Family adaptation in families of individuals with Down syndrome from 12 countries.

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

Acute service and disability service providers experiences of joint working to improve health care experiences of people with an intellectual disability compared to non-joint working: A mixed-method systematic review.

Persons with intellectual disabilities require frequent access to acute services. Many also access disability services within the community. Reports and enquiries have highlighted the sub-optimal healthcare provided to this group when accessing healthcare in acute services. Joint working between acute and disability services has been identified as a measure to improve healthcare for this group. A mixed method systematic review was undertaken to explore current evidence of joint working between both service providers. Twelve publications were included, and the data were analysed using thematic analysis. Confusion around responsibility and limited training in acute services prevented joint working from occurring. Information-sharing is pivotal in promoting joint-working, but measures which facilitated it were not always used. Albeit acute services demonstrated a strong commitment to deliver quality care to those with intellectual disabilities. Much of the available research captures the experiences of staff in acute services. There is a paucity of research available exploring experiences of disability service providers.

Hardiness as a Resilience Factor for Adaptation in Families of Children With 22q11.2 Deletion Syndrome: A Mixed Methods Study of Parents' Perspectives.

22q11.2 deletion syndrome is a rare multisystem genetic disorder with over 200 associated characteristics, occurring in various combinations and severity. Extensive biomedical research has been undertaken on 22q11.2 deletion syndrome, however, there is a dearth of research on families' experiences of managing a family member with this condition. The complex and at times serious phenotypical presentation of the syndrome can make the management of the condition difficult for families. The aim of this mixed method explanatory sequential study was to investigate family hardiness as a resilience factor for adaptation in families of children with 22q11.2 deletion syndrome from parents' perspectives. We found that adaptation scores increased by 0.57 points (95% CI: 0.19-0.94) for every one-point increase in family hardiness score. Qualitative results indicated that acceptance of the child's diagnosis and support positively influenced hardiness whereas fears about the future and their experiences of loss negatively influenced hardiness.

Shared decision-making with adults transitioning to long-term care: A scoping review.

BACKGROUND: Transitions to long-term care are challenging for individuals and often associated with a loss of autonomy. Positive experiences are noted, especially when decisions involve the individual in a person-centred way which are respectful of the person's human rights. One approach which facilitates self-determination during a transitional period is shared decision-making, but there is a lack of clarity on the nature and extent of research evidence in this area. OBJECTIVE: The purpose of this scoping review is to identify and document research related to shared decision-making and transitioning to long-term care. METHODS: A comprehensive search in CINAHL, Medline and Psych-info identified papers which included evidence of shared decision-making during transitions to a long-term care setting. The review following the JBI and PAGER framework for scoping reviews. Data were extracted, charted and analysed according to patterns, advances, gaps, research recommendations and evidence for practice. RESULTS: Eighteen papers met the inclusion criteria. A body of knowledge was identified encompassing the pattern advancements in shared decision-making during transitions to long-term care, representing developments in both the evidence base and methodological approaches. Further patterns offer evidence of the facilitators and barriers experienced by the person, their families and the professional's involved. CONCLUSIONS: The evidence identified the complexity of such decision-making with efforts to engage in shared decision-making often constrained by the availability of resources, the skills of professionals and time. The findings recognise the need for partnership and person-centred approaches to optimise transitions. The review demonstrates evidence of approaches that can inform future practice and research to support all adult populations who may be faced with a transitional decision to actively participate in decision-making.

Exploring the Use of an Electronic Competency Assessment Document Using iPad Minis to Assess Clinical Practice Competency in a Preregistration Nursing Program: A Cross-sectional Feasibility Study.

The aim of this study was to explore the feasibility of using iPad minis as a method of completing competency assessment in clinical practice. Digital technology helps to revolutionize all aspects of our lives. The use of digital technologies in clinical practice can facilitate a move toward a more flexible learning environment and enable students to adapt in a rapidly changing, interconnected world. The introduction of electronic clinical booklets in practice placements could facilitate the sharing of clinical information through connected healthcare systems, thus improving the student experience. A cross-sectional design was used in this study. A sample of BSc nursing students (n = 53) and clinically based healthcare professionals (n = 27) (preceptors and clinical placement coordinators) participated in this study. Data were collected using a modified version of Garrett and colleagues' instrument, the System Usability Scale, a demographics questionnaire, and three open-ended questions. There was a significant difference between the students and preceptors/clinical placement coordinators across all items with higher proportions of students (ranging from 66% to 75.5%), indicating that they agreed or strongly agreed with the reliability, ease of use, and effectiveness of the device in assessing their clinical competency (ranging from 11.1% to 40.7%). In addition, the iPad minis were found to be smaller, lighter, and easier to carry than paper-based booklets and encouraged students to access timely online learning resources during placement to help augment their learning. The use of iPad mini to complete the electronic competency assessment document as a replacement for a paper-based system to assess clinical practice is feasible. The introduction of electronic assessment documents should incorporate a robust training plan and standard operating procedures.

Determining the need for a breast cancer awareness educational intervention for women with mild/moderate levels of intellectual disability: A qualitative descriptive study.

OBJECTIVE: Following a review of the existing body of literature, this study aimed to explore the need for a breast cancer awareness intervention specifically targeted at women with mild/moderate levels of intellectual disability (ID) and provide perspectives on the preferred processes and content underpinning an intervention. METHODS: A qualitative, descriptive design using semi-structured, individual (n = 5) and focus group (n = 5) interviews were used to engage with a non-probability, purposive sample of key stakeholders (n = 25) including women with mild/moderate levels of ID, caregivers and healthcare professionals. Data were analysed using qualitative content analysis. RESULTS: Findings highlighted that an educational intervention should focus on breast awareness as opposed to breast cancer awareness. Additionally, findings identified that a combined breast awareness and healthy living intervention could be effective. However, the intervention needs to have a multimodal, hands-on, person-centred approach to learning which is underpinned by theory. Furthermore, integrating the caregivers and healthcare professionals into the intervention is recommended. CONCLUSION: Findings from this study provide a foundation for developing and implementing a theoretically underpinned, multimodal, breast awareness and healthy living educational intervention for women with mild/moderate levels of ID.

Defining breast cancer awareness and identifying barriers to breast cancer awareness for women with an intellectual disability: A review of the literature.

INTRODUCTION: Incidence rates for developing breast cancer are similar for women regardless of intellectual ability. However, women with an intellectual disability present with advanced breast cancers, which often have a poor prognosis. METHOD: A structured narrative review of the literature was performed to explore the concepts of breast awareness and breast cancer awareness and subsequently, identify barriers to breast cancer awareness encountered by women with an intellectual disability. RESULTS: A total of 22 studies involving people with varying levels of intellectual disability informed this review. The barriers to breast cancer awareness encountered by women with an intellectual disability include: lack of their understanding, the role of the carer and literacy issues. CONCLUSION: Identifying the barriers to breast cancer awareness for women with an intellectual disability will help to facilitate breast cancer awareness which has the potential to result in better long-term outcomes through an early diagnosis of breast cancer.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.