Family carers' experiences of providing care for their adult relative with intellectual disabilities and mental health problems in Singapore.

BACKGROUND: Families in Singapore are primarily involved in the care of their relatives with intellectual disabilities and the study aimed to explore their experiences taking care of their relatives with intellectual disabilities and mental health problems. METHOD: Nine unpaid family carers were interviewed. The interviews were analysed using Interpretative Phenomenological Analysis. RESULTS: Analysis revealed four themes 1) Making sense of behaviours; 2) Staff are the experts; 3) Public reaction and 4) Worries and hopes for the future. CONCLUSIONS: Family carers found it difficult to identify and manage the mental health symptoms of their relatives and sought help from specialist mental health professionals. They were satisfied with the specialist services and found psychotropic medication helpful to reduce the symptoms. Family carers expressed worries about their relative not being accepted by the public and did not make future care plans. More resources are needed to increase accessibility of specialist mental health services for people with intellectual disabilities. It is recommended for service providers to collaborate with family carers and provide them with resources and skills to empower them to care for their relatives with intellectual disabilities.

Experiences of mental health professionals providing services to adults with intellectual disabilities and mental health problems: A systematic review and meta-synthesis of qualitative research studies.

BACKGROUND: Mental health professionals play an important role in providing care and treatment for adults with intellectual disabilities. A number of studies use qualitative methods to explore the experiences of these professionals and their perspectives regarding the mental health services for this population. A systematic review using meta-ethnographic approach was undertaken to summarise this research. METHOD: A systematic search found 14 relevant studies which were critically appraised. Key themes from these studies were extracted and synthesised. RESULTS: Three main themes were identified: 1) Understanding the person, 2) Relational interaction and 3) Organisational factors. CONCLUSIONS: The findings of this review identified the issues mental health professionals raised in relation to their work. They described the complex presenting problems as intense yet fulfilling therapeutic relationships with their clients and their wish to improve their knowledge and skills. They identified organisational issues that need to be addressed to improve staff morale and efficiency.

Services for people with intellectual disabilities and mental health problems in Singapore: perspectives from mainstream mental health professionals.

Background: Generic mental health staff often have contact with people with intellectual disabilities when they access mainstream mental health services. To date, there has not been any research conducted in non-western countries to explore their views. This paper investigates the views and experiences of mainstream mental health professionals regarding the mental health services for people with intellectual disabilities in Singapore. Methods: Eight staff members from generic mental health services were interviewed. Thematic analysis was used to identify main themes. Findings: The main themes are related to their work experiences, perceptions of people with intellectual disabilities, ideal staff characteristics and service recommendations. Conclusions: Participants identified a lack of experience and knowledge when working with this population. They highlighted the challenges they face promoting choice and autonomy for people with intellectual disabilities. The discussion includes recommendations for improving staff knowledge through training opportunities, consideration of non-pharmacological approaches and early collaboration with caregivers during the treatment process.

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period.

BACKGROUND: Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. AIM: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. METHODS: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. RESULTS: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. CONCLUSIONS: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities.

INTRODUCTION: The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. METHOD: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. RESULTS: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2-3 times greater than reported in earlier pre-pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. CONCLUSIONS: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.

Eye movement desensitization and reprocessing for adults with intellectual disabilities: Process issues from an acceptability study.

BACKGROUND: Eye movement desensitization and reprocessing (EMDR) is recommended for post-traumatic stress disorder and emerging evidence indicates that it is effective for people with intellectual disabilities. However, acceptability from the perspectives of clients with intellectual disabilities, their therapists and other key people has not been formally evaluated. This study investigates process issues in the implementation of EMDR from perspectives of multiple stakeholders. METHOD: Semi-structured interviews were conducted with two adults with intellectual disabilities and three clinical psychologists who had participated in EMDR as well as a key supporter (N = 6) to provide information relating to three cases. The interviews were analysed thematically either directly from the audio recording or from transcripts. RESULTS: Five themes were identified: EMDR feels very different; EMDR is a technical process; the need to work with the present; talking is important; cautious optimism. CONCLUSIONS: Whilst a range of client- and therapist-related factors served as barriers to using EMDR in this small-scale study, such as preferences in working with the present and inexperienced therapists, there was cautious optimism that EMDR may be useful for "the right person at the right time.".

Teaching young adults with intellectual disabilities about early parent-child attachment behaviors using an educational DVD.

Background: Previous research has largely focused on evaluating the impact of teaching practical parenting skills to parents with intellectual disabilities. Teaching them about the importance and nature of early attachment behaviors has not yet been explored. This study investigates whether knowledge of early attachment behavior of young adults with an intellectual disability who are not yet parents, can be increased using an educational DVD. Method: A sample of students with intellectual disabilities (N = 25) were asked to complete the 'parent-child questionnaire' at three stages: pre-intervention, post-intervention, and two to three week follow-up. The questions that make up this questionnaire relate to early attachment behaviors. Results: Statistical analyses show that there was a statistically significant increase in knowledge of attachment behavior following the intervention (t(24) = -3.48, p < 0.05) and this increase was maintained at follow-up (t(24) = -3.27, p < 0.05). Increase in knowledge was not significantly associated with any of the demographic factors (gender, age, intelligence quotient, main carer, number of siblings, family history of intellectual disabilities, and previous teaching on childcare). Conclusion: It is concluded that the use of an educational DVD is an effective way of teaching young adults with an intellectual disability about early attachment behaviors between parents and young babies.

Women's recovery from anorexia nervosa: a systematic review and meta-synthesis of qualitative research.

Anorexia nervosa (AN) is a complex and challenging condition and recovery can be a slow and difficult process. Predicting factors remain largely unknown. This paper aims to systematically review qualitative studies which have investigated female service users' experiences of recovering from AN and carry out a meta-synthesis of the themes they identified. Meta-ethnography was used to select and synthesize the studies. Articles published between 2002 and 2017 were searched in PsycInfo, EMBASE, CINAHL and Medline. Studies were included if they explored recovery from AN using a qualitative methodology. The methodological quality of the studies was systematically and critically appraised. Fourteen studies were selected for inclusion. Common themes reported by participants describe the process of recovery from AN as dealing with a fragmented sense of self, a turning point where insight and commitment to recovery is developed, and, in recovery, a reclamation of self through meaningful relationships, rebuilding identity and self-acceptance. Recovery from AN is experienced as a complex psychological process with many contributing factors. Findings highlight the need to reconsider clinical practice and treatment provision to incorporate the psychological components of self-identity into recovery programs.

How do psychologists experience working with staff in residential care settings for people with an intellectual disability?

BACKGROUND: While psychologists working with people with an intellectual disability routinely work with care staff in residential care homes there is a lack of research investigating how psychologists can effectively assess, collaborate, and engage with staff groups. AIMS: This research seeks to explore psychologists' experiences of working with staff in residential care homes in order to develop an understanding of how psychologists manage the work and to help generate clinical solutions to psychological problems. METHODS: Seven clinical psychologists and one counseling psychologist were interviewed using a semi-structured interview focusing on participants' interactions with staff. Interviews were transcribed and analyzed using Interpretative Phenomenological Analysis. FINDINGS: Themes common across participants included 'development and maintenance of a therapeutic relationship,' 'theory and emotion,' 'perceived restrictions,' 'safety,' 'developing an identity as a psychologist,' 'support and shared experiences,' 'motivation,' and 'conflict and the roles of a psychologist.' CONCLUSIONS: Participants experienced several barriers to carrying out effective psychological work with staff in residential care homes. The various ways they have sought to address these are discussed. A preliminary model is proposed to describe what is needed for psychologists to be effective when working with staff in residential care homes.

Cultural affordance, social relationships, and narratives of independence: Understanding the meaning of social care for adults with intellectual disabilities from minority ethnic groups in the UK.

Objectives: To explore the perspective of adults with intellectual disabilities from minority ethnic groups, on their relationship with social care services. Methods: Thirty-two adults took part in semi-structured interviews. Transcripts were analyzed within a Pluralist framework, adopting the structure of Template Analysis and then drawing on phenomenological, narrative, and discursive approaches. Results: Our participants were generally positive about the services which they received, which they evaluated primarily in terms of their continuing good relationship(s) with specific workers. Our respondents were sophisticated users of cultural resources and identities; the concept of 'cultural affordance' may be useful alternative to 'cultural competence'. We discuss three distinctive narratives about independence (Stability; Progress; Resistance). Each highlights the importance of maintaining connectedness to others, and the crucial role played by ownership of decision-making. Conclusions: We have developed a set of resources which service providers (and researchers) can use with people with intellectual disabilities, in order to support mutual understanding, service planning and delivery.

Can adults with Asperger's syndrome learn about positive attachment behaviors between parents and young babies through the use of a skill-training DVD?

OBJECTIVES: To explore how much people with Asperger's syndrome know and understand about early attachment behaviors and whether this knowledge can be increased through a DVD. METHODS: Adults with Asperger's syndrome who were not parents (N = 28) took part in four experimental conditions: Baseline, pre-intervention, post-intervention, and follow-up. Participants watched a DVD and received a booklet summarizing its contents. Participants were asked seven questions about attachment in all four conditions. Measures of trait emotional intelligence, IQ and autistic symptomatology were explored as possible predicting factors. RESULTS: A significant increase in knowledge of early attachment behaviors was observed at post-intervention for the total knowledge score and four out of the seven attachment questions. This was maintained at follow-up. Trait emotional intelligence, IQ and autistic symptomology did not predict pre-intervention or increase in knowledge. CONCLUSIONS: Knowledge and understanding of early attachment behaviors can be improved through the use of a DVD.

Midwives׳ experiences of caring for women with learning disabilities - A qualitative study.

BACKGROUND AND OBJECTIVE: people with learning disabilities (LD) are increasingly likely to become parents and are entitled to have access to the right support to be able to be suitable parents. However, access to such support is affected by limited resources, attitudes towards people with LD becoming parents, and lack of training regarding caring for parents with learning disabilities for midwives. A learning disability (LD) is defined as a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), reduced skills to cope independently with everyday life, has an impact on most areas of a person's life and the difficulties started in early childhood. Little research has explored health professionals' experiences of their support of people with LD during their journey to become parents. Midwives are often the first professionals pregnant women come into contact with and therefore are key professionals in the support system for parents with LD. The principle objective of the current research is to develop an understanding of midwives' experiences of caring for women with a LD. DESIGN: the study explored midwives׳ experiences of caring for women with LD using an Interpretative Phenomenological Approach (IPA). PARTICIPANTS: nine qualified midwives employed by a single NHS trust participated in the study. MEASUREMENTS AND FINDINGS: a semi-structured interview schedule was utilised during one-to-one interviews with the midwives. The interview transcripts were analysed using IPA stages. Four superordinate themes were identified. KEY CONCLUSIONS: The midwives reported receiving a lack of LD training and faced significant time constraints, which left them feeling that they could not spend the necessary time with the women to meet their pregnancy needs. The midwives felt unsupported in their attempts to deliver adequate midwifery care, speaking about a lack of accessible support for pregnant women with LD. They were left feeling responsible to fill the gaps in service provision. The midwives were dedicated in delivering adequate care to help give women with LD a positive experience of childbearing. They felt a safeguarding process (child protection) was an inevitable part of women with LD's pregnancy experience yet were aware that the right support at the right time could improve parenting capacity. IMPLICATIONS FOR PRACTICE: it is recommended that training on working with and providing services for people with LD is made available to qualified and student midwives as well as accessible resources, professional support and supervision.

How Do Women with an Intellectual Disability Experience the Support of a Doula During Their Pregnancy, Childbirth and After the Birth of Their Child?

BACKGROUND: With increasing numbers of people with an intellectual disability choosing to become parents, the right support is imperative for effective parenting (Macintyre & Stewart ). The aim of this study was to gain insight into the experiences of parents who received support from Doulas during pregnancy, birth and following the birth of their child. In addition, the experiences of the Doulas who provided the support were investigated. MATERIALS AND METHODS: Four women with an intellectual disability who received Doula support were interviewed before and after the birth of their child. Three Doulas were interviewed after the birth about their experiences of supporting women with an intellectual disability. RESULTS: Interview transcripts were analysed using Interpretive Phenomenological Analysis (IPA). Themes were identified from each interview, before an overall analysis of themes from each support phase was undertaken. CONCLUSIONS: Pre-natally, the Doula was considered helpful and a reliable source of information about pregnancy. Each mother perceived Doula support as a means of keeping her child in her care. Post-natally, mothers described a trusting relationship with their Doula, who enabled them to make informed choices. Doulas described how they adapted their work to meet the needs of parents with intellectual disability. Being involved in Child Protection procedures was perceived as stressful and challenging.

Staff expectations and views of cognitive behaviour therapy (CBT) for adults with intellectual disabilities.

BACKGROUND: The role of support workers and other professionals in the psychotherapeutic process has been commented upon but not as yet been systematically investigated. METHOD: To explore their views and expectations of cognitive behaviour therapy (CBT) for adults with intellectual disabilities, eleven paid support workers and professionals were recruited and interviewed before the CBT sessions commenced for their service users and nine took part in the second interview that took place after nine sessions. RESULTS: Thematic Analysis of the interview transcripts indicates that staff members do not perceive CBT as a long-term solution for psychological problems have little knowledge of CBT and do not feel included in the process. Nevertheless, after nine sessions, most participants reported improved psychological well-being for their service users and expressed a wish for longer-term involvement of the therapist. CONCLUSIONS: The results suggest that for CBT to be effective in the longer term, the therapist is required to consider a wider systemic approach including staff training and supervision, staff and management consultancy and creating a delicate balance between confidentiality and sharing the psychological formulation with 'significant others' to ensure maintenance and generalisation of improved psychological well-being.

Different factors influence self-reports and third-party reports of anger by adults with intellectual disabilities.

BACKGROUND: Many people with intellectual disabilities display high levels of anger, and cognitive-behavioural anger management interventions are used routinely. However, for these methods to be used optimally, a better understanding is needed of different forms of anger assessment. The aim of this study was to investigate the relationship of a range of measures to self- and carer reports of anger expression, including instruments used to assess mental health and challenging behaviour. METHOD: Adults with intellectual disabilities, who had been identified as having problems with anger control, their key-workers and home carers all rated the service users' trait anger, using parallel versions of the same instrument (the Provocation Inventory). In addition, service users completed a battery of mental health assessments (the Glasgow Depression Scale, Glasgow Anxiety Scale and Rosenberg Self-Esteem Scale), and both groups of carers completed a battery of challenging behaviour measures (the Hyperactivity and Irritability domains of the Aberrant Behavior Checklist and the Modified Overt Anger Scale). RESULTS: Participants had high levels of mental health problems (depression: 34%; anxiety: 73%) and severe challenging behaviour (26%). Hierarchical linear regression analysis was used to explore the extent to which anger ratings by the three groups of respondents were predicted by demographic factors, mental health measures and challenging behaviour measures. Older service users rated themselves as less angry and were also rated as less angry by home carers, but not by key-workers. More intellectually able service users were rated as more angry by both sets of carers, but not by the service users themselves. Significantly, mental health status (but not challenging behaviour) predicted service users' self-ratings of anger, whereas challenging behaviour (but not mental health status) predicted carers' ratings of service users' anger. CONCLUSIONS: Service users and their carers appear to use different information when rating the service users' anger. Service users' self-ratings reflect their internal emotional state and mental health, as reflected by their ratings of anxiety and depression, whereas staff rate service users' anger on the basis of overt behaviours, as measured by challenging behaviour scales.

Anger management for people with mild to moderate learning disabilities: study protocol for a multi-centre cluster randomized controlled trial of a manualized intervention delivered by day-service staff.

BACKGROUND: Cognitive behaviour therapy (CBT) is the treatment of choice for common mental health problems, but this approach has only recently been adapted for people with learning disabilities, and there is a limited evidence base for the use of CBT with this client group. Anger treatment is the one area where there exists a reasonable number of small controlled trials. This study will evaluate the effectiveness of a manualized 12-week CBT intervention for anger. The intervention will be delivered by staff working in the day services that the participants attend, following training to act as 'lay therapists' by a Clinical Psychologist, who will also provide supervision. METHODS/DESIGN: This is a multi-centre cluster randomized controlled trial of a group intervention versus a 'support as usual' waiting-list control group, with randomization at the level of the group. Outcomes will be assessed at the end of the intervention and again 6-months later. After completion of the 6-month follow-up assessments, the intervention will also be delivered to the waiting-list groups. The study will include a range of anger/aggression and mental health measures, some of which will be completed by service users and also by their day service key-workers and by home carers. Qualitative data will be collected to assess the impact of the intervention on participants, lay therapists, and services, and the study will also include a service-utilization cost and consequences analysis. DISCUSSION: This will be the first trial to investigate formally how effectively staff working in services providing day activities for people with learning disabilities are able to use a therapy manual to deliver a CBT based anger management intervention, following brief training by a Clinical Psychologist. The demonstration that service staff can successfully deliver anger management to people with learning disabilities, by widening the pool of potential therapists, would have very significant benefits in relation to the current policy of improving access to psychological therapies, in addition to addressing more effectively an important and often unmet need of this vulnerable client group. The economic analysis will identify the direct and indirect costs (and/or savings) of the intervention and consider these in relation to the range of observed effects. The qualitative analyses will enhance the interpretation of the quantitative data, and if the study shows positive results, will inform the roll-out of the intervention to the wider community. TRIAL REGISTRATION: ISRCTN: ISRCTN37509773.

The balance of power in therapeutic interactions with individuals who have intellectual disabilities.

OBJECTIVES: Establishing a collaborative relationship is a cornerstone of cognitive behavioural therapy (CBT). Increasingly CBT is being offered to people with intellectual disabilities who may have problems with receptive and expressive communication, and a history of disadvantage or discrimination in their relationships with those in positions of power. Consequently, they may have difficulty establishing a collaborative interaction with their therapist. This paper uses a novel method of interactional analysis to examine if collaboration increases as therapy progresses. DESIGN AND METHODS: Fifteen participants with borderline to mild intellectual disabilities and significant problems of depression, anxiety and anger were recruited from specialist clinical services to participate in this study. Verbatim transcripts of therapy sessions 4 and 9 were coded using an initiative-response method of analysing power distribution in dialogue, to investigate collaboration at the level of therapeutic interaction. RESULTS: The initiative-response scores indicated that power was relatively equally distributed between clients and therapists. On this measure there was no significant increase in collaboration as therapy progressed, as the dialogues were relatively equal from session 4. Analyses of the pattern of interaction showed that whilst the therapists asked most questions, the clients contributed to the flow of the analysis and played an active part in dialogues. CONCLUSIONS: The implications of these findings are discussed, along with the possible uses of such interactional analyses in identifying barriers to communication and ways of establishing effective therapeutic dialogue.

Service users and staff from secure intellectual disability settings: views on three physical restraint procedures.

The appropriateness of and justification for physical restraint procedures in intellectual disabilities settings is an emotive issue. It creates a number of ethical dilemmas for nursing staff. This article examines the views of service users and nursing staff from secure residential facilities where restraint is used frequently. Both groups were asked to rate three videotaped restraint procedures for their acceptability. There were no significant differences between the two groups in the acceptability ratings of the methods of restraint. Service users were then interviewed about their restraint experiences. They reported feeling very angry, sad, stressed and confused and not at all happy or relaxed when being restrained. Scores indicated that participants were significantly happier and less stressed after restraint than during restraint.