Medical decision-making abilities in older adults with chronic partial epilepsy

Little is known about the medical decision-making abilities of older adults with chronic partial epilepsy, although these patients are often faced with medical decisions that impact their health care. Twenty-one older adults with epilepsy and 21 healthy older adults completed the Capacity to Consent to Treatment Instrument (CCTI) and Dementia Rating Scale II (DRS-II). Older adults with epilepsy performed significantly below controls on the CCTI standards Evidencing Choice, Appreciation, and Understanding and the DRS-II Total Score. DRS-II was positively associated with performance on the standards Appreciation and Understanding. Number of antiepileptic drugs, duration of epilepsy, and age at seizure onset were related to performance on Understanding. Older adults with epilepsy demonstrated deficits in their capacity to give informed consent for medical treatment that appear to be associated with cognition and seizure variables. Physicians should consider the decisional abilities of their older adult patients with epilepsy when presenting treatment options.     

Living ‘a life like ours’: support workers' accounts of substitute decision‐making in residential care homes for adults with intellectual disabilities

Background In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision‐making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her ‘best interests’. However, the value of adopting established principles and procedures for substitute decision‐making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day‐to‐day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision‐making within a broad moral account of their care role, orientating their support towards helping residents to live ‘a life like ours’. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision‐making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of ‘good’ care.     

Well-being, involvement in paid work and division of child-care in parents of children with intellectual disabilities in Sweden

Background The aim of the study was to compare mothers’ and fathers’ involvement in paid work and child‐care in families of children with intellectual disability (ID) and control families and to test if differences in well‐being between mothers and fathers of children with ID can be explained by differences in involvement in paid work and child‐care. Methods Mothers and fathers of 179 children with ID and 196 typically developing children answered mailed surveys on their involvement in paid work, child‐care tasks and well‐being. Only two‐parent families were included. Results The results show main effects for gender of the parent and presence of a child with ID on involvement in paid work and well‐being. Interaction effects indicate that mothers of children with ID are more affected than fathers in their participation in paid work and well‐being. A positive relation between level of participation in paid work and well‐being was found for both mothers and fathers. No difference in division of child‐care tasks was found between families of children with ID and control families. Differences in involvement in paid work and child‐care in families of children with ID only explained 5% of the variance in the difference between mothers’ and fathers’ well‐being. Conclusions Families with children with ID differ from control families in that the parents are less involved in paid work and have lower levels of well‐being. A positive relation between involvement in paid work and well‐being was found.     

Paid employment of mothers and fathers of an adult child with multiple disabilities

Background Paid employment is increasingly undertaken by mothers as their children age, with the majority of women being in employment by the time their offspring are adult. Opportunities to engage in employment appear to be reduced for mothers of children with disabilities; however, little is known about the employment of mothers or fathers of adults with disabilities. Method Data were collected regarding the employment decisions of parents of a young adult with multiple disabilities and contrasted with those of parents whose children were all developing normally. Twenty‐five mothers and 12 fathers of a young adult with multiple disabilities were interviewed, as were 25 comparison mothers and 19 comparison fathers. Data collected included hours of work, reasons for employment status, attitudes towards work and child care, and psychological well‐being. Results Clear differences were found between the two groups. Mothers and fathers of a child with multiple disabilities showed different engagement patterns with the paid workforce from comparison parents. Hours of work for fathers of a young adult with multiple disabilities showed a bi‐modal distribution, with some fathers working fewer hours than usual and others working very long hours. For mothers in both groups, the number of hours in paid employment was negatively associated with reports of psychological problems. Conclusions Increased attention needs to be given to the employment opportunities of parents of children with disabilities since employment appears to play a protective role for mothers, in particular. Services provided to adults with disabilities will need to change if parents are to have the same life chances as parents without adult offspring with a disability.     

The development of the QUALITRA‐ID: a user‐orientated interview to assess the quality of care and service trajectories for intellectually disabled persons

Background Care and service trajectories for people with intellectual disabilities (ID) are routes within the healthcare delivery system that consist of all the steps that people with ID and their families have to take in order to realise the needed care and services. In contrast to the growing system‐orientated knowledge concerning quality of care delivered through collaborative relationships between care providers, specific user‐orientated knowledge regarding the quality of care and service trajectories is largely lacking. Aim This article aims to describe the development of the QUALITRA‐ID; a user‐orientated interview concerning the quality of care and service trajectories for people with ID. Methods First, the phenomenon ‘care and service trajectories’ is conceptualised on the basis of document analysis and semi‐structured interviews with key informants in the field of health care for people with ID. Second, the quality of care and service trajectories is operationalised by means of eight focus group discussions with intellectually disabled persons and their parents/relatives and a review of the literature. Third, the QUALITRA‐ID is constructed using the results of the conceptualisation and operationalisation of the phenomenon. Fourth, the QUALITRA‐ID is refined in two stages that were concerned with examining the feasibility, understandability and completeness of the QUALITRA‐ID. The second stage was also concerned with the first quality assessment among people with ID. Results The final result is a 24‐item QUALITRA‐ID consisting of a personal conversation and a closed‐ended part.     

The factors affecting end‐of‐life decision‐making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study

Background The aim of this study was to investigate the process of end‐of‐life decision‐making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods This qualitative study involved nine semi‐structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end‐of‐life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures. Results Four main contributory factors to the physicians decision‐making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision‐making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end‐of‐life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long‐standing knowledge of the patient's fragile health. Conclusions In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision‐making process.     

Health status of mothers of adults with intellectual disability

A cross‐sectional survey was conducted to describe the health of mothers of adults with intellectual disability (ID), and the influence of the mother's and her adult child's characteristics on her health. The sample consisted of 108 mothers divided into mid‐life and later‐life groups. Four service agencies mailed SF‐36 forms and demographic questionnaires to their clients. The return rate from primary caregivers was 70%. The physical and the mental components of health of both groups of mothers were found to be similar to or better than those of their counterparts in the US national norms. Arthritis was found to influence the physical health of both groups of mothers. Employment was found to influence physical health of the mid‐life mothers, while family income was found to influence mental health of the later‐life mothers. The characteristics of adults with ID did not influence the mothers' health significantly. Mothers' caregiving for their adult children with ID might not be as detrimental to the mid‐life mothers' physical component of health as it might be to the later‐life mothers. Further studies are needed.     

End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities

Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end‐of‐life care. Methods A cross‐sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end‐of‐life care policy documents for content analysis. Results Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end‐of‐life decisions with a possible life‐shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life‐prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end‐of‐life decisions with a possible life‐shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end‐of‐life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end‐of‐life care while one‐third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments. Conclusions The presence of end‐of‐life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.     

Behaviour/mental health problems in young adults with intellectual disability: the impact on families

Background The present authors studied the impact of dual diagnosis [i.e. intellectual disability (ID) and mental disorder] in young adults on their mothers’ perceived levels of stress and decisions about placement. Methods The mothers of 103 young adults with severe ID were interviewed using a 2–3‐h in‐depth protocol of measures designed to assess their child’s adaptive functioning, maladaptive behaviour, mental health problems and negative impact on the family, as well as their own thoughts on out‐of‐home placement. The Scales of Independent Behavior – Revised Problem Behavior Scale assessed problem behaviours and the Reiss Screen assessed mental disorder. Results These measures were highly correlated (r = 0.64), but tapped some different domains of maladaptive behaviour and proved to be most predictive when employed together. Behaviour and/or mental health (B/MH) problems significantly predicted the mothers’ perceived negative impact of the young adult on the family, even after controlling for other young adult characteristics. These problems also predicted the family’s steps toward seeking out‐of‐home placement, as did better young adult health and the mother’s higher educational attainment; stress did not predict additional variance in placement once these variables were accounted for. Conclusions The discussion focuses on the implications for service provision to families of young adults with B/MH problems.     

An exploratory study into health care policy for persons with intellectual disabilities in Taiwan

Background Although Taiwan has already had a higher quality of health care compared with other countries, there still is a need to review the quality and effectiveness of services provided. The lack of health care policy for persons with disabilities is a reflection of health care provision in Taiwan. Health care provision problems will limit persons with disabilities in their access to the health care system. The purpose of the present study was to examine the general beliefs about the current health care policies for persons with intellectual disabilities (ID) in Taiwan. Methods Data were obtained from two sources, namely government policies analysis and interviews with representatives for key stakeholders in the field of ID. Results The results illustrate that health care service problems for persons with ID include: how to enforce the discovery system and early intervention service, disability evaluation system, National Health Insurance medical payment and medical care resource development are still confining their quality of care. Furthermore, the links between social welfare, education and health care have been lost because the different roles and perspectives of people in these fields are fundamentally at odds with one another. Health care professionals have become less reform‐minded as a consequence of the conditions of their work. Consequently, a complete and coordinated health care policy for persons with ID has become unattainable in society. The present paper draws on evidence from research and policies to explore the problems and potential of service development for persons with ID, and to identify review and action points for managing its implementation.     

Deciding about sterilisation: perspectives from women with an intellectual disability and their families in Taiwan

Background This qualitative study explores decision‐making regarding sterilisation for women with intellectual disabilities (ID) living with their families, including how such decisions are made and who is involved in the decision‐making. Methods Eleven families including sterilised women with ID participated in the study. Semi‐structured interviews were conducted with family members and four of the women with ID; the interviews took place at the family homes during March 2009. The interview schedule sought information regarding decision‐making on sterilisation including the reasons for the sterilisation, the identities of those involved in the decision‐making, attitudes towards the sexuality of women with ID and the role of women with ID in decision‐making about their own sterilisation. Additionally, women with ID were asked about their experiences of sterilisation. Results The data showed that most of the women who underwent tubal ligation were married and had mild ID; the decision to perform tubal ligation was mostly made by the husband or parents‐in‐law, and was made after the women had given birth. The reasons given by the families of these women for deciding on sterilisation included: the woman was unable to care for the children, the family could not afford to raise many children, the concern that the ID might be hereditary, or a perceived risk of pregnancy from rape. The two women who underwent hysterectomy were unmarried and had more severe ID than the married women with ID who received tubal ligation. In these two cases, the decisions were primarily made by the mothers of the women based on concerns about managing their menstruation. Almost none of the women with ID were involved in the decision‐making process, and some were not even informed of the nature of the surgery. Health professionals and service workers contacted by the families were also influential in the decision‐making. The autonomy of the women to engage in decision‐making regarding sterilisation thus was constrained by their families and professionals, without considering either sterilisation or hysterectomy a violation of the essential human rights of the women involved. Conclusion The results suggest that with respect to sexuality and body images among women with ID, concern should exist among society in general and among professionals in particular, regarding human rights; furthermore, more information and better educational programmes must be provided to relevant professionals, as well as to women with ID and their families.     

A prospective case control study of psychiatric disorders in adults with epilepsy and intellectual disability

Purpose: No study to date has prospectively investigated the impact of epilepsy on psychiatric disorders among adults with an intellectual disability (ID). This study aimed to determine prospectively the influence of epilepsy on the development of psychiatric disorders in adults with ID. Method: Psychiatric symptoms were measured prospectively over a 1‐year period among 45 adults with ID and active epilepsy and 45 adults with ID without epilepsy, matched on level of ID. The 1‐year incidence rate (IR) of commonly occurring Axis 1 psychiatric disorders was compared with and without controlling for possible confounding factors. Total psychiatric symptom scores over the period were compared between the two groups using repeated‐measures analysis of covariance. Key Findings: Adults with epilepsy and ID had a more than seven times increased risk for developing psychiatric disorders, particularly depression and unspecified disorders of presumed organic origin, including dementia, over a 1‐year period compared to those with ID only. Comparison of the psychiatric scores showed the epilepsy group to have significantly higher unspecified disorder and depression symptom scores. Significance: The findings point to an increased risk of depression and unspecified disorders, including dementia, among adults with ID and epilepsy. Further exploration of the nature and treatment of these unspecified disorders may help the care of people with epilepsy and ID.     

The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness

BACKGROUND: Mothers who have a child with intellectual disability (ID) or mental illness face a lifetime of caregiving responsibilities and challenges. The present study investigated changes over time in how mothers cope with the challenges of caring for an adult child with disabilities and the effects of changes in coping on maternal well-being. METHODS: A sample of 246 ageing mothers of adults with ID and 74 mothers of adults with mental illness was drawn from two parallel longitudinal studies of later-life caregiving. RESULTS: There was considerable variability at the individual level in the degree to which mothers changed over time in their use of problem-focused and emotion-focused coping strategies. For both groups, an increase in their use of emotion-focused coping led to declining levels of well-being. For the parents of adults with ID, an increase in their use of problem-focused coping resulted in a reduction in distress and an improvement in the quality of the relationship with their adult child. For the parents of adults with mental illness, an increase in the use of problem-focused coping had no effect on levels of distress, but led to an improved relationship with their adult child. CONCLUSIONS: The present study underscores the importance of coping in the lives of older mothers of adults with disabilities.     

The well-being of mothers of adolescents with developmental disabilities in relation to medical care utilization and satisfaction with health care

Parents of children with disabilities have been found to be more likely to experience stress and depressive symptoms than parents of typically developing children as a result of the increased challenges inherent in their parenting role. This study investigated the utilization of and satisfaction with adolescent health care services reported by mothers and their relation to maternal well-being. Participants included 73 mothers and their adolescents with developmental disabilities who had been recruited as infants and toddlers from early intervention programs to participate in a longitudinal investigation, the Early Intervention Collaborative Study. Data were collected through parent reports and structured assessments with adolescents. Regression analyses were conducted to test whether utilization and maternal satisfaction with care related to maternal depressive symptoms or parenting stress after controlling for child and family characteristics. The results demonstrated that both utilization and maternal satisfaction with health care added unique variance in predicting lower levels of maternal stress and depressive symptoms.     

Resilience and the course of daily parenting stress in families of young children with intellectual disabilities

Background Parenting stresses have consistently been found to be higher in parents of children with intellectual disabilities (ID); yet, some families are able to be resilient and thrive in the face of these challenges. Despite the considerable research on stress in families of ID, there is still little known about the stability and compensatory factors associated with everyday parenting stresses. Methods Trajectories of daily parenting stress were studied for both mothers and fathers of children with ID across child ages 36–60 months, as were specific familial risk and resilience factors that affect these trajectories, including psychological well‐being of each parent, marital adjustment and positive parent–child relationships. Results Mothers' daily parenting stress significantly increased over time, while fathers' daily parenting stress remained more constant. Decreases in mothers' daily parenting stress trajectory were associated with both mother and father's well‐being and perceived marital adjustment, as well as a positive father–child relationship. However, decreases in fathers' daily parenting stress trajectory were only affected by mother's well‐being and both parents' perceived marital adjustment. Conclusions Parenting stress processes are not shared entirely across the preschool period in parents of children with ID. Although individual parent characteristics and high‐quality dyadic relationships contribute to emerging resilience in parents of children with ID, parents also affect each others' more resilient adaptations in ways that have not been previously considered.     

A follow-up study of mortality, health conditions and associated disabilities of people with intellectual disabilities in a Swedish county

Background In the planning of services and health care for individuals with intellectual disability (ID), information is needed on the special requirements for habilitation and medical service and associated disabilities. Material and methods An unselected consecutive series of 82 adult persons with ID was studied. The medical examination consisted of the individual's health condition, associated impairments and disabilities. Medical and habilitation services and support were studied. Results The results indicated that 71% of the persons in the series had severe and 29% mild ID. Forty-seven per cent of the persons with severe ID and 35% of those with mild ID had one or more additional central nervous system (CNS) disabilities. Of the persons with ID, 99% had access to a family doctor and 84% attended regular health visits. Notably, half of persons were referred to a specialist examination as a consequence of their present medical examination. Half of the persons with mental health problems were previously undiagnosed and only a few of these had access to a psychiatrist. Conclusion Our study clearly demonstrates the magnitude and importance of neurological and psychiatric impairments in ID. The findings suggest a strong need for multidisciplinary health service.     

Profiles and correlates of aggressive behaviour among adults with intellectual disabilities

Background Despite the heterogeneity in aggressive behaviours observed among individuals with intellectual disabilities (ID), little attention has been paid to the identification of typologies of aggression among individuals with mild or moderate ID and their associated factors. Objective The goal of the present study was to identify profiles of aggressive behaviour and their psychosocial correlates. Method In this cross‐sectional study of 296 adults with mild or moderate ID, information was gathered through interviews with the ID participants, their case manager and a significant other. Client files were also reviewed. Results Multiple correspondence analysis followed by hierarchical cluster analysis generated six distinct profiles of aggressive behaviour in this sample. The ‘violent’ group clearly stood out as lacking social and vocational involvement, having more severe mental health problems, high levels of impulsivity and antisocial tendencies compared with all other groups. Discussion The identification of distinct profiles of aggressive behaviour offers new possibilities for studying risk factors and eventually targeting specific risk prevention strategies.     

Healthcare needs of people with intellectual disability in institutions in Taiwan: outpatient care utilization and implications

Background The present study assessed the outpatient care use of people with intellectual disability (ID) in order to identify patterns of healthcare needs and the factors affecting this utilization. Methods The primary method used in this study was a cross‐sectional survey of 1390 subjects with ID in Taiwan. Data were obtained from questionnaires completed at 30 registered institutions caring for people with ID. Results The findings show that people with ID in Taiwan are likely to make more outpatient visits per year than members of the general population. The prevalence of illness in people with ID was 41%, with epilepsy being the most frequently reported disease. A total of 39.5% of individuals with ID took medicine regularly, and 38.9% had used alternative forms of medication besides Western medicine. In terms of the use of outpatient facilities by people with ID, paediatric clinics were the most frequently utilized. The average monthly number of outpatient visits per person with ID was 2.18 (around 26 visits per year). This study found that the need for outpatient care is determined by a variety of factors relating to: the age of people with ID, the type of handicap, the place of medical treatment, having a family physician, the accessibility of medical care, the time‐consuming nature of the medical visits, having an illness, ID accompanied with other disabilities, and finally, a need for rehabilitative care. Conclusions From the examination of the expressed needs of people with ID, it was found that these individuals have a heightened need for healthcare and the treatment of special diseases/disorders in comparison to members of the general population in Taiwan. Within the context of ordinary services, it is particularly important to have a precise view of the ways in which the health needs of people with ID are different from the general population as a whole. This will enable healthcare services to respond to these needs, either through support systems within generic care or, in some cases, through the delivery of specific healthcare through specialized services which are kept separate from generic care.     

Learning Disability Liaison Nursing Services in south‐east Scotland: a mixed‐methods impact and outcome study

Background There have been significant concerns about the care and treatment of people with intellectual disabilities (ID) when attending general hospitals, which have led to inquiries that highlight service and systems failures. One response has been the development of Learning Disability Liaison Nursing (LDLN) Services across the UK that aim to ensure that additional, specialist support is available for patients, their carers and general healthcare professionals. Methods A mixed‐methods study to investigate the impact of LDLN Services across four Scottish NHS boards was undertaken. In total, 323 referrals made over 18 months were analysed along with qualitative data drawn from interviews and focus groups with a sample of 85 participants including patients with ID (n = 5), carers (n = 16), primary care healthcare professionals (n = 39) and general hospital professionals (n = 19) and learning disability liaison nurses (n = 6). Results The referral patterns to the four liaison nursing services closely matched the known health needs of adults with ID, with common admissions being due to neurological, respiratory and gastrointestinal issues. The LDLN role was seen to be complex and impacted on three key areas: (i) clinical patient care; (ii) education and practice development; and (iii) strategic organisational developments. Specific patient outcomes were linked to issues relating to capacity and consent to treatment, fostering person‐centred adjustments to care, augmenting communication and the liaison nurses acting as positive role models and ambassadors for people with ID. Conclusions The LDLN Services were valued by stakeholders by achieving person‐centred outcomes. With their expert knowledge and skills, the liaison nurses had an important role in developing effective systems and processes within general hospital settings. The outcomes highlight the importance of supporting and promoting LDLN Services and the challenges in delivering the multifaceted elements of the role. There is a need to take account of the complex and multidimensional nature of the LDLN role and the possible tensions between achieving clinical outcomes, education and practice developments and organisational strategic initiatives.