Nurses' experiences on the use of Positive Behaviour Support in the management of challenging behaviour in adults with a dual diagnosis of a mental health disorder and an intellectual disability.

INTRODUCTION: Individuals who have a dual diagnosis of both a psychiatric disorder and an intellectual disability (ID) are more likely to exhibit challenging behaviour than the general population. Clinicians globally have been encouraged to use positive approaches such as Positive Behaviour Support (PBS) when managing challenging behaviour. AIM: To explore nurses' views, opinions and perceptions on the use of positive behaviour support, as an adjunctive therapy, in the management of challenging behaviour in adults with a dual diagnosis of a mental health disorder and an intellectual disability within a mental health setting. METHOD: A descriptive qualitative study was undertaken to identify registered nurses' experiences of using PBS in managing challenging behaviour. Data were collected from ten participants via semi-structured interviews and analysed using thematic analysis. RESULTS: Two themes were constructed; 1) Being involved from the beginning and 2) Impact on adults with a dual diagnosis. DISCUSSION: Nurses' involvement from the onset was fundamental in maximising the potential of PBS. Benefits of PBS were identified. Having a meaningful relationship with clients and a good knowledge of their behaviours was integral to the success of PBS. IMPLICATIONS FOR PRACTICE: Participants emphasised the importance of continuous education around PBS. Nurses should be included in the formulation of PBS plans. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: RELEVANCE STATEMENT.

Medicaid long-term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities.

BACKGROUND: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. METHOD: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. RESULTS: Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p = .013) and finding paid help (p < .001) than caregivers of individuals without services.

["Zero heavy restraint" objective]. / Objectif "zéro contention forte".

When caring for a patient with an intellectual disability, restraint is often an ambush. At the Institut Jérôme Lejeune, the nursing team has put in place a series of measures designed to help both patient and caregiver, whether in managing the pain induced by care or the apprehension it provokes. After a year's implementation, the number of heavy restraints has fallen significantly.

Experiences of mothers caring for a child with an intellectual disability during the COVID-19 pandemic in the Netherlands.

BACKGROUND: During the first COVID-19 lockdown period, various restrictions led to diminished access to both educational and professional support systems for children with an intellectual disability and their families. The aim of this study was to explore the experiences and needs of parents caring for a child with an intellectual disability during the first lockdown period in the Netherlands. METHOD: Five mothers caring for a child with an intellectual disability participated in this qualitative study. The participants were interviewed using a semi-structured interview guide. The interviews lasted between 26 and 48 min. The interview recordings were transcribed verbatim, and the transcripts were analysed thematically. RESULTS: Three overarching themes emerged: (1) We need to stay healthy, which centres on the mother's urge to protect their child's well-being; (2) We make it work, which provides insight into how the mothers were handling the drastic changes in their family; and (3) My child's and family's place in the world, which focuses on the mothers' experienced position in the world around them. CONCLUSIONS: The current study provides valuable insights into the experiences and needs of mothers caring for a child with an intellectual disability during the COVID-19 pandemic.

COVID-19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design.

BACKGROUND: Parents of children with intellectual disability (ID) report comparatively lower levels of well-being than parents of children without ID. Similarly, children with ID, and to a lesser extent their siblings, are reported to show comparatively higher levels of behaviour and emotional problems. Psychological problems may be accentuated by restrictions associated with the COVID-19 pandemic, due to increased social, caring and economic stressors and reduced social support. However, existing studies have not been able to examine the impact of COVID-19 restrictions accounting for pre-COVID levels of well-being in these families. In a naturalistic design, we examined outcomes for parents, siblings and children with ID in a two-wave longitudinal study where Wave 2 data were gathered for some families before and some during COVID-19 restrictions. METHODS: Parents of children with ID who took part in a Wave 2 survey pre-lockdown (n = 294) and during/post-lockdown (n = 103) completed a number of measures about their well-being and the behaviour and emotional problems of both their child with ID and their nearest-in-age sibling. These same measures had also been completed for all families 2-3 years previously in Wave 1 of the study. RESULTS: After accounting for covariates including family socio-economic circumstances, pre-lockdown and post-lockdown groups did not differ on Waves 1 to 2 change for measures of parental psychological distress, life satisfaction, the impact of caregiving on their lives or perceived positive gains; nor child or sibling internalising or externalising behaviour problems. CONCLUSIONS: Findings of the current study indicate that during and shortly after the COVID-19 lockdown in the United Kingdom, well-being in families of children with an ID (as reported by parents) was at similar levels compared with prior to the lockdown period.

Experiences and needs of direct support staff working with people with intellectual disabilities during the COVID-19 pandemic: A thematic analysis.

BACKGROUND: The present study aimed to explore the experiences and needs of direct support staff during the initial stage of the COVID-19 lockdown in the Netherlands. METHOD: Overall, eleven direct support staff were recruited from five intellectual disability services to participate in this descriptive qualitative study. They recorded 34 audio messages during the considered period. Thematic analysis was used to analyse these audio recordings. RESULTS: Four themes emerged: (1) Emotional impact, which pertained to various emotions they experienced in their work; (2) Cognitive impact, which referred to challenges and changes they had undergone in their work; (3) Practical impact, which centred on the practical impact of the pandemic on their work; and (4) Professional impact, which concerned their experiences with other professionals. CONCLUSIONS: This study provides valuable insights into the experiences and needs of direct support staff during the COVID-19 pandemic, which, in turn, can help inform practice in preparation for a second wave of COVID-19 or another future pandemic.

Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review.

BACKGROUND: While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regard to SRH for women and girls with ID. METHOD: We used Arksey and O'Malley's six-stage scoping framework, with Levac, Colquhoun and O'Brien's revisions, to evaluate identified sources. We searched three electronic databases, six ID journals and reference lists in full-text articles. Inclusion criteria included (1) primary and secondary source research studies in peer-reviewed journals; (2) published in English; (3) all research methodologies (i.e. qualitative, quantitative, mixed methods and systematic reviews or commentaries); (4) published between 2000 and 2016; and (5) studies from any country. RESULTS: The search yielded 2062 studies; 57 articles met inclusion criteria. Most studies employed purposive, convenience or criterion sampling. Participants included people with ID, family caregivers, paid caregivers and health-care professionals. Findings were summarised thematically: (1) menstruation and menopause; (2) vaccinations and preventive screenings; (3) supporting sexuality and healthy relationships; (4) coordinating with health-care providers and (5) contraception and sterilisation. CONCLUSIONS: Findings from this scoping review underscore the need for more and better-quality research, including how family caregivers assist women and girls with ID access perinatal and preventive SRH services and sexual abuse education. Family caregivers, women and girls with ID and health-care providers need increased access to information about SRH.

End-of-life care among older cancer patients with intellectual disability in comparison with the general population: a national register study.

BACKGROUND: Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups. METHODS: The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort). RESULTS: Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64). CONCLUSIONS: Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.

Factor structure of the professional quality of life scale among direct support professionals: factorial validity and scale reliability.

BACKGROUND: Direct support professionals (DSPs) support people with intellectual and developmental disabilities in activities of daily living. DSPs may experience both contentment and struggles with their work. As agencies grapple with their recruitment and retention, understanding DSPs' holistic work experience is important. The Professional Quality of Life (ProQOL) scale assesses multiple domains of work experiences (i.e. compassion satisfaction, burnout and secondary traumatic stress). Despite extensive use across helping professions, the ProQOL is largely absent from DSP research. METHOD: This study examined the factor structure of the ProQOL with DSPs. Using secondary data from 495 DSPs, confirmatory factor analysis was conducted to determine if the original three-factor structure holds for this population. RESULTS: We confirmed the factorial validity of the ProQOL with the three-factor solution. In the validation process, some modifications were suggested to the model, which also improved the scale reliability. CONCLUSIONS: The current study provides initial evidence of the factorial validity of the ProQOL when used with DSPs, as well as recommendations for subsequent improvements and future research.

Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities.

BACKGROUND: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals. METHOD: The present study sought to examine the impact of COVID-19 in 77 ethnically, linguistically and socioeconomically diverse families with young children with intellectual and developmental disabilities (IDDs) in California and Oregon, who were participating in larger intervention studies. Parents responded to five interview questions about the impact of the pandemic, services for their child, silver linings or positive aspects, coping and their concerns about the long-term impact of the pandemic. RESULTS: Parents reported that their biggest challenge was being at home caring for their children with the loss of many essential services. Parents reported some positive aspects of the pandemic, especially being together as a family. Although there were positive aspects of the situation, many parents expressed concern about long-term impacts of the pandemic on their children's development, given the loss of services, education and social engagement opportunities. CONCLUSION: Results suggest that parents of young children with IDD report significant challenges at home during the pandemic. Professional support, especially during the reopening phases, will be critical to support family well-being and child developmental outcomes.

Health-related quality of life amongst primary caregivers of children with intellectual disability.

BACKGROUND: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population. METHODS: Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ-5D-5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties. RESULTS: Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ-5D-5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ-5D-5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age-equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co-morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL. CONCLUSIONS: This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost-effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers.

Mediating the interface between voluntariness and coercion: A qualitative study of learning disability nurses' work in medical examinations of people with intellectual disability.

AIMS AND OBJECTIVES: To gain knowledge of prevention and use of restraints in provision of medical care to people with intellectual disability. To this end, we explore how learning disability nurses in community services support the individual through medical examinations when facing resistance. BACKGROUND: Despite increased focus on limiting restraints, there is a lack of knowledge of how restraints are prevented and used in the delivery of physical health care to people with intellectual disability. DESIGN: We used an ethnographic comparative case design (n = 6). METHODS: The study was carried out in Norway. The analysis is based on data from semi-structured interviews, participant observation and document studies, in addition to health sociological perspectives on how to support individuals to make their body available for medical examination and intervention. The SRQR checklist was used. RESULTS: Learning disability nurses strove to ensure that examinations were carried out on the individual's terms, supporting the individual in three phases: preparing for the examination, facilitating the examination and, when facing resistance, intervening to ensure safe and compassionate completion of the examination. CONCLUSIONS: Supporting the person was a precarious process where professionals had to balance considerations of voluntariness and coercion, progress and breakdown, safety and risk of injury, and dignity and violation. Through their support, learning disability nurses helped to constitute the "resistant" individual as "a cooperative patient," whose body could be examined within the knowledge and methods of medicine, but who could also be safeguarded as a human being through the strain of undergoing examination. RELEVANCE TO CLINICAL PRACTICE: The article sheds light on how restraints are used in the medical examination and treatment of people with intellectual disabilities and demonstrates the significance of professional support workers' contributions, both in facilitating safe and efficient medical care and in ensuring the least restrictive and most compassionate care possible.

Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities.

AIMS AND OBJECTIVES: To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. BACKGROUND: The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. DESIGN: An interpretative qualitative design. METHODS: Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. RESULTS: Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: "a deep sense of loss," "an overwhelming process," "parents making transitions happen," "a shock to the adult healthcare system" and "the unbearable pressure." Nurses were often seen as instrumental to counteracting some of these challenges. CONCLUSIONS: There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. RELEVANCE TO CLINICAL PRACTICE: Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.

A nurses' ethical commitment to people with intellectual and developmental disabilities.

Aim: This article explores the issues of knowledge deficits of healthcare professionals in meeting the needs of people with IDD throughout the life span, and to identify factors that contribute to these deficits. Although statistics vary due to census results and the presence of a "hidden population," approximately 1%-3% of the global population identify as living with an intellectual or developmental disability. People with intellectual or developmental disability experience health inequities and confront multiple barriers in society, often related to the stigma of intellectual or developmental disability. Disparities in care and service are attributed to a lack of knowledge and understanding among healthcare providers about people with intellectual or developmental disability, despite their increased risk for chronic health problems. The near absence of educational programs in nursing both nationally and internationally contributes to this significant knowledge deficit. In addition, ethical considerations between paternalistic beneficence and idealized autonomy have resulted in a lack of clear direction in working with a population that is often ignored or exploited. Nurses who view people with intellectual or developmental disability as vulnerable without assessing or acknowledging their capabilities may err toward paternalism in an effort to "first do no harm." Likewise, nurses who fail to recognize the challenges and limitations faced by people with intellectual or developmental disability may not provide sufficient protections for a vulnerable person. People with intellectual or developmental disability are not binary, but rather complex individuals with a myriad of presentations. This article seeks to encourage a well-informed model of nursing care. Through an ethical lens, this article explores the nurse's ethical commitments in cases of victimization, access to care, decision making, and the provision of optimal end-of-life care for people with intellectual or developmental disability.

Staff understandings of abuse and poor practice in residential settings for adults with intellectual disabilities.

BACKGROUND: A common factor in the abuse of people with intellectual disabilities in residential settings has been the failure of care staff and frontline managers to recognise poor practice at an early stage and prevent its development into a culture of abuse. In this context, staff understandings of abuse and poor practice in residential services for people with intellectual disabilities were explored. METHOD: Semi-structured interviews (n = 56) were undertaken with care staff and frontline managers working across England. Interviews included the use of vignettes, based on real-life experiences of people with intellectual disabilities, to prompt discussion. RESULTS: Staff struggled to define either "abuse" or "poor practice", focussing more on individual acts or omissions than on institutional practices. When faced with vignettes, staff demonstrated a lack of agreement regarding what constitutes either abuse or poor practice. CONCLUSIONS: The implications for practice in residential care settings and for safeguarding training are discussed.

Attributional styles of support staff working with people with intellectual disabilities exhibiting challenging behaviour.

BACKGROUND: Attributions are cognitive variables that influence a person's behaviour. Although a large volume of research has been conducted on the attributions of support staff with regard to challenging behaviour (CB) exhibited by people with intellectual disabilities (ID), studies on patterns of attributional dimensions (i.e. attributional styles) are scarce. METHOD: Using semi-structured interviews, 19 support staff members were asked to describe incidents of aggressive, self-injurious and sexualized challenging behaviour. Data on attributions were analysed using the Leeds Attributional Coding System. RESULTS: Four attributional styles differed significantly for aggressive, self-injurious and sexualized challenging behaviour. In addition, support staff members largely attributed these three types of CB to characteristics and behaviour of clients with ID. CONCLUSIONS: The results indicate that it is important to train support staff to recognize and understand the ways in which their attributions and behaviour influence the existence and maintenance of CB.

"No! You can't have it": Problematizing choice in institutionalized adults with intellectual disabilities.

Institutionalized adults with profound intellectual disabilities (ID) face significant challenges to having their choice-making cultivated and supported. Based on observational and interview data from an institutional ethnographic study, this article explores how choice-making during mealtimes is acknowledged and problematized by staff. First, we suggest that Foucauldian problematization offers a lens through which to better understand how mealtime intervention plans passed down over time become embodied restrictive practices. Second, we provide examples and analyses of mealtime negotiations between staff and residents. Analyses revealed staff infantilize and misrepresent residents' choice-making during meals as manipulation; additionally, analyses suggest that past experiences of staff with residents and historical meal plans color how they acknowledge and interpret residents' choices. Our argument is an attempt to move forward discussions concerning the implementation of quality habilitation services by highlighting the ways contemporary institutional systems perpetuate misrepresentations of nonverbal behaviors in adults with profound ID.

The potential role of nurses in leading positive behaviour support.

Positive behaviour support (PBS) has become the preferred intervention in the management of challenging behaviour in learning disability and mental health services. However, there is an absence of literature on nurses' views and experience of PBS. Nurses are passive in PBS plan development while other professionals, such as clinical psychologists, often take the lead. While nurses see clinical psychologists as experts in PBS, they feel this could create a barrier that hinders its full potential and a more multidisciplinary approach would be beneficial. Nurses could take a pivotal role in delivering PBS plans if they were able to take a leading role, and this would benefit service users as nurses work far more closely with them than other professionals.

Development of nursing quality care process metrics and indicators for intellectual disability services: a literature review and modified Delphi consensus study.

BACKGROUND: Nursing process quality care metrics and indicators are quantifiable measures of the nursing care delivered to clients. They can be used to identify and support nurses' contribution to high quality, safe, client care and are lacking in specialist intellectual disability nursing. In a national Nursing Quality Care-Metrics project for Irish intellectual disability services, a set of nursing quality care process metrics and associated indicators were established for intellectual disability services. METHODS: A two-stage design approach was undertaken; a broad scoping review of the literature and a modified Delphi consensus process. The Delphi included a four round e-Delphi survey and a consensus meeting. Four hundred one intellectual disability nurses working in Ireland were recruited for the surveys and 20 stakeholders attended the consensus meeting. RESULTS: From the review, 20 existing and 16 potential intellectual disability nursing metrics were identified for nurses to prioritise in the e-surveys. After the four survey rounds, 12 intellectual disability nursing metrics and 84 associated indicators were identified. Following the consensus meeting, these were reduced to 12 metrics and 79 indicators. CONCLUSIONS: This first set of intellectual disability nursing process metrics and associated indicators has been identified for implementation in practice. These metrics while developed in Ireland have international relevance and their application and appropriateness in practice needs to be evaluated.

When the larger objective matters more: support workers' epistemic and deontic authority over adult service-users.

We report on how support workers sometimes over-ride the wishes of people living with cognitive impairments. This can happen when they are both involved in some project (such as an institutionally-managed game, a physical journey, an educational activity and so on). The support worker might use their deontic authority (to propose, decide or announce future actions) to do things that advance the over-arching project, in spite of proposals for what are cast as diversions from the person with impairments. They might also use their epistemic authority (their greater knowledge or cognitive capacity) to trump their clients' choices and preferences in subordinate projects. Not orienting to suggested courses of actions is generally interactionally dispreferred and troublesome, but, although the providers do sometimes orient to their actions as balking their clients' wishes, they usually do not, and encounter little resistance. We discuss how people with disabilities may resist or palliate such loss of control, and the dilemmas that support staff face in carrying out their duties.