support and social companionship. However, a high level of available support was not always perceived as beneficial. Emergent core categories suggest that social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: our study confirms and identifies important gaps in the social support received by expectant mothers with IDD. Women with IDD currently lack accessible informational support, emotional support, and social companionship during pregnancy and childbirth. Additional findings regarding the structure and functions of social support are presented, and a preliminary conceptual framework of effective social support during pregnancy and childbirth, as perceived by women with IDD is also proposed. Findings suggest that increasing support accessibility should be a social and clinical priority; however, maternity care providers should be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.

Pregnancy in Women With Intellectual and Developmental Disabilities.

OBJECTIVE: Our objectives were to describe the general fertility rate (GFR) and age-specific fertility rates (ASFRs) of women with intellectual and developmental disabilities (IDD) and the social and health characteristics of those with a singleton live birth, and to compare these to women without IDD. METHODS: In this population-based retrospective cohort study using linked Ontario health and social services administrative data, we identified 18- to 49-year-old women with IDD (N = 21 181) and without IDD (N = 990 776). The GFR and ASFRs (2009) were calculated for both groups and compared using rate ratios (RR) and 95% confidence intervals (CI). Among women with a singleton live birth (N = 423 with, N = 42 439 without IDD), social and health characteristics were compared using Pearson's Chi square tests. RESULTS: The GFR in women with IDD (20.3 per 1000) was lower than that in women without IDD (43.4 per 1000) (RR 0.47; 95% CI 0.43 to 0.51). ASFRs in 18- to 24-year-olds were similar in both groups. Among women with a singleton live birth, those with IDD were younger and had higher rates of poverty, epilepsy, obesity, and mental health issues. They also had high rates of medication use during pregnancy. CONCLUSION: In the largest study of fertility in women with IDD to date, we found that ASFRs are similar in young women with and without IDD. Women with IDD with a singleton live birth experience significant social and health disparities during pregnancy. These findings suggest the need to develop services to support the reproductive health of this vulnerable group.

Contextual factors associated with uptake of breast and cervical cancer screening: A systematic review of the literature.

Existing research on barriers to breast and cervical cancer screening uptake has focused primarily on socio-demographic characteristics of individuals. However, contextual factors, such as service organization, as well as healthcare providers' training and practices, are more feasibly altered to increase health service use. The objective of the authors in this study was to perform a critical systematic review of the literature to identify contextual factors at the provider- and system-level that were associated with breast and cervical cancer screening uptake. Studies published from 2000 to 2013 were identified through PubMed and PsycInfo. Methodologic quality was assessed, and studies were examined for themes related to provider- and system-level factors associated with screening uptake. Thirteen studies met the inclusion criteria. Findings revealed a positive association between patients' receipt of provider recommendation and uptake of breast and cervical cancer screening. Uptake was also higher among patients of female providers. Facilities with flexible appointment times and reminders had higher mammography and Pap test uptake. Similarly, greater organizational commitment to quality and performance had higher breast and cervical cancer screening rates. Knowledge provided in this review could be used in future research to inform the development of public health policy and clinical programs to improve screening uptake.

Primary care of adults with developmental disabilities in Ontario.

The health status and healthcare of adults with developmental disabilities have not been well-studied in Ontario, due to the absence of population-based data. To address this deficit, the Health Care Access Research and Developmental Disabilities (H-CARDD) program - a provincial partnership of scientists, policymakers and clinicians - has used existing provincial-level administrative data to provide descriptive information on the health of adults with developmental disabilities and the quality of their primary care relative to other adults. H-CARDD's findings have revealed many gaps in the care of adults with developmental disabilities. While primary care providers are critical to achieving needed changes, the broader healthcare context and infrastructure also need to be considered.

Unmet needs of families of school-aged children with an autism spectrum disorder.

BACKGROUND: To aid decision making regarding the allocation of limited resources, information is needed on the perceived unmet needs of parents of school-aged children with an autism spectrum disorder. MATERIALS AND METHODS: A cross-sectional survey was conducted of 101 Canadian families of school-aged children with an autism spectrum disorder. RESULTS: Commonly reported unmet needs were for social activities for the child (78.2%), information about services (77.2%) and continuous service provision (74.3%). CONCLUSIONS: This study provides insight into needs which have not been met by the service system. Information about the unmet needs of children with an autism spectrum disorder and their families may help policy makers and service providers to develop resources and services that are responsive to their client group.

Beyond an autism diagnosis: children's functional independence and parents' unmet needs.

High demand has resulted in gaps in autism service provision. Our objective was to explore the association between children's functioning and parents' perceived unmet needs. We conducted a cross-sectional study of 97 families of school-aged children with an autism spectrum disorder. Log binomial regression was used to examine the relative risk for unmet need. Families of children with high functional independence had lower unmet need than families of children with moderate functional independence (RR = 0.81, 95% CI = 0.67-0.99). Those who experienced greater impact of the child's disability had greater unmet need (RR = 1.22, 95% CI = 1.03-1.45). The child's functioning and its impact on the family provide insight into unmet need which may inform service planning.