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.     

First-time primary caregivers' experience accessing first-episode psychosis services

Aim: Easy access to first‐episode psychosis (FEP) services is critical in reducing the duration of untreated illness. However, primary caregivers can encounter difficulties accessing services on behalf of young people with FEP. This qualitative study describes the lived experience of first‐time primary caregivers of young adults with FEP, with a focus on examining how they access specialist FEP services. Methods: A qualitative study was undertaken using semi‐structured, in‐depth interviews with 20 caregivers in Melbourne. Results: Most carers were women (85%, n = 17) and parents (85%, n = 17). Nearly all lived in the same households as the young people with FEP (90%, n = 18). The mean duration of their involvement with the FEP service was 14.5 months (standard deviation = 8.9). Three competing themes were identified in the data, reflecting caregivers' polarized experiences accessing FEP services. First, general practitioners were regarded as either a resourceful or an unresourceful means of access to FEP services. Second, caregivers often encountered service‐focused and carer‐focused barriers when initially accessing services. Third, a combination of acquired knowledge, experience with services and caregiver assertiveness enhanced access on subsequent occasions. Conclusion: This study highlights the important contribution and experience of first‐time primary caregivers and the difficulties they face accessing services. The findings suggest access should be influenced more by clinical need and less by caregivers' perseverance. The findings also underline the importance of providing clinical training that acknowledges the needs and contributions of caregivers, as well as interventions that meet the unique challenges faced by first‐time caregivers accessing services after the onset of FEP.     

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.     

Social exclusion and people with intellectual disabilities: a rural–urban comparison

Background Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Method Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face‐to‐face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co‐morbidities. Results A representative sample of adults with ID from rural (n = 39) and urban (n = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3–51.5] including employment (OR = 22.1, 95% CI = 5.7–85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6–17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9–60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with other people in a wide range of situations, but the quality of relationships may have been less close in rural areas. Finally, participants lived in significantly less deprived areas when in rural compared with urban areas (Mann–Whitney U = 7826, Z = ?3.675, P ≤ 0.001). Conclusions These results suggest that adults with ID living in rural areas have better opportunities and live in less deprived areas than adults with ID living in urban areas. However, they may not hold such positive or close relationships, and this may be important when considering the subjective experience of social exclusion.     

Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability

Background The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population‐based study to explore cause‐specific mortality in adults with ID compared with the general population. Methods Cause‐specific standardised mortality ratios (SMRs) and exact 95% confidence intervals were calculated by age and sex for adults with moderate to profound ID living in the unitary authorities of Leicester, Leicestershire and Rutland, UK, between 1993 and 2006. Causes of death were also studied to determine how often ID and associated conditions, such as Down syndrome, were mentioned. Results A total of 503 (17% of population) adults with ID died during the 14‐year study period (30 144 person‐years). Relatively high cause‐specific mortality was seen for deaths caused by congenital abnormalities (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), mental disorders (other than dementia) (SMR = 1141) and bronchopneumonia (SMR = 647). Excess deaths were also seen for diseases of the genitourinary system or digestive system, cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system diseases (in women only) and accidental deaths (in women only). Two‐fifths (n = 204; 41%) of deaths recorded in adults with ID mentioned ID or an associated condition as a contributing cause of death. Conclusions Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the government's confidential inquiry into causes of death in this population.     

Eating disorders in adults with intellectual disability

There is an increasing focus on the nutrition of people with intellectual disability (ID), but less interest in the range of eating disorders (EDs) that they may exhibit and the bio‐psycho‐social impact of these conditions. Despite diagnostic and methodological difficulties, psychopathology and ED research studies suggest that 3–42% of institutionalized adults with ID and 1–19% of adults with ID in the community have diagnosable EDs. Weight surveys indicate that 2–35% of adults with ID are obese and 5–43% are significantly underweight, but the contribution of diagnosable EDs is unknown. Such data and case reports suggest that EDs are associated with considerable physical, behavioural, psychiatric and social comorbidity. Review papers have focused on the aetiology and treatment of pica, rumination, regurgitation, psychogenic vomiting and food faddiness/refusal. Emerging clinical issues are the development of appropriate diagnostic criteria, multimodal assessment and clinically effective treatment approaches. Key service issues include staff training to improve awareness, addressing comorbidity and access issues, and maintaining support for adults with ID and EDs, and their carers. Research should confirm the multifaceted aetiology and comorbidity of EDs. Then multicomponent assessment and treatment models for EDs can be developed and evaluated.     

Feasibility and outcomes of multiplex ligation-dependent probe amplification on buccal smears as a screening method for microdeletions and duplications among 300 adults with an intellectual disability of unknown aetiology

Background Determining the aetiology of intellectual disability (ID) enables anticipation of specific comorbidity and can thus be beneficial. Blood sampling, however, is considered stressful for people with ID. Our aim was to evaluate the feasibility of a non‐invasive screening technique of nine microdeletions/duplications among adults with ID of unknown aetiology. Methods In a random sample of 300 adult clients of Dutch ID services without an aetiological diagnosis, DNA was collected on site using oral swabs. Multiplex Ligation‐dependent Probe Amplification was applied to screen for nine microdeletions/duplications related to ID syndromes (Williams 22q11‐deletion, 1p‐deletion, Miller–Dieker, Smith–Magenis, Prader–Willi, Alagille, Saethre–Chotzen and Sotos syndrome). Results Feasibility: prior to the consent procedure, for 2.1% (10/471 eligible participants), the method was considered undesirable. In 0.7% (2/300 participants) oral swabs failed because of resistant behaviour, while in 16.1% (48/298 swabs) analysis was unsuccessful because of insufficient amounts of DNA. A repeated attempt yielded an equal success rate. Outcome Microdeletions were diagnosed in four participants: 22q11 deletion (n = 2), 5q35 deletion (Sotos syndrome) (n = 1) and 1p deletion (n = 1). One participant had a duplication of the Prader–Willi Region (15q11‐13) owing to mosaicism of a supernumerary marker chromosome (15). Conclusions Oral swabs are a feasible method for DNA sampling in adults with IDs. A diagnosis could be made in five out of 275 people with ID of unknown aetiology. After screening, in the total population sample (n = 620), the prevalence of syndromes associated with the microdeletions/duplications studied was at least 2.3% (95% confidence interval 1.1–3.4%).     

The needs of carers: a comparison between eating disorders and schizophrenia

Objective

This pilot study compares the level of distress and the need for support between carers of patients with anorexia (AN) and bulimia nervosa (BN) and carers of patients with schizophrenia.

Methods

Thirty-two carers of patients suffering from AN and BN and 30 carers of patients with schizophrenia filled out the general health questionnaire (GHQ-12) and the burden inventory (BI). In addition, they were interviewed with a semi-structured research interview, the carers’ needs assessment (CNA), to assess relevant problem areas as well as the need for helpful interventions. Patients with an eating disorder were interviewed with the eating disorder examination (EDE) and patients with schizophrenia with the positive and negative syndrome scale (PANSS) to assess the severity of the disorder.

Results

The mean duration of illness was 5.3 years in the patients with eating disorders and 7.3 years in the patients with schizophrenia. Most of the carers were mothers or partners. In the CNA we found high numbers of problems as well as high numbers of unmet needs for interventions. The most frequently mentioned problem areas in all groups of carers were “disappointment caused by the chronic course of the illness, concerns about the patient’s future” and “problems in communication with the patient”. The most frequently reported need for support in all groups was “counseling and support by a professional”. Carers of patients with BN reported a significantly lower number of problems and of needs for interventions compared to the carers of patients with AN and schizophrenia. Also in the BI and the GHQ-12 we found significantly lower total scores in carers of patients with BN. Carers of patients with AN and schizophrenia did not differ significantly in any of the assessments. The severity or duration of illness of the patients did not correlate with the carers’ burden or needs.

Conclusions

Carers of patients with an eating disorder and carers of patients with schizophrenia are burdened with similar problems and have high levels of unmet needs which are usually not addressed in clinical practice. Carers of anorectic patients have higher levels of difficulties in various areas compared to carers of bulimic patients and did not differ from carers of patients with schizophrenia.     

Injuries, falls and accidents among adults with intellectual disabilities. Prospective cohort study

Background Injuries are among the leading causes of death and disability in the world and a major public health concern. Falls are a common cause. Young persons with intellectual disabilities (ID) have a higher rate and different pattern of injuries than the general population, but little is known regarding adults. Methods The aim of this study was to determine the incidence and types of injuries experienced by a community‐based cohort of adults with ID (n = 511) in a 12‐month period. Face‐to‐face interviews were conducted with participants 2 years after they had first been recruited into a longitudinal study. Results Incidence of at least one injury in a 12‐month period was 20.5% (105), of which 12.1% (62) was because of falls. Incident injury was predicted by having epilepsy and not having autism. Incident fall injury was predicted by urinary incontinence, while Down syndrome reduced risk. Conclusions Adults with ID do experience a higher rate of injuries and falls when compared with the general population. The results of this study highlight this, and hence the need to work towards the development of interventions for injury and falls prevention in this population.     

Behavioural characteristics associated with dementia assessment referrals in adults with Down syndrome

Background Behavioural changes associated with dementia in Down syndrome are well documented, yet little is known about the effect of such behaviours on carers and referral. By comparing the behavioural and cognitive profiles of individuals referred for a dementia assessment with those of individuals not referred, some insight can be gained into behavioural characteristics that initiate referral for specialist support or interventions. Method Forty‐six adults with Down syndrome were divided into two groups dependent upon method of entry into the study; post‐referral to a specialist service for older adults with intellectual disabilities and Down syndrome for a dementia assessment (n = 17) or after receiving information sent out to day centres and residential homes (n = 29). These groups were compared on established measures of dementia alongside two informant measures of behaviour. Results Those referred for a dementia assessment evidenced scores indicative of cognitive decline on both informant and direct Neuropsychological Assessments and showed more behavioural excesses, but not deficits, and lower socialisation and coping skills than those in the comparison group. Carers of those referred for a dementia assessment reported a greater impact of behavioural excesses on staff than on the individual showing the behaviour in contrast to the comparison group. Conclusion The behavioural differences between those referred and the comparison group suggest that two factors are involved in the instigation of a referral for a dementia assessment: the nature of the behavioural presentation (excesses rather than deficits) and the effect of that behavioural change upon the care staff.     

Deficient health and social services for elderly people with learning disabilities

Elderly people with learning disabilities have greater psychiatric morbidity than younger individuals, but a previous report has suggested that themajorityoftheformerdonot receive treatment All people with leaming disabilities aged 65 years and over living in Leicestershire, England (n= 134), and a random sample of adults with learning disabilities aged between 20 and 64 years (n= 73) were assessed for psychiatric disorders and service use. Elderly people received less day care, less respite care, and were less likely to have a social worker and receive input from most health services than the younger group. Chiropody was an exception. Those receiving psychiatric services did so through the leaming disabilities specialist services only. Those with an additional psychiatric disorder were more likely to receive services, but results still favoured the younger group. Services were better accessed by those living in residential care. Failure to access services may relate to carers attitudes and beliefs: in leaming disability settings, morbidity was attributed to ‘it's just old age’ in the elderly settings, morbidity was attributed to ‘it's because s/he has leaming disabilities’. The specialist health and social services need to take the lead in health promotion and education.     

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.     

Self‐medication of regular headache: a community pharmacy‐based survey

Background: This observational community pharmacy‐based study aimed to investigate headache characteristics and medication use of persons with regular headache presenting for self‐medication. Methods: Participants (n = 1205) completed (i) a questionnaire to assess current headache medication and previous physician diagnosis, (ii) the ID Migraine Screener (ID‐M), and (iii) the Migraine Disability Assessment questionnaire. Results: Forty‐four percentage of the study population (n = 528) did not have a physician diagnosis of their headache, and 225 of them (225/528, 42.6%) were found to be ID‐M positive. The most commonly used acute headache drugs were paracetamol (used by 62% of the study population), NSAIDs (39%), and combination analgesics (36%). Only 12% of patients physician‐diagnosed with migraine used prophylactic migraine medication, and 25% used triptans. About 24% of our sample (n = 292) chronically overused acute medication, which was combination analgesic overuse (n = 166), simple analgesic overuse (n = 130), triptan overuse (n = 19), ergot overuse (n = 6), and opioid overuse (n = 5). Only 14.5% was ever advised to limit intake frequency of acute headache treatments. Conclusions: This study identified underdiagnosis of migraine, low use of migraine prophylaxis and triptans, and high prevalence of medication overuse amongst subjects seeking self‐medication for regular headache. Community pharmacists have a strategic position in education and referral of these self‐medicating headache patients.     

Community care for adults with learning disability and their carers: needs and outcomes from the Leicestershire register

A cross-sectional study, based on an epidemiological register, was carried out to describe the prevalence of disabilities, felt needs and use of services for adults with learning disability and to compare outcomes of reported morbidity, stress and satisfaction among their informal carers. Subjects included 2117 adults and 982 carers known to specialist services in Leicestershire. Behavioural and psychological problems and epilepsy were the main disabilities in adults. The leading unmet needs reported by residential carers were for daycare and other forms of residence, and those reported by informal carers were for financial help, long-term social support, respite care and housing adaptations. Informal carers reported 40% more limiting health disorders compared to the general population, with depression almost four times more common among female carers. Divisions between health and social care are causing inequality and hardship. Lifelong informal carers need options for independence. The increase over time in the prevalence of adults with severe learning disabilities adds to the evidence that more resources for care are needed. Epidemiological registers and methods should be developed to aid purchasing and provision for this client group.     

The ComFor: an instrument for the indication of augmentative communication in people with autism and intellectual disability

Background The ComFor (Forerunners in Communication) is an instrument to explore underlying competence for augmentative communication. More specifically, it measures perception and sense‐making of non‐transient forms of communication at the levels of presentation and representation. The target group consists primarily of individuals with autism and intellectual disability (ID) without or with only limited verbal communication. The ComFor is suitable for children and adults with a developmental level between 12 and 60 months. This paper describes the theoretical framework and structure of the ComFor, the results of a study on its psychometric properties and its clinical uses. Method The ComFor was tested on a sample of 623 children and adults from the Netherlands and Flanders: a group with autism and ID (n = 310); a group with ID without autism (n = 174); and a control group of typically developing children (n = 139). Results The data generally support the reliability and validity of the ComFor. Internal consistency, inter‐rater and test–retest reliability were found to be good. Construct validity (internal structure, convergent and divergent patterns) was established in different ways. The criterion‐related validity has yet to be established, as predictive data are not available at the moment. Conclusion Taken together, the results indicate that the ComFor is a promising instrument to explore underlying competence for augmentative communication. Areas for future research are outlined and the clinical relevance is discussed.     

Health status and use of medications by adults with intellectual disability in Western Australia

Background Evidence suggests that adults with intellectual disability (ID) are vulnerable to poor health outcomes. This paper describes the health status and medication use of adults with ID in Western Australia.

Method We conducted a cross-sectional survey by interview of 328 adults with ID (M age?=?37 years, range: 18–82) and their families/support persons (79% proxy or joint informants).

Results Although 90% of participants reported long-term health conditions (M?=?2.6, range: 0–10), including epilepsy, allergies, eczema, asthma, and mental health problems, three quarters of the participants (77%) described their health as good or very good. Younger participants (18–44 years) reported osteoporosis and stroke, conditions commonly associated with ageing, more often than the general population at those ages. Medication use was high, with 70% taking one or more medications (Mdn?=?3 medications, range: 0–21).

Conclusions Many participants reported that health problems affected their daily lives, yet the majority reported good health. Long-term health conditions were common and many people used several types of medications. Participants had poorer health than the Western Australian population overall. Careful monitoring of health conditions and regular review of medications are recommended to improve health outcomes for adults with ID.     

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.     

The experience of caregiving for severe mental illness: a comparison between anorexia nervosa and psychosis

Background: The aim of this study was to examine the experience of care giving for people with anorexia nervosa and to compare it with the experiences of those people who care for a person with a psychotic illness. Method: Carers (parents, siblings and husbands) of people with eating disorders who had experienced an episode of inpatient care for anorexia nervosa (n=71) were given the General Health Questionnaire and the Experience of Caregiving Inventory. A sample of carers (N=68) of people with a psychotic illness from the community were used as a comparison group. A subgroup of the carers (n=20) of people with anorexia nervosa were asked to write about their experiences. Results: The clinical samples had a similar duration of illness, but the patients with anorexia nervosa were significantly younger and a larger proportion were living at home. The general health scores were significantly higher in the carers of anorexia nervosa and they experienced higher levels of difficulties in most areas of caregiving. A variety of variables from the Caregiving Inventory contributed to the level of psychological distress, accounting for 36 % of the variance. The themes of guilt and shame were additional dimensions that were addressed in the letters. Conclusions: Carers of people with anorexia nervosa are challenged by the difficulties their role produces. Accepted: 26 February 2001