Family Support of Older Caregivers: Factors Influencing Change in Quality of Life.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Assessing the Nurse Anesthesiologists' Self-Perceived Preparedness to the Care for Individuals With Intellectual and Development Disability: A Cross Sectional Survey.

Approximately 6.5 million people in the U.S. are affected by an intellectual or developmental disability (IDD). However, their healthcare needs often remain unmet due to the inadequate education and training of healthcare professionals. Given that various procedures may require anesthesia in as many as 40% of individuals with IDD, Certified Registered Nurse Anesthetist Programs need to incorporate IDD training into their curriculum. A cross-sectional survey using a 12-item questionnaire was conducted to assess IDD training. Statistical analyses included the chi-square test and participant demographics were reported as frequencies or percentages. Numerical data were presented as means and standard deviations. A total of 277 respondents completed the survey and most reported (55%) a lack of IDD training at nurse anesthesia programs and 90% recognized the need for additional training. Only 24% felt competent in providing care for patients with IDD, while 52% reported feeling somewhat or very competent. A significant correlation was found between the number of clinical anesthesia experiences and self-rated competence (P < 0.001). Incorporating IDD training into the nurse anesthesia curriculum is critical to preparing competent graduates capable of serving this diverse population. Nurse anesthesia programs should evaluate their curriculum to effectively address this healthcare inequality.

Caring for people with intellectual disabilities: Insights from a cross-sectional study among nursing students.

BACKGROUND: Caring for people with intellectual disabilities poses substantial challenges. Nursing students' emotions, thoughts, and behaviors during their education in the context of people with intellectual disabilities, remain relatively unexplored. OBJECTIVES: To examine nursing students' emotions, thoughts, competence, and expected professional behaviors in care provision for people with intellectual disabilities, as well as to identify factors associated with their expected professional behaviors with this population. DESIGN: A cross-sectional study using a closed self-report questionnaire and one open-ended question. SETTING: The largest academic nursing department in Israel. PARTICIPANTS: Of 245 sophomore nursing students, 177 agreed to participate (71.4 % response rate). METHODS: The study measured feelings, thoughts, competence, and expected professional behaviors in care provision for people with intellectual disabilities based on the Multidimensional Attitudes Scale. One open-ended question addressed how students believe their competence in caring for people with intellectual disabilities could be improved during their nursing studies. A hierarchical linear regression analysis was performed to investigate the contribution of emotions, thoughts, and competence to explaining expected behaviors in care provision. The significance of the model and the R2 were calculated. The open-ended question was analyzed by the constant comparative method. RESULTS: Negative emotions and thoughts (ß = -0.37, 95 % CI -0.47; -0.15 and ß = -0.33, 95 % CI -0.39; -0.13, respectively), along with positive emotions (ß = 0.25, 95 % CI 0.07;0.33), showed significant associations with expected professional behaviors. Qualitative analysis revealed three key themes: communication concern, knowledge gap, and curiosity. The findings of the open-ended question corroborate the quantitative findings. CONCLUSION: It is important to realize that in order to develop quality professional skills for caring for people with intellectual disability, nursing educators must adopt a deep discussion of negative emotions and thoughts with their students regarding people with intellectual disabilities. Ignoring these negative emotions and thoughts can exacerbate the neglect of people with intellectual disabilities' health needs.

Embracing authenticity and challenging norms: Including people with an intellectual disability as lecturers in third level intellectual disability nursing programmes.

UNDERREPRESENTATION OF VOICES FROM PEOPLE WITH INTELLECTUAL DISABILITY IN NURSE EDUCATION: In the Republic of Ireland and the United Kingdom, university level programmes for intellectual disability nurses have traditionally incorporated the perspectives of people with intellectual disabilities but have been delivered by non-disabled educators. Perspectives are interpreted through the lens of the non-disabled person, with the voices of people with intellectual disabilities rarely heard. AN ALTERNATIVE APPROACH: INCLUDING PEOPLE WITH INTELLECTUAL DISABILITY AS EDUCATORS: In this article, an alternative approach is proposed that addresses this problem by including individuals with intellectual disabilities as educators within university programmes. Such inclusion will benefit students, academics, and ultimately the individuals who will receive health and social care from these nurses. Many countries have seen legislative and policy changes promoting inclusion for people with an intellectual disability. These are welcomed, but if they are to have a meaningful impact, societal attitudes and perceptions towards people with intellectual disabilities must be challenged. Drawing upon the concepts of social reconstruction and the ideologies of Paulo Freire and John Dewey, we argue that education can catalyze societal transformation. By including individuals with intellectual disabilities as educators in undergraduate programmes, such as nursing, traditional hierarchies of educators can be challenged, and students can learn from experts with lived experiences. This approach fosters critical thinking, reflection, and the development of authentic and informed healthcare professionals. The experiences of a co-author with a lived experience of intellectual disability as an educator, highlights the positive impact of such inclusion on students' perspectives, understanding, and empathy.

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.

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study.

Background: Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents' quality of life in several dimensions. However, fewer have assessed its impact years after the initial diagnosis. The objective of this work was to carry out an in-depth analysis of the current quality of life and concerns of both mothers and fathers of adults diagnosed with ID, having as a reference the moment of the diagnosis. Methods: 16 parents of adult children with ID were evaluated using a semi-structured interview format. A thematic qualitative analysis was carried out by employing ATLAS.ti software. Results: The results suggested that both the emotional and physical well-being of parents, as well as their interpersonal relationships, had declined. In addition, the multiple life changes that had occurred over the time considered in this study, as well as day-to-day worries, had prevented improvements in their quality of life. Conclusions: Several dimensions of the parents' quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care.

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.

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.

Negative social interactions and coping behaviors: experiences of Japanese mothers caring for children with special needs in disaster areas.

OBJECTIVE: This study aims to identify the challenging experiences pertaining negative social interactions and the coping behaviors of mothers of children with special needs after two major earthquakes in Japan. A qualitative content analysis was conducted based on the interviews of 26 mothers of children with special needs who had experienced the Great East Japan Earthquake in 2011 or Kumamoto Earthquake in 2016. RESULTS: The themes extracted were "perceiving pressures and unfairness," "failing to obtain support and deeper understanding," "realizing child's characteristics that are difficult for others to understand," and "tackling challenges on their own in different ways." The experienced negative social interactions and coping behaviors were found to be similar in both earthquakes. Although the Japanese legislation was amended 2 years after the Great East Japan Earthquake, it may not have had necessarily improved the mothers' situations. Thus, while it is important to provide specific support for families of children with special needs after natural disasters and organize food supplies with a focus on family units, it is also important to increase Japanese society's understanding of the varied characteristics of disabilities.

Emergency department nurses' knowledge, skills, and comfort related to caring for patients with intellectual disabilities.

INTRODUCTION: Individuals with intellectual disabilities (ID) are more likely to visit the emergency department (ED) more frequently than their counterparts without ID. Nurses play an integral role in caring for all patients in the ED, including those with ID, although training to work with this population is limited. The aim of this study was to examine the self-perceived knowledge, skills, and comfort of ED nurses when caring for a patient with ID. METHODS: Questionnaires were returned from 151 nurses from a total of six EDs within Ontario, Canada. The questionnaire contained fourteen items related to knowledge, comfort, practice and skills, readiness for change, prior exposure to patients with ID, and awareness of strategies to identify patients in this population. RESULTS: Although the majority of nurses reported an interaction with a patient with a suspected ID in the past year, only 28% of respondents reported awareness of strategies to help identify if a patient may have an ID, and only half reported feeling skilled in adapting their communication and approach. DISCUSSION: ED nurses are the first point of contact in caring for patients with ID, thus it is crucial that they understand how to provide accessible and inclusive care for this population.

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.

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.

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.

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.

"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.

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.

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.

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.