Supporting the needs of people with intellectual and developmental disabilities 1 year into the COVID-19 pandemic: An international, mixed methods study of nurses' perspectives.

As the largest public health crisis within a century, the COVID-19 pandemic has caused long-term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52-item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open-ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID-19-related isolation and quarantine. Content analysis of open-ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID-19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID-19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well-being of people with IDD during a long-term public health crisis.

COVID-19: Evolving challenges and opportunities for residential and vocational intellectual disability service providers.

The sustainability of service provision continues to be a challenge in the field of intellectual disability due to changes in delivery as part of intermittent or ongoing lockdown requirements during the COVID-19 global pandemic. There are many facets to this that may have temporary or permanent impacts not only on the sector, but ultimately for service access and outcomes for people with intellectual disability themselves. This narrative literature review identifies both opportunities for, and impacts on, service providers across jurisdictions. These are explored in terms of the effects that suspension, adaptation, continuity or the cessation of service delivery have had, and those that are projected. Such impacts include, but are not limited to, changes in service access and delivery, employment roles and responsibilities, financial sustainability and the need to diversify the services and supports provided and how they are delivered. The relevance of these impacts for family carers and people with intellectual disability is also discussed. Nonetheless, there have also been opportunities which inform the shape of service delivery and pandemic planning into the future.

Life is different now - impacts of eating disorders on Carers in New Zealand: a qualitative study.

BACKGROUND: Eating disorders are widely recognized as serious illnesses, with complex psychological and physiological comorbidities. Affected individuals face a protracted and challenging treatment journey which, particularly for children and adolescents, requires significant input from family members as carers. This study investigated the perspectives and experiences of those caring for family members with an eating disorder diagnosis. METHOD: Participants were carers of affected individuals with an eating disorder, and were recruited from an online survey, subsequently consenting to a semi-structured qualitative interview. Inductive thematic analysis was undertaken to identify themes. RESULTS: Most participants in the sample were parents of affected individuals. Significant and ongoing psychological and emotional impacts were identified across the sample. The diagnosis, treatment journey and overall impact of the carer role created a situation captured by the over-arching theme 'life is different now'. Impacts profoundly influenced relationships and were felt across all aspects of life by carers, affected individuals and other family members. Heightened worry and vigilance experienced by carers continued beyond improvement or recovery. CONCLUSIONS: This research highlighted challenging and often exhausting impacts felt by carers due to their pivotal role in eating disorder treatment. Inadequate support for most carers in this sample has clear implications for families as well as service and funding providers. Further research should more fully investigate carer experience with different eating disorders to explore the type of support necessary to build capacity and resilience to reduce carer burden.

Eating disorders (EDs) are serious illnesses with a challenging treatment journey that often requires significant input from family members as carers. This study investigated perspectives and experiences of those caring for family members with an ED diagnosis.Carers reported significant impacts on many facets of their lives. The findings revealed levels of emotional and psychological stress both during and beyond the treatment journey. For carers 'normal' life was profoundly impacted by the complicated and often unanticipated role of treatment provider, and navigating the maze of treatment while trying to understand the diagnosis itself. For those with other children, the impacts were compounded by the distress also witnessed in those children. Relationships were significantly affected by the demands of treatment and the serious consequences of the disorder, as well as misunderstandings and stigma related to EDs.A 'new normal' state of constant worry and ongoing vigilance defined life post-diagnosis. The results indicate the impacts of an ED diagnosis in a loved one, and the demands of caring for that person and assuming the role of treatment provider were life-changing. For these carers, 'life is different now'.

Quality indicators for a community-based wound care centre: An integrative review.

The purpose of this review was to identify the role and contribution of community-based nurse-led wound care as a service delivery model. Centres increasingly respond proactively to assess and manage wounds at all stages - not only chronic wound care. We conducted an integrative review of literature, searching five databases, 2007-2018. Based on inclusion and exclusion criteria, we systematically approached article selection and all three authors collaborated to chart the study variables, evaluate data, and synthesise results. Eighteen studies were included, representing a range of care models internationally. The findings showed a need for nurse-led clinics to provide evidence-based care using best practice guidelines for all wound types. Wound care practices should be standardised across the particular service and be integrated with higher levels of resources such as investigative services and surgical units. A multi-disciplinary approach was likely to achieve better patient outcomes, while patient-centred care with strong patient engagement was likely to assist patients' compliance with treatment. High-quality community-based wound services should include nursing leadership based on a hub-and-spoke model. This is ideally patient-centred, evidence-based, and underpinned by a commitment to developing innovations in terms of treatment modalities, accessibility, and patient engagement.

Aging With Intellectual Disabilities in Families: Navigating Ever-Changing Seas-A Theoretical Model.

Life expectancy is increasing for people with intellectual disability, many of whom live with family. While there has been research about aging and future planning, there is limited evidence about the characteristics of the caregiving relationship. The aim of this study was to examine perspectives of caregiving for older people with intellectual disability and their family. A constructivist grounded theory approach was used, and 19 people with intellectual disability and 28 family members were interviewed. Caregiving was informed by transitions across the life course. Three interrelated concepts, Riding the Waves, Shifting Sands-Changing Tides, and Uncovering Horizons comprise the core components of the theoretical model-Navigating Ever-Changing Seas. This model informs complex, trans-generational relationships that impact decision-making for people with a long-term condition. Applications within health care indicate a need for systems to include individuals and their networks of care in policy, practice, research, and service delivery across the lifespan.

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability: A scoping review.

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability.

Psychological health and resilience: the impact of significant earthquake events on tertiary level professional students. A cross-sectional study.

BACKGROUND: The effect of natural disasters internationally is linked to intensity and duration and the impact of these events for tertiary level professional students is not clearly understood. Following a 7.1 magnitude earthquake in New Zealand in 2010 (with aftershocks lasting 27 months) a number of tertiary nursing students experienced significant disruption to their studies. AIM: To compare the psychological health, resilience and the impact on learning for three cohorts of students engaged in tertiary nursing education during this time. METHOD: A cross-sectional survey design and convenience sampling was used for three cohorts of learners. An online survey was completed (n = 290) and included: Depression Anxiety and Stress Scale; PTSD Checklist; Work and Social Adjustment Scale; Connor-Davidson Resilience Scale. RESULTS: Statistically significant differences were found across the psychometric scales with regard to relationship status. Whilst an increase in self-reported physical and mental health issues prior to and following the earthquakes were noted, mitigating factors were also identified. CONCLUSIONS: In order to support psychological health amongst nursing students, tertiary education systems need to plan for sustainable learning. The importance of facilitating future orientation within organisations is necessary to develop resilience amongst staff and students, which, in turn, will enable on-going education during significant disaster events.

Qualitative meta-synthesis: the experience of chronic pain across conditions.

AIM: To synthesize qualitative descriptions of the experience of chronic pain across conditions. BACKGROUND: Chronic pain is a transdiagnostic symptom in that while somatic pathology plays a role in activating pain pathways, psychological and social factors contribute to the experience of pain over time. The treatment of the underlying condition may require both biomedical intervention and biopsychosocial approaches. DESIGN: Qualitative meta-synthesis using Confidence in the Evidence from Reviews of Qualitative Research (CERQual) developed by Grading of Recommendations Assessment Development and Evaluation (GRADE) working group to evaluate the strength of the evidence. DATA SOURCES: PubMed and Ovid Medline from 2000-2015. REVIEW METHODS: Following a systematic search strategy all papers were assessed in relation to inclusion criteria and quality. Themes were extracted from each study and a meta-synthesis conducted before completing an evaluation of confidence in the findings. RESULTS: Forty-one papers exploring the experience of chronic pain were included in the review. Five meta-themes were identified across the studies: 1) the body as obstacle; 2) invisible but real; 3) disrupted sense of self; 4) unpredictability; and 5) keeping going. There was high confidence in the evidence for three themes: 'the body as obstacle'; 'disrupted sense of self' and 'keeping going'; and moderate confidence in the evidence for 'invisible but real' and 'unpredictability'. CONCLUSIONS: The findings in this review suggest there are similarities in the experience of chronic pain across a range of conditions that have implications for the development of transdiagnostic pain management strategies and interventions.

The role of key workers in supporting people with intellectual disability in the self-management of their diabetes: a qualitative New Zealand study.

The incidence of diabetes in people with an intellectual disability, although unknown, is indicated to be higher than the general population. Given the challenges individuals with intellectual disability may face, this population is often dependent upon key workers to manage their health and well-being. One aim of a wider study on the self-management of diabetes by people with intellectual disability was to explore how key workers supported their self-management. That aim was the focus of this paper. Between 2009 and 2010, 17 staff from five residential intellectual disability services and two supported independent living services within New Zealand, consented to a semi-structured interview. Transcripts of the interviews were analysed using Thomas' General Inductive Approach. Three overarching themes emerged; having knowledge and understanding, being lifestyle police and ensuring future well-being. While knowledge, skills and perspectives varied, all participants were committed to ensuring that the lifestyle of the person concerned was compatible with the management of their diabetes. A range of perspectives existed between the expectations they had of themselves, colleagues and the individual with diabetes. There was an identified need for initial and ongoing education of permanent and casual staff and the people themselves with diabetes in collaboration with health and disability services to build confidence and promote self-management practices. In so doing, the impacts of this long-term condition may be reduced and the health outcomes improved for people with intellectual disability.

Reform and community care: has de-institutionalisation delivered for people with intellectual disability?

Reform and community care: has de-institutionalisation delivered for people with intellectual disability? In this paper we provide a post structural analysis of the theoretical shifts informing changes to service delivery over the past 150 years in relation to people with intellectual disability. We utilise the New Zealand experience of reform as it reflected global knowledge at any given period. Firstly, we address the historical modes of treatment and care, with reference to the eugenics movement, the concepts informing 'Prisons of protection' and moral treatment. Secondly the paper traces reforms commencing in the 1960s where changes from institutional care to community care were informed by humanistic ideals, a key driver being the concept of normalisation. Theorists offered competing discourses that formed the bases of arguments for the status quo whilst resistant voices advocated change. Covering such significant changes leads us to assess the state of de-institutionalisation' as it stands today and how it may be perceived in the future. We assert that Foucault's genealogical approach provides analytic tools to uncover the dynamics of changing attitudes and approaches to service delivery. In applying a Foucauldian lens to the trajectory of reforms concerning institutionalisation to de-institutionalisation we question whether a form of re-institutionalisation may be occurring.