Invisible Children: Young Carers of Parents with Mental Health Problems ‐ The Perspectives of Professionals

This study explored professional views about the needs of young carers of adults with mental health problems. Sixty five participants were interviewed and included professionals from the health, social care and voluntary sectors. Respondents were asked to comment on their understanding of the needs of young carers and appropriate methods or interventions to address these needs. Findings include: young carers'perceived isolation, restricted opportunities and stigma; fears involving child protection and family separation; and examples of good professional practice upon which to build.     

Family carers' perspectives on post‐school transition of young people with intellectual disabilities with special reference to ethnicity

Background School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks. Method The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty‐three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi‐structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition. Results The findings indicate that although transition planning occurred it was relatively later in the young person's school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion. Conclusions The majority of families lacked knowledge and awareness of formal services and the transition process. Socio‐economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion and assumptions by service providers.     

Psychological treatment of reported sleep disorder in adults with intellectual disability using a multiple baseline design

Background The literature on sleep disturbance in adults with intellectual disability (ID) is sparse. Although prevalence rates for sleep disorders appear similar to those of non‐disabled populations, previous treatment studies have largely been comprised of uncontrolled cases. Therefore, the present study adopted a single‐case experimental methodology to evaluate behavioural sleep intervention. Methods A screening questionnaire was posted to 384 adults with ID and the sleep pattern of respondents with possible sleep disorders was further assessed using a structured diagnostic schedule. From the sleep‐disordered subgroup, 12 participants were selected for a 4‐week behavioural sleep intervention that was evaluated using randomly allocated, multiple‐baseline, across‐subjects designs and within‐subject interrupted time series analyses (ITSAs). Results A total of 155 adults with ID (83 females and 72 males; mean age = 32 years, SD = 16.5 years), or their carers, completed the questionnaire (return rate = 40%). The application of sleep diagnostic criteria revealed that 17% had clinically significant difficulty getting to sleep and 11% had difficulty remaining asleep. Nine out of the 12 participants recruited for the intervention completed all the experimental phases, thus providing three sets of three multiple‐baseline designs. Visual inspection of within‐ and between‐subject effects suggested beneficial treatment‐specific effects across a range of target variables. The ITSA confirmed significant effects (P < 0.05) or trends (P < 0.10) for six out of the nine participants. Conclusions Behavioural sleep management may improve sleep pattern or sleep‐related functioning in the majority of adults with ID who have significant sleep problems. The single‐case methodology is helpful in addressing the heterogeneity of individual presentation, although clinical trial methodology is required to confirm these findings on a larger scale.     

Social goals and conflict strategies of individuals with mild to moderate intellectual disabilities who present problems of aggression

Background A few recent studies have adopted a social cognitive perspective to explore how individuals with intellectual disabilities (IDs), who present problems of aggression, view their social world. The focus has mainly been on participants' perceptions of others' behaviour within conflict situations. The present exploratory study aims to compliment existing research by exploring social cognitive factors that may influence how individuals respond to conflict. Methods Study was carried out with 20 aggressive and 20 non‐aggressive men and women who have a mild to moderate ID. The ‘Social Goals and Strategies for Conflict’ (SGASC) assessment was devised to explore whether group or gender differences could be found in participants' expected outcomes of aggressive strategies, their expected outcomes of submissive strategies and their emotional reaction to these outcomes. Participants' social goals within hypothetical situations of conflict were also explored. Results It was found that aggressive and non‐aggressive participants have different social goals. There were no significant differences for expected outcomes of aggression or submissiveness. Nevertheless, a number of trends suggest that more aggressive participants expect negative outcomes for submissiveness compared with their non‐aggressive peers. Conclusions While the findings of this study are tentative, investigating the social outcomes that are valued by individuals with ID who present problems of aggression appears to be a promising area for further research, with possible implications for clinical assessment and treatment.     

The impact of caring for adults with intellectual disability on the quality of life of parents

Background Because of an increase in life expectancy and de‐institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on the QOL of parents. Methods Participants were 12 parents who were the full‐time carers of an adult with ID. Participants were interviewed about the effect of caring on their QOL. Interviews were analysed thematically. Results Caring had a positive impact on QOL by enabling participants to develop relationships and receive support, participate in leisure activities, achieve a sense of personal satisfaction and enable a more positive appraisal of their lives. Caring had a negative impact on participants' QOL by restricting their relationships, leisure activities and employment opportunities. Caring was also associated with financial insecurity, frustrations at the service system and fear of what the future held for their offspring. Conclusions Caring for an adult with ID had both positive and negative effects on parents' QOL. Improving services and service delivery, including the provision of residential services and respite, would address many of the issues that were reported to have a negative impact on parents' QOL.     

Assessing carers' training needs: A pilot inquiry

This paper describes a study to assess the needs for training of family carers of people with dementia, as part of an EU project to develop a training package for carers. Although there is a great deal published about the stresses and burden of caring, there is an absence of tools for the assessment of needs for training. Focus groups of carers and professionals were used to identify the areas to be explored in semi-structured interviews with carers.Thirty additional carers were interviewed. All met the Carers' (Recognition and Services) Act definition of providing 'regular and substantial' care to their relative and the demographic characteristics of the sample were typical of those of national samples of 'informal carers'. Two-thirds of carers were willing to attend groups. All carers wanted information about dementia.The topics rated most highly after that were those about how to get help and the best way to interact with services. Carers also wanted specific information about managing their relative's dementia: memory aids, difficult behaviour and, to a lesser extent, managing risk and communication. Information about practical aspects of caring were rated more highly by the carers willing to attend groups. Coping with stress, loss and the carers' own emotions were also deemed important. Carers willing to attend groups said that they would read material and complete homework tasks.     

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Objectives: Mental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems.

Method: The Pathways Interview Schedule was used to facilitate 9 in-depth care journey interviews with 11 carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services. Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers.

Results: Carers had a significant role in navigating services and operationalising care for their relative. Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws.

Conclusion: Carers should be considered key partners in mental health care planning that crosses service sectors. For this to occur, changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.     

Effect of perceived stigmatisation on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness

Background   Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers' QoL between family carers of adults with ID and family carers of adults with MI and aim to examine the effect of these differences in stigma on carer QoL between the two groups.
Methods   A structural survey interview was administered to 350 female family carers supporting persons with ID and 66 female carers supporting persons with MI; the carers were aged 55 years and older, and the interviews were carried between July 2006 and April 2007 at the carers' homes in a county in Taiwan. The survey package contained standardised scales to measure the carer's stigma, social support, QoL and health as well as adult and carer socio-demographic data.
Results   The results highlight that in both groups the ageing female family carers' health and social support were strongly associated with the level of their QoL even though there was also a strong effect of carers' perceived stigma on their QoL. Contrary to previous findings, ageing female family carers of adults with MI had a higher level of QoL compared with the carers of adults with ID. Hierarchical regressions show a stronger effect of perceived stigma on the carer QoL among the family carers of adults with MI than among the carers of adults with ID.
Conclusions   This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position.     

Understanding the experiences and service needs of siblings of individuals with first-episode psychosis: a phenomenological study

Background: Despite recent focus on developing family‐inclusive services to meet the needs of young people with first‐episode psychosis, the needs of their siblings are often overlooked. Aims: This study explored the experiences and needs of siblings of young adults with first‐episode psychosis receiving support from two Early Intervention in Psychosis Services in South‐East England. Methods: Thirty‐one siblings aged 11–35 years, were given a semi‐structured interview to gather their perspectives and accounts of their lived experiences. The resultant rich qualitative data was analysed using responsive‐reader and framework methods. Results: Six themes were identified: siblings' roles and involvement; emotions; impact on relationships; coping patterns; resilience; and siblings' service needs. Conclusion: All participants had been greatly affected by the onset of the psychosis in their brother or sister. Most siblings did not identify themselves as carers, although most played a significant part in their brother's or sister's life. Participants wanted dynamic, robust and accessible services, especially information and peer support to meet their needs.     

Family carers' experiences of the Admiral Nursing Service: a quantitative analysis of carer feedback

Objectives: Family carers of people with dementia often experience difficulty in accessing information, services and adequate support. Admiral Nurses, registered nurses specialising in dementia, provide holistic and person-centred support to families living with dementia. This study assessed the effectiveness of the Admiral Nurses' approach from the perspective of family carers who had accessed their service.

Method: A questionnaire was developed with input from family carers and Admiral Nurses and questions were based around the Admiral Nursing Standards. 685 questionnaires were sent out in total to carers in receipt of care from three different regions in England.

Results: 207 questionnaires (30.2% response rate) were analysed. Admiral Nurses' knowledge and skills and their interventions were found helpful by 81.5% and 82.6% of respondents, respectively (mean values). Respondents also rated them effective in developing rapport (96.5%, mean value) and recognising and supporting the needs of the dyad (85.8%, mean value). More varied views were expressed in relation to activities and stimulation for the person with dementia, and to advice around medications and their effects, with around a third (n = 57, 31% and n = 63, 33.9%, respectively) of respondents finding Admiral Nurses not helpful, whilst 24.6% (n = 46) thought so in relation to care coordination. A higher number of contacts with Admiral Nurses (5+) and carer gender (female) were significant predictors of carers' satisfaction.

Conclusion: Whilst some aspects of supporting carers are performed less well from the carers' perspective, overall family carers in receipt of Admiral Nursing support perceived their family-centred approach as helpful/effective.     

Institutionalization risk amongst people with dementia supported by family carers in a Scottish city

We studied 114 community-resident demented older people living at home with the support of a family carer and a matched sample of 114 non-demented older people to determine the factors predictive of institutionalization. We interviewed elders and carers for presence and severity of dementia, characteristics of elder and carer, service use, and carers' perceptions of needs and attitudes to care. Subjects were followed up over a 2-year period. Eleven demented and 10 non-demented elders were lost to follow-up. Forty-nine of 103 demented and 7 of 104 non-demented elders were institutionalized. Demented elders were 8.21 times more likely to be institutionalized than non-demented elders, adjusting for age and sex (95% CI 3.69-18.23). Using Cox's Proportional Hazards Model, factors which predicted institutionalization amongst demented elders were: Mini Mental State Examination Score (RR 0.87, 95% CI 0.80-0.96), carers' perceived problems in relation to the elders' physical disabilities (need for 1-3 hours per week vs no need, RR 6.10, 95% CI 2.34-15.89), behavioural problem score (7-13 vs 6, RR 5.67, 95% CI 1.47-21.88) and carers' willingness to continue caring (willing vs totally willing RR 4.46, 95% CI 1.41-14.10). Our study confirms the high risk of institutionalization amongst demented older people. Early institutionalization of demented elders can be predicted and should be planned for, to help elders and carers cope with the process of adjustment. Where carers are totally committed to continuing care, intensive community support may be required for problems associated with advanced dementia.     

Recruitment to intellectual disability research: a qualitative study

Background Difficulties in the recruitment of adults with intellectual disability (ID) to research studies are well described but little studied. The aim of this study was to investigate the difficulties in recruiting to a specific research project, in order to inform future recruitment to ID research. Methods Individual semi‐structured interviews were held between September 2009 and May 2010 with people who had been involved as intermediaries in recruitment to the research project. These were transcribed verbatim and were independently analysed by two researchers using the Framework approach, who then agreed upon the key emerging themes. Results Ten interviews were analysed. A number of themes arose, including participant factors (interview anxiety, difficulties in understanding the concept of research, worry about negative feedback), the importance of the researcher (using a personal approach, meeting potential participants prior to recruitment) and motivators [enjoyment of the research interview (participant), obtaining a medical assessment (carer)]. The themes were then used to generate strategies to improve recruitment to ID research: these include the research team applying a more personal approach, developing the recruitment process to allow for multiple meetings with potential participants, and considering motivators for both participants and carers. Conclusions This study has used the experiences of intermediaries to identify strategies for improving recruitment to future ID research. This has implications in terms of both time and money. However, successful recruitment is essential to ID research, and we hope that the study will be used by ID researchers to review and improve their recruitment processes.     

Mental disorder in adults with intellectual disability. 1: Prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years

The reported prevalence of psychiatric illness among adults with intellectual disability (ID) varies widely between 10 and 39%; however, many methodological problems exist. The aims of the present study were to establish the prevalence of functional psychiatric illness among adults with ID who live in the community, in order to compare the overall rate and types of psychiatric illness between the population with ID and the general population without ID, and to establish the risk factors associated with psychiatric illness in adults with ID. The study was done in two stages. In the first part, a trained psychiatrist interviewed 101 randomly selected adults with ID and their carers using the Mini Psychiatric Assessment Schedule for adults with Developmental Disability (Mini PAS‐ADD) to screen for psychiatric caseness. Out of these 101 adults, 90 had sufficient communicative abilities that made the administration of Mini PAS‐ADD possible. A second trained psychiatrist interviewed 19 out of the 20 adults who were diagnosed as psychiatric cases according to the initial Mini PAS‐ADD interview. This psychiatrist interviewed patients and their carers in line with the full PAS‐ADD interview. The second psychiatrist was blind to the initial diagnoses made according to the Mini PAS‐ADD questionnaire. A final psychiatric diagnosis was made according to International Classification of Diseases – 10^th Revision (ICD‐10) criteria. Some 14.4% (95% confidence interval = 7.4–21.4%) of the cohort had a psychiatric diagnosis according to ICD‐10 criteria: 4.4% had schizophrenia, 2.2% depressive disorder, 2.2% generalized anxiety disorder, 4.4% phobic disorder and 1% delusional disorder. The overall rate of functional psychiatric illness (point prevalence) was similar to that found in the general population (16%). However, the rates of schizophrenic illness and phobic disorder were significantly higher in the study cohort compared with those in the general population (0.4% and 1.1%, respectively). Increasing age and the presence of physical disability were significantly associated with the occurrence of psychiatric illness. Out of the 11 remaining adults with severe ID, two (18%) had a diagnosis of a psychiatric illness (one mania and one anxiety disorder) according to the Diagnostic Assessment for the Severely Handicapped (DASH) questionnaire.     

Facilitators and barriers affecting sexual desire in elderly Iranian women: a qualitative study

ABSTRACT

Elderly people are very common perceived as asexual but some studies have reported some variations. However, very little research has been done to determine the facilitators and barriers that affect sexuality, especially in relation to elderly women. This study was undertaken to explore perceptions of sexuality among a selection of married older women in Iran in terms of facilitators and barriers. Accordingly, a study was done on 27 married women, older than 60 years. Qualitative content analysis was used to identify four distinct subthemes that served as facilitators of sexual desire. These were determined as life satisfaction, favourable outcome, spouse's characteristics, and a sense of duty. Four other subthemes were determined as barriers to sexual desire; namely physical weakness, evolving emotions, a sense of taboo, and a sense of insecurity. All these variables appeared rooted in religious teachings, social stereotypes, or cultural traditions that constituted women's perceptions of themselves as elderly married women. Further study is recommended on elderly people that includes participants of both sexes and with different marital statuses.     

Identifying facilitators and barriers to physical activity for adults with Down syndrome

Background Adults with Down syndrome are typically sedentary, and many do not participate in the recommended levels of physical activity per week. The aim of this study was to identify the facilitators and barriers to physical activity for this group. Method Semi‐structured interviews were conducted to elicit the views of adults with Down syndrome and their support people about what factors facilitate physical activity and what factors are barriers to activity. A sample of 18 participants (3 men, 15 women) was recruited through two agencies providing services for adults with disabilities; six participants were adults with Down syndrome and 12 participants were support people (four were parents of adults with Down syndrome and eight participants were employed by day programmes attended by the adults with Down syndrome). The interviews were recorded, transcribed verbatim and independently coded by two researchers. Results Three themes around facilitators to physical activity were identified: (1) support from others; (2) that the physical activity was fun or had an interesting purpose; and (3) routine and familiarity. Three themes around barriers were also identified: (1) lack of support; (2) not wanting to engage in physical activity; and (3) medical and physiological factors. Conclusions The results suggest that support people play a key role, both as facilitators and barriers, in the participation by adults with Down syndrome in physical activity. Many of the barriers and facilitators of activity for adults with Down syndrome indentified are similar to those reported for adults without impairment. Our findings are also consistent with established theories in the field of health behaviour change.     

Perceptions of implementing facing your fears in hospital and community organizations

BackgroundImplementation science is essential for identifying the strengths and challenges of evidence-based interventions when they are delivered in community settings. We examined the implementation of Facing Your Fears (FYF), a cognitive behaviour group intervention for autistic children and youth who experience co-occurring anxiety, in a hospital setting versus a community setting.MethodThis qualitative study was based on theories of diffusion of innovation and mutual adaptation and explored the implementation process through the perceptions of facilitators and managers. Sixteen multi-disciplinary facilitators and managers were interviewed regarding their perceptions of the compatibility, complexity, relative advantages, barriers, challenges, and adaptations that arose during implementation of FYF.ResultsOverall, facilitators and managers from both organizations reported that FYF had good compatibility with their organization, implementation of FYF was not too complex, and members of each organization reported advantages that were directly related to their setting. Facilitators and managers reported barriers and challenges that were organized into four theme-categories: system-level, intervention delivery, logistics, and individual and family. Adaptation themes aligned with the barriers and challenges that each organization encountered when implementing FYF, and modifications were made to both the intervention and the organization structure to overcome implementation challenges.ConclusionThis is the first study to examine implementation of FYF in two different settings, providing essential knowledge on the versatility and sustainability of this program in multiple healthcare settings. Facilitators and managers identified specific characteristics, barriers, and adaptations for FYF that can provide insight for organizations considering FYF implementation.     

Relief Care for Children and Adults with a Mental Handicap: An Examination of Carers' Views

A survey of carers of people with a mental handicap was carried out in the Malvern Hills area of Hereford and Worcester in conjunction with the local MENCAP and Family Support Groups to establish the carers' views of the service. Carers wanted a service that was local and provided flexible, mostly short-term care on both a planned and emergency basis. Carers of adults wanted a more frequent and regular service than those caring for children. The exact nature of required schemes differed between carers of adults and children. In a significant number of cases carers were unaware of some of the relief care schemes that were available and were critical of the way in which information was provided, suggesting ways in which this could be improved.     

Experiences of mental health services by people with intellectual disabilities from different ethnic groups: a Delphi consultation

Background Patient experience of those accessing mental health services has been found to be different between ethnic groups. Although the needs of people with intellectual disabilities (ID) from different ethnic communities are being increasingly recognised, little has been published about their experiences of mental health services. The aim of this study was to establish whether there are any differences in the experiences of people with ID and mental health problems from two ethnic communities in South London. Method A two‐round Delphi process was utilised. White British and Black or Black British service users from a specialist community‐based mental health service for adults with ID completed a specially compiled questionnaire. Statements on participants' experiences, including satisfaction with care, staff members' attitudes, cultural awareness and level of support, were rated using a Likert scale. Results Twenty‐four out of 32 participants (75%) completed both rounds of the Delphi consultation. Consensus (≥80% agreement with the group median) was reached for 20 items in the White group and five items in the Black group. All responses that reached consensus were positive about the services that were being received. The Black group were less positive about a range of their experiences, including the use of medication. Conclusions People with ID from two ethnic groups were able to successfully complete a Delphi consultation regarding their experiences of mental health services. Broad consensus on positive experiences of services was reached in the White group but not for the Black participants.     

Access to assistive technology for people with intellectual disabilities: a systematic review to identify barriers and facilitators

Background

The World Health Organisation has launched a programme to promote Global Cooperation on Assistive Technology. Its aim is to increase access to high‐quality affordable assistive products (AP) for everybody in need. People with intellectual disabilities (ID) are a specific group that could benefit from AP, but use less AP compared to their non‐intellectual disabled peers.

Method

A systematic literature search was carried out to identify barriers and potential facilitators for access to AP for people with ID globally. The search strategy terms were ‘Intellectual Disability’ and ‘Assistive Technology’ with the following electronic literature databases PubMed, Embase, ASSIA, Web of Science, Medline, CINAHL complete, PsycInfo, Scopus and ERIC. The quality and relevance of the studies were assessed. Factors associated with access were identified thematically, categorised into barriers and facilitators and mapped into themes.

Results

In all, 22 key studies were retrieved, describing 77 barriers and 56 facilitators. The most frequently reported barriers were related to lack of funding and cost of AP, lack of awareness about AP and inadequate assessment. An increase of knowledge and awareness about AP and the need of AP for people with ID were most often extracted as factors that could potentially facilitate access.

Conclusions

This review proposes actions linked to the barriers and facilitators that have a particular importance for people with ID to access AP. Yet, only limited research is available describing factors that influence access to AP for people with ID in low and middle income countries and rural areas.