Preferences for Smoking Cessation Support from Family and Friends Among Adults with Serious Mental Illness

Engaging natural supports may be a promising strategy to promote the use of evidence-based smoking cessation treatment for individuals with serious mental illness (SMI) who smoke. This qualitative study explored preferences for support for quitting from family and friends among individuals with SMI who participated in cessation treatment. Participants were 41 individuals with SMI enrolled in a Medicaid Demonstration Project of smoking cessation at community mental health centers. Open-ended questions asked during a social network interview explored participants’ preferences for more support for quitting smoking from family and friends. The qualitative data was coded and common themes were identified across the dataset. Three primary preferences emerged for smoking cessation support from family members and friends: 1) more practical support for quitting (e.g., financial help with purchasing cessation medications); 2) more emotional support for quitting (e.g., encouraging progress toward quitting); and 3) changing their own smoking behaviors in the presence of participants (e.g., don’t smoke around them or offer them cigarettes). Individuals with SMI who participated in smoking cessation treatment at community mental health centers indicated several ways that family members and friends could support their efforts to quit smoking. Understanding how people with SMI want support from family and friends to quit smoking will inform strategies to leverage these natural resources to promote the use of evidence-based smoking cessation treatment and support smoking abstinence for this population.     

‘He will finish up caring for me’: people with learning disabilities and mutual care

Until recently, the carer's perspective has dominated research on families who include someone with a learning disability and recent legislation has underlined the carer's rights. Previous research has found that some more able people with learning disabilities were very aware of their parents' growing needs, and were taking on responsibilities within the family to help and support their carer/parents. However, recent legislation still dichotomizes family members into carers and cared‐for people. The present paper is based on a research study of the impact of the UK Carers Act 1995 on families with someone with a learning disability. It involved canvassing the views of people with learning disabilities about their experience of assessments and their relationships within the family. The present authors found that many people with learning disabilities expressed empathy for their carer's point of view and that several people (including some who had high support needs themselves) were performing care tasks for their elderly parents. However, no one appeared to recognize the situation as one of mutual care, and parents generally carried on defining themselves as carers since they took responsibility and exercised control. The present authors conclude that mutual caring is far more common than is recognized and includes people with severe learning disabilities. A more holistic approach to assessment of needs is required that can take into account the complex web of interdependence within a family. Rather than categorizing people into ‘carers’ and ‘cared‐for’, the present authors suggest a model that recognizes mutually supportive partnerships within the family.     

“It’s Us That Have to Deal with it Seven Days a Week”: Carers and Borderline Personality Disorder

Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers’ focus group, entitled ‘The role of Mental Health services,’ produced four super-ordinate themes. The second carers’ focus, entitled ‘Experiences in the Community,’ produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being.     

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' KNOWLEDGE OF DEMENTIA AND THEIR EXPRESSED CONCERNS

Objective. The authors wished to determine how much carers from different settings caring for patients with dementia knew about the disorder and elicit their main concerns about the disease. Design. A survey questionnaire was administered to 136 carers. Setting. Two old age psychiatric services and an Alzheimer's support group in urban areas of the UK. Participants. The carers came from one of three categories: (1) carers with no prior contact with elderly mental health services (preassessment group); (2) carers who had been in contact with mental health care professionals (postassessment group); (3) carers in contact with an Alzheimer's Disease Society support group. Measures. A questionnaire on the subject of dementia. Carers' worries about the disorder were also recorded. Results. Carers in contact with an Alzheimer's support group were the most knowledgeable and carers in the preassessment group were the least knowledgeable on the subject of dementia. While carers in the postassessment group had a level of knowledge above that of the preassessment group, this difference failed to reach statistical significance. Conclusion. The study highlights the need for elderly mental health teams to evaluate their methods of dissemination of knowledge to carers, develop educational packages for carers and evaluate their effectiveness. © 1997 by John Wiley & Sons, Ltd.     

Younger people with dementia: diagnostic issues,effects on carers and use of services

Objective. To determine difficulties experienced by carers of younger people with dementia. Design. Cross-sectional self-report questionnaire survey. Participants. 102 eligible carers of persons less than 65 years of age with dementia, recruited through support groups and clinicians' referrals. Main outcome measures. Problems with diagnostic process; professionals/services consulted; psychological, physical, occupational and financial impact of illness on carers and children; use of and satisfaction with services. Main results. Diagnostic problems were reported by 71% of carers. Mean time until diagnosis was 3.4 years (SD 2.8) after consulting 2·8 (1·4) professionals. Carers reported frustration (81%) and grief (73%). Adverse psychological effects were common, more so in female than male carers (p<0·01). The younger the carer, the more psychological and physical effects were experienced (p<0·01). Only 8% of carers considered that their children had encountered no problems because of the dementia. Of 61 working carers, 59% reduced their hours or stopped working after diagnosis, and 89% of all carers had experienced financial problems subsequent to diagnosis. Most carers (89%) had used a support service, but 25% had never used community support, 32% had never used respite. Proportions of carers rating services as ‘good’ ranged between 43 and 100%. Conclusions. Younger people with dementia, and their carers, face difficulties in obtaining a diagnosis. Carers also experience psychological problems, financial worries, loss of employment and family conflict, and their children are affected. Most carers had used services, but some dissatisfaction existed. © 1998 John Wiley & Sons, Ltd.     

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     

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.     

Families and dementia

Carers of elderly people with dementia are under considerable stress coping with the burdens of caring. This review looks at carers' stress and the psychological interventions available to help them. These include group therapy, behavioural approaches, psychoeducational techniques, family therapy and potentially more cost-effective approaches such as the provision of telephone helplines for carers.     

Quantifying the size of the informal care sector for Australian adults with mental illness: caring hours and replacement cost

Purpose

To quantify and value the total informal support provided by family and friends to Australian adults with mental illness in 2018.

Methods

The number of mental health carers was drawn from the 2015 Survey of Disability, Ageing and Carers (SDAC), adjusted to the 2018 population. Annual caring hours by type of assistance were estimated using the SDAC, 2007 National Survey of Mental Health and Wellbeing and an online carer survey. Caring hours for each task were assigned an hourly replacement cost from the National Disability Insurance Scheme. Informal caring was valued as the sum of these costs minus expenditure on carer income support payments, estimating how much it would hypothetically cost governments to replace this care with formal support services.

Results

An estimated 354,000 (95% uncertainty interval (UI): 327,000–383,000) Australian mental health carers provided 186 million (95% UI: 159–215) hours of support in 2018. The estimated replacement cost was AU$8.4 billion (95% UI: 7.0–10.0), excluding AU$1.3 billion in income support. Univariate sensitivity analyses demonstrated that results were robust to variation in model inputs, with total caring hours the most influential parameter. Using an alternative estimate of mean caring hours, the replacement cost could be as high as AU$13.2 billion (95% UI: 11.2–15.4).

Conclusion

Informal carers provide substantial support to people with mental illness, highlighting their important contribution to the mental health system and reinforcing the need for carer support services. Future valuation studies would benefit from refinement of available data collections, particularly on hours and types of care provided.

     

Mental health care in Germany: carers' perspectives

OBJECTIVE: To assess the mental health care system in Germany from the point of view of the federal association of family carers of people with mental illness. METHOD: Family carer involvement and perspective are discussed on the basis of available literature, questionnaire surveys and documents of carer organizations. RESULTS: At the beginning of the reform movement the views of informal carers were not discussed. Since 1985 family carers have joined forces to express their views on needs of the severely mentally ill and their carers. Their aim is to point out deficits of the care system and to work towards improved care for their relatives with mental illness and changes in the mental health care system. CONCLUSION: In the reform process informal carers should receive support and be respected as experts and partners.     

Carers’ Hope, Wellbeing and Attitudes Regarding Recovery

Carers are important to the recovery of their relatives with serious mental disorder however, it is unclear whether they are aware of, or endorse recent conceptualisations of recovery. This study compared carers’ and mental health workers’ recovery attitudes, and undertook multivariate predictions of carers’ wellbeing, hopefulness and recovery attitudes. Participants were 82 Australian family members caring for a relative with psychosis. Carers’ average recovery attitudes were less optimistic than for previously surveyed staff. Carers’ recovery attitudes were predicted by perceptions that their relative’s negative symptoms were more severe. Hopefulness and wellbeing was predicted by more positive and less negative caregiving experiences. Hopefulness was also predicted by less frequent contacts with their affected relative, and unexpectedly, by perceptions of more severe psychotic symptoms. Carers’ wellbeing was further predicted by having a partner and having no lifetime history of a mental disorder. Hope and wellbeing are affected by everyday challenges and positive experiences of caregiving.     

Toward a family-oriented treatment approach for consumers and carers of mental illness

In 2010–2011, a qualitative focus group study was commissioned by Australia’s beyondblue to explore the needs and experiences of consumers and carers of mental illness. Overall, it was found that their ‘stories’ are substantially different from one another, leading to high stigma within families. The aim of this article is to discuss these phenomena more deeply. In summary, the pervasive stigma associated with mental illness in society affects: people from gaining in-depth knowledge about it and therefore capacity to recognize symptoms early and provide the necessary empathy required; the capacity of health professionals to provide holistic treatment and not simply rely on a ‘medical model’; and the provision of adequate funding to ensure the formal mental health system has appropriate infrastructure to meet consumers’ needs. Stigma essentially hides mental illness from the community, placing pressure on families to provide support instead who may lack the expert knowledge that clinical consumers require. The ongoing and stressful nature of caring can cause carers to develop stigmatic attitudes and behaviors. These are intensified with misperceptions about consumers’ control over their mental illness, unequal distributions of attention within the household, and low consumer insight into the carer experience. It can also lead to the development of their own trauma that requires formal help. To address these complex issues, stigma is the foremost issue in need of redress. It can help reduce barriers to help-seeking in both consumers and carers, and ensure the provision of an informed and well-resourced ‘mental health response’ for families.     

Causes of crises and appropriate interventions: The views of people with dementia,carers and healthcare professionals

The aims of this study were to identify which factors may lead to crisis for people with dementia and their carers and identify interventions these individuals believe could help in crisis. Qualitative study using focus groups to compare the perspectives of people with dementia, family carers and healthcare professionals on causes of crises and crisis interventions. To help in a crisis, people with dementia were favourable towards support from family and friends, access to mobile phones and home adaptations to reduce risks. Carers were keen on assistive technology and home adaptation. Both carers and staff valued carer training and education, care plans and well-coordinated care. Staff were the only group emphasizing more intensive interventions such as emergency home respite and extended hours services. In terms of causes of crises, people with dementia focused on risks and hazards in their home, whereas family carers emphasized carer stress and their own mental health problems. Staff, in contrast were concerned about problems with service organization and coordination leading to crises. Physical problems were less commonly identified as causes of crises but when they did occur they had a major impact. Practical interventions such as home adaptations, assistive technology, education and training for family carers, and flexible home care services were highly valued by service users and their families during times of crisis and may help prevent hospital admissions. Specialist home care was highly valued by all groups.     

Carers and community mental health services

Background There is a growing appreciation of the role and needs of carers for people with mental health problems. Carers are a diverse group, including partners, relatives and friends who are seen as such by service users. Methods Sixty-four carers of people with severe mental health problems served by four different mental health care providers were interviewed using the Experiences of Care-giving Inventory. The districts were selected to differentiate services that are targeted at more severely impaired users from those that include a wider spectrum, and to contrast services that have greater integration between health and social care providers with those whose health and social care agencies operate relatively discretely. Results In the two districts where service users had more severe mental health problems, carers worried more about negative symptoms and thought less about good aspects of the caring relationship. In the two districts where health and social services worked more closely together, carers worried significantly less about the need to back up services. Conclusions These findings suggest that service organisation can affect carers, in particular that integration between health and social care for people with mental health problems may benefit carers in ways that were hitherto unproven. They highlight the needs of carers for younger people. They show that the ECI is a useful instrument in measuring the impact of caring for people with severe mental health problems. Accepted: 19 September 2001     

Experiences of pathways to mental health services for young people and their carers: a qualitative meta-synthesis review

Worldwide, growing concern with young people’s mental health is spurring service reform efforts. Such reform requires a full understanding of the experiences of young people and their carers when seeking mental health help. To generate such an understanding, we conducted a meta-synthesis of qualitative literature on the perspectives of youths and their carers on navigating mental health systems. Five electronic databases were searched (Medline, PsycINFO, EMBASE, CINAHL, HealthSTAR). Studies were included if they explored the experiences of pathways to mental health services of persons aged 11–30 years and/or their carers; were published in English or French; and used qualitative methodology. Quality appraisal was conducted using the CASP tool. The synthesis of 31 included studies yielded three themes—initiating contact with mental health services; characteristics of services’ response; and youths’ and carers’ appraisal of services. Themes about initiating contact included mental health literacy, structural barriers, and social support. Service response-related themes included complex pathways, waitlists, eligibility, and fragmented care. In terms of service appraisal, positive encounters featured providers who were accessible and perceived as caring. Negative appraisals resulted from feeling misunderstood and excluded and being ill-informed about treatment. Across diagnoses and settings, youths and carers had difficult experiences accessing mental healthcare. While individual, social, and healthcare factors shaping pathways to care varied, systemic complexities were a common inhibitor. This synthesis informs recommendations for improving mental health services and youths’ pathways to them. It underlines the need for grounding reform in youths’ and carers’ perspectives and needs.

     

Discrepant illness perceptions,affect and expressed emotion in people with psychosis and their carers

Background Illness perception, a measure of illness representations developed from physical medicine, has recently been applied to psychosis. We investigated how illness perceptions relate to affect and expressed emotion (EE) in carer-patient dyads, particularly if their perceptions differed. Method We interviewed 82 carer-patient dyads, after a relapse of psychosis. Carers were assessed for illness perceptions, distress, self-esteem and EE; patients for illness perceptions, depression, anxiety and self-esteem, in a cross sectional study. Results Carers were more pessimistic than patients about illness persistence and consequences, and carers with low mood were particularly pessimistic about persistence and controllability. Discrepant views about illness consequences were related to greater anxiety, depression, and lower self-esteem in patients, while discrepant views on controllability were associated with greater distress, depression, and lower self-esteem in carers. Illness perceptions did not relate directly to EE. Conclusions In this sample, meta-cognitive carer representations of illness in psychosis are related to negative affective reactions in carers, but not to EE. Resolving discrepant illness perceptions between carers and patients might provide a way of improving family reactions to the health threat of psychosis.     

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.