The decision-making journey of a family carer : information and social needs in a cultural context

While the important role of family as carer has been increasingly recognised in healthcare service provision, particularly for patients with acute or chronic illnesses, the carer's information and social needs have not been well understood and adequately supported. In order to provide continuous and home-based care for the patient, and to make informed decisions about the care, a family carer needs sufficient access to medical information in general, the patient's health information specifically, and supportive care services. Two key challenges are the carer's lack of medical knowledge and the many carers with non-English speaking and different cultural backgrounds. The informational and social needs of family carers are not yet well understood. This paper analyses the web-log of a husband-carer who provided support for his wife, who at the time of care was a lung cancer patient. It examines the decision-making journey of the carer and identifies the key issues faced in terms of informational and social practices surrounding care provision.

Information systems and healthcare XXVIII : the information needs of family carers in collaborative healthcare

While the important role of family carers has been increasingly recognized in healthcare service provision, particularly for patients with acute or chronic illnesses, the family carer's information needs have not been well understood or adequately supported by health information systems. In this study, we explore the information needs of a family carer by analyzing the extensive online diary of a Vietnamese family carer supporting his wife, who was a lung cancer patient. The study provides a deep understanding of the information needs of the family carer and suggests a four-stage information journey model including identification, searching, interpretation and information sharing, and collaboration. A number of themes emerge from the study including the key role of the carer, information filtering by the carer, information sharing and collaboration, and the influence of Vietnamese culture. The paper concludes with a discussion of the requirements for health information systems that meet the needs of family carers.

The experience of family carers of people with dementia who are hospitalised

Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer’s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the ‘expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.

Families as carers-information needs in a cultural context

While the important role of family as a carer has been increasingly recognised in healthcare service provision, particularly for patients with acute or chronic illnesses, the carer’s information needs have not been well understood and adequately supported by current health information systems. In order to effectively provide continuous and home-based care for the patient, a family relative as the primary carer needs sufficient access to medical knowledge and patient’s health information. There are two challenges. First, being a family relative, the primary carer is often a non-medical practitioner. Second, in Australia, many primary carers are family relatives of patients from a non-English speaking background. They are often seen as interpreters in clinical consultation sessions. Their roles and responsibilities as an interpreter and a carer are often mixed and blurry.
Therefore, their information needs are often seen as secondary to the patient or neglected. The primary carer’s information needs are currently not yet well understood.

This paper reports finding from a case study which examines an on-line diary of a husband-carer who provided support and care for his wife, who at the time of care was a lung cancer patient. The case study examines an ongoing learning process that the husband went through, identifies information needs by the carer and cultural factors which played an important role in the husband’s interpretation of information, decision making and provision of care. The finding extends a current model of the user’s information needs in the literature and suggests implications for further research into developing health information systems to meet information needs by the family carer.

Family and carer smoking control programmes for reducing children's exposure to environmental tobacco smoke

Background: Exposure to other people’s cigarette smoke (environmental tobacco smoke, or ETS) is an important child health issue.
Objectives: To determine the effectiveness of interventions aiming to reduce exposure of children to ETS.
Search strategy: The Tobacco Addiction Group register of studies was searched.MEDLINE, EMBASE and four other health and psychology databases were searched electronically, bibliographies of retrieved primary studies were checked and specialists in the area consulted.
Selection criteria: Controlled trials with or without random allocation were included in this review if they addressed participants (parents and other family members, child care workers and teachers) involved with the care and education of infants and young children (aged 0-12 years). All mechanisms for reduction of children’s environmental tobacco smoke exposure, and smoking prevention, cessation, and control programmes targeting these participants are included. These include smoke free policies and legislation, health promotion, social behavioural therapies, technology, education and clinical interventions.
Data collection and analysis: Two reviewers independently assessed studies and extracted data. Due to heterogeneity of methodologies and outcomes, no summary measures were possible and results were synthesised using narrative summaries.
Main results: Nineteen studies met the inclusion criteria, one of which was subsequently excluded. Three interventions were targeted at populations or community settings, seven studies were conducted in the well child health care setting and eight in the ill child health care setting. Twelve of these studies are from North America. In 12 of the 18 studies there was reduction of ETS exposure for children in both intervention and comparison groups. In only four of the 18 studies was there a statistically significant intervention effect. Three of these successful studies employed intensive counselling interventions targeted to smoking parents. There is little difference between the well infant, child respiratory illness and other child illness settings as contexts for parental smoking cessation interventions. The fourth successful intervention was in the school setting targeting the ETS exposure of children from smoking fathers.
Authors’ conclusions: Brief counselling interventions, successful in the adult health setting when coming from physicians, cannot be extrapolated to adults in the setting of child health. There is limited support for more intensive counselling interventions. There is no clear evidence for differences between the respiratory, non-respiratory ill child, well child and peripartum settings as contexts for reduction of children’s ETS exposure.

Family and carer smoking control programmes for reducing children's exposure to environmental tobacco smoke

BackgroundChildren's exposure to other people's cigarette smoke (environmental tobacco smoke, or ETS) is associated with a range of adverse health outcomes for children. Parental smoking is a common source of children's exposure to ETS. Older children are also at risk of exposure to ETS in child care or educational settings. Preventing exposure to cigarette smoke in infancy and childhood has significant potential to improve children's health worldwide.ObjectivesTo determine the effectiveness of interventions aiming to reduce exposure of children to ETS.Search methodsWe searched the Cochrane Tobacco Addiction Group Specialized Register and conducted additional searches of the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, PsycINFO, EMBASE, CINAHL, ERIC, and The Social Science Citation Index & Science Citation Index (Web of Knowledge). Date of the most recent search: September 2013.Selection criteriaControlled trials with or without random allocation. Interventions must have addressed participants (parents and other family members, child care workers and teachers) involved with the care and education of infants and young children (aged 0 to 12 years). All mechanisms for reduction of children's ETS exposure, and smoking prevention, cessation, and control programmes were included. These include health promotion, social-behavioural therapies, technology, education, and clinical interventions.Data collection and analysisTwo authors independently assessed studies and extracted data. Due to heterogeneity of methodologies and outcome measures, no summary measures were possible and results were synthesised narratively.Main resultsFifty-seven studies met the inclusion criteria. Seven studies were judged to be at low risk of bias, 27 studies were judged to have unclear overall risk of bias and 23 studies were judged to have high risk of bias. Seven interventions were targeted at populations or community settings, 23 studies were conducted in the 'well child' healthcare setting and 24 in the 'ill child' healthcare setting. Two further studies conducted in paediatric clinics did not make clear whether the visits were to well or ill children, and another included both well and ill child visits. Thirty-six studies were from North America, 14 were in other high income countries and seven studies were from low- or middle-income countries. In only 14 of the 57 studies was there a statistically significant intervention effect for child ETS exposure reduction. Of these 14 studies, six used objective measures of children's ETS exposure. Eight of the studies had a high risk of bias, four had unclear risk of bias and two had a low risk of bias. The studies showing a significant effect used a range of interventions: seven used intensive counselling or motivational interviewing; a further study used telephone counselling; one used a school-based strategy; one used picture books; two used educational home visits; one used brief intervention and one study did not describe the intervention. Of the 42 studies that did not show a significant reduction in child ETS exposure, 14 used more intensive counselling or motivational interviewing, nine used brief advice or counselling, six used feedback of a biological measure of children's ETS exposure, one used feedback of maternal cotinine, two used telephone smoking cessation advice or support, eight used educational home visits, one used group sessions, one used an information kit and letter, one used a booklet and no smoking sign, and one used a school-based policy and health promotion. In 32 of the 57 studies, there was reduction of ETS exposure for children in the study irrespective of assignment to intervention and comparison groups. One study did not aim to reduce children's tobacco smoke exposure, but rather aimed to reduce symptoms of asthma, and found a significant reduction in symptoms in the group exposed to motivational interviewing. We found little evidence of difference in effectiveness of interventions between the well infant, child respiratory illness, and other child illness settings as contexts for parental smoking cessation interventions.Authors' conclusionsWhile brief counselling interventions have been identified as successful for adults when delivered by physicians, this cannot be extrapolated to adults as parents in child health settings. Although several interventions, including parental education and counselling programmes, have been used to try to reduce children's tobacco smoke exposure, their effectiveness has not been clearly demonstrated. The review was unable to determine if any one intervention reduced parental smoking and child exposure more effectively than others, although seven studies were identified that reported motivational interviewing or intensive counselling provided in clinical settings was effective.

Indirect discrimination and the worker-carer: It's just not working

Although initially Australia saw some high-profile successes in antidiscrimination cases for workers with family responsibilities, recent trends in appellate decisions such as Schou suggest that indirect discrimination concepts do not succeed for workers with family responsibilities. The limitations of an individual complaint model to address systemic disadvantage such as that experienced by ‘workercarers’ is simply in too much tension with entrenched expectations surrounding the contract of employment and the ‘ideal’ or ‘unencumbered’ worker. A re-imagining of the employment relationship and the role of the employer will be necessary to achieve substantive equality for workers with family responsibilities.

Stroke : the increasing complexity of carer needs

In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

The cost of seasonal respiratory illnesses in Australian children: the dominance of patient and family costs and implications for vaccine use

Respiratory viral infections are one of the next group of diseases likely to be targeted for prevention in childhood by the use of vaccines. To begin collecting necessary epidemiology and cost information about the illnesses caused by these viruses, we conducted a prospective cohort study in 118 Melbourne children between 12 and 71 months of age during winter and spring 2001. We were interested in calculating an average cost per episode of community-managed acute respiratory disease, in identifying the key cost drivers of such illness, and to identify the proportion of costs borne by the patient and family. There were 202 community-managed influenza-like illnesses identified between July and December 2001, generating 89 general practitioner visits, and 42 antibiotic prescriptions. The average cost of community-managed episodes (without hospitalisation) was $241 (95% CI $191 to $291), with the key cost drivers being carer time away from usual activities caring for the ill child (70% of costs), use of non-prescription medications (5.4%), and general practice visits (5.0%). The patient and family met 87per cent of total costs. The lowest average cost occurred in households from the highest income bracket. Acute respiratory illness managed in the community is common, with the responsibility for meeting the cost of episodes predominantly borne by the patient and family in the form of lost productivity. These findings have implications for preventive strategies in children, such as the individual use of, or implementation of public programs using, currently available vaccines against influenza and vaccines under development against other viral respiratory pathogens.

Perceptions of carer burden : differences between individuals with an eating disorder and their carer

Carer burden in eating disorders is considerable, but to date no research has examined carer burden from the perspective of the person with an eating disorder. The current brief report assessed carer burden with a short questionnaire, as perceived by 20 matched pairs of sufferers and their carers. Those with an eating disorder significantly underestimated the overall burden experienced by their carer, particularly in relation to nutritional difficulties and conflict within the family. Domains where carers and sufferers had high agreement may be useful in facilitating collaborative involvement between sufferers and carers in treatment, such as multi-family therapy.

How calls from carers, friends and family members of someone affected by cancer differ from those made by people diagnosed with cancer; analysis of 4 years of South Australian Cancer Council Helpline data

PURPOSE: The purpose of this study is to determine how people diagnosed with cancer who call the Cancer Council Helpline in South Australia differ from carers/family/friends (caregivers) who call. METHOD: Descriptive, retrospective audit of calls from people who contacted Cancer Council Helpline in South Australia between 16 April 2009 and 16 April 2013 who were diagnosed with cancer (n = 5766) or were the caregivers (n = 5174) of a person with cancer. RESULTS: Caregivers were more likely to be female (p < 0.001); younger in age (p < 0.001); call regarding cancer that was metastasised/widespread/advanced, terminal or at an unknown stage (p < 0.001) and phone requesting general cancer information or emotional support (p < 0.001). This group was more distressed (p < 0.001) but less likely (p = 0.02) to be offered and/or accept referrals to counselling than people diagnosed with cancer who called. Follow-up care was required by 63.5 % of caregivers and 73.1 % of people with cancer according to distress management guidelines; 8.5 and 15.3 %, respectively, accepted referrals to internal services. The most frequently discussed topic for both groups was emotional/psychological concerns. There were no differences in remoteness of residence or call length between groups. CONCLUSIONS: Caregivers represented different demographic groups than people diagnosed with cancer who called this helpline. The two groups phoned for different issues, at different stages of disease progression, displayed different levels of distress and, therefore, may benefit from services being tailored to meet their unique needs. These results also demonstrate the capacity of helplines to complement other health services and confirm that callers to cancer helplines exhibit high levels of distress.