You are here

  1. Home
  2. Impact of care
  3. Risks in care

Risks in care

The following resources examine the practical and psychological risks in caring situations for both carers and those they care for.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Tobacco smoke exposure in pediatric cystic fibrosis: A qualitative study of clinician and caregiver perspectives on smoking cessation

Objective: Tobacco smoke exposure has negative impacts on the lung health of children with cystic fibrosis (CF), yet evidence-based strategies for smoking cessation have not been tested with or tailored to CF caregivers. This qualitative study identified barriers and facilitators of smoking cessation in this population and outlined potential interventional approaches.

Methods: We conducted semi-structured interviews with CF familial caregivers who were current or former smokers, and with members of the CF care team. We asked about experiences, practices, and prerequisites for a successful program. Interviews were recorded, transcribed verbatim, and coded by two investigators. Analysis used a thematic approach guided by the PRECEDE model, which identifies predisposing (intrapersonal), reinforcing (interpersonal), and enabling (structural) factors relevant to health behaviors and programs.

Results: Seventeen interviews were conducted-eight with familial caregivers and nine with CF team members. Whereas caregivers provided greater insight into internal difficulties and motivators to quit smoking, clinicians offered more extensive input on barriers and solutions related to the clinical environment. Based on study recommendations, a successful tobacco cessation program should include (a) family education about the harms of smoke exposure for children with CF; (b) screening for exposure, ideally with biochemical verification; (c) access to trained tobacco counselors; (d) affordable pharmacotherapy; and (e) outpatient follow-up of those undergoing tobacco treatment.

Conclusion: This qualitative study revealed intrapersonal, interpersonal, and structural barriers to eliminating tobacco smoke exposure in children with CF, outlined opportunities to address these barriers, and made recommendations for a comprehensive tobacco cessation strategy. 

Access source material through DOI

Understanding Barriers to Initial Treatment Engagement among Underserved Families Seeking Mental Health Services

This mixed method study examined factors associated with parents not attending their child's mental health treatment after initially seeking help for their 2-5 year old child. It was part of a larger study comparing two evidence-based treatments among low-income racial/ethnic minority families seeking child mental health services. Of 123 parents who initiated mental health treatment (71% African American or multi-racial; 97.6% low-income), 36 (29.3%) never attended their child's first treatment session. Socio-demographic characteristics, parenting stress, depression, severity of child behavior problems, and length of treatment delay from intake to first scheduled treatment session were compared for families who did and did not attend their first treatment session. Parents who never attended their child's first treatment session were more likely to live with more than 4 adults and children (p=.007) and have more depressive symptoms (p=.003). Median length of treatment delay was 80 days (IQR =55) for those who attended and 85 days (IQR =67.5) for those who did not attend their child's first treatment session (p=.142). Three themes emerged from caregiver interviews: (a) expectations about the treatment, (b) delays in getting help, and (c) ambivalence about research participation. Findings suggest the need to develop better strategies for addressing risk factors early in the treatment process and reducing the length of time families with adverse psychosocial circumstances must wait for child mental health treatment.

Access source material through DOI

Patient and parental assessment of factors influencing the choice of treatment in pediatric hydrocephalus

OBJECTIVE: Choosing between competing options (shunt or endoscopic third ventriculostomy) for the management of hydrocephalus requires patients and caregivers to make a subjective judgment about the relative importance of risks and benefits associated with each treatment. In the context of this particular decision, little is known about what treatment-related factors are important and how they are prioritized in order to arrive at a treatment preference.

METHODS: The Hydrocephalus Association electronically distributed a survey to surgically treated hydrocephalus patients or their families. Respondents rated the importance of various surgical attributes in their decision-making about treatment choice, and also indicated their preference in hypothetical scenarios involving a trade-off between potential risks and benefits of treatment. Rank-order correlations were used to determine whether certain predictor variables affected the rating of factors or hypothetical treatment choice.

RESULTS: Eighty percent of 414 respondents rated procedural risks, minimizing repeat surgery, and improving long-term brain function as being very or extremely important factors when deciding on a treatment; 69% rated the need to implant a permanent device similarly. Parent-respondents rated procedural risks higher than patient-respondents. A majority of respondents (n = 209, 54%) chose a procedure with higher surgical risk if it meant that implantation of a permanent device was not required, and respondents were more likely to choose this option if they discussed both treatment options with their surgeon prior to their initial intervention (Spearman rho 0.198, p = 0.001). Although only 144 of 384 total respondents (38%) chose a less established operation if it meant less repeat surgery, patient-respondents were more likely to choose this option compared to parent-respondents (Spearman rho 0.145, p = 0.005). Likewise, patient-respondents were more likely than parent-respondents to choose an operation that involved less repeat surgery and led to worse long-term brain function (Spearman rho 0.160, p = 0.002), an option that was chosen by only 23 (6%) of respondents overall.

CONCLUSIONS: This study is the first exploration of patient/parental factors that influence treatment preference in pediatric hydrocephalus. Procedural risks, minimizing repeat operations, and the desire to maximize long-term cognitive function appeared to be the most important attributes that influenced treatment decisions that the survey respondents had made in the past. Patients and/or their caregivers appear to see some inherent benefit in being shunt free. It appears that fear of multiple revision operations may drive treatment choice in some circumstances.

Access source material through DOI

How do we know what we don't know? Exploring Deaf people's experiences of supporting their Deaf family member living with dementia

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

Access source material through DOI

Consumer expectations of self‐managing aged home care packages in Australia

This study investigated the expectations of older people who chose to participate in a self‐management trial of home aged care packages conducted by COTA Australia. Empowerment theory is used to interpret the findings. All Australian home aged care support packages are delivered using a consumer directed care (CDC) model, and most are managed by an aged care provider. The COTA Australia trial gave older people the opportunity to self‐manage their package and have more control over spending and less constraints on its use. This study examined three questions: (a) what motivated the older person, or an informal carer acting on their behalf, to participate in the self‐managing trial; (b) what outcomes they expected (c) and what was their attitude towards risk. The trial was conducted over 9 months in 2018–2019. Seven registered home aged care providers from six Australian states and territories recruited 103 consumers to the trial, with having an informal carer act on their behalf. Online questionnaires with consumers (n = 103) and informal carers (n = 66), and 18 semi‐structured interviews showed that older consumers and their informal carers had high expectations that self‐management would result in: increased choice and control and more flexible use of funds; lower administration fees and more money to spend on services and supports; improved relations with service providers and the opportunity to select support staff. Participants wanted clear information and guidelines and support from their provider. While wanting to have more control and be empowered, few respondents noted concerns about possible risks. This finding raises questions about consumers' awareness of risks that are documented in the literature, and it challenges providers to balance risk management with facilitating independence and autonomy. 

Access source material through DOI

Comparing Changes and Transitions of Home Care Clients in Retirement Homes and Private Homes

Long-stay home care clients mostly reside in private homes or retirement homes, and the type of residence may influence risk factors for long-term care placement. This multi-state analytic study uses RAI-Home Care and administrative data from the Hamilton Niagara Haldimand Brant Local Health Integration Network to model conceptualized states of risk at baseline through a 13-month follow-up period. Modifiable risk factors in these states were client loneliness or depressive symptoms, and caregiver distress. A higher adjusted likelihood of being discharged deceased was found for the lowest-risk clients in retirement homes. Adjusting for client, service, and caregiver characteristics, retirement home residency was associated with higher likelihood of placement in a long-term care home; reduced caregiver distress; and increased client loneliness/depression. As an alternative to private home settings as the location for aging in place among these long-stay home care clients, retirement home residency represents some trade-offs between client and informal caregiver.

Access source material through DOI

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

Background: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. Methods: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. Results: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. Conclusions: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.

Access source material through DOI

Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea

Background: Although familial involvement during inpatient care is not uncommon in western countries, the types of caring activities that family members in Asian countries provide are significantly different. These activities may place the family member at risk from a health care-associated infection. This study aimed to examine whether the role of patients' families has been accounted for in the infection prevention and control (IPC) guidelines and policy, using examples from Bangladesh (low-income country), Indonesia (middle-income country), and South Korea (high-income country). Methods: The World Health Organization website and Institutional Repository for Information Sharing, Centers for Disease Control and Prevention website, Australian Government Web Archive, Open Grey, Grey Matters, World Bank, and advanced Google search, as well as the Health Department/Ministry of Health websites for each target country and 4 western countries (Australia, Canada, England, and the United States) were searched. Other databases, such as Embase, Medline, CINAHL, Global Health, ProQuest databases, Google scholar, Web of Science, and Scopus were also searched. This was to review the reflection of the cultural influence in IPC policies/guidelines by reviewing those from the global organizations, which are often used as a blueprint for policy development, as well as those from western countries, which hold different cultures in care arrangement. Search was conducted with attention to the key areas: definition and role of carer in the acute health care facility, involvement of patients/family members in IPC activities, patient and family member hand hygiene, and IPC education. Results: Ninety-two articles were identified based on the criteria for the study. Only 6 acknowledged that care is provided to hospitalized patients by their family members, and only 1 recommended that family members receive the same level of training as health care workers on IPC precautions. Other guides recommended the provision of information on IPC measures as means of patient involvement in the IPC program. Recognition of family caregivers or inclusion of them in the IPC strategies was not included in the target countries' guidelines. Conclusions: Although health care workers are the primary actors when it comes to providing care in acute health care settings, it is important to expand the IPC guides by considering the role of other caregivers. Policies and guidelines should reflect the cultural influence over healthcare. This is especially true when cultural values strongly influence over healthcare arrangements and the healthcare accommodates these cultural influences in the practice. Further work needs to be undertaken on the level of training/education provided to family members in Bangladesh, Indonesia, and South Korea. 

Access source material through DOI

Care, poverty and coronavirus across Britain

Carers, paid and unpaid, are at the forefront of our response to the Coronavirus, putting themselves at risk to protect us all. Yet, if you are a carer, for adults or children, you are more likely to be living in poverty. This is not right.

This briefing note updates our Make Care Count report which focuses on the link between care and poverty before the crisis. It describes carers’ experiences of the pandemic, prioritising the voices of carers throughout, before detailing how we can take the first steps towards ending poverty for carers in Britain.

Original source (some source materials require subscription or permission to access)

Radiation safety assessment of caregivers of thyroid cancer patients treated with 131I in Taiwan

Released thyroid cancer patients treated with 131I may cause a radiation risk to their family members. However, no current regulations exist in Taiwan to limit the radiation dose among patients released post-treatment. This study assessed radiation exposure to caregivers of thyroid cancer patients treated with 131I to verify whether their doses exceed the 5-mSv limit per treatment session. The study population comprised 63 patients from four hospitals and their caregivers. Dose rates at a 1-m distance from patients were quantified before their release. Dosimetry data of caregivers were obtained using personalized thermoluminescent dosimetry badges. Upon the release of patients treated with 131I, Dose rates at a 1-m distance from the patients were 3.9–55 μSv/h. The radiation doses to caregivers ranged from 0.21 to 1.7 mSv after the patients released. When the 1-m dose rate of patients upon hospital release was 50 μSv/h, the highest possible radiation dose was assessed of 4.76 mSv for caregivers. In conclusion, as the dose rates at a 1-m distance from patients upon release were <50 μSv/h, the radiation dose received by their caregivers would be in accordance with the 5-mSv limit recommended by the International Atomic Energy Agency series 40, International Commission on Radiological Protection publication 94, and National Council on Radiation Protection and Measurements Report no. 155. 

Access source material through DOI

Involving carers in risk assessment: a study of a structured dialogue between mental health nurses and carers

Background: Involving carers is a key priority in mental health services. Carers report the sharing of service users’ safety information by mental health nurses is problematic and seldom takes place. Aims: The impact of an intervention on consensus between nurses and carers on perceptions of risk was investigated. Methods: Carer–nurse risk consensus scores were measured pre- and post-introduction of a structured dialogue (paired t-test/ANOVA). Carer experience with involvement was surveyed pre-test (n = 60) and compared with the post-test intervention group (n = 32) (chi-square tests of linear-by-linear association). Results: Consensus and perceptions regarding type and severity of risk did not change significantly for carers or nurses after engaging in a structured dialogue. Statistically significant differences were found with carers reporting higher levels of satisfaction with services in four out of six areas surveyed. Conclusions: Findings provide support for increasing carer contribution to discussions regarding risk. Further work to embed carer involvement in clinical practice is warranted. 

Access source material through DOI

Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads

Background and Objectives Persons with dementia (PWDs) often place greater importance on their care values (i.e. maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g. care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads. Design and Methods Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis. Results Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad. Implications Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education. 

Access source material through DOI

Safety of Care by Caregivers of Cancer Patients

Objectives: To describe common areas of threats to patient safety and quality of care when caregivers provide care. Recommendations for caregivers to enable them to provide safe care are included.; Data Sources: Research-based articles and reports.; Conclusion: The literature is limited in discussion on home safety issues for caregivers. Non cancer-specific literature provides some direction for recommendations for nurses to guide caregivers.; Implications For Nursing Practice: The home environment is an unregulated and uncontrolled site, and the safety risks families take are unknown. Professionals should assess the caregiver's knowledge and ability when providing caregiving guidance to ensure the patient is receiving safe and quality care. Nurses need to stress the importance of providing safe quality care and provide education and community resources.

Access source material through DOI

Improving patient safety by easing caregiver burden

The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties. Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment. Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Here, Mathias explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Risky wandering behaviors of persons with dementia predict family caregivers' health outcomes

Objectives: To examine the relationships between dementia persons' risky wandering behaviors and family caregivers' physical and mental health. Methods: A secondary analysis was conducted using the original cross-sectional data from180 dyads. The Risky Wandering and Adverse Outcome model assessed behaviors of eloping and getting lost outside the house for dementia persons. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and hierarchical regressions. Results: The mean age of caregivers was 56.01 years (SD = 13.8); 65% were female. Younger caregivers experienced greater physical fatigue and sleep disturbance. Presence of foreign helpers predicted a reduction in mental and physical fatigue of caregiver (β = −0.186, p <.05; β = 0.198, p <.05, respectively). Getting lost outside of the house influenced caregivers' mental fatigue (β = 0-0.215, p <.05); eloping behavior influenced caregivers' sleep disturbance (β = 0.231, p <.05). Care-receivers' activities of daily living affected caregivers' depressive symptoms (β = −0.179, p <.05). Conclusions: Dementia family caregiver physical and mental health problems have distinct predictors. Employing the Risky Wandering and Adverse Outcome model could inform policy makers regarding long-term care resources to improve dementia care.

Access source material through DOI

Service user and carer involvement in mental health care safety : raising concerns and improving the safety of services

BACKGROUND: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions. METHODS: UK service users, carers and health professionals (n=185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories. RESULTS: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience. CONCLUSIONS: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed. 

Access source material through DOI

People with Dementia Who Go Missing: A Qualitative Study of Family Caregivers Decision to Report Incidents to the Police

Walking and exercising are an important part of living well with dementia. People with dementia may have an inability to recognize familiar places, find a familiar location, or become disoriented and are more likely to become missing. The aim of this article is to identify what factors influence family caregivers of people with dementia reporting them missing to the police. We used a qualitative approach based on semi-structured interviews of 12 family caregivers of people with dementia in UK. We identify four factors that inhibit family caregivers from reporting a missing person incident to the police and three factors that prompt family caregivers to call the police. We discuss implications for improved policy and practices by law enforcement agencies, social services, health services, and non-government organizations.

Access source material through DOI

It's Interpersonal: Family Relationships, Genetic Risk, and Caregiving

My research program considers family relationships across the life course: in early life, with a focus on disease prevention -- leveraging genetic risk information and relationships to motivate health-promoting behaviors -- and in later life, with a focus on informal caregiving -- identifying characteristics of those most vulnerable to, or resilient from, caregiver stress. It is fortuitous, if not tragic, then, that my research and personal worlds collided during my mother's final 8 months of life. Here, I discuss how this experience has shifted my thinking within both arms of my research program. First, I consider the state of the science in family health history, arguing that the current approach which focuses on an individual's first- and second-degree relatives does not take us far enough into the relational landscape to activate communal coping with disease risk. Second, I discuss caregiving from a family systems perspective. My family's experience confirmed the importance of using a systems approach and highlighted a need to identify underlying variability in members' expectations of caregiving roles. In so doing, I capture the significance of understanding the multiple perspectives that frame a context in which families adapt and cope with risk and disease diagnoses.

Access source material through DOI

Caregiver Well-being and Patient Outcomes in Heart Failure: A Meta-analysis

Background: Despite evidence from the broader caregiving literature about the interdependent nature of the caregiving dyad, few studies in heart failure (HF) have examined associations between caregiver and patient characteristics. Objective: The aim of this study is to quantitatively synthesize the relationships between caregiver well-being and patient outcomes. Methods: The MEDLINE, PsycINFO, and CINAHL databases were searched for studies of adult HF patients and informal caregivers that tested the relationship between caregiver well-being (perceived strain and psychological distress) and patient outcomes of interest. Summary effects across studies were estimated using random effects meta-analysis following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Results: A total of 15 articles meeting inclusion criteria were included in the meta-analysis. Taking into account differences across studies, higher caregiver strain was associated significantly with greater patient symptoms (Fisher z = 0.22, P < .001) and higher caregiver strain was associated significantly with lower patient quality of life (Fisher z = -0.36, P < .001). Relationships between caregiver psychological distress and both patient symptoms and quality of life were not significant. Although individual studies largely found significant relationships between worse caregiver well-being and higher patient clinical event-risk, these studies were not amenable to meta-analysis because of substantial variation in event-risk measures. Conclusions: Clinical management and research approaches that acknowledge the interdependent nature of the caregiving dyad hold great potential to benefit both patients and caregivers.

Access source material through DOI

Caregiver determinants of patient clinical event risk in heart failure

Background: Preventing hospitalization and improving event-free survival are primary goals of heart failure (HF) treatment according to current European Society of Cardiology guidelines; however, substantial uncertainty remains in our ability to predict risk and improve outcomes. Although caregivers often assist patients to manage their HF, little is known about their influence on clinical outcomes. Aims: To quantify the influence of patient and caregiver characteristics on patient clinical event risk in HF. Methods: This was a secondary analysis of data using a sample of Italian adults with HF and their informal caregivers (n = 183 patient–caregiver dyads). HF patients were followed over 12 months for the following clinical events: hospitalization for HF, emergency room visit for HF or all-cause mortality. Influence of baseline caregiver- and patient-level factors (patient and caregiver age; dyad relationship type; patient New York Heart Association (NYHA) Class, cognition, and comorbidities; and caregiver strain, mental health status, and contributions to HF self-care) on patient risk of death or hospitalization/emergency room use was quantified using Cox proportional hazards regression. Results: Over the course of follow up, 32.8% of patients died, 19.7% were hospitalized for HF and 10.4% visited the emergency room. Higher caregiver strain, better caregiver mental health status and greater caregiver contributions to HF self-care maintenance were associated with significantly better event-free survival. Worse patient functional class and greater caregiver contributions to patient self-care management were associated with significantly worse patient event-free survival. Conclusion: Considering caregiving factors together with patient factors significantly increases our understanding of patient clinical event risk in HF.

Access source material through DOI

Medication administration by caregiving youth: An inside look at how adolescents manage medications for family members

Introduction: Children take on the role of family caregiver throughout the world. No prior published research exists surrounding the particular circumstances of the task of medication administration and management by these youth, which was explored in this study. Methods: A series of focus groups were conducted using semi-structured interviews of 28 previously identified caregiving youth ages 12–19 years old who live in the United States. Data analysis followed guidelines of conventional content analysis. Results: The following categories emerged about youth caregivers handling medications: 1) tasks involve organizational and administrative responsibilities; 2) youth have varying degrees of knowledge pertaining to these medications; 3) most share responsibility with other family members; 4) they lack formal education about their responsibilities; 5) multiple challenges exist relating to this task; 6) managing medications is associated with emotional responses; and 7) possible safety issues exist. Conclusions: These responsibilities represent a unique hardship and merit support and research from the medical, healthcare, legislative, and public health communities, among others.

Access source material through DOI

The Treatment of Informal Care-Related Risks as Social Risks: An Analysis of the English Care Policy System

The social risk literature examines the extent to which states have provided social protection against the 'old' social risks of the post-war era and the 'new' social risks affecting post-industrial capitalist states. In this paper the contingency of the provision of informal care to people aged 65 and over is discussed. The paper deconstructs the concept of social risk to determine the characteristics and processes which contribute to states recognising specific contingencies as social risks which require social protection. This conceptualisation is applied to make the case that care-related risks associated with the informal care of older people should be recognised and treated as social risks by states. Data from a qualitative study of the English care policy system provide empirical evidence that informal care-related risks are recognised, but not treated, as social risks in England. The findings reveal informal carers, and the older people they care for, receive inadequate and inconsistent statutory protection against the poverty and welfare risks they face. Furthermore the design and operationalisation of the English care policy system generates risks for care relationships.

Access source material through DOI

Medicines management issues in dementia and coping strategies used by people living with dementia and family carers: A systematic review

Objectives: Medicines play a key role in the lives of people with dementia, primarily to manage symptoms. Managing medicines is complex for people with dementia and their family carers and can result in multiple problems leading to harm. We conducted a systematic review to identify and model medication issues experienced and coping strategies used by people with dementia and/or family carers. Methods: Eleven general databases and four systematic review databases were searched. Studies were quality assessed using an established framework and thematically analysed. Results: Twenty‐one articles were included in this study, and four domains affecting medication use were identified: cognitive, medication, social and cultural, and knowledge/educational and communication. People with dementia reported medication issues in all four domains, but few coping strategies were developed. Family carers reported issues and coping strategies related to the medication and knowledge/educational and communication domains. Common issues with regards to knowledge and communication about medicines remain unresolved. The “voices” of people with dementia appeared largely missing from the literature so were in‐depth understanding of how, whether, and in which circumstances coping strategies work in managing medicines. Conclusions: Medicines management is a complex set of activities and although current coping strategies exists, these were primarily used by family carers or the person with dementia‐carer dyad. Health and social care practitioners and researchers should seek to understand in‐depth the “mechanisms of action” of existing coping strategies and actively involve people with dementia as co‐producers of knowledge to underpin any further work on medicines management.

Access source material through DOI

Crossing a Line: A narrative of risk-taking by older women serving as caregivers

Background :Caregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers. Aim: To explore the everyday experiences of older adults serving as primary informal caregivers to significant others. Methods: A process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative. Results: These caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative. Conclusion and significance: The everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.

Access source material through DOI

Patient safety in community dementia services: what can we learn from the experiences of caregivers and healthcare professionals?

Objectives: this study aims to explore how patient safety in community dementia services is understood by caregivers, and healthcare professionals. Methods: cross-sectional analysis of guided one-to-one interviews with 10 caregivers, and 10 healthcare professionals. Results: caregivers and healthcare professionals identified a range of issues including medication errors, mis-communication between professionals, unclear service pathways and the effects of stress on caregivers’ behaviour. Caregivers and professionals differed in their attitudes to balancing safety with patient autonomy and who is responsible for managing safety. Conclusions: this article helps to define the nature of safety issues in the context of community care for people with dementia. In contrast to hospital medicine, where the ideal treatment world is safe with all risks managed or minimised, in dementia some risks are actively taken in the interests of promoting autonomy. Caregivers’ views differ from those of health professionals but both parties see potential for collaborative working to manage risk in this context, balancing the promotion of autonomy with the minimisation of potential harm.

Access source material through DOI

Association between Falls and Caregiving Tasks among Informal Caregivers: Canadian Community Health Survey Data

Falls are a common cause of morbidity and mortality in older adults. While research has explored the relationship between older care recipient falls and caregiver health, there has been little investigation of the relationship between caregiving tasks and falls in older caregivers. This study assessed associations between falls and caregiving frequency and type of caregiving tasks among informal older caregivers. Data from the Canadian Community Health Survey on Healthy Aging (Public Use Microdata File 2008-2009) (n = 2,934) were examined, using descriptive and logistic regression analyses. Higher frequency of caregiving was positively associated with falls, although those who performed household chores were less likely to report falling in the past year. Results suggest there may be an association between factors related to caregiving and falls in older caregivers. More research using longitudinal and experimental data is needed to better understand the relationship between caregiving tasks and falls in older caregivers.

Access source material through DOI

Facilitating aging in place: A qualitative study of practical problems preventing people with dementia from living at home

Although the majority of people with dementia wish to age in place, they are particularly susceptible to nursing home admission. Nurses can play an important role in detecting practical problems people with dementia and their informal caregivers are facing and in advising them on various ways to manage these problems at home. Six focus group interviews (n = 43) with formal and informal caregivers and experts in the field of assistive technology were conducted to gain insight into the most important practical problems preventing people with dementia from living at home. Problems within three domains were consistently described as most important: informal caregiver/social network-related problems (e.g. high load of care responsibility), safety-related problems (e.g. fall risk, wandering), and decreased self-reliance (e.g. problems regarding self-care, lack of day structure). To facilitate aging in place and/or to delay institutionalization, nurses in community-based dementia care should focus on assessing problems within those three domains and offer potential solutions.

Access source material through DOI

The last taboo: The experience of violence in first-episode psychosis caregiving relationships

Objectives: Informal caregiving relationships play an important role in facilitating recovery outcomes in psychosis. The relationship can serve as a source of positive experiences that co-exist alongside common challenges typically associated with mental health problems. People with psychosis, when compared to the general population, are more likely to perpetrate acts of violence, a relationship that is particularly evident during the first psychosis episode. Although victims of service user violence are typically people already known to them, such as informal carers, there remains a lack of understanding about their caring experiences and needs. This study sought to address gaps in the literature by exploring the subjective accounts of informal carers supporting a relative experiencing their first episode of psychosis who has also behaved violently towards them.; Design: A cross-sectional design was employed.; Methods: Individual semi-structured interviews, which were audio recorded and later transcribed for analyses, were undertaken with a convenience sample of eight carers drawn from a specialist early psychosis service. Interview questions focused on their experiences of patient violence, the subjective impact, and coping strategies. An interpretative phenomenological approach was used to analyse the data.; Results: Participants were mostly living with their relative with psychosis and were typically female, parents, and from a black and minority ethnic background. Data analyses identified seven key themes from participant interviews including the lack of predictability over when the violence occurred, being scared and fearful, keeping quiet about what happens at home and in the caregiving relationship, and staying safe.; Conclusions: Reports by informal carers about experiencing violence and victimization from their relatives with psychosis are an important issue in some caregiving relationships during the first episode. Developing a more informed understanding of the specific needs of these carers and the caregiving relationship is indicated. The implications for service providers are discussed.; Practitioner Points: Carers were exposed to a broad range of patient violence, which included being kicked and having weapons used against them. The violence typically occurred within carers' homes, when no other people were around. Patient violence impacted negatively on carer emotional and physical functioning, which included leaving carers living in fear of their own safety and what might become of their relative. The results highlight the importance of routinely asking first-episode carers about their experience of patient violence. The development of interventions (e.g., identification of early triggers, de-escalation) that are able to take account of the ongoing nature and complexity of the caregiving relationship but are purposefully aimed at supporting carers to remain safe in their relationship should be explored for their impact.

Access source material through DOI

Violence Towards Family Caregivers by Their Relative with Schizophrenia in Japan

There have been several violence-related deaths in Japan due to family violence by persons with severe mental illness against their caregivers. However, it is not often acknowledged that these violent acts are mainly directed at family members. This study aimed to clarify what acts of violence family caregivers experienced from their relative with schizophrenia, and how frequently these violent incidents occurred in their lifetime. We also examined caregivers’ thoughts of death about themselves and their relatives, as well as their consultation efforts and escape from the violence perpetrated by their relative. Of the 277 caregivers, 87.7% had experienced psychological violence and 75.8% had experienced physical violence perpetrated by their relative. Of 210 caregivers who had experienced physical violence, 26.7% had thought of murder-suicide and 31.0% had wished for their relative’s death. Family violence by persons with schizophrenia is not rare but a common occurrence in Japan and may have fatal consequences. 

Access source material through DOI

A prospective risk assessment of informal carers' medication administration errors within the domiciliary setting

Increasingly, medication is being administered at home by family and friends of the care-recipient. This study aims to identify and analyse risks associated with potential drug administration errors made by informal carers at home. We mapped medication administration at home with a multidisciplinary team that included carers, health care professionals and patients. Evidence-based risk-analysis methodologies were applied: Healthcare Failure Modes and Effect Analysis (HFMEA), Systematic Human Error Reduction and Prediction Analysis (SHERPA) and Systems-Theoretic Accident Model and Processes (STAMP). The process of administration comprises seven sub-processes. Thirty-four possible failure modes were identified and six of these were rated as high risk. These highlighted that medications may be given with a wrong dose, stored incorrectly, not discontinued as instructed, not recorded, or not ordered on time, and often caused by communication and support problems. Combined risk analyses contributed unique information helpful to better understand the medication administration risks and causes within homecare. Practitioner Summary: Increasingly, medication is being administered at home by family and friends of the care-recipient. This study identifies risks associated with potential drug administration errors made by informal carers at home through consensus-based quantitative techniques. The different analyses contribute unique information helpful to better understand the administration risks and causes.;

Access source material through DOI

Discharge Planning and Teaching

This article is the fifth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fifth video can be accessed at

Access source material through DOI

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors

Background: The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden.; Methods: Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable.; Results: Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4).; Conclusions: Prevalence of risk of abuse is high among family caregivers. Our study has found risk factors in family caregivers that are preventable to an extent, namely: anxiety and feelings of burden. It is essential to become aware of these risk factors and their causes to intervene and help primary as well secondary prevention

Access source material through DOI

Teaching Caregivers to Administer Eye Drops, Transdermal Patches, and Suppositories

This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at 

Access source material through DOI

Medication Management for People with Dementia

This article is the fourth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fourth video can be accessed at .

Access source material through DOI

Managing Complex Medication Regimens

This article is the first in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The first video can be accessed at

Access source material through DOI

Adult social care: consultation analysis

This document analyses the responses received to the Law Commission’s consultation paper, Adult Social Care, published on 24 February 2010. The consultation paper set out 57 provisional proposals and 25 consultation questions on reforming the legal framework for adult social care. The overall aim of the reform is to provide a clearer, modern and more cohesive legal framework for adult social care. Publication of the consultation paper was followed by a 4 month period of public consultation, during which time 72 consultation events across England and Wales were attended and 231 formal responses were received from a wide range of consultees. 

Original source (some source materials require subscription or permission to access)

Global action against dementia: G8 Dementia Summit communique

The G8 Health Ministers met at the G8 Dementia Summit in London on 11 December 2013 to discuss how to shape an effective international response to dementia. They note the socio-economic impact of dementia globally, and that costs are expected to increase significantly if therapies to prevent dementia and improve care and treatment are not developed and implemented. This communique concerns issues relating to research and innovation; leadership, cross-sector partnerships and knowledge translation; supporting people affected by dementia and their carers; and reducing stigma and fear. The communique is signed by the G8 Health and Science Ministers (from the UK, Canada, France, Germany, Italy, Japan, Russia and the United States). They conclude that they will continue their efforts to work together in line with the commitments in the Declaration and Communiqué, but recognise that dementia is an issue which affects people in countries throughout the world. Consequently, they encourage  all countries and multilateral organisations to come together and take action to reduce the risk to health and to economic development which dementia currently presents. 

Original source (some source materials require subscription or permission to access)

Outcomes for users and carers in the context of health and social care partnership working : from research to practice

There is currently much policy emphasis on both partnership working between health and social services in the UK and on the outcomes delivered by services. This article provides an account of two consecutive projects centred on these two themes. The first project, at the University of Glasgow, sought to address the lack of evidence about the outcomes delivered to service users by partnerships. Following from this project, the Joint Improvement Team of the Scottish Government commissioned the researchers to develop a toolkit to involve users and unpaid carers in performance management in community care in Scotland. The remit of this second project expanded during 2007 as it became linked with the development of the emerging National Outcomes Framework for community care in Scotland. This article outlines the outcomes‐based piloting work currently under way in Scotland.

Access source material through DOI

Managing challenging behaviour

The aim of this drama based video is to consider how care staff can work with service users who may be aggressive or violent and how to manage challenging behaviour. It will examine the following areas: what is challenging behaviour?; who can present challenging behaviour?; reasons for challenging behaviour; prediction and prevention; undertaking proper risk assessments; how to respond appropriately; verbal responses; and body language. The video also advises carers on the best ways of keeping themselves and other service users safe in unsafe situations, and why it is important to try to understand that there may be unknown reasons for challenging behaviour.

Original source (some source materials require subscription or permission to access)

High score on the Relative Stress Scale, a marker of possible psychiatric disorder in family carers of patients with dementia

Objective: To compare the scores on the Relative Stress Scale (RSS) with those on the General Health Questionnaire (GHQ) and the Geriatric Depression Scale (GDS), and to establish a cut-off score for RSS in order to distinguish carers with symptoms of psychiatric disorders from those without.

Methods: One hundred and ninety-four carers of 194 patients suffering from dementia according to ICD-10 were included in the study. Burden of care was assessed by the 15-items RSS, and psychiatric symptoms by means of the GHQ-30 and the 30-items GDS. A case score above 5 on GHQ and above 13 on GDS were used to define carers with probable psychiatric morbidity. Sensitivity (SS), specificity (SP), accuracy and likelihood ratio for a positive test (LR+) were calculated for different cut-points of the RSS.

Results: Fifty-six percent of the carers had a GHQ score above 5, and 22% had a GDS score above 13. A two-step cluster analysis using 192 of the 194 carers, identified three groups of carers; a low risk group for psychiatric morbidity (LRG), 82 carers with GHQ ≤ 5 and GDS ≤ 13; a medium risk group (MRG), 69 carers with GHQ > 5 and GDS ≤ 13; and a high-risk group (HRG), 40 carers with GHQ > 5 and GDS > 13. The optimal RSS cut-off to distinguish between the LRG and the others was > 23 (SS 0.72, SP 0.82, accuracy 0.76, LR + 4.0), whereas the optimal cut-off to separate the HRG from the others was >30 (SS 0.74, SP 0.87, accuracy 0.84, LR + 5.7).

Conclusion: The RSS is a useful instrument to stratify carers according to their risk of psychiatric morbidity. Copyright © 2006 John Wiley & Sons, Ltd.

Access source material through DOI

Making headway

There are few services provided for people with brain injuries with the result that too much pressure is placed on their carers. Talks to a social worker about the difficulties she had in obtaining support for her client and his carer.

Original source (some source materials require subscription or permission to access)

People with learning disabilities, carers and care workers awareness of health risks and implications for primary care

Background. People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care.

Objectives. To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease.

Methods. A qualitative approach was adopted incorporating semi-structured interviews based on vignettes. Twenty people with mild learning disabilities, 10 carers and 10 care workers were recruited. Data were analysed using Miles and Huberman's five-fold process.

Results. In total, 29 women and 11 men were interviewed. A range of health risks was identified with different patterns across groups. There were common concerns around diet. Approximately 50% of participants also had worries regarding ‘excessive computer usage’, often related to physical inactivity, and a similar proportion identified social isolation as a risk. The importance of safeguarding personal autonomy was stressed in all three groups.

Conclusion. We demonstrated the feasibility of engaging with people with mild learning disabilities regarding health improvement. Participants recognized not only risks but also the subtle interplay of different factors, reflecting a grasp of the complexity of health promotion. Approaches within primary care to health improvement need to acknowledge this level of awareness.

Access source material through DOI

A bulletin on the personal well-being of people who need care and support and carers who need support, 2014-15

This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only. 

Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.

Original document (pdf) on Welsh Government website.

Predictors of entering 24-h care for people with Alzheimer's disease: results from the LASER-AD study

OBJECTIVES: Many studies have investigated predictors of people with dementia entering 24-h care but this is the first to consider a comprehensive range of carer and care recipient (CR) characteristics derived from a systematic review, in a longitudinal cohort study followed up for several years.

METHODS: We interviewed 224 people with Alzheimer's disease (AD) and their carers, recruited to be representative in terms of their severity, sex and living situation as part of the LASER-AD study; and determined whether they entered 24-h care in the subsequent 4.5 years. We tested a comprehensive range of characteristics derived from a systematic review, and used Cox proportional hazard regression to determine whether they independently predicted entering 24-h care.

RESULTS: The main independent predictors of shorter time to enter 24-h care were the patient being: more cognitively or functionally impaired (hazard ratio (HR) = 1.09; 95% CI = 1.06-1.12) and (HR = 1.04 95% CI = 1.03-1.05), having a paid versus a family carer (HR = 2.22; 95% CI = 1.39-3.57), the carer being less educated (HR = 1.43; 95% CI = 1.12-1.83) and spending less hours caring (HR = 1.01; 95% CI = 1.00-1.01).

CONCLUSION: As having a family carer who spent more time caring (taking into account illness severity) delayed entry to 24-h care, future research should investigate how to enable carers to provide this. Other interventions to improve patients' impairment may not only have benefits for patients' health but also allow them to remain longer at home. This financial benefit could more than offset the treatment cost. Copyright 2009 John Wiley & Sons, Ltd.

Access source material through DOI

Updated review of research on risk and adult social care in England

This paper updates an earlier extensive review of research into the incidence and management of risk in adult social care in England, and addresses gaps identified in the earlier review. This paper aimed to identify only empirical research published since 2007 and concentrated on research conducted and published within the UK.

The review:

  • Identified that there is little research on how wider socio-economic factors influence users' experiences or professional strategies; new research on issues of gender focus more on practitioners than service-user perspectives.
  • Found that studies draw attention to the tensions and dilemmas professionals experience when trying to balance a positive approach to risk with their statutory duties to protect service users.
Original source (some source materials require subscription or permission to access)

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers' role perception and supportive care needs

Background: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer

Access source material through DOI

Improving dementia services in England: an interim report

The National Dementia Strategy, launched on 3 February 2009, aims to transform the quality of dementia care in England. It sets out initiatives designed to make the lives of people with dementia, their carers and families better and more fulfilled. It aims to do this by increasing awareness of dementia, ensuring early diagnosis and intervention and radically improving the quality of care that people with the condition receive. This interim report into the implementation of the Strategy identified three risk areas where action is urgently needed. These are: inadequate information on costing leading to a risk that local decisions may not be well-evidenced; a lack of leadership, particularly at local commissioning level; a lack of strong levers such as benchmarking means there is a risk that dementia will not be given the priority status required. The report makes ten recommendations aimed at ameliorating these risks.

Original source (some source materials require subscription or permission to access)

Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS): study protocol for a feasibility randomized controlled trial

Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.

Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.

Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.

Trial registration: Current Controlled Trials ISRCTN63590486.

Access source material through DOI

Can Fire and Rescue Services and the National Health Service work together to improve the safety and wellbeing of vulnerable older people? Design of a proof of concept study

Background: Older adults are at increased risk both of falling and of experiencing accidental domestic fire. In addition to advanced age, these adverse events share the risk factors of balance or mobility problems, cognitive impairment and socioeconomic deprivation. For both events, the consequences include significant injury and death, and considerable socioeconomic costs for the individual and informal carers, as well as for emergency services, health and social care agencies. Secondary prevention services for older people who have fallen or who are identifiable as being at high risk of falling include NHS Falls clinics, where a multidisciplinary team offers an individualised multifactorial targeted intervention including strength and balance exercise programmes, medication changes and home hazard modification. A similar preventative approach is employed by most Fire and Rescue Services who conduct Home Fire Safety Visits to assess and, if necessary, remedy domestic fire risk, fit free smoke alarms with instruction for use and maintenance, and plan an escape route. We propose that the similarity of population at risk, location, specific risk factors and the commonality of preventative approaches employed could offer net gains in terms of feasibility, effectiveness and acceptability if activities within these two preventative approaches were to be combined.

Methods/Design: This prospective proof of concept study, currently being conducted in two London boroughs, (Southwark and Lambeth) aims to reduce the incidence of both fires and falls in community-dwelling older adults. It comprises two concurrent 12-month interventions: the integration of 1) fall risk assessments into the Brigade's Home Fire Safety Visit and 2) fire risk assessments into Falls services by inviting older clinic attendees to book a Visit. Our primary objective is to examine the feasibility and effectiveness of these interventions. Furthermore, we are evaluating their acceptability and value to key stakeholders and services users.

Discussion: If our approach proves feasible and the risk assessment is both effective and acceptable, we envisage advocating a partnership model of working more broadly to fire and rescue services and health services in Britain, such that effective integration of preventative services for older people becomes routine for an ageing population.

Access source material through DOI

Direct payments guidance: Community Care, Services for Carers and Children's Services (Direct Payments (Wales) Guidance 2011

Guidance to help local authority social services in making, managing and administering direct payments. The guidance applies to children's adults' services and services for carers. It explains how direct payments schemes should be developed locally, how issues of consent, capacity and ability to manage should be approached, and how direct payments should be used. It sets out specific delivery issues, including: choice and risk; health and safety; close relatives; direct payments recipients as employers; and Criminal Record Checks. It then explains where additional support is required and available, describes the monitoring and review process, and includes a section on troubleshooting . Further information and contacts are included in the annexes. The guidance replaces the Direct Payments Policy and Practice Guidance 2004.

Original source (some source materials require subscription or permission to access)

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

Access source material through DOI

Best practice in fall prevention: roles of informal caregivers, health care providers and the community

Falls are an important public health problem for older adults, resulting in significant morbidity and mortality, as well as healthcare costs. Evidence supports the assessment of older adults' fall risks and implementation of interventions to reduce these risks. Older adults are the key stakeholder in preventing falls, but need the support of their informal caregivers, healthcare providers, and community groups. This article addresses the roles of these additional stakeholders in providing and supporting best practices in fall prevention. Together these stakeholders can assist older adults in self-management of fall prevention, based on the preferences of the individual, local resources, and available programmes and healthcare services.

Access source material through DOI

Dysphagia: the challenge of managing eating and drinking difficulties in children and adults who have learning disabilities

This review explores some of the key issues relevant to children and adults who have dysphagia, or eating, drinking and swallowing difficulties, and a learning disability. It explores the methods for attempting to identify this area of difficulty effectively, and reflects on some of the other issues that may affect management, such as carer support and training and use of appropriate communication strategies to support and enable participation from the client with learning disability.

Access source material through DOI

A terminal diagnosis: the carers' perspective

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.

Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

Access source material through DOI

Working with carers in the Bangladeshi community

Focuses on the study conducted by the University of Wales which identifies the social care needs of informal carers for dependent adult relatives from a Bangladeshi community in Wales. Health risk assessment of the community; Assessment of the health care services in the community; Necessity for community nurses to be culturally proficient through the provision of accurate education.

Self-directed support

This audit report examines councils’ progress in implementing the self-directed support strategy in Scotland and their readiness for the Social Care (Self-directed Support) (Scotland) Act 2013. It focuses on councils because they have the lead role, working in partnership with users, carers, third and private sector providers, NHS boards and other organisations. The audit work was carried out between December 2013 and February 2014. It involved a review of a range of published information, case studies in four councils, and interviews with staff and representatives from range of public, private and third sector organisations. The report highlights that councils still have a substantial amount of work to do to fully implement self-directed support. Some have made slower progress than others and they will have to implement the cultural and practical changes more quickly over the next few years. Councils need effective leadership from senior managers and councillors and continued support from the Scottish Government.

Original source (some source materials require subscription or permission to access)

Experience of burden in carers of people with dementia on the margins of long-term care

Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.

Design: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers.

Methods: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support.

Results: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult–child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden.

Conclusion: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support. Copyright © 2015 John Wiley & Sons, Ltd.

Access source material through DOI

Exploring the risk management strategies of informal carers of mental health service users

This paper presents the finding of an exploratory study examining the risk management strategies of informal carers of mental health service users. Thirteen carers from two cities were interviewed in depth using a semi-structured interview schedule. Participants had been informal carers between four and 20 years and supported users with formal diagnoses of schizophrenia, manic depression and depression. A grounded theory approach was followed to collect and examine data and to test the resulting models of risk management. Three models of risk management are discussed and relate to a wide range of risk posed and faced by the carers' users. The results of this study are compared with those of an earlier study into the risk management strategies of 22 service users with similarities and differences highlighted. 40 refs. [Abstract]

Access source material through DOI

Stressors and common mental disorder in informal carers – An analysis of the English Adult Psychiatric Morbidity Survey 2007

This study investigates potential explanations of the association between caring and common mental disorder, using the English Adult Psychiatric Morbidity Survey 2007. We examined whether carers are more exposed to other stressors additional to caring – such as domestic violence and debt – and if so whether this explains their elevated rates of mental disorder. We analysed differences between carers and non-carers in common mental disorders (CMD), suicidal thoughts, suicidal attempts, recent stressors, social support, and social participation. We used multivariate models to investigate whether differences between carers and non-carers in identifiable stressors and supports explained the association between caring and CMD, as measured by the revised Clinical Interview Schedule.

The prevalence of CMD (OR = 1.64 95% CI 1.37–1.97), suicidal thoughts in the last week (OR = 2.71 95% CI 1.31–5.62) and fatigue (OR = 1.33 95% CI 1.14–1.54) was increased in carers. However, caring remained independently associated with CMD (OR = 1.58 1.30–1.91) after adjustment for other stressors and social support. Thus caring itself is associated with increased risk of CMD that is not explained by other identified social stressors. Carers should be recognized as being at increased risk of CMD independent of the other life stressors they have to deal with. Interventions aimed at a direct reduction of the stressfulness of caring are indicated. However, carers also reported higher rates of debt problems and domestic violence and perceived social support was slightly lower in carers than in non-carers. So carers are also more likely to experience stressors other than caring and it is likely that they will need support not only aimed at their caring role, but also at other aspects of their lives.

Access source material through DOI

Specialist clinical assessment of vulnerable older people: outcomes for carers from a randomised controlled trial

‘Caring for carers’ is high on the United Kingdom policy agenda for community care. Although recent policy advocates the provision of services directly to the carer, research suggests that an alternative way of helping carers is through targeting enhanced services towards the cared-for person. This paper reports a randomised controlled trial of the effects on carer distress of an additional specialist clinical assessment for vulnerable older people at risk of residential or nursing home placement. The sample was composed of 142 informal carers of older people, randomly assigned to receive either the additional specialist assessment or the usual social services assessment. Carers were assessed using the modified Social Behaviour Assessment Schedule (SBAS), and data were also collected on older peoples' service use throughout the study period. Regression analyses indicated that changes in older peoples' behaviour, as opposed to carer or service-related factors, predicted changes in carer distress, and that the carers of the older people who experienced depressive symptoms received the greatest benefit from the specialist assessment. The study suggests that an effective means of improving outcomes for carers may be to target services towards the distressing behaviours of the person for whom they care, with symptoms of depression being particularly important.

Access source material through DOI

The social construction of risk by community psychiatric nurses and family carers for people with dementia

This paper examines the conversational and discursive processes through which situations are constructed as a risk by informal carers and community psychiatric nurses working with people who have dementia. The data were taken from 24 tape recordings of domiciliary meetings between primary informal carers for people with dementia and their community psychiatric nurse (CPN). Data were analysed using techniques developed from conversation analysis and discourse analysis. The analysis identifies four stages associated with the construction of risk by informal carers and CPNs. These stages are fully discussed in relation to the provision of care.

Access source material through DOI

Association between informal caregiving and cellular aging in the Survey of the Health of Wisconsin: The role of caregiving characteristics, stress, and strain

The pathophysiological consequences of caregiving have not been fully elucidated. We evaluated how caregiving, stress, and caregiver strain were associated with shorter relative telomere length (RTL), a marker of cellular aging. Caregivers (n = 240) and some noncaregivers (n = 98) in the 2008–2010 Survey of the Health of Wisconsin, comprising a representative sample of Wisconsin adults aged 21–74 years, reported their sociodemographic, health, and psychological characteristics. RTL was assayed from blood or saliva samples. Median T and S values were used to determine the telomere-to-single copy gene ratio (T/S) for each sample, and log(T/S) was used as the dependent variable in analyses. Multivariable generalized additive models showed that RTL did not differ between caregivers and noncaregivers (difference in log(T/S) = −0.03; P > 0.05), but moderate-to-high levels of stress versus low stress were associated with longer RTL (difference = 0.15; P = 0.04). Among caregivers, more hours per week of care, caring for a young person, and greater strain were associated with shorter RTL (P < 0.05). Caregivers with discordant levels of stress and strain (i.e., low perceived stress/high strain) compared with low stress/low strain had the shortest RTL (difference = −0.24; P = 0.02, Pinteraction = 0.13), corresponding to approximately 10–15 additional years of aging. Caregivers with these characteristics may be at increased risk for accelerated aging. Future work is necessary to better elucidate these relationships and develop interventions to improve the long-term health and well-being of caregivers.

Access source material through DOI

Adapting a SSKIN bundle for carers to aid identification of pressure damage and ulcer risks in the community

If pressure damage is identified and addressed at an early stage, it may be reversed. Otherwise, it may quickly progress into a serious deep tissue injury. In the community, most daily skin care is undertaken by formal and informal carers. They therefore need to know how to identify signs that pressure ulcers may develop and what immediate actions to take. NICE guidance on pressure ulcer prevention is too extensive to be a simple tool for carers, so a SSKIN bundle was adapted for community use. This ensures carers know how to prevent and identify pressure damage, and includes skin care, repositioning and use of equipment. Carers need training. This is the responsibility of all involved with the patient, including healthcare and local authority services. [ABSTRACT FROM AUTHOR];Copyright of British Journal of Community Nursing is the property of MA Healthcare Limited and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission.

Access source material through DOI

Principles of person centred care: part 2

Designed exclusively for those providing care within the care home, this two part title introduces carers to the values that underpin person-centred care. It assists them to develop their understanding of how principles of care should be reflected in their day-to-day practices by exploring the values of individuality, rights, choice, privacy, independence, dignity, respect and partnership. It goes on to look at the right service users have to take risks in their lives and how the care plan and risk assessment can assist to protect individuals from harm

Original source (some source materials require subscription or permission to access)

Impact of Providing Care on the Risk of Leaving Employment in Canada

Population aging is likely to lead to an increase in the number of people in need of assistance. It is well known that a large part of this assistance originates, and will continue to originate, from the network of relatives and friends. However, the effects of the provision of care on individuals' employment trajectories when this care is combined with employment of varying intensity or with childcare responsibilities have rarely been examined. The present study used proportional hazards models with the General Social Survey, Cycles 20 and 21, to assess the impact of providing care to a partner, a parent or parent-in-law, another relative, or a non-relative on the risk of leaving employment. The analyses show that providing care to a parent or parent-in-law increases the probability of leaving employment only among women employed full-time and among men and women who have no children or only adult children.

Access source material through DOI

Does physical activity reduce burden in carers of people with dementia? A literature review

Objectives: Physical exercise has been associated with a range of positive outcomes including improvements in psychological well-being. The aim of the present study was to review current evidence on the effects of physical activity interventions for carers of people with dementia.

Methods: Systematic review. We searched electronic databases and key articles of studies that have evaluated the effectiveness of physical activity interventions in improving psychological well-being in carers of people with dementia. Relevant papers were scored according to established criteria set by the Cochrane Review Group. Selection criteria for studies were a randomized controlled trial (RCT) design, and comparing physical activity with a control group receiving no specific physical activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias.

Results: A total of four RCTs met the inclusion criteria. Studies evaluated home-based supervised physical activity of low to moderate intensity, which included either aerobic exercise, or endurance training. Pooled data showed that physical activity reduced subjective caregiver burden in carers, standardized mean difference −0.43; 95% confidence interval (CI) −0.81 to −0.04, in comparison to a control group of usual care.

Conclusions: There is evidence from two RCTs that physical activity reduces subjective caregiver burden for carers of people with dementia. Although statistically significant, the observed benefits should be interpreted with caution as the studies conducted so far have limitations. Further high-quality trials are needed for evaluating the effectiveness of physical activity in improving psychological well-being in carers of people with dementia. Copyright © 2014 John Wiley & Sons, Ltd.

Access source material through DOI

Carers UK: why a social contract is needed

Carers UK is calling for a social contract for care following research it launched last month. Evidence from reports – the Carers, Employment and Services series – shows the need for a radical shake-up to the way we support carers.

Carers have greater risk of ill health and unemployment according to the latest comprehensive research for Carers UK. Sue Yeandle outlines what reforms are needed. 

Original source (some source materials require subscription or permission to access)

Social participation: how does it vary with illness, caring and ethnic group?

It has long been accepted that lack of social participation in wider society is one aspect or one definition of poverty. Current concerns with the extent and distribution of social capital as both a measure of a good society and as means to upward mobility also emphasise the importance of social contacts and networks to the well-being of individuals and communities. While research has often focused on ‘civic participation’ and the measurement of trust, more informal social bonds are also a crucial part of individuals’ social capital. Moreover, informal social capital or social participation might be particularly important for those whose circumstances make them already more vulnerable to marginalisation, exclusion or poverty. For example, social interaction has been argued to be conducive to better outcomes for those with health problems; and there is an extensive literature which aims to chart and explain the role of ‘ethnic capital’ in the life chances of minority ethnic groups. I use the British Home Office Citizenship Survey 2001 for England and Wales to explore the impact on four aspects of lack of social engagement of long-term illness, caring for someone with such an illness, and ethnicity. Controlling for a range of characteristics and examining the relationships separately for men and women there is evidence that between them, the four measures reveal an underlying propensity for reduced social contact. Other things being equal, illness has little association with reduced social participation, but caring does seem to affect opportunities for sociability. Members of some ethnic groups are less likely to engage in neighbourly social visiting than others, and these differences are little affected by income level. By contrast differences in ‘going out’ across groups can largely be explained by differences in income. Overall, social engagement among male Bangladeshis and to a lesser extent Pakistanis is high, whereas Black Africans and Black Caribbeans, especially women, are notable for their lack of opportunities for social engagement compared with their otherwise similar peers. They would appear to be particularly at risk of social isolation, with consequences for their current and future welfare. 

Original source (some source materials require subscription or permission to access)

Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being

Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.

Access source material through DOI

The extent and limits of solidarity in Dutch health care

Solidarity and equal access are twin principles in the Dutch health care system: solidarity between the rich and poor and among people with high and low risks formally guarantees equal access to health care services. However, in the past few years government policies, guided by the ideology of market reform and free choice, have resulted in patterns of inequality that favour privately insured over sickness fund insured. In the meantime, the level of public support for the principles of solidarity and equal access is dropping. A significantly larger portion of the Dutch people now believes that it would be too costly to grant everyone the right to all medical treatments possible. An important reason for the decline of solidarity and equal accessibility is the scarcity of resources. The scarcity of resources and the waiting lists resulting from it will reduce the extent of the benefits package and the access to the care services of the health system. The better-off will have the resources to receive care services that are not part of the basic package. Moreover, the scarcity of resources will affect the readiness in society to provide informal care. Opposed to the compulsory macro solidarity of the health insurance system, informal care is based on a voluntary kind of solidarity in which personal choice plays an important role. Waiting lists and diminishing professional support weaken this readiness, as such support is a necessary condition for informal carers to keep caring for their relatives and friends. Because the informal care system is a necessary supplement to the formal system of care, the lack of help offered by the latter will in the end endanger the solidarity not only in informal care, but in the institutional care system as well.

Access source material through DOI

Working family carers in Portugal: between the duty and the burden of caring for old vulnerable people

This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.

Access source material through DOI

Family lifeline

Hospice nurses are finding new ways to care for bereaved people, reports Jennifer Trueland

Bereavement care is a vital but under-funded part of palliative care services, and there is growing evidence that people who have lost a loved one are at increased risk of serious illness. The Hospice of St Francis in Berkhamsted is providing innovative care for families of patients before and after death. ‘Life-changing’ initiatives include cookery classes and pony rides.

Access source material through DOI

Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project ( This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies

Access source material through DOI

Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.

Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.

Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.

Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.

Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.

Access source material through DOI

Screening cancer patients' families with the distress thermometer (DT): a validation study

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services. Copyright © 2008 John Wiley & Sons, Ltd.

Access source material through DOI

A critical consideration of the cash for care agenda and its implications for social services in Wales

This paper considers cash for care as reflected in direct payments and the more recent development of individual budgets in England. While the momentum to roll out individual budgets gathers pace in England, Wales has embarked on a more cautious approach in wishing to evaluate the impact of individual budgets on social services. The paper identifies some of the far reaching implications of cash for care in general and individual budgets in particular, for service users, carers ‐ both paid and informal ‐ and for the social work profession. The policy incoherence in relation to risk and safeguarding is highlighted. This paper supports the approach currently adopted by the Welsh Assembly Government in relation to the ‘rolling out’ of individual budgets. The Assembly's 10‐year strategy for social services focuses on the rights of citizens and the needs of communities. This paper argues that fulfilling that vision should not be wholly contingent upon an unproven extension into the field of individual budgets.

Access source material through DOI

Family caregivers' distress levels related to quality of life, burden, and preparedness

Objective: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care.

Methods: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis.

Results: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I–III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress.

Conclusion: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer. Copyright © 2014 John Wiley & Sons, Ltd.

Access source material through DOI

A systematic review of hospital experiences of people with intellectual disability

Background: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps.

Method: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of the target group in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought.

Results: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals’ fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes.

Conclusions: Our review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors.

Access source material through DOI

Nursing support and caregiver strain

Objective. To examine the possible association between satisfaction with nursing support and the risk of caregiver strain in informal carers in four Basic Health Areas in Barcelona from 2001 to 2002. Method. An observational, descriptive, cross-sectional study was performed. Subjects were 65 informal carers of both sexes of individuals aged 65 years or older with chronic or terminal diseases, or dementia. Carer-related variables were: age, gender, family relationship with the patient, degree of burden, risk of abandonment, and satisfaction with nursing support. Patient-related variables were: age, gender, type the disease, and degree of dependency. To evaluate the degree of burden in the informal carer, the Zarit scale was used. Results. The mean age of informal carers was 60 years, and most were women (56; 86%). Informal carers had a mean score of 61.20 points on the Zarit scale (SD = 16.50; 95% confidence interval, 57.11-65.29). There were 42 (65%) informal carers at risk of caregiver strain (65%). No statistically significant differences were found between satisfaction of the informal carer and the risk of caregiver strain. Conclusions. The profile of the informal carer corresponds to women with a high level of satisfaction with nursing support and a high risk of caregiver strain.

Access source material through DOI

Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

Access source material through DOI

On-line information and registration with services : patterns of support for carers in England

Purpose – The paper aims to ascertain how local authorities and other services are responding to central government strategies to make support for family carers a priority.

Design/methodology/approach – A web-based audit of local authority public information for carers was undertaken (n=50). The sample covered different parts of England and different local authority types.

Findings – A small minority of local authority web sites mention that they operated Carers’ Registers. Overall local authorities offer different resources to carers, ranging from discounts in the local area to access to emergency card registration. Some use online information as a communication channel. Overall local authority online information for carers seems to be variable in quality, accessibility and purpose. We conclude that growth in the collection of information by primary care services in England risks duplicating some of the functions of, and problems with, local authority activities. Local commissioning should minimise confusion and make optimal use of carers’ information. Carers should not have to navigate confusing, variable, parallel systems and outreach is needed for those who do not use electronic media, such as some older carers.

Research limitations/implications – This was a small-scale study nested within a larger project. It is possible that the web sites we interrogated were atypical, although we did take steps to prevent this.

Originality/value – The study's strength lies in its originality of approach undertaking a specific audit of material that is publicly available and reflecting on a subject that has not previously been explored in the context of information for carers.

Access source material through DOI

Electronic tracking for people with dementia who get lost outside the home: a study of the experience of familial carers

Purpose: The study aimed to elicit a description of GPS (global positioning system) tracking use in the care of people with dementia in domestic settings and to generate hypotheses about impact.

Procedures: Users were recruited through a commercial provider. Qualitative interviews with 10 carers were completed to generate an in-depth description of how the devices were used and the perceived impact. A questionnaire was administered to ascertain sample characteristics.

Findings: Most carers preferred to use tracking as a back-up to other strategies of management, particularly supervision by a carer and locked doors. In cases where the carers perceived the risk of harm from getting lost to be low, tracking was used to preserve the independence of the person with dementia. The carers reported that tracking gave them reassurance and also enhanced the sense of independence both for themselves and for the person with dementia. The poor reliability of the device was identified as a substantial limitation.

Conclusion: Larger studies are needed to assess the safety and clinical value of GPS tracking. These should explore the views of people with dementia. Assessment tools are needed to assess suitability. Occupational therapy can play a pivotal role in this process of intervention design, assessment and evaluation.

Access source material through DOI

Homeward Bound: Co-Designing the Pathway from Hospital to Home for Older People

Introduction and practice change: This project utilisied co-production methodology to enable health and social care practitioners, older people and their informal carers to work together to codesign an integrated care pathway from hospital to home. Aim and theory of change: The project aimed to improve the experience of older people transitioning from hospital to home. To achieve this aim the group co-designed a two-pronged service intervention: i. an admissions coordinator; and ii. discharge at home. Timeline: This has been a 20-month project, initiated in July 2013. Stage one involved an eightmonth scoping period, during which practitioners across Scotland contributed to the development of a resource that gives an overview of existing pathways ( Stage two was spent integrating the experiences of older people, informal carers and health and social care practitioners from Tayside over a period of six months. The final stage was spent embedding the co-designed interventions in practice locally. Innovation, Impact and Outcomes: The Design Council’s Double Diamond Methodology was used to inform a co-production approach supported by service design methodology and tools. This was achieved by running creative and innovative monthly workshops supporting health and social care practitioners to work alongside older people and informal carers.

Access source material through DOI

Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service

Background: Too little is currently known about the prevalence of and risk factors for depression and carer strain among informal carers of community-dwelling elderly mentally ill. This study seeks to assess the prevalence of depression, using the Geriatric Depression Scale-15 (GDS-15), the degree of carer burden/strain, and their risk factors among the primary informal carers of patients referred to our community-based old age psychiatry service.

Methods: A cross-sectional study design was used, with the subjects comprising 100 primary informal carers of patients who live at home and were referred to our service. The main carer measures were the GDS-15 and an adapted version of Gilleard's Strain Scale. Patients were assessed the Clifton Assessment Procedure for the Elderly–Survey version, the GDS-15 and the Mini-mental State Examination.

Results: Depression was found in 21% of the carers (a score of 5 or more on the GDS-15). The more problem behaviors identified and the greater the functional impairment of the patient, the higher the strain score deciles and the more likely the carer was to be depressed. Spouses were associated with lower carer strain scores. Patient diagnoses did not affect carer depression or carer strain.

Conclusion: We found high levels of depression in the primary carers of community-dwelling patients attending an old age psychiatric service. The patients' behavior and their cognitive and functional ability conferred greater risk of carer depression or strain than their diagnosis. These risk factors may help identify carers at risk of strain and depression.

Access source material through DOI

Caregiver burden : A clinical review

Importance  Caregiver burden may result from providing care for patients with chronic illness. It can occur in any of the 43.5 million individuals providing support to midlife and older adults. Caregiver burden is frequently overlooked by clinicians.

Objectives  To outline the epidemiology of caregiver burden; to provide strategies to diagnose, assess, and intervene for caregiver burden in clinical practice; and to evaluate evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress.

Evidence  Cohort studies examining the relation between demographic and social risk factors and adverse outcomes of caregiver burden were reviewed. Review of recent meta-analyses to summarize the effectiveness of caregiver burden interventions were identified by searching Ovid MEDLINE, AgeLine, and the Cochrane Library.

Results  Risk factors for caregiver burden include female sex, low educational attainment, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and lack of choice in being a caregiver. Practical assessment strategies for caregiver burden exist to evaluate caregivers, their care recipients, and the care recipient’s overall caregiving needs. A variety of psychosocial and pharmacological interventions have shown mild to modest efficacy in mitigating caregiver burden and associated manifestations of caregiver distress in high-quality meta-analyses. Psychosocial interventions include support groups or psychoeducational interventions for caregivers of dementia patients (effect size, 0.09-0.23). Pharmacologic interventions include use of anticholinergics or antipsychotic medications for dementia or dementia-related behaviors in the care recipient (effect size, 0.18-0.27). Many studies showed improvements in caregiver burden–associated symptoms (eg, mood, coping, self-efficacy) even when caregiver burden itself was minimally improved.

Conclusions and Relevance  Physicians have a responsibility to recognize caregiver burden. Caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.

Access source material through DOI

The profile of main caregivers of terminally ill patients, and an analysis of the risk of suffering from complicated grief

Background: caregivers have an important role in palliative care; therefore, it is essential to pursue a shared palliative care provision in which informal carers should be involved. One of the risks of caregivers is complicated grief after the death of a relative. Objective: to understand the main caregiver profile in Extremadura region (Spain), and to establish whether the risk of complicated grief depends on certain parameters. Method: data were collected from the medical files of 155 patients. The descriptive study of the standard profile was made using means. For the predictive factors of developing complicated grief an analytical approach was made using the χ2 test. Variables used included: complicated grief risk, sex, age, relationship with patient, sharing the home with the patient, education, and compliance with instructions. Results: the average profile of main caregivers corresponds to women (85.42%), daughters (43.75%), living in the same home with the patient (73.61%), with primary education (63.2%), an intermediate capacity to follow instructions (43.75%), and an average age of 54 years. The dependency of parameters studied and the risk of complicated grief, calculated with χ2 test, and their statistical significances were: χ2 = 4.057 (p = 0.398) for relationship; χ2 = 1.065 (p = 0.302) for living in the same home, and χ2 = 0.600 (p = 0.897) for education. Conclusions: the average profile of main caregivers agrees with previous studies. Using a confidence level of 99% none of the variables was related to the risk of suffering complicated grief. Copyright © 2007 Arán Ediciones, s.l.

Original source (some source materials require subscription or permission to access)

Influenza immunisation uptake in carers

In 2005 the United Kingdom departments of health added 'carers' to the list of people that should be offered seasonal influenza immunisation by their general practice. We surveyed a sample of carers registered for care assistance with the charity Crossroads Caring for Carers. Over half (58%) were not aware that they are eligible for free influenza immunisation. Young carers without a chronic disease, were least likely to be offered immunisation and least likely to be immunised.

Access source material through DOI

Supporting family caregivers at the end of life: they don't know what they don't know

Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

Access source material through DOI

Caregiving intensity and retirement status in Canada

A number of OECD countries have implemented policies encouraging longer labour force participation in tandem with policies encouraging informal care provision in the community. To better understand how these policies may affect the available pool of caregivers and labour force participants, we need more evidence about how informal caregiving is related to retirement status and timing. We assessed the association between caregiving intensity and retirement status for individuals aged 55 to 69 using the Canadian 2007 General Social Survey, a cross-sectional survey with 23,404 individuals. We used multinomial logistic regressions to determine whether providing different intensities of informal care (i.e. hours of weekly care) was significantly associated with the likelihood that an individual was fully retired, had retired and returned to work, had never retired and was working part-time or full-time, or was a labour market non-participant. We found that higher intensity caregiving was associated with being fully retired (relative to working full-time) for men and women (relative risk ratios, 2.93 and 2.04, respectively). For women, high intensity caregiving was also associated with working part-time (1.84) and being a labour force non-participant (1.99). Male and female high intensity caregivers were more likely to be retired before age 65. Our results highlight the importance of measuring caregiving intensity and multiple paths to retirement, which are often overlooked in the caregiving and retirement literature. They also indicate that a policy context encouraging both later retirement and more informal care may not be reasonable without flexible work arrangement options.

Access source material through DOI

The relationship between informal caregiving and mortality: an analysis using the ONS Longitudinal Study of England and Wales

BACKGROUND: Many studies have suggested that caregiving has a detrimental impact on health. However, these conclusions are challenged by research which finds evidence of a comparative survivorship advantage, as well as work which controls for group differences in the demand for care.

METHODS: We use a large record linkage study of England and Wales to investigate the mortality risks of carers identified in the 2001 Census. The analysis focuses on individuals aged 35-74 living with others in private households and a distinction is made between those providing 1-19 and 20 or more hours of care per week. Logit models identify differences in carers' health at baseline and postcensal survival is analysed using Cox proportional hazards models.

RESULTS: 12.2% of study members reported providing 1-19 h of care and 5.4% reported providing 20 or more hours. While carers were significantly more likely to report poorer health at baseline, survival analyses suggested that they were at a significantly lower risk of dying. This comparative advantage also held when the analyses were restricted to individuals living with at least one person with poor health.

CONCLUSIONS: The comparative mortality advantage revealed in this analysis challenges common characterisations of carers' health and draws attention to important differences in the way carers are defined in existing analyses. The survival results are consistent with work using similar data for Northern Ireland. However, the study also affords more uniform conclusions about carers' baseline health and this provides grounds for questioning existing hypotheses about the reasons for this advantage.

Access source material through DOI

Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.

Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.

Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.

Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.

Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified

  • Perceived carer control;

  • Mental and emotional well-being;

  • Types and impact of caregiving tasks;

  • Impact of patients’ physical condition;

  • Impact of age/gender/demographic factors;

  • Positive aspects of caregiving.

Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.

Access source material through DOI

Efficacy and experiences of telephone counselling for informal carers of people with dementia

Background: Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences.

Objectives: This review focuses on three main objectives: To: 1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia; 2) synthesize qualitative studies to explore carers’ experiences of receiving telephone counselling and counsellors’ experiences of conducting telephone counselling; and 3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned.

Search methods: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses.

Selection criteria: Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling.

Data collection and analysis: Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and integrated quantitative RCT data with the qualitative data.

Main results: Nine RCTs and two qualitative studies were included. Six studies investigated telephone counselling without additional intervention, one study combined telephone counselling with video sessions, and two studies combined it with video sessions and a workbook. All quantitative studies had a high risk of bias in terms of blinding of participants and outcome assessment. Most studies provided no information about random sequence generation and allocation concealment. The quality of the qualitative studies ('thin descriptions') was assessed as moderate. Meta-analyses indicated a reduction of depressive symptoms for telephone counselling without additional intervention (three trials, 163 participants: standardised mean different (SMD) 0.32, 95% confidence interval (CI) 0.01 to 0.63, P value 0.04; moderate quality evidence). The estimated effects on other outcomes (burden, distress, anxiety, quality of life, self-efficacy, satisfaction and social support) were uncertain and differences could not be excluded (burden: four trials, 165 participants: SMD 0.45, 95% CI -0.01 to 0.90, P value 0.05; moderate quality evidence; support: two trials, 67 participants: SMD 0.25, 95% CI -0.24 to 0.73, P value 0.32; low quality evidence). None of the quantitative studies included reported adverse effects or harm due to telephone counselling. Three analytical themes (barriers and facilitators for successful implementation of telephone counselling, counsellor's emotional attitude and content of telephone counselling) and 16 descriptive themes that present the carers’ needs for telephone counselling were identified in the thematic synthesis. Integration of quantitative and qualitative data shows potential for improvement. For example, no RCT reported that the counsellor provided 24-hour availability or that there was debriefing of the counsellor. Also, the qualitative studies covered a limited range of ways of performing telephone counselling.

Authors' conclusions: There is evidence that telephone counselling can reduce depressive symptoms for carers of people with dementia and that telephone counselling meets important needs of the carer. This result needs to be confirmed in future studies that evaluate efficacy through robust RCTs and the experience aspect through qualitative studies with rich data.

Access source material through DOI

Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention

OBJECTIVE: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered.

DESIGN AND SETTING: Caregivers of stroke patients were recruited in four regions of the Netherlands. A total of 212 caregivers were interviewed. Multiple stepwise regression analysis was performed to determine the effects of patient and caregiver characteristics, resources, coping strategies and duration of the caregiver role on caregiver strain, mental well-being and vitality.

SUBJECTS: The majority of the caregivers were female spouses. Their mean age was 64 years, and their socioeconomic status middle class. Stroke had occurred about 3.5 years ago on average.

MAIN OUTCOME MEASURES: The following main outcome measures were used: the Caregiver Strain Index, and two scales of the Short Form-36 to measure caregivers' mental well-being and vitality.

RESULTS: Severe cognitive, behavioural and emotional changes in the patient constitute the main risk factors for caregiver burn-out. Women, younger caregivers and caregivers in poor physical health were also identified as risk groups. Caregivers with high perceived self-efficacy, satisfied with social support, and frequently using the coping strategy confronting, experience less strain, higher mental well-being and greater vitality. Duration of the caregiver role does not influence caregivers' strain, mental well-being or vitality.

CONCLUSIONS: Women, younger caregivers, caregivers in poor physical health, and caregivers of patients with severe changes are at risk of burn-out. Support programmes should focus on self-efficacy, social support, and the coping strategy confronting. No specific moment could be identified at which support programmes should be offered.

Access source material through DOI

GPS technologies in managing the risks associated with safer walking in people with dementia - a practical perspective

Many people with a cognitive impairment are likely to become lost at some stage of their illness; this can cause great distress to individuals and to their relatives. GPS location equipment has become available recently and has been trialled with a number of families. Although the technology itself is not complicated, it introduces a number of problems including battery management, device selection and returning the individual when they have become lost. A process has been developed to simplify these problems. When it is followed, the outcomes have been positive for all stakeholders.

Access source material through DOI

A critical analysis of health promotion and 'empowerment' in the context of palliative family care-giving

Traditionally viewed as in opposition to palliative care, newer ideas about ‘health-promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are universally beneficial for and welcomed by all individuals. But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers.

Access source material through DOI

Elevated depressive symptoms among caregiving grandparents.(living with chronic illness)

Objective: To determine whether caregiving grandparents are at an increased risk for depressive symptoms.

Data Source: National sample (n=10,293) of grandparents aged 53–63 years in 1994, and their spouse/partners, who took part in the Health and Retirement Study (HRS).

Study Design: Grandparents were surveyed in 1994 and resurveyed every two years thereafter, through 2000. Over that period, 977 had a grandchild move in or out of their home. These grandparents served as their own controls to assess the impact of having a grandchild in the home.

Data Extraction: Depressive symptoms were measured using an abbreviated form of the Center for Epidemiologic Studies—Depression (CES-D) scale, scored 1–8, with a score ≥4 associated with depression “caseness.”

Principal Findings: At the time of the 1994 interview, 8.2 percent of grandparents had a grandchild in their home. However, there was substantial variation across demographic groups (e.g., 29.4 percent of single nonwhite grandmothers, but only 2.0 percent of single white grandfathers had a grandchild in residence). The impact of having a grandchild in the home varied by grandparent demographic group, with single grandparents and those without coresident adult children experiencing the greatest probability of elevation in depressive symptoms when a grandchild was in residence. For example, single nonwhite grandmothers experienced an 8 percentage point increase in the probability of having a CES-D score ≥4 when a grandchild was in their home, compared to when a grandchild was not in their home, controlling for changes in health care, income, and household composition over time (95 percent CI=0.1 to 15.0 percentage points).

Conclusions: Grandparents have a greater probability of elevated depressive symptoms when a grandchild is in their home, versus when a grandchild is not in their home. Single women of color bear a disproportionate burden of the depression associated with caring for grandchildren. Since an increasing number of grandparents function as a de facto safety net keeping their grandchildren out of formal foster care, identifying strategies to support the health and well-being of caregiving grandparents is an emerging priority.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Double-duty caregivers: healthcare professionals juggling employment and informal caregiving. A survey on personal health and work experiences

Aims: This study compared the work-related experiences and personal health status of double-duty caregivers with those of caregivers who do not provide informal care to a family member or close friend in need.

Background: The interest in providing informal care alongside employment is growing. However, little attention has been paid to the dual role of the healthcare professional who also has caregiving responsibilities for a needy person in his/her private situation. It is important to study the negative and positive consequences of this combination of professional and family care giving.

Design: A cross-sectional study.

Methods: In 2011, we distributed a digital questionnaire to employees with a professional care function working at a healthcare organization in the Netherlands. Descriptive statistics, analyses of covariance and tests of linearity were performed.

Results: Analyses of variance demonstrated that as professional healthcare workers provide more hours of informal care in their private lives, their mental and physical health significantly worsens, while their need for recovery increases. Also, statistical significant increases were seen for emotional exhaustion, presenteeism and negative experiences with Work–Home and Home–Work Interferences. Remarkably, positive Home–Work Interference increased significantly with increasing hours of informal care. Double-duty caregivers appeared to be equally motivated and satisfied with their work as their co-workers. No differences were seen with respect to absenteeism.

Conclusion: Double-duty caregivers prove to be employees who are at risk of developing symptoms of overload. This finding calls for special attention, with long-term solutions at both legislative and organizational level.

Access source material through DOI

Risk factors for elder abuse and neglect: brief descriptions of different scenarios in South Africa

Aim. To describe various situations in which older people in South Africa are vulnerable.

Background. Poverty compromises the health of many older people in South Africa but the circumstances and ways in which this is managed and risk thought of is poorly understood. This paper presents three scenarios that describe individual studies and provide insight into the factors influencing the lives of some older people.

Method. Scenario 1 concerns people with dementia. Pilot work has collected interview data from four people with dementia, their four informal carers and three hospital nursing staff.

Scenario 2 concerns an analysis of data collected routinely as part of the Halt Elder Abuse Line, a telephone-based service for people to report abuse.

Scenario 3 concerns an interview study with farm workers who have retired and who are vulnerable to being displaced from the farms.

Conclusion. A variety of policy, social and individual factors result in older people being vulnerable and continuing research is required to further develop an understanding of these dynamics of risk to promote changes to current policy and practices.

Access source material through DOI

Knowledge translation of research findings

Background: One of the most consistent findings from clinical and health services research is the failure to translate research into practice and policy. As a result of these evidence-practice and policy gaps, patients fail to benefit optimally from advances in healthcare and are exposed to unnecessary risks of iatrogenic harms, and healthcare systems are exposed to unnecessary expenditure resulting in significant opportunity costs. Over the last decade, there has been increasing international policy and research attention on how to reduce the evidence-practice and policy gap. In this paper, we summarise the current concepts and evidence to guide knowledge translation activities, defined as T2 research (the translation of new clinical knowledge into improved health). We structure the article around five key questions: what should be transferred; to whom should research knowledge be transferred; by whom should research knowledge be transferred; how should research knowledge be transferred; and, with what effect should research knowledge be transferred?

Discussion: We suggest that the basic unit of knowledge translation should usually be up-to-date systematic reviews or other syntheses of research findings. Knowledge translators need to identify the key messages for different target audiences and to fashion these in language and knowledge translation products that are easily assimilated by different audiences. The relative importance of knowledge translation to different target audiences will vary by the type of research and appropriate endpoints of knowledge translation may vary across different stakeholder groups. There are a large number of planned knowledge translation models, derived from different disciplinary, contextual (i.e., setting), and target audience viewpoints. Most of these suggest that planned knowledge translation for healthcare professionals and consumers is more likely to be successful if the choice of knowledge translation strategy is informed by an assessment of the likely barriers and facilitators. Although our evidence on the likely effectiveness of different strategies to overcome specific barriers remains incomplete, there is a range of informative systematic reviews of interventions aimed at healthcare professionals and consumers (i.e., patients, family members, and informal carers) and of factors important to research use by policy makers.

Summary: There is a substantial (if incomplete) evidence base to guide choice of knowledge translation activities targeting healthcare professionals and consumers. The evidence base on the effects of different knowledge translation approaches targeting healthcare policy makers and senior managers is much weaker but there are a profusion of innovative approaches that warrant further evaluation.

Access source material through DOI

The Simon Heng column

Presents views on social care among children. Overview of a 2005 report by The Education Network about young carers; Decision to be a good parent upon the acquisition of a disability; Reasons why parents should impose responsibilities on their children when they risk damaging their futures.

Is caring a health hazard? The mental health and vitality of carers of a person with a disability in Australia

OBJECTIVE: To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality.

DESIGN: Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving.

PARTICIPANTS AND SETTING: A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household, Income and Labour Dynamics in Australia Survey, a nationally representative household panel survey (August 2004 to February 2005).

MAIN OUTCOME MEASURES: Mental health and vitality as measured by the Medical Outcomes Study 36-item Short-Form Health Survey.

RESULTS: Compared with the general population, carers were at significantly greater risk of having a mental health problem and lower levels of vitality, even after controlling for demographic characteristics. For carers, the risk factors for poor mental health and lower levels of vitality were caring for a person with a disability with higher care needs, experiencing greater levels of financial stress, lower levels of support and worse family functioning.

CONCLUSION: Carers are at greater risk of mental health problems and lower energy levels than the general population.

Original source (some source materials require subscription or permission to access)

Supportive practice with carers of people with substance misuse problems

While there is increased recognition of the role of family carers in supporting adults with social care needs, some groups of carers are overlooked or hidden from professional view. Carers of people with substance misuse problems may be among this group since they are at risk of feeling guilty and stigmatised; targeting and eligibility criteria may concentrate professionals’ activities on people with high levels of need for practical support and there may be complex family dynamics where the role of carer does not fit traditional models. This article draws on a study of carers’ workers (professionals whose role entailed a specific remit to work with carers, such as carers support workers) and family carers undertaken in four areas of England. A total of 86 interviews were conducted (late 2011–2012), of which, just over a quarter (26%) involved some discussion of substance misuse. The findings were analysed thematically. The findings from the study were later reported to a focus group of practitioners and carers with experience of drug-and-alcohol support for validation in 2014. Key themes in relation to social work practice with carers of people with alcohol and other drug problems were those of insecure funding of voluntary sector carer services; balancing generic support for family carers and specific support for certain groups of carers; and feelings among carers that the drug-and-alcohol problems experienced by the person they were supporting contributed to them feeling excluded from general carers’ support. The article concludes that drug and alcohol social workers should be alert to the implications of the Care Act 2014 and its provision for carers, and that carers’ workers should be confident in being able to refer carers to appropriate support in either general or specific settings or raise this as an unmet need if such provision is not adequate locally. Social work trainers and educators should ensure they are working within evidence-based interventions to enhance professional capacity and capability.

Access source material through DOI

Caregiving burden, stress, and health effects among family caregivers of adult cancer patients

Unlike professional caregivers such as physicians and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioural, and physiological effects on their daily lives and health. In this report, the authors describe the experience of a 53-year-old woman who is the sole caregiver for her husband, who has acute myelogenous leukaemia and was undergoing allogenic haematopoietic stem cell transplantation. During this intense and unpredictable course, the caregiver's burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation. Physicians and their interdisciplinary teams are presented daily with individuals providing such care and have opportunity to intervene. This report describes a case that exemplifies caregiving burden and discusses the importance of identifying caregivers at risk of negative health outcomes and intervening to attenuate the stress associated with the caregiving experience.

Access source material through DOI

Diabetes care for older people: a practical view on management

Diabetes can impose a substantial health burden on older people and their informal carers. If there is evidence of sub-optimal care planning, a lack of empowerment, or under-skilling of those delivering direct diabetes care to this group, independence of the individual will be under threat. This substantially increases the risk of a serious adverse outcome, for example hospital or care home admission. This article identifies the specific needs, treatments and assessments for functional loss and depression in older people with diabetes living in the community, those living in care homes and those in hospital. It also looks at end-of-life care and managing hypoglycaemia.

Original source (some source materials require subscription or permission to access)

Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness

Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning.

Access source material through DOI

Risk and adult social care: identification, management and new policies. What does UK research evidence tell us?

Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.

Access source material through DOI

A duty of care to carers

Explains how, in their desire to protect employees from the hazardous lifting of service users, local authorities are running the risk of negligence claims from carers.

Original source (some source materials require subscription or permission to access)

Carers Assistive Technology Service

Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.

Access source material through DOI

When is a carer's employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England

This article examines the thresholds at which provision of unpaid care affects employment in England. Previous research has shown that providing care for 20 or more hours a week has a negative effect on employment. The present article explores the impact of a lower threshold and asks whether provision of care for 10 or more hours a week has a negative effect on employment. The article focuses on women and men aged between 50 and State Pension Age (60 for women, 65 for men). The study uses data from the first four waves of the English Longitudinal Study of Ageing (ELSA), collected in 2002/2003, 2004/2005, 2006/2007 and 2008/2009. Across these waves, there are 17 123 people aged 50–59/64 years, of whom 9% provide unpaid care to an adult. Using logistic regression analysis of the longitudinal data, the study finds that employed women in their fifties who start providing care for <10 hours a week are significantly more likely to remain in employment one wave later than similar women who have not started to provide care. In contrast, employed women in their fifties who start providing care for 10 or more hours a week are significantly less likely to remain in employment one wave later than similar women who have not started to provide care. Employed men aged between 50 and State Pension Age, who provide care for 10 or more hours a week at the beginning of the period have a significantly reduced employment rate one wave later than those who do not provide care. The study therefore suggests that carers’ employment may be negatively affected when care is provided at a lower intensity than is generally estimated in England. This has important implications for local authorities, who have a duty to provide services to carers whose employment is at risk.

Access source material through DOI

The needs of carers who push wheelchairs

Purpose – The purpose of this paper is to establish the outcome of wheelchair prescription procedures for carers supporting a wheelchair user with special reference to their health and well‐being.

Design/methodology/approach – A postal questionnaire was used in conjunction with analysis of policy and practice documents in wheelchair prescription and carers' needs.

Findings – The majority of carers reported a wide range of health problems. A relationship between wheel chair type and reported carer pain was noted. Only a minority of carers considered that they had received an adequate carer's assessment, and few had received training in wheel chair management; such training where it had been carried out, led to reduced reports of pain.

Research limitations/implications – The study invites more detailed analysis of both the conditions under which wheelchair prescribing takes place and the impact of assessment and training on carers' health. The study is based on a relatively small, local sample and a more extensive study is called for.

Practical implications – Procedures for prescription of wheelchairs should be reviewed and steps taken to ensure that adequate consideration is given to the health needs of carers and the circumstances under which they will push the wheelchair.

Social implications – More thoughtful prescription of wheelchairs will lead to increased health of carers improving their quality of life and reduce demands on health services and the accompanying risk to their capacity to carry on caring.

Originality/value – The study addresses a neglected topic, which clearly identifies the consequences of inadequate prescription of wheelchairs for the health of carers, a topic generally neglected in the literature.

Access source material through DOI

Social risk factors for falls among rural Nigerian community-dwelling older adults

Aim: Reports on social risk factors for falls are scarce. This study explored the associations of selected sociodemographic and health variables with falls among rural Nigerian community-dwelling older adults.

Methods: The present cross-sectional study involved 131 community-dwelling older adults (84 women and 47 men) recruited at an outreach center. Demographic (age, sex and marital status), social (frequency of visiting relations and friends, and number of consistent informal carers) and health (number of comorbid conditions) variables were recorded.

Results: Having fewer than two informal carers (0.26, 95% CI 0.10–0.68) was independently associated with reduced risk for falls. Visiting relations and friends less than twice per week was independently associated with greater risks for falls (3.85, 95% CI 1.42–10.46) and recurrent falls (4.86, 95% CI 1.25–18.85).

Conclusions: The number of informal carers and frequency of social visits are risk factors for falls in older adults, and need to be taken into consideration in any strategy for fall prevention in older adults. 

Access source material through DOI

Facilitating support groups for siblings of children with neurodevelopmental disorders using audio-conferencing: a longitudinal feasibility study

Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups

Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.

Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.

Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.

Access source material through DOI

Vulnerable pupils go unnoticed

The article reports that studies by several British educational organizations have found that access to social services for vulnerable students in state schools is inadequate. The organizations referenced include the Young Carers Research Group at Loughborough University, the Children's Society, and National Foundation for Educational Research. Research by these groups has shown that educators often discipline vulnerable children for bad behaviour without addressing the cause of such behaviour.

Original source (some source materials require subscription or permission to access)

There's no apprenticeship for Alzheimer's : the caring relationship when an older person experiencing dementia falls

Older people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

Access source material through DOI

Young carers get help and support through innovative pilot scheme

A pioneering nurse is leading a pilot programme to tackle physical and mental health problems among young carers.

Access source material through DOI

"Sometimes we get it wrong but we keep on trying": A cross-sectional study of coping with communication problems by informal carers of stroke survivors with aphasia

Background: The need to support carers of stroke survivors is widely recognised. However, research on which to base recommendations is scarce. Little research has focused on carers of stroke survivors with aphasia, and that which exists suffers from problems with sample size and methodology. More information is needed about methods used by carers to manage communication difficulties and about coping strategies that promote emotional wellbeing.

Aims: To assess the coping strategies used by informal carers of stroke survivors with aphasia to manage communication problems, and their association with depressive symptoms. To assess whether a problem-specific coping inventory offers an advantage over a generic coping questionnaire for this purpose.

Methods & Procedures: Questionnaires were completed by 150 informal caregivers of stroke survivors with aphasia. The Centre for Epidemiologic Studies Depression Scale measured depressive symptoms. Coping was assessed with the Brief COPE and a problem-specific questionnaire on coping with communication difficulties. Level of social support was also assessed. Multiple regression analysis explored associations between coping and depressive symptoms. Mediation analysis assessed the significance of the indirect effect of coping between the level of communication impairment in the stroke survivor and the degree of depressive symptoms in the carer.

Outcomes & Results: Participants reported a wide range of coping strategies. Avoidant styles of coping were associated with increased depressive symptomatology. Coping by use of positive reframing was linked with fewer symptoms of depression. Anticipated level of social support was also associated with less depressive symptomology. The level of communication impairment of the stroke survivor was not predictive of depressive symptoms in carers after controlling for coping and social support. Limited support was found for a mediating model of coping. Inclusion of one subscale from the problem-specific questionnaire improved the amount of variance accounted for in depressive symptoms, above that explained by the Brief COPE.

Conclusions: The results verify that the impairment of the stroke survivor has less effect on carers' psychosocial functioning compared to coping. Assessment of coping can help to identify carers presenting with increased risk of depression. A traditional coping inventory provides an adequate assessment of the coping strategies used to manage communication problems, and can be supplemented by specific questions about avoidance. Interventions that develop some emotion-focused coping strategies in carers may support adaptation. Interventions should also aim to decrease the use of unhelpful coping strategies rather than solely focusing on increasing problem-focused forms of coping.

Access source material through DOI

Effectiveness of computer-mediated interventions for informal carers of people with dementia-a systematic review

Caring for a friend or relative with dementia can be burdensome and stressful, and puts carers at increased risk of physical and psychological problems. A number of psychosocial interventions, some delivered by computer, have been developed to support carers. This review evaluates the outcomes of computer-mediated interventions.

PsychINFO, MEDLINE, and CINAHL Plus were searched for papers published between January 2000 and September 2012. Study quality was evaluated using a modified version of Downs and Black's (1998) checklist.

Fourteen empirical studies, evaluating a range of complex, multifaceted interventions, met inclusion criteria. The most commonly measured variables were carer burden/stress and depression. In general, higher quality studies found that interventions did have an effect on these variables. Two higher quality studies also found that anxiety was reduced following intervention. Most studies found that positive aspects of caring were increased through these interventions, as was carer self-efficacy. There were mixed results in relation to social support, and physical aspects of caring did not seem to be affected. Program impact measures indicated general acceptability of these interventions.

The findings support the provision of computer-mediated interventions for carers of people with dementia. Future studies would benefit from design improvements, such as articulating clearly defined aims, having a control group, having adequate statistical power, and measuring a greater range of factors important to carers themselves.

Access source material through DOI

Protecting vulnerable adults: good practice guidance and procedures

Adult abuse can occur in many different settings and situations. It is usually a very complex area of work. Therefore employees need to be aware of situations which may put a vulnerable adult at risk. This has highlighted the need for guidelines and procedures for Social Work Services, Police, Health Services, and independent providers. This multi-disciplinary approach is designed to address the abuse of vulnerable adults in community, hospital and institutional settings, with the focus on both informal and formal carers. These procedures require any responsible person to act with regard to any information which comes to their attention giving reasonable grounds to suspect that a vulnerable adult has been abused. In all instances these procedures and key steps will be followed by all agencies, units and establishments. These procedures and practice guidelines refer to cases where abuse has occurred and specific action is required to ensure the protection of the vulnerable person.

Original source (some source materials require subscription or permission to access)

Women at the crossroads : a literature review of the mental health risks facing women in mid-life

This review focuses upon women aged 45-60: an under-researched subgroup of the adult female population. Women in mid-life occupy a unique position in the lifespan at the intersection of a number of age-related and lifelong pathways. The lives of these women can be distinguished from those of both older and younger women along a number of important dimensions including their family and working lives, economic situation, general health, and the complexity of their roles both inside and outside the home. Personal and economic changes are common at mid-life as are physical changes; all have particular and distinct implications for women’s emotional and psychological health. The aim of this review is to address a knowledge deficit. Though some evidence exists about the extent of psychological distress in women aged 45-60, far less has been gathered about the causes of such difficulties or the challenges to mental health associated with mid-life experience. The lifespan is routinely conceived as containing a number of discrete stages: women’s lives are characterised by experiences that have overlapping threads and meanings and these combine with age-related issues in ways that warrant focused attention. This review draws evidence from a range of sources to identify the key parameters of mid-life women’s lives. These include: the areas and types of risk to their mental health from a range of sources, the extent of psychological distress, and the ways in which research and policy could reduce the challenges that commonly face women in mid-life and alleviate or prevent mental ill health. It should be noted at the outset that the age group 45-60 years does not map perfectly on to the existing field of research: researchers and national statisticians punctuate the life span in whatever ways they see fit. So, although we have tried to locate research which matches the age span of interest, inevitably we also draw upon the findings of research which only offers a close approximation. 

Original source (some source materials require subscription or permission to access)

Telesafe 2: a video resource pack on safety: for use with people with learning difficulties and their carers

This is a video that helps with the bogus callers issue. Telesafe 2 is video resource pack on safety produced by The Telesafe Association and Values Into Action. This gave people the opportunity to talk about ID cards, door chains and keeping safe when somebody you don't know knocks at your door. The video also covered harassment on the street and on buses.

Multidisciplinary approaches to moving and handling for formal and informal carers in community palliative care

Health professionals such as nurses, physiotherapists and occupational therapists provide a wealth of support in the community to patients and their carers receiving palliative care. Moving and handling is one such support that needs careful consideration and assessment including risk, by appropriately qualified professionals. A combination of skills are required as well as knowledge of up to date equipment to assist the health professional in deciding how to formulate safe moving and handling interventions in a timely way. Patients with palliative care needs and their carers should be given the appropriate care and support necessary using a holistic, flexible and patient-centred approach to service delivery.

Access source material through DOI

Call us carers: limitations and risks in campaigning for recognition and exclusivity

This article comments on the current campaign by carers’ organizations for the title of carer to be used exclusively in connection with unpaid caring. This campaign is analysed in the context of recent developments in policies on unpaid caring and broader debates concerning recognition campaigns, identity and solidarity with others. It is argued that success for carers in terms of securing better benefits and services has been partial and limited and that there are problems in linking demands for recognition with demands for improved material conditions. It is also argued that this particular campaign is likely to prove counterproductive, not only for carers but also for others in caring relationships, including paid carers and people in need of support.

Access source material through DOI

Grouping cancer patients by psychosocial needs

This article describes a study in which a systematic classification of cancer patients was produced on the basis of their needs. A series of 380 cancer patients from four hospitals in the North West of England responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. Four patterns of need were identified. The groups differed in both quantityand qualityof patients' expressed needs. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals domains. Because the four groups differed by demographic and socioeconomic characteristics, there is scope for developing risk scores to predict these patterns of psychosocial needs in patients with cancer. The dangers and limitations of this approach are discussed.

Access source material through DOI

The Experiences of Children Living with and Caring for Parents with Mental Illness

This research provides a three-way perspective on the experiences & needs of children who are living with & caring for parents with severe & enduring mental illness. The views of children, parents & key workers were sought in order to provide deeper insight into the needs of families & the nature of interfamilial relationships, as well as the relationships between service users & providers. Child protection & medical research has long proposed a link between parental mental illness & the risk to children of abuse, neglect & developmental delay. The inevitability of risk associations is challenged by the research described here & outcomes for children of caring for parents with mental illness are discussed not simply in terms of risk to children but more broadly in respect of, for example, positive parent-child relationships. References. [Copyright 2006 John Wiley and Sons, Ltd.]

Access source material through DOI

The GPcog for detecting a population with a high risk of dementia

GPcog is a screening tool for dementia in the aged. It consists of nine cognitive items and six items assessing the daily living instrumental activities by an informal carer. This study was aimed to assess the reliability of the French version of the GPcog in a psychogeriatric population. Two hundred and eighty inpatients from a short-term psychogeriatric ward, with or without dementia, were examined. Scores on GPcog, MMSE and on a five-word memory test for screening dementia were compared to the final diagnosis of dementia. The mean age of subjects was 77.8+/-7.0 years for males (n=116), and of 80.3+/-6.6 years for females (n=164). One hundred eighty two patients had dementia, mainly of Alzheimer's type, and 98 had psychiatric disorders but were non demented. GPcog sensitivity for the diagnosis of dementia was 96%, specificity 62%, positive predictive value 83% and negative predictive value 90%. GPcog is an accurate and well-accepted instrument for dementia screening in primary care. French results were similar to those obtained with the English version. It can be easily used by non-specialized carers. [Article in French]

Original source (some source materials require subscription or permission to access)

‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.

Access source material through DOI

Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease

Objective: To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer's disease (AD), with a view to differentiating and improving support for caregivers. Methods: This study is a part of two larger Norwegian studies, DemVest (n = 265) and The Norwegian Dementia Register (n = 2220), with data from caregivers and people diagnosed with AD (n = 100) and DLB (n = 86) between 2005 and 2013. The average age was 74.9 years (SD = 7.8). Caregiver distress was rated by the Relative Stress Scale. Diagnosis of the person receiving care was based on a comprehensive standardised assessment program (International Classification of Diseases, Revision 10 or Diagnostic and Statistical Manual for Mental Disorders, fourth edition). Additional data collected from people receiving care were neuropsychiatric symptoms, comorbidity and activities of daily living (ADL) score. Linear regression analyses were applied, first unadjusted and then in stepwise-adjusts in addition to descriptive analyses. Results: Caregivers to people with AD (20.2%) and 40% of caregivers for people with DLB experienced moderate or high caregiver burden with an increased risk of psychiatric disorders in the early stage of dementia. High Relative Stress Scale (RSS) total scores in caregivers was significantly associated with neuropsychiatric symptoms (Neuropsychiatric Inventory, p = 0.004) and also with impaired ADL functioning (Rapid Disability Rating Scale-2, p < 0.0005). Conclusion: Caregiver distress differed (RSS total, p = 0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB. Copyright © 2016 John Wiley & Sons, Ltd. Ethics and dissemination: Cohorts were ethically approved by the Regional Ethics Committee for Medical Research Ethics in Eastern and Western Norway.

Access source material through DOI

Risk factor characteristics in carers who physically abuse or neglect their elderly dependants

This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.

Access source material through DOI

Dementia risk reduction: it's never too early, it's never too late

There are 850,000 people living with dementia in the United Kingdom today, and there is currently no diseasemodifying intervention available for any form of the condition. Costs from dementia to the UK economy are currently estimated to be over L24 billion a year and approximately 700,000 people are informal carers for people who have dementia. While age is the biggest risk factor for developing dementia, the condition is not an inevitable part of ageing. Other factors such as medical history, lifestyle and genetics may also contribute to the risk of developing dementia. A recent analysis of the research on protective and modifiable factors for dementia concluded that there is strong evidence to show that stroke, midlife high blood pressure and diabetes increase the likelihood of developing dementia. In many cases, risk of these conditions can be minimised through lifestyle choices - cutting out smoking, eating a healthy diet with low alcohol consumption, keeping physically active and maintaining a healthy weight. [...]

Access source material through DOI

The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers. Health was self-assessed, measured with the SF-36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care-giving was classified as non-carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care-giving, covariates (including work, family and socio-demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care-giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17-point decline in PF (P = 0.009) and a 14-point decline in MH (P < 0.0001) after 2 years for female high caregivers working full-time and 9.3 point improvement (P = 0.02) for non-working male high caregivers. Change was not significant for non-carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care-giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.

Access source material through DOI

Protecting the health of employees caring for family members with special health care needs

Over half of American workers are holding a paid job while also providing unpaid assistance and support to a family member. Research shows that family members who provide care to children or adults with special health care needs are themselves at risk of physical and mental health problems. Yet, little research has explored how the work environment mediates the effects of caregiving on caregivers’ mental and physical health. With a sample of 2455 currently employed U.S. adults from the Work, Family, Community Nexus (WFCN) survey, a random-digit dial, nationally representative survey of Americans aged 18–69, we examine whether paid leave and flexibility policies mediate the relationship between caregiving and health.

In Ordinary Least Squares regression models, we find that paid leave to address family members’ health was associated with better mental health status as measured by the 5-item Mental Health Inventory and paid sick leave with better physical health status as measured by self-rated overall health status. A supportive supervisor was also associated with improvements in mental and physical health. For both men and women, paid leave and a supervisor’s support offset some or all of the negative effects of caregiving, but for women, the buffering effects of working conditions are slightly larger.

Enhancing the unpaid leave guaranteed in the U.S. Family and Medical Leave Act so that it is paid and passing national paid sick days legislation will help ensure that employed caregivers can retain their jobs, receive needed income, and meet their own mental and physical health needs.

Access source material through DOI

A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

Access source material through DOI

Principles of person centred care: part 1

Designed exclusively for those providing care within the care home setting, this two part title introduces carers to the values that underpin person-centred care. It assists them to develop their understanding of how principles of care should be reflected in their day-to-day practices by exploring the values of individuality, rights, choice, privacy, independence, dignity, respect and partnership. It goes on to look at the right service users have to take risks in their lives and how the care plan and risk assessment can assist to protect individuals from harm. It also considers the meaning of equal opportunities and diversity.

Original source (some source materials require subscription or permission to access)

'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers’ rights, not least to basic information to help them care for service users. ‘Confidentiality smokescreens’ may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.

Access source material through DOI

Towards the creative management of risk: perceptions practices and policies

The present paper examines the importance of risk when supporting individuals with learning disabilities. It uses data from a small research project designed to examine the perceptions of risk held by users, carers and professionals, as well as the risk policies of agencies. Risk is an important issue in the provision of support. The service users in the present study saw risk primarily in terms of hazards. The carers were concerned about hazards and harm, but recognized the need for risk-taking. The professionals emphasized the importance of reasonable risk-taking. Agencies also recognized the importance of risk management, and most had or were developing risk policies. However, most of these policies are based on a restricted approach to risk which emphasizes hazard assessment, and health and safety issues. There was limited evidence of broader integrated approaches to risk management which had the capacity to link and balance safety and empowerment.

Access source material through DOI

Distressed fathers and their children: A review of the literature

Background: Many men diagnosed with mental health problems are also fathers. This literature review addresses issues relating to both the fathering role taken on by men who have mental health problems as well as the impact of their mental health on their children. Material: An integrative review of the literature was conducted from studies originating in four countries, resulting in an analysis of 31 journal articles. Discussion and conclusions: Most of the quantitative literature focuses on the many risks and negative outcomes for children. However, qualitative studies suggest positive outcomes such as strong parent-child relationships, which demand further attention both in research and in practice. [Reprinted by permission of Sage Publications Ltd., copyright holder.]

Access source material through DOI

Quality of life in patients with chronic heart failure and their carers: a 3-year follow-up study assessing hospitalization and mortality

Aims: Chronic heart failure (CHF) due to left ventricular systolic dysfunction is associated with poor quality of life (QoL). This study aimed to assess factors affecting health-related QoL in CHF patients and their carers and the impact of QoL on clinical outcomes.

Methods and results: Demographic, social, and clinical data were collected for consecutive CHF patients in an academic hospital setting. All patients (n = 179) and informal carers (n = 131) completed a generic QoL questionnaire (EQ-5D) and patients also completed a CHF-specific QoL questionnaire (Minnesota Living with Heart Failure Questionnaire, MLHFQ). Patients were then followed up for 3 years to assess subsequent hospitalizations and mortality. Minnesota Living with Heart Failure Questionnaire score was independently predicted by NYHA class, socioeconomic deprivation and lack of an informal carer. Severity of heart failure, anaemia, and cancer co-morbidity in CHF patients were associated with poor QoL in carers. Chronic heart failure patients with poor baseline QoL (MLHFQ > median) were at increased risk of hospital admissions [hazard ratios (HR) 7.3, P < 0.001] and death (HR 1.5, P = 0.09). Mortality was also independently associated with repeat hospitalization (HR 6.0, P < 0.001) and lack of beta-blocker therapy (HR 1.8, P = 0.03).

Conclusion: Severe heart failure, poor socioeconomic status and lack of social support results in poor QoL in CHF patients which in turn leads to an increased risk of hospital admissions and death. Quality of life in carers is lower in female carers, those with socioeconomic deprivation and those caring for patients with higher NYHA class or having a cancer. Quality of life assessment may complement clinical prognostic markers to identify CHF patients at high risk of adverse events.

Access source material through DOI

A review of research outcomes in elder abuse

Provides a commentary on research outcomes in the field of elder abuse and challenges assumptions about older people, carers, vulnerability and risk.

Access source material through DOI

Ethical issues in the use of fall detectors

Fall detectors are a form of remote monitoring assistive technology that have the potential to enhance the wellbeing of adults at risk from falling. In this paper, the ethical issues raised by the use of fall detectors are examined. The fall detection devices currently available are outlined, and a summary of how these devices require social-care services, or family carers, to respond in particular ways, is provided. The ethical issues associated with the use of fall detectors are classified under four headings: autonomy, privacy, benefit, and the use of resources. These issues, we argue, arise out of the nature of the technology itself, and the way that this technology is integrated into the day-to-day support package of the person for whom it is provided. It is argued that manufacturers have a duty to provide information about the ‘ethical side-effects’ associated with the use of a particular device, and that the process of making a decision to provide a person with a fall detector should include a checklist of questions that is designed to enable decision makers to work through the ethical issues raised.

Access source material through DOI

Educational Outcomes in the Rehabilitation of Elderly Patients with Diabetes Mellitus

Background Diabetes mellitus is a major health problem in all age populations, with complications that adversely affect the autonomy and quality of life of patients and their kindred ones, with a heavy demand on health care resources. Sedentary lifestyle, urbanization, eating habits and increasing obesity have been identified as independent risk factors for diabetes. Aim of study To establish the effectiveness of a daily walk and diet education intervention in order to look for optimum ways to change and maintain a healthy lifestyle and quality of life. Sources of research The study population consisted of Caucasian men and women ranging in age from 60 to 91 years old (mean=76.42 years old) with Type 2 Diabetes Mellitus of duration at least one year, attending two primary care offices in Iasi, Romania. Patients had a clinical and laboratory follow-up assessment every 1 to 2 months. For each of them, open interviews were conducted with consistent educative information offered related to ongoing nutrition, self-management and physical activity. This data was subsequently analyzed both in a quantitative and qualitative manner. Main Argument Outcomes of diabetes and co-morbidities management rely not only on drug medication, which depends on adverse effects like hypoglycaemia, the elderly patients’ income and their compliance, but also on human support (family, carers), non-pharmacological strategies like diet, and cardio-metabolic rehabilitation through exercise. Conclusions Results showed an improved glycaemic control, a higher awareness of symptoms and the complications of diabetes. Apart from patients’ self motivation, more frequent contact with them is necessary to encourage better self-esteem, disease prevention and quality of life. Patients who changed their lifestyle formed one important link in educating the closed ones. The role of formal and informal carers is more difficult and needs a different approach from that for younger people, taking into account co-morbidities, age-related changes in functional and mental abilities, occupational history and socioeconomic status that influence health.

Access source material through DOI

Adherence to pressure ulcer prevention guidelines in home care: a survey of current practice

Aims and objectives.  To investigate the pressure ulcer prevalence in home nursing patients and to evaluate guideline adherence of measures for the prevention of pressure ulcers and the participation of informal carers in pressure ulcer prevention.

Background.  Since 2002, the Belgian Guideline for the Prevention of Pressure Ulcers was published on the Internet, but no information was available on guideline adherence in home care.

Methods.  A cross-sectional survey of pressure ulcer prevalence and guideline adherence was performed in a cluster randomized sample of 2779 clients of nine regional nursing departments in Flanders, Belgium. The Belgian Guideline for the Prevention of Pressure Ulcers was the reference standard for the evaluation of the guideline adherence.

Results.  There were 744 subjects at risk for developing pressure ulcers. The overall prevalence of pressure ulcers for the total sample population was 6·8%. The age-, sex- and risk-standardized prevalence per regional department varied between 4·9% and 9·1%. Of the 744 subjects at risk, 33 (4·4%) received preventive measures, which were in adherence to the Belgian Guideline for Prevention of Pressure Ulcers, 482 persons (64·8%) were administered measures, which did not adhere to the Belgian Guideline for Prevention of Pressure Ulcers and in 229 subjects (30·8%) at risk for developing pressure ulcers, prevention was lacking. For subjects with at least one pressure ulcer, the proportions were: 4·8% adherence, 76·6% no adherence and 18·6% no prevention. A proportion of 22·2% of the patients at risk and their informal carers were informed and motivated by the home care nurse to participate in the pressure ulcer prevention and their actual participation in the prevention was 21·4% of all risk cases.

Conclusions.  The adherence of nurses and clients to the guideline for pressure ulcer prevention was low.

Relevance to the clinical practice.  The study demonstrates a detailed evaluation of guideline adherence to pressure ulcer prevention in an individual patient situation, with special attention for materials and measures, which are not adequate and not recommended by the Belgian Guideline for the Prevention of Pressure Ulcers.

Access source material through DOI

The impact of caring for an adult with intellectual disability and psychiatric comorbidity on carer stress and psychological distress

Background: Given that carers of individuals with intellectual disability (ID) and carers of individuals with psychiatric disorders experience elevated levels of stress and psychological distress, carers of individuals with both ID and a comorbid psychiatric disorder are potentially at even greater risk for psychological difficulties. The aim of the present study was to investigate the psychological well-being of carers of adults with a dual diagnosis compared with carers of adults with intellectual disability alone.

Method: Four-hundred and forty-two questionnaires were sent to four community services and seventy-five family carers of adults with intellectual disability responded. Psychological well-being of carers was assessed using the Questionnaire on Resources and Stress – Friedrich edition (QRS-F) and the General Health Questionnaire (GHQ). Comorbid psychopathology for their family member with ID was assessed using the Reiss Screen for Maladaptive Behaviour (RSMB).

Results: Twenty-four percent of the individuals with ID were reported to have comorbid psychopathology. Between-group analyses compared carers of people with ID and comorbid psychopathology to carers of people with ID alone. Regression analyses examined the relationship between psychopathology and other care-related variables to carer stress and psychological distress. Carers of people with ID and comorbid psychopathology were found to have significantly higher levels of stress and psychological distress than carers of people with ID alone. Autism was found to be the only significant predictor of both stress and psychological distress among measures of psychopathology.

Conclusions: Additional comorbid psychopathology in individuals with intellectual disability has a significant impact on their carers’ psychological well-being.

Access source material through DOI

Work, gender, and stress in family cancer caregiving

Goals of work: The objective of this study was to examine whether employment status and gender was associated with family cancer caregivers’ reports of stress and well-being.

Materials and methods: Using a correlational, cross-sectional survey design, this study included 183 primary caregivers (i.e., those individuals who provided the most help to persons with cancer). Caregivers were recruited in a radiation oncology cancer clinic and were administered detailed interviews that collected a wide range of information about the stress process.

Results: Bivariate and multivariable analyses suggested a number of differences between various classifications of employment status and gender. In particular, women who worked appeared more likely to provide instrumental care to the person with cancer when compared to men who did or did not work. In addition, women who worked were more likely to report feelings of exhaustion and fatigue when compared to men who worked.

Conclusions: The results emphasize the need to consider the context of cancer care when analyzing the stress process. When faced with employment, women appear particularly at risk for emotional distress and greater perceived care demands. Utilizing tools that identify cancer caregivers at risk based on work, gender, or other contextual variables may inform the development and targeting of clinical interventions for this population.

Access source material through DOI

Supporting working carers: do policies in England and The Netherlands reflect 'doulia rights'?

Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of ‘doulia’ (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and ‘doulia rights’ (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers’ policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.

Access source material through DOI

Evercare study: More Hours Spent Caregiving Equated with Greater Decline

Previous studies have shown that caregivers spend on average 4.5 years caregiving, with the needs escalating over time, thus impacting caregiver health significantly over that period (Caregiving in theU.S., AARP and National Alliance for Caregiving). The Evercare study revealed that the more time caregivers spend caring for a loved one, the greater their health decline. This is even more true for those caregivers providing a higher level intensity of caregiving such as giving medications or injections, bathing, feeding, dressing or other activities of daily living. Caregivers who reported their health got a lot worse as result of caregiving (15%) spend an average of 58 hours a week caregiving and those with a moderate deterioration in health (44 percent) spend an average of 42 hours a week caregiving.

Original source (some source materials require subscription or permission to access)

What kinds of jobs help carers combine care and employment?

This paper provides information about what job characteristics promote or inhibit maintaining employment while caring. Using a nationally representative longitudinal data set—the Household Income and Labour Dynamics in Australia (HILDA) survey—the paper traces the effects of the onset of care on labour force participation. This study used multivariate techniques to analyse five clusters of influences that might affect carer employment: the intensity of care responsibilities; the employees’ own characteristics; the characteristics of their employment; their workplace arrangements; and the employee’s rating of the stress, satisfaction and security associated with their job. The results showed that moderate to intensive caring responsibilities militate against maintaining labour force participation in the face of caring responsibility. Working as a casual employee, in a job without supervisory responsibilities, in smaller firms, with poor leave arrangements, no flexibility in hours and low job security all decrease the probability that carers remain in employment.

Original source (some source materials require subscription or permission to access)

Reforming the Mental Health Act: part II; high risk patients; presented to Parliament by the Secretary of State for Health and the Home Secretary by command of Her Majesty December 2000

White paper setting out detailed proposals to establish a new statutory framework to ensure that those with severe mental disorder get care and treatment to meet their needs and, secondly, that the public is protected from those who may, occasionally, pose a threat to their safety. The proposed changes will affect: local and health authorities; service providers in the statutory, independent and voluntary sectors; and people with mental disorders and their carers. Part 1 of the paper, in a separate volume, presents the legal framework, and Part 2, looks at issues involving high risk patients.

Original source (some source materials require subscription or permission to access)

Options for the Eligibility Framework for Care & Support under regulations stemming from the Social Services and Well-being (Wales) Act 2014: revised final draft 13 June 2014

This document outlines options for the design of national eligibility criteria for Wales. These were with advice from a Technical Working Group on Eligibility considering this issue on behalf of the Welsh Government in March and April 2014. The report has been prepared following the final meeting of the group on 2 April 2014 and refined through a wider stakeholder engagement process during May and June 2014. Determining eligibility is one step in a person’s journey through the system of care and support and should not be seen in isolation from other core elements of the new service model introduced through the Act. It is an element within a wider process for assessing and responding to the needs of the individual that reflects and complements the process for assessing and responding to the needs of the wider community. The report has been produced to support the development of regulations for determining eligibility. Further details about the wider process of assessing, planning, delivering and reviewing care and support will be developed through regulations under other sections of the Act and through the overarching code of practice

Original source (some source materials require subscription or permission to access)

Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients

Background and Purpose— Many stroke patients and informal carers experience a decreased quality of life after discharge home and are dissatisfied with the care received. We assessed the effectiveness of an outreach nursing care program.

Methods— In a multicenter trial, 536 stroke patients were randomized at discharge to standard care (n=273) or standard care plus outreach care (n=263). The outreach care consisted of 3 telephone calls and 1 home visit within 5 months after discharge by 1 of 13 stroke nurses. Patients were masked for the trial objectives. Six months after discharge, they assessed the 2 primary outcomes: quality of life (Short Form 36 [SF-36]) and dissatisfaction with care. Secondary measures of outcome were disability, handicap, depression, anxiety, and use of health care services and secondary prevention drugs. Informal carers assessed strain, and social support. Analysis was by intention to treat.

Results— Twelve patients died before follow-up, 38 declined outcome assessment, and 486 completed the primary outcome assessments. Outreach care patients had better scores on the SF-36 domain “Role Emotional” than controls (mean difference 7.9 [95% confidence limit, 0.1 to 15.7]). No statistically significant differences were found on the other primary outcome measures. For secondary outcomes, no statistically significant differences were found, except that intervention patients used fewer rehabilitation services (relative risk, 0.66 [0.44 to 1.00]) and had lower anxiety scores (median difference 1 [0.19 to 2.79]).

Conclusions— This outreach nursing stroke care was not effective in improving quality of life and dissatisfaction with care of recently discharged patients.

Access source material through DOI

Adult social care: a consultation paper

This consultation paper reviews the law relating to adult social care in England and Wales. Current law has been identified as complex and outdated and these proposals aim to establishing a simple, consistent, transparent and modern framework. The paper is in 14 parts. Part 2 considers the approach to the reform of adult social care law. Parts 3 to 10 are concerned with how social services decide on what services to provide. Areas discussed include: community care assessments; carers' assessments; eligibility for services; Section 21 of the National Assistance Act 1948 and Section 2(1) of the Chronically Sick and Disabled Persons Act 1970; ordinary residence; scope of adult care services; delivery of services. Parts 11 to 13 looks at more general issues in social care law such as joint working; safeguarding adults at risk; and strategic planning. The provisional proposals are set out in Part 14. The consultation period ends on 1 July 2010.

Original source (some source materials require subscription or permission to access)

Unsung heroes who put their lives at risk? : informal caring, health and neighbourhood attachment

Background Previous studies have highlighted the effects of informal caring on mental health, but evidence for its wider impact remains scant. We explored associations between informal care and a range of health (and health-related) measures. We also considered previously neglected differences between informal care ‘at home’ and care elsewhere, along with neighbourhood attachment as a possible modifier of the associations we found.

Methods The study involved a large population survey in two Primary Care Trusts. Data were collected by postal survey of 15465 adults; subjects were selected from the local General Practice register. 12.7 per cent of respondents identified themselves as carers. Health measures included psychiatric morbidity, bodily pain, self-assessed health, health-related behaviours, obesity, prescribed drugs and high levels of GP consultation.

Results Of nine measures considered, care at home was associated with psychiatric morbidity (OR 1.46, 95 per cent CI 1.25–1.70), bodily pain (OR 1.19, 95 per cent CI 1.02–1.39), and obesity (OR 1.59, 95 per cent CI 1.34–1.89). Care ‘away’ was associated with smoking (OR 1.26, 95 per cent CI 1.03–1.54), and inversely with both sedentary living (OR 0.70, 95 per cent CI 0.58–0.85) and poor self-assessed health (OR 0.78, 95 per cent CI 0.62–0.99). Health tended to be poorer when carers lacked a sense of neighbourhood attachment.

Conclusions Informal carers are likely to face serious health challenges besides anxiety and depression. Caring is associated with several aspects of poor health, which are themselves predictors of premature mortality. Proactive and wide-ranging support is required, the more so in neighbourhoods where carers feel alienated. Research and policy should distinguish carers ‘at home’ from carers ‘away’.

Access source material through DOI

Diabetes Management Using Modern Information and Communication Technologies and New Care Models

Background: Diabetes, a metabolic disorder, has reached epidemic proportions in developed countries. The disease has two main forms: type 1 and type 2. Disease management entails administration of insulin in combination with careful blood glucose monitoring (type 1) or involves the adjustment of diet and exercise level, the use of oral anti-diabetic drugs, and insulin administration to control blood sugar (type 2).

Objective: State-of-the-art technologies have the potential to assist healthcare professionals, patients, and informal carers to better manage diabetes insulin therapy, help patients understand their disease, support self-management, and provide a safe environment by monitoring adverse and potentially life-threatening situations with appropriate crisis management.

Methods: New care models incorporating advanced information and communication technologies have the potential to provide service platforms able to improve health care, personalization, inclusion, and empowerment of the patient, and to support diverse user preferences and needs in different countries. The REACTION project proposes to create a service-oriented architectural platform based on numerous individual services and implementing novel care models that can be deployed in different settings to perform patient monitoring, distributed decision support, health care workflow management, and clinical feedback provision.

Results: This paper presents the work performed in the context of the REACTION project focusing on the development of a health care service platform able to support diabetes management in different healthcare regimes, through clinical applications, such as monitoring of vital signs, feedback provision to the point of care, integrative risk assessment, and event and alarm handling. While moving towards the full implementation of the platform, three major areas of research and development have been identified and consequently approached: the first one is related to the glucose sensor technology and wearability, the second is related to the platform architecture, and the third to the implementation of the end-user services. The Glucose Management System, already developed within the REACTION project, is able to monitor a range of parameters from various sources including glucose levels, nutritional intakes, administered drugs, and patient’s insulin sensitivity, offering decision support for insulin dosing to professional caregivers on a mobile tablet platform that fulfills the need of the users and supports medical workflow procedures in compliance with the Medical Device Directive requirements.

Conclusions: Good control of diabetes, as well as increased emphasis on control of lifestyle factors, may reduce the risk profile of most complications and contribute to health improvement. The REACTION project aims to respond to these challenges by providing integrated, professional, management, and therapy services to diabetic patients in different health care regimes across Europe in an interoperable communication platform.

Access source material through DOI

The well-being of young people who care for a dependent relative: An interpretative phenomenological analysis

Developing health care systems have placed an emphasis on unpaid, informal care giving from family members as a community health resource. It is estimated that there are between 19,000 and 51,000 young carers in the UK who are at increased risk of physical and psychological ill health. Therefore, the aim of this study was to explore the personal experiences of young carers in relation to their well-being using interpretative phenomenological analysis (IPA). Semi-structured interviews were carried out with five young carers and the verbatim transcripts served as the data for an IPA. Three themes emerged: (1) what caring means; (2) isolation and distancing from others; and (3) integrating caring. The participants struggled to make sense of caring, found it relentless, overwhelming and frustrating. They experienced stigma, which led to secrecy and withdrawal, cutting them off from their social worlds and the benefit of social support. They actively sought to integrate caring into their emerging sense of self and identity, and derived a sense of pride from caring and used this to combat feelings of uncertainty and isolation.

Access source material through DOI

Weekly PQs - Wales/Cymru

The article presents information about the written parliamentary questions from the Welsh Assembly during the period of October 19 to 26, 2006. Questions to the Minister of Culture regarding the quality of Public Libraries, to the Minister of Education regarding the newly-qualified teachers and their answers are presented. Questions regarding support for young carers, number of pupils taking A-levels Science and Mathematics in 2005-06, and risk of fire in schools are also presented.

Factors associated with nursing home entry for older people in Taiwan Republic of China

Taiwan is facing a rapid change in the composition of its population. As the population ages, a greater demand for long-term care services and, in particular, nursing homes is expected. Before deciding who really needs nursing home care, it is important for policy makers to understand the current pattern of utilisation and what factors are associated with entry. This research assesses the relative importance of predisposing, enabling and need factors that lie behind this. It is based on a survey of elderly people in registered nursing homes, a comparison with a national sample of elderly people in their own homes and interviews with the lucid elderly patients (i.e. could communicate with no problems) and their carers. It was found that nursing home entry was associated with advanced age, gender, educational level and dependency levels of elderly people. After controlling for age, need factors have the greatest impact on admission. Specific medical problems such as cardiovascular, neurological and skeletal muscular diseases were also major contributors. Although most elderly people in Taiwan are cared for in their own homes by their families, under certain circumstances entry to a nursing home seemed inevitable. Decisions about nursing home entry were mainly taken within a family context with adult children being the main players while professionals played a relatively minimal role.

Original source (some source materials require subscription or permission to access)

Caring at a distance: learning and practice issues

Emphasis on support for informal carers focuses on those who provide, in the words of the Carers (Recognition and Services) Act 1995, 'substantial' and 'regular' care. Following research and policy, professional education has also developed interest in those who live with the people they support, such as co-resident spouses and children of all ages. This article considers those who probably do not define themselves as carers and are usually referred to as 'relatives' or 'family', living at a distance from an older relative. It explores their possible need for support as well as the form and level of their involvement in relation to care managed services. It describes key areas or events to draw out practice issues and concludes with a discussion of the extent to which care management can work with such relatives. In many ways caring at a distance forces an examination of what is meant by 'care' and who can legitimately claim this as an emotion or status. The rationale for such interest is therefore three-fold. If social workers and social work educators restrict the meaning and their definitions of carers to those who provide 'hands on' services, as part of the care package, they risk alienating relatives from the learning experience of students. In doing so they may neglect these highly valued supports of older people and may leave relatives distressed and disempowered by anxiety over their contract with social work agencies.

Access source material through DOI

A Social Contract?

Carers have greater risk of ill health and unemployment according to the latest comprehensive research for Carers UK. Sue Yeandle outlines what reforms are needed. [Introduction]

Original source (some source materials require subscription or permission to access)

Physical health concerns of the patient, the family and the carer

Physical health monitoring is crucial in the light of current knowledge about the risks associated with schizophrenia and its treatment. Cooperation between psychiatrists, patients and informal carers can significantly enhance patient wellbeing in this regard. Moreover, an advocacy approach elevates patients from being passive recipients of care to active participants in an integrated system that has outcome benefits for all stakeholders. Considerable progress is being made in this regard, although there is still a long way to go to maximise the benefits of carer involvement in the global management of schizophrenia.

Access source material through DOI

Emotional reactions and practical problems of the caregivers of hemodialysed patients

BACKGROUND: The international literature consistently shows that the psychosocial outcomes of the informal carers (caregivers) of chronically ill patients are influenced by factors such as personality traits and perceived social support, but few studies have investigated these variables in the caregivers of hemodialysed patients, and the reciprocal experience of chronicity.; METHODS: Fifty hemodialysed patients and their principal caregivers were recruited. They were administered specific questionnaires to evaluate their emotional stability and anxious/depressive reactions, the perceived burden related to the patients' condition, the quality of their family relationships and knowledge of the disease, and the degree of satisfaction with their lives. The study design was correlational and comparative. The data were analysed using Student's t test and Pearson's correlation.; RESULTS: The patients were significantly more anxious and depressed than their caregivers, and had a more negative perception of their family relationships; they also had significantly higher neuroticism scores. Although the caregivers showed good emotional stability and a relatively low level of perceived burden, they stated that their daily lives were not very interesting and involved few social contacts. Twenty-five percent of them declared that they had financial problems; twelve percent also said they had to face problems of disease-related stigma and embarrassment.  CONCLUSIONS: The results suggest that emotional stability is an important psychological determinant of perceived distress among the caregivers of hemodialysed patients. Assessing this personality trait and the reciprocal experience of chronicity in patients and caregivers may help nephrology teams identify subjects at major psychological risk, and to select the appropriate psychological support.

Original source (some source materials require subscription or permission to access)

From independence to interdependence: integration means 'think family'

This article reviews current policies and their impact on carers' lives, and highlights the potential limitations of a more personalised approach to care. Using some key research findings and illustrative case studies, the article argues that we should build on the achievements of the personalisation reforms, but not limit our ambition to offering individuals more choice and control over their services. Instead, there should be a focus on individuals achieving ordinary life chances and families achieving emotional and financial sustainability. For people to experience a truly integrated response to their needs, professionals must be able to achieve integration not only across service boundaries, but also across their responses to inter‐linked individuals. Recognising this lessens the risk of offering care solutions that result in trade‐offs between one family member's independence and another's.

Access source material through DOI

Employment status, social ties, and caregivers’ mental health

The purpose of this study of mid-life and older women was to assess the relation between informal care provision and depressive symptoms, taking into account concurrent demands on women's time (including multiple caregiving roles and employment outside the home) as well as participants’ access to potentially supportive social ties.

This cross-sectional study included women ages 46–71, free from major disease, who provided complete health and social information in the 1992 Nurses’ Health Study follow-up survey (n=61,383). In logistic regression models predicting depressive symptoms, we examined the interaction between employment outside the home and informal care provision for a disabled or ill spouse or parent. We also investigated level of social ties, measured with the Berkman–Syme Social Network Index, as a potential modifier of the association between informal care provision and depressive symptoms.

In all analyses, higher weekly time commitment to informal care for a spouse or parent was associated with increased risk of depressive symptoms. This relationship persisted whether women were not employed outside the home, were employed full-time, or were employed part-time. Higher weekly time commitment to informal care provision was associated with increased risk of depressive symptoms whether women were socially integrated or socially isolated. However, both informal care provision and social ties were potent independent correlates of depressive symptoms. Therefore, women who reported high spousal care time commitment and few social ties experienced a dramatic elevation in depressive symptoms, compared to women with no spousal care responsibilities and many social ties (OR for depressive symptoms=11.8; 95% CI 4.8, 28.9). We observed the same pattern among socially isolated women who cared for their parent(s) many hours per week, but the association was not as strong (OR for depressive symptoms=6.5; 95% CI 3.4, 12.7). In this cross-sectional study, employment status did not seem to confer additional mental health risk or benefit to informal caregivers, while access to extensive social ties was associated with more favorable caregiver health outcomes.

Access source material through DOI

Future of social media in health and care with co-production

Future of health in EU faces the triple challenges of ageing, fiscal restriction and inclusion. In the UK the number of aged people will increase to 6.6 million in the next 25 years. In Scotland, the group people 74+ are projected to increase most dramatically by 82% by 2035. That statistics show every day the needs of older people are growing and an increasing number of carers are required. Now the number of carers are around 10% of population of the UK. In next 25 years the population of carers will rise to 9 million. The current value of care is worth an estimated £119bn per year - considerably more than total spending on the NHS. Hence government searches for ways to reduce costs while maintaining quality of care. The full participation of informal carers in the co-production of health and care has the potential to play a significant role in the sustainability of health and care delivery. A pressing issue is how to coordinate this massive resource with the formal health and care system to enable true co-production of health and care. Increasingly e-health, is seen as the tool to re-shape healthcare systems. In particular, social media (SM) are seen as critical enabler for co-production.

Our study investigates the current and possible future for SM as an enabler of co-production in health and care. To achieve these aims two main sets of questions are asked: what are the current uses of SM in health and social care? How can SM be reshaped to enable health and care coproduction? We consider a typology of opportunities and limitations of SM for health and care: - Existing health and care service bundles with existing or new SM tools - New health and care service bundles with existing or emerging SM tools

So far we have: a) Characterised current uses of SM and have identified benefits (and risks) of SM for health and care by reviewing the literature; b) Identified coordination tools and social sensemaking as key emerging trends in the use of SM; c) Identified health and care integration as a key driver for service redesign and for the adoption of co-production and have begun to characterise the needs SM can meet in this context. d) And begun preparing to collect data through collaboration with the Living it Up Project (a sub-project of DALLAS study - Delivering Assisted Living Lifestyles at Scale, a £23 million partnership between the Technology Strategy Board and government departments, launched in June 2011) which is a programme aiming to support better health, wellbeing and active lifestyles in Scotland and is exploring new services and modes of cooperation

Access source material through DOI

Using technology to support people at risk of falling

In 2012 it was estimated 800 people fell daily in the West Midlands and fall detectors were an under-used resource. A fall detector does not prevent a fall but sends an alert so that someone knows a person has fallen making a difference to living independently by restoring confidence. There is a direct correlation between recovery and how long people lie on the floor after a fall; the speedier the response, the lower the risk of hospital admission and the shorter the length of hospital stay and subsequent support requirements on discharge. The Health Design & Technology Institute, Coventry University and the West Midlands Regional Telehealthcare Network and Warwickshire PCT were funded by NHS West Midlands to evaluate the use of fall detectors within the West Midlands. The initial phase of the project used rapid appraisal techniques for swift assessment of local perceptions of issues about the use of fall detectors across the region.

Evaluation included: • literature review and market appraisal of existing fall detector technology/products • focus groups with telehealthcare leads and informal carers • service experience of 20 people issued with fall detectors as part of their care package through interviews • collecting data from existing sources about the range of fall detectors used and a review of fall care pathways across the region.

From this project we have a clearer understanding from people who wear fall detectors, their carers and the staff who support them about why, when and where they are currently used and more importantly, how they could be deployed to maximum effect within a falls care pathway. The project identified; • a lack of knowledge and low public and practitioner awareness was a barrier to the use and adoption of fall detectors; • a need for sharing of best practice across the region to develop services further • fall detection is only part of the spectrum of falls interventions required to support people at risk of falling and there was a need to consider AT more widely in falls prevention and response. • improved design of fall detectors was needed to broaden their appeal to people who could benefit from wearing them. The dialogue has been opened with companies that design, manufacture and supply equipment.

The second phase of the project is nearly complete. This aims to raise the profile of assistive technology and falls amongst the general public and staff in health and social care through production of resources including: • a leaflet to promote the use of technology in falls prevention • a good practice guide on the successful use of fall detectors supported by digital case studies • a falls prevention smart phone app containing advice for carers to support self care through awareness raising and access to low level technologies readily available in the high street/ internet • identification and sharing of good practice, service innovation and whole system thinking within falls prevention and response services across the region through an in-depth case study approach promote recovery, with the flexibility to be tailored to support individuals with other long term conditions. 

Access source material through DOI

Introduction of a new NHS electric-powered indoor/outdoor chair (EPIOC) service: benefits, risks and implications for prescribers

Objective: To determine problems associated with electric-powered indoor/outdoor wheelchairs (EPIOCs) and the benefits perceived by their users.

Design: Hospital-based cohort study of all patients referred over a 19-month period.

Setting: Regional Wheelchair Service for North West London serving nine district wheelchair services.

Subjects: Of the 174 subjects referred, 10 withdrew their application or were found to be unsuitable at screening, 164 were assessed and 124 were prescribed chairs. One hundred and thirteen subjects were interviewed by telephone four months after provision of the chair.

Main measures: Demographic and diagnostic data; current chair usage; self-reported accidents and component faults were compared with those recorded in the unit records; new activities embarked on since delivery; and benefits reported for main carers.

Results: Seventeen ‘mishaps’ were reported by 15 users including tipping from chairs (6) and falls during transfers (3). Three probably reflected mechanical failure. Component failure was found in 39% of EPIOCs, mostly affecting control boxes (22), frames (10) and footrests (10). New activities were undertaken by 56 (50%) users, usually shopping and visits to friends/family. Eighty-five per cent of users felt that the chairs made life easier for their informal carers through increased independence, reducing transfers and reduced need for ‘pushing’.

Conclusions: The component failures and self-reported accidents (some potentially dangerous) have implications for the NHS, manufacturers, prescribers and users. EPIOCs enhance the independence of severely physically disabled individuals in the community and assist carers by lessening dependence and enhancing social interaction. This study demonstrated the need for follow-up of EPIOC users and chairs.

Access source material through DOI

Malnutrition in the UK: policies to address the problem

In 2007, the estimated cost of disease-related malnutrition in the UK was in excess of £13×109. At any point in time, only about 2% of over 3 million individuals at risk of malnutrition were in hospital, 5% in care homes and the remainder in the community (2–3% in sheltered housing). Some government statistics (England) grossly underestimated the prevalence of malnutrition on admission and discharge from hospital (1000–3000 annually between 1998 and 2008), which is less than 1% of the prevalence (about 3 million in 2007–2008) established by national surveys using criteria based on the ‘Malnutrition Universal Screening Tool’ (‘MUST’). The incidence of malnutrition-related deaths in hospitals, according to government statistics (242 deaths in England in 2007), was also <1% of an independent estimate, which was as high as 100 000/year. Recent healthcare policies have reduced the number of hospital and care home beds and encouraged care closer to home. Such policies have raised issues about education and training of the homecare workforce, including 6 million insufficiently supported informal carers (10% of the population), the commissioning process, and difficulties in implementing nutritional policies in a widely distributed population. The four devolved nations in the UK (England, Scotland, Northern Ireland and Wales) have developed their own healthcare polices to deal with malnutrition. These generally aim to span across all care settings and various government departments in a co-ordinated manner, but their effectiveness remains to be properly evaluated.

Access source material through DOI

Burden of Alzheimer's disease: population-based estimates and projections for New Zealand, 2006-2031

OBJECTIVE: To estimate the burden of Alzheimer's disease (AD, including 'mixed' dementia) in New Zealand in 2006, and project this burden out to 2031. METHOD: An incidence to prevalence methodology was utilized, the foundation of which is a discrete time Markov model allowing for multiple stages of disease (early vs late). Population estimates and projections, and all-cause mortality rates, were obtained from Statistics New Zealand. In the absence of usable New Zealand data, data on disease incidence and progression were obtained from systematic reviews of the international (mainly European, Australian and North American) literature. Projection scenarios included a demographic scenario in which change resulted only from increases in population size and ageing; a prevention scenario in which incidence rates were reduced by 25% from 2011; a treatment scenario in which disease progression rates were likewise reduced by 25% from 2011; and a combined scenario capturing both interventions. RESULTS: The model estimated that approximately 28000 people are currently living with AD (whether formally diagnosed or not), approximately 55% in the early and 45% in the late stage of the disease; approximately 6600 people newly develop AD each year; and approximately 2300 people die from (as opposed to with) this condition. The model projected that the prevalence of AD will increase approximately 2.5-fold (to approx. 70000 people) by 2031, if demographic drivers are unopposed. Plausible improvements in prevention and treatment, however, acting together, could reduce this growth by up to 50%, so that the prevalence of AD only doubles. CONCLUSION: Even this more optimistic projection has profound implications for the funding and provision of dementia care services, as well as for patients, their families, informal carers and the psychogeriatric workforce. New service configurations and models of care will be necessary. Access, quality and coordination standards for home care, day care, respite care, residential care and specialist services (including memory clinics) will need to respond accordingly.

Access source material through DOI

A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation

Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.

Implications for Rehabilitation

  • Stroke is a sudden event that often leaves stroke survivors and their families in crisis.

  • The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.

  • Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.

  • Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.

Access source material through DOI

Safeguarding in a personalised era

Personalisation is about letting older and disabled people take risks others take for granted. But this means councils must find new ways of keeping them safe. [Introduction]

Original source (some source materials require subscription or permission to access)

Going home from hospital: the carer/patient dyad

Aims. This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England.

Background. The Community Care Act and the Carers Recognition and Services Act placed responsibility on service providers to ensure the smooth discharge of patients from hospital making sure that appropriate community services are in place to support the patient and their informal carer following discharge from hospital. The study, from which this paper is taken, identified patients at risk of unsuccessful discharge and tracked the experiences of the patient and their carer through the discharge process. For the purpose of the study unsuccessful discharge is defined as unplanned readmission within 6 weeks of discharge or extended length of stay.

Design. The study combined qualitative and quantitative methods to identify factors leading to unsuccessful discharge. Logistic regression was used retrospectively with the records of 1500 patients to identify factors predicting unsuccessful discharge. A sample of medical patients predicted to be at risk of unsuccessful discharge, their formal and informal carers, were followed through the discharge process using qualitative techniques to look at decision-making and outcomes related to discharge.

Findings. This paper presents findings relating to patient/carer experiences of the discharge process. It explores the obligate moral climate in which the role of carer is negotiated between professionals, patients, family members, friends and neighbours and the differing assumptions about duty associated with caring roles in hospital and in family and community settings.

Conclusion. The discussion adopts a critical theory perspective to examine the contradictions confronting practitioners, patients and carers arising from hospital policies which promote cost-effective and efficient use of expensive technical resources while simultaneously seeking to identify and meet the needs of patients and carers for care.

Access source material through DOI

Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study

Considerable suffering is experienced by carers of patients with dementia. Most existing studies do not consider the coexistence of subjective and objective aspects that cause, interacting to each other, this suffering. The authors: (1) define the high-risk group of caregivers on the bases of the scores obtained on the four scales evaluating burden, distress, depression and anxiety (BDDA) taken into account simultaneously and (2) evaluate risk factors related to the high level of BDDA. 419 elderly outpatients with dementia and their caregivers were enrolled. Patients were evaluated for their cognitive, neuropsychological and functional impairment and for comorbidity. Caregivers were evaluated with four scales for the assessment of burden, distress related to neuropsychological disturbances, depression and anxiety. Cluster analysis was used to identify the group with the High level of BDDA (HBDDA). By multiple logistic analysis, disability, specific behavioural disturbances of the patients as well as caregiver's age, type of relationship and living in the south of Italy were observed to be a major risk factor for HBDDA.  Conclusion: The targeted use of scales specifically assessing BDDA of the caregiver and the identification of particular patient and caregiver characteristics are able to allow a precise and early definition of caregivers at high risk of burden and distress. This might be helpful in planning the correct social/clinical/rehabilitative approach. Copyright © 2005 John Wiley & Sons, Ltd.

Access source material through DOI

The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

Access source material through DOI

Informal Caregivers and the Risk of Nursing Home Admission Among Individuals Enrolled in the Program of All-Inclusive Care for the Elderly

PURPOSE: We sought to determine whether participants in the Program of All-Inclusive Care for the Elderly (PACE) with an informal caregiver have a higher or lower risk of nursing home admission than those without caregivers.

DESIGN AND METHODS: We performed a secondary data analysis of 3,189 participants aged 55 years or older who were enrolled in 11 PACE programs during the period from June 1, 1990 through June 30, 1998. Cox proportional hazard models determined whether having any caregiver, as well as specific caregiver characteristics, such as either living separately from the enrollee, being over the age of 75 years, providing personal care, not reducing or quitting work to provide care, or not being a spouse, predicted time to nursing home admission.

RESULTS: Fewer than half of the participants (49.4%) lived with a caregiver, and 12.4% had no caregiver. Individuals who lived with their caregiver were frailer than either those who lived separately or those without a caregiver. We measured frailty in terms of functional and cognitive status, incontinence, and multiple behavioral disturbances. The presence of a caregiver did not change the risk for institutionalization. None of the caregiver characteristics were associated with a higher risk of nursing home admission.

IMPLICATIONS: Unlike individuals in the general population, participants in PACE who lack an informal caregiver are not at higher risk of institutionalization. Further research is required to ascertain whether PACE's comprehensive formal services compensate for the lack of informal caregiving in limiting the risk for institutionalization.

Access source material through DOI

People into Employment: supporting people with disabilities and carers into work

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the ‘pathway model’, the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.

Access source material through DOI

Quality of life of Australian family carers: implications for research, policy and practice

As part of an international, multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well-being of the carers and considering the long-term needs of family members with disability who rely on family carers for daily support when designing services.

Access source material through DOI

Care management, dementia care and specialist mental health services: and evaluation

Objective: To evaluate a model of intensive case management for people with dementia based in a community-based mental health service for older people.

Method: Quasi-experimental design. Individuals in one community team setting received case management and were compared with those in a similar team without such a service. Fortythree matched pairs were identified. Eligible older people and their carers were interviewed at uptake and again at 6 and 12 months.

Results: The impact of the scheme upon placement occurred in the second year at the end of which 51% of the experimental group remained at home compared with 33% of the comparison group. For the experimental group significant improvements in the social contacts of older people were noted; a decrease in the stress of their carers was observed, together with a reduction in their input to the care of the client; and there were significant improvements on ratings of overall need reduction, aspects of daily living and level of risk. Differences between the two groups based on service receipt showed higher costs for the experimental group.

Discussion: The benefits to older people and their carers confirms previous findings that the most effective case management interventions are those targeted on a highly specific client group. Issues which influence the cost-effectiveness of intensive case management are discussed. The benefits of locating this service within a specialist mental health team are explored in the context of current initiatives to promote greater service integration between health and social services. Copyright © 2002 John Wiley & Sons, Ltd.

Access source material through DOI

Applying Risk Society Theory to findings of a scoping review on caregiver safety

Chronic Illness represents a growing concern in the western world and individuals living with chronic illness are primarily managed at home by family caregivers. A scoping review of the home-care literature (2004-2009; updated with review articles from 2010 to January 2013) on the topic of the caregiver revealed that this group experiences the following safety-related concerns: caregivers are conscripted to the role, experience economic hardship, risk being abused as well as abusing, and may well become patients themselves. Methodology and methods used in the scoping review are presented as well as a brief overview of the findings. The concepts of risk and safety are defined. Risk Society Theory is introduced and used as a lens to view the findings, and to contribute to an understanding of the construction of risk in contemporary health-care. [Abstract]

Access source material through DOI

People with dementia living alone: what are their needs and what kind of support are they receiving?

Background: In the U.K. about 141,460 people with dementia (PWD) live alone. They are at risk of social isolation and inadequate social and medical supervision. The aims of this study were to identify the needs of PWD living alone and to compare the needs of PWD living alone versus those living with others. It was predicted that PWD living alone would have significantly more unmet needs than those living with others.; Methods: 152 PWD were interviewed about their cognitive status and quality of life (QoL); and 128 informal carers were interviewed about the PWD's QoL, social networks, behavioral and psychological symptoms (BPSD), functional status, and services used. For 24 PWD no carer was available. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Researchers rated PWD's needs. One-third of the PWD (50) were living alone.; Results: PWD living alone had significantly more unmet needs (M = 3.9, s.d. 3.1) than those living with others (M = 2.0, s.d. 2.0) (U = 1578, p < 0.01) particularly in the areas of looking after home (χ2 = 17.23, p < 0.001), food (χ2 = 13.91, p < 0.002), self-care (χ2 = 10.23, p < 0.002) and accidental self-harm (χ2 = 16.51, p < 0.001). The most frequent unmet needs were daytime activities (27, 54.0%), company (26, 52.0%), psychological distress (22, 44.0%), eyesight/hearing (16, 32.0%), and accidental self-harm (16, 32.0%). Conclusion: PWD living alone are a vulnerable group who are at increased risk for unmet social, environmental, psychological and medical needs. This study illustrates the need to identify these individuals and to make provisions among social service agencies to monitor their well-being regularly and provide a higher level of support when needs are identified.

Access source material through DOI

The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed. A combination of descriptive statistics and qualitative analysis of these data revealed that social and cultural factors formed the basis of patients’ and informal carers’perceptions of cardiovascular risks and social information networks provided the main source of informationabout cardiovascular risk. For the staff, known risk factors based on epidemiological evidence (lack of exercise and diet) formed the basis of their perceptions of the patients’ cardiovascular risk factors. However, for all the participant groups (i.e. patients, informal carers and staff) the risk factors – diet and exercise were indicated as being the patients’ intended lifestyle changes., The results illustrate potential interplay between ‘social’ and ‘cultural’ context and perceptions of cardiovascular risk and incongruency between perceptions of risk and perceptions of the patients’ intended lifestyle change. These results may assist nurses in giving effective advice to patients and relatives about lifestyle change following myocardial infarction and inform future policy for cardiac rehabilitation.

Access source material through DOI

Abuse of vulnerable people with dementia by their carers: can we identify those most at risk?

Objective: We wanted to explore possible associations between characteristics of carers, dementia sufferers and the caring situation and the presence of abuse that was acknowledged by carers.

Methods: Eighty-two carers of dementia sufferers were interviewed in their homes about three types of abuse (verbal abuse, physical abuse and neglect) using a structured questionnaire.

Results: Fifty-two percent (n = 43) carers admitted to having carried out some form of abuse. Verbal abuse was the most common form (n = 42, 51%), while 20% (n = 16) of carers admitted to physical abuse and 4% (n = 3) to neglect abuse. Significant associations were found between verbal abuse and psychological ill health in the carer and behavioural problems in the dementia sufferer. Physical abuse was significantly associated with higher levels of self-reported good health by the carer. High expressed emotion measured in carers was highly correlated with all types of abuse.

Conclusion: It is possible to identify situations where people with dementia may be at high risk of abuse from their carers. Any effective intervention strategy should address psychological health problems in the carer, behavioural problems in the dementia sufferer and a strategy to manage high levels of expressed emotion in these situations.

Access source material through DOI

Identifying target groups for the prevention of depression among caregivers of dementia patients

Background: Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort.

Methods: The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated.

Results: The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses.

Conclusion: Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.

Access source material through DOI

Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation

Background Nearly 50 million Americans provide informal care to an older relative or friend. Many are members of the "sandwich generation", providing care for elderly parents and children simultaneously. Although evidence suggests that the negative health consequences of caregiving are more severe for sandwiched caregivers, little is known about how these associations vary by sociodemographic factors. Methods We abstracted data from the Behavioral Risk Factor Surveillance System to determine how the association between caregiving and health varies by sociodemographic factors, using ordinal logistic regression with interaction terms and stratification by number of children, income, and race/ethnicity. Results The association between informal caregiving and health varied by membership in the "sandwich generation," income, and race/ethnicity. This association was significant among subjects with one (OR = 1.13, 95% CI [1.04, 1.24]) and two or more children (OR = 1.17, 95% CI = 1.09, 1.26]), but not in those without children (OR = 1.01, 95% CI [0.97, 1.05]). Associations were strongest in those earning $50,000-$75,000 annually, but these income-dependent associations varied by race/ethnicity. In Whites with two or more children, the strongest associations between caregiving and health occurred in lower income individuals. These trends were not observed for Whites without children. Conclusions: Our findings suggest that the added burden of caregiving for both children and elderly relatives may be impacted by income and race/ethnicity. These differences should be considered when developing culturally appropriate interventions to improve caregiver health and maintain this vital component of the US health care system.

Access source material through DOI

Burden of informal carers in northwest Ireland: A pilot study of factors that influence burden

Introduction Research has shown that approximately 67% of carers experience extreme mental tiredness, a decrease in their quality of life and a deterioration in their physical health since taking on a care-giving role. Aims and objectives This study aims to identify factors that influence carer burden and in doing so, identify the sub-populations of carers who are most susceptible to burden. Methods In northwest Ireland, 53 informal carers referred to the Carers Association, Sligo were contacted and met for a face-to-face interview. Measurements used included demographic data, the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index and Brown's Locus of Control Scale. Results Of the 53 carers, 43 were females and 10 males (age range: 32–81 years, mean age of 64.5 years). Of the corresponding 53 patients, 21 were females and 32 males (age range: 17–92 years, mean age of 72.1 years). Multiple linear regression analysis showed that sex of carer, marital status and the patient's behavioural problems were statistically significant independent factors, which influenced carer burden (p < 0.01). Female sex and greater patient behavioural problems increased susceptibility to burden and being married increased resilience towards burden. Conclusions: The ability to predict which carers are more susceptible to burden allows physicians to more quickly identify “higher risk” carers, facilitating routine check-ups by physicians and carer support services. Further research should explore why female and unmarried carers are more susceptible to burden and whether it is possible to tailor support services to their individual needs.

Access source material through DOI

J15 A care model in huntington's disease: delivering care with carers

Introduction The multi-faceted nature of Huntington's disease (HD) presents an argument for professionals to work in close collaboration with care givers in training and service provision. It is argued that there is a case to further develop services where part of the required care is jointly delivered by professionals and carers at the same clinical setting. This will enhance mutual understanding of the scientific and clinical aspects of HD together with specific individual needs. While professionals are at risk of overgeneralization and ‘stereotyping’ patients, carers find it difficult to disentangle HD from the ‘person’ behind it. It is also sometimes difficult for carers to utilize the outcome of various assessments therapeutically to benefit their loved ones and ‘lighten up’ their care giving burden. Our model Carers are usually invited to give formal talks to the team and trainees. A carers’ representative is always invited to service development meetings. That person does also act as a mediator seeking other carers’ views and communicating any concerns to managers. Similarly, our team members are regular attendees to the local support group meetings. This is not only for educational purposes but also to communicate and seek views on service changes. Team members did joint publications with carers. In the context of our inter-disciplinary clinic, a carer is always available at the waiting area explaining to patients what they should expect. She also provides information about the disorder and the role of the support group using a variety of posters and leaflets. Many carers take the opportunity to discuss their concerns; often raising different matters with ‘a fellow carer’ than with other team members. She will then attend part of the meeting after the clinic to feedback on how the clinic was run. Further, that carer spends time with trainees who find talking to a carer with a firsthand experience of HD quite enlightening. They are then able to appreciate the consequences of this disorder on family dynamics. They also have a better understanding of how scientific and clinical information be personalized to help patients and families. Conclusion The value of involving carers in shaping services and tailoring individual care plans as well as training junior clinicians cannot be over estimated.

Access source material through DOI

Exploring the collective hospice caregiving experience

Background: Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures.

Objective: The goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time.

Design: A mixed model analysis was used.

Setting/subjects: Hospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification.

Measurements: Measured were caregiver quality of life, social support, anxiety, and depression.

Results: Caregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety.

Conclusions: Despite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair.

Access source material through DOI

Minding the money: a growing responsibility for informal carers

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although ‘minding the money’ has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that ‘minding the money’ is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

Access source material through DOI

Suppporting family caregivers: The hospital nurse's assessment of family caregiver needs: a smooth transition for the patient is the ultimate goal

This article is part one of a three-part series designed to help nurses help caregivers.

Families provide most of the care for older adults with chronic illnesses and disabilities. Estimates vary, but as many as 43.5 million Americans currently provide care for a person over 50. Because care giving for seriously and chronically ill people carries well-known physical, emotional, and financial risks, with consequences for the older adults as well as the caregiver, it's important to assess and address a family caregiver's needs, strengths, and limitations. Nurses have the training, skills, and opportunities to carry out these assessments.

Access source material through DOI

A Technology Platform for a Novel Home Care Delivery Service to Patients with Dementia

Chronic illnesses impose a great burden on the lives of citizens worldwide. In modern health-care, decentralisa-tion, dehospitalisation and self management of diseases at home are crucial factors for improving the every-day life of the patients and the people close to them. People in general tend to dislike obtrusive monitoring on their daily activities, so the challenge for home care solutions is to implement systems that provide clinicians with adequate and concise information on their patients' health status while at the same time be unobtrusive and easy to use. Moreover, such systems must ensure that they produce high impact warnings on the patient's status only when it is needed, in order to relieve clinicians from unnecessary workload and become a real tool for decision making and efficient patient follow-up. ALADDIN's objective is to develop a trustworthy and reliable system supporting patients with dementia and their informal carers in the management of the disease from home. Based on a set of monitoring parameters and measuring scales feeding a reconfigurable Event Detection mechanism used for Risk Assessment and Analysis, the system aims to early detect symptoms that predict decline, avoid emergencies and secondary effects and, ultimately, prolong the period that patients can remain safely cared at home. Informal carers are also closely monitored by the system whereas additional features supporting networking, education and cognitive stimulation are also integrated along with decision sup-port and patient management tools for the treating clinicians. The platform has been built based on credible methodologies for efficient patient follow-up, risk detection and adaptive care. It is an open, secure, interoper-able, integrated IT-solution designed according to Service Oriented Architecture principles. The benefits of this platform are expected to lie in the prevention of emergencies, in reduction of carer burden and in maintenance of the patient's and carer's quality of life.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Don't let carers slip off the radar

The article discusses the importance of supporting carers in Great Britain. It states that supporting carers is cost-effective because it prevents crisis intervention, unfitting hospital admission, and delayed transfer of care .It also mentions that if they are not supported, their physical and mental health will be at risk and young carers will have difficulty at school.

Finding the service you need: human centered design of a Digital Interactive Social Chart in DEMentia care (DEM-DISC)

Community dwelling people with dementia and their informal carers experience a lot of problems. In the course of the disease process people with dementia become more dependent on others and professional help is often necessary. Many informal carers and people with dementia experience unmet needs with regard to information on the disease and on the available care and welfare offer, therefore they tend not to utilize the broad spectrum of available care and welfare services. This can have very negative consequences like unsafe situations, social isolation of the person with dementia and overburden of informal carers with consequent increased risk of illness for them. The development of a DEMentia specific Digital Interactive Social Chart (DEM-DISC) may counteract these problems. DEM-DISC is a demand oriented website for people with dementia and their carers, which is easy, accessible and provides users with customized information on healthcare and welfare services. DEM-DISC is developed according to the human centered design principles, this means that people with dementia, informal carers and healthcare professionals were involved throughout the development process. This paper describes the development of DEM-DISC from four perspectives, a domain specific content perspective, an ICT perspective, a user perspective and an organizational perspective. The aims and most important results from each perspective will be discussed. It is concluded that the human centered design was a valuable method for the development of the DEM-DISC.

Original source (some source materials require subscription or permission to access)

African-American caregivers' breast health behavior

This study utilizes a stress and coping framework which includes cognitive appraisal, personal and environmental resources, coping and stress to examine factors related to African-American caregivers’ breast cancer screenings, including mammograms, clinical examinations and self-examinations. Using data from the Black Rural and Urban Caregivers Mental Health and Functioning Study, we performed separate logistic regressions for each type of breast cancer screening. Results reveal that having a regular doctor checkup (coping), care recipients having a cancer diagnosis (cognitive appraisal, and living in urban areas (environment resources) are associated with receiving a mammogram. Having greater income, having at least a high school degree (both personal resources) and having a regular doctor checkup (coping) are associated with receiving a clinical examination. Increased caregiver strain (stress), being 40 years old or older, social support (coping) and living in rural areas are associated with performing a self-examination. Targeting African-American caregivers, particularly in rural areas, for increased education on the importance of receiving breast cancer screenings is crucial to addressing health disparities. Making resources available, encouraging caregivers to get a clinical examination and a mammogram and directing public education toward caregivers are important points of intervention.

Access source material through DOI

Social problem-solving abilities and distress among family members assuming a caregiving role

We examined the relation of social problem-solving abilities to distress experienced by family members assuming a caregiving role for a loved one who had recently incurred a severe physical disability. Family members completed measures of problem-solving, depression and health, while their loved one participated in an inpatient rehabilitation programme. Correlational analyses indicated that a negative problem orientation was significantly predictive of caregiver distress, regardless of the degree of physical impairment of the care recipient. Women reported more distress on several measures than men, and disability severity was also associated with depression and impaired social functioning. Family members with a greater negative orientation may be at risk to develop psychological and health problems upon assuming a caregiver role. These results are discussed in light of theoretical models of social problem-solving, and implications are presented for psychological interventions and for health policy concerning family caregivers and their care recipients.

Access source material through DOI

Elder abuse : a systematic review of risk factors in community-dwelling elders

Objective: to undertake a systematic literature review of risk factors for abuse in community-dwelling elders, as a first step towards exploring the clinical utility of a risk factor framework. Search strategy and selection criteria: a search was undertaken using the MEDLINE, CINAHL, EMBASE and PsycINFO databases for articles published in English up to March 2011, to identify original studies with statistically significant risk factors for abuse in community-dwelling elders. Studies concerning self-neglect and persons aged under 55 were excluded. Results: forty-nine studies met the inclusion criteria, with 13 risk factors being reproducible across a range of settings in high-quality studies. These concerned the elder person (cognitive impairment, behavioural problems, psychiatric illness or psychological problems, functional dependency, poor physical health or frailty, low income or wealth, trauma or past abuse and ethnicity), perpetrator (caregiver burden or stress, and psychiatric illness or psychological problems), relationship (family disharmony, poor or conflictual relationships) and environment (low social support and living with others except for financial abuse). Conclusions: current evidence supports the multifactorial aetiology of elder abuse involving risk factors within the elder person, perpetrator, relationship and environment.

Access source material through DOI

Prime Minister’s Challenge on Dementia 2020: implementation plan

Sets out how the Government plans to meet the commitments made in the Prime Minister's challenge on dementia 2020, which aims to make England the best country in the world for dementia care, support, research by 2020. The plan is built around two clear phases: up to 2020, covering immediate actions with allocated funding; and 2018-2020 where actions are indicative and in less detail. It sets out the 50 commitments and the organisation responsible, across 4 themes: risk reduction; health and care; awareness; social action. These themes include using the NHS Health Check programme to educate more people earlier about the risks of developing dementia; building on work to improve rates of dementia diagnosis; developing post diagnosis support services with joined up personalised care for people with dementia; creating dementia-friendly health and care settings; and increasing awareness and social action with Dementia Friends and Dementia Friendly Communities initiatives.

Original source (some source materials require subscription or permission to access)

Reforming the Mental Health Act: part I; the new legal framework; presented to Parliament by the Secretary of State for Health and the Home Secretary by Command of Her Majesty December 2000

White paper setting out detailed proposals to establish a new statutory framework to ensure that those with severe mental disorder get care and treatment to meet their needs and, secondly, that the public is protected from those who may, occasionally, pose a threat to their safety. The proposed changes will affect: local and health authorities; service providers in the statutory, independent and voluntary sectors; and people with mental disorders and their carers. Part 1 of the paper presents the legal framework, and Part 2, in a separate booklet, looks at high risk patients.

Original source (some source materials require subscription or permission to access)

A critical ethnography of communication processes involving the management of oral chemotherapeutic agents by patients with a primary diagnosis of colorectal cancer: study protocol

Aim: To describe the protocol used to examine the processes of communication between health professionals, patients and informal carers during the management of oral chemotherapeutic medicines to identify factors that promote or inhibit medicine concordance.

Background: Ideally communication practices about oral medicines should incorporate shared decision-making, two-way dialogue and an equality of role between practitioner and patient. While there is evidence that healthcare professionals are adopting these concordant elements in general practice there are still some patients who have a passive role during consultations. Considering oral chemotherapeutic medications, there is a paucity of research about communication practices which is surprising given the high risk of toxicity associated with chemotherapy.

Design: A critical ethnographic design will be used, incorporating non-participant observations, individual semi-structured and focus-group interviews as several collecting methods.

Methods: Observations will be carried out on the interactions between healthcare professionals (physicians, nurses and pharmacists) and patients in the outpatient departments where prescriptions are explained and supplied and on follow-up consultations where treatment regimens are monitored. Interviews will be conducted with patients and their informal carers. Focus-groups will be carried out with healthcare professionals at the conclusion of the study. These several will be analysed using thematic analysis. This research is funded by the Department for Employment and Learning in Northern Ireland (Awarded February 2012).

Discussion: Dissemination of these findings will contribute to the understanding of issues involved when communicating with people about oral chemotherapy. It is anticipated that findings will inform education, practice and policy.

Access source material through DOI

Factors associated with family caregivers' burden and depression in Korea

This study determines the relative effects of functional impairment, cognitive impairment, and duration of care of the elderly on caregivers' depression, and identifies the factors that influence this relationship. The variables were entered individually, based on a logical order in the path modeling. For mediators, the order of three types of social support was assumed to be financial support, instrumental support, and emotional support. The order of five dimensions of caregiver burden was assumed to be impact on finances, feelings of abandonment, impact on schedule, impact on health, and sense of entrapment. Findings indicate that functional impairment had both direct and indirect effects on caregiver depression, and direct effects on impact on schedule, impact on health, and sense of entrapment. The effect of cognitive impairment on caregiver depression was primarily indirect but had direct impact on sense of entrapment. Duration of care had no direct effect on caregiver depression and burden, but did have indirect effects on impact on finances, feelings of abandonment, and impact on health through emotional support. Caregivers of elders with functional impairment were more likely to give care for longer periods, and those who give care for longer periods were likely to receive less emotional support and experience more burden in the dimensions of impact on finances, feelings of abandonment, and impact on health. Caregivers who experience greater impact on finances and impact on health ultimately were at higher risk of depression. The results have important implications for intervention models aimed to increase emotional support for the caregiver.

Access source material through DOI

Caregiving-related needs analysis: a proposed model reflecting current research and socio-political developments

The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors’ own research results (which also permitted them to design a specific instrument for the general assessment of caregivers). This paper describes the socio-psychological and socio-political background prompting the development of the model, the general instrument for the assessment of caregivers and an example of its use in a sample of caregivers of cancer patients. In the example study, 80 caregivers of cancer patients were asked to complete questionnaires evaluating their state and trait anxiety, depressive symptoms, personality traits, and specifically, their neuroticism or emotional instability, caregiving strain and the degree of satisfaction with their lives. In addition to the specific information obtained about this group of caregivers, the present results show that the completion of the ESPERT makes it possible to identify the proportion of subjects at economic, social and emotional risk, and to decide rapidly what kind of resources/interventions can be implemented, bearing in mind the most balanced cost–benefit ratio.

Access source material through DOI

Adult social care in England: overview: report by the Comptroller and Auditor General

Adults with long-term and multiple health conditions and disabilities are living longer. The age group most likely to need care – those aged 85 and older - is rising faster than the population as a whole. This report, the first in a series on adult care, describes a care system in which rising needs, reducing local authority spending, and reductions in benefits may be putting unsustainable pressure on informal carers and acute health services. It notes that local authorities’ total spending on adult social care fell 8 per cent in real terms between 2010-11 and 2012-13, and is projected to continue falling. The report highlights the main risks and challenges as the system is changed radically, some of which will be covered in more detail in future years. Among its key findings are: rising care needs and falling state spending; and that increasing pressures on other parts of the care and health systems; improvements are needed to the care system. 

Original source (some source materials require subscription or permission to access)

The effect of coping on the burden in family carers of persons with dementia

Objectives: This study explores the association between coping, measured by the extent of locus of control, and the burden of care on family carers of persons with dementia (PWD).

Method: Two hundred thirty PWD living at home and their family carers were recruited from 20 Norwegian municipalities. The carers’ burden was assessed by the Relatives’ Stress Scale (RSS) and coping by the Locus of Control Behaviour Scale. The PWD were assessed by the Neuropsychiatric Inventory (NPI-Q), the Physical Self-Maintenance Scale (PSMS), the Instrumental Activities of Daily Living (IADL) scale, and the Mini Mental Status Examination (MMSE).

Results: Locus of control (LoC) was found to be the most important factor associated with the burden on carers of PWD, even when we had controlled for the PWD variables, such as the NPI-Q score. The LoC and the carer's use of hours per day to assist the PWD were the only two variables the carers found that affected the extent of the burden. The NPI-Q was the most important variable in the PWD that affected the burden on the carers.

Conclusion: Carers who believe that what happens to them is the consequence of their own actions are likely to be less burdened than carers not expecting to have control. This finding gives a possibility to identify carers with a high risk of burden.

Access source material through DOI

Positive aspects of caregiving: rounding out the caregiver experience

Objectives: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes.

Method: This study used a national sample of caregivers derived from the Canadian Study of Health and Aging (part 2). Two hundred and eighty-nine caregivers caring for seniors living in the community were questioned about their experience of caregiving. Caregivers were asked whether they could identify any positive aspects related to their role, the type of positive aspects and to rate their feelings about caring. Using a conceptual model developed by Noonan and Tennstedt (1997), a staged stepwise multiple regression approach was used factoring the background/contextual variables, stressor variables (3 MS score, ADL limitations), mediator variables (positive aspects of caregiving, number of services used) and outcome variables (depression, burden and self-assessed health measures) into the model.

Results: Two hundred and eleven caregivers (73%) could identify at least one specific positive aspect of caregiving. An additional 20 (6.9%) could identify more than one positive aspect. Positive feelings about caring were associated with lower CES-D scores ( p < 0.001), lower burden scores ( p < 0.001) and better self assessed health ( p < 0.001).

Conclusion: Clinicians should inquire about the positive aspects of caregiving if they are to fully comprehend the caregiver experience and identify risk factors for negative caregiver outcomes. Copyright © 2002 John Wiley & Sons, Ltd.

Access source material through DOI

'Do I stay or do I go?'-job change and labor market exit intentions of employees providing informal care to older adults

This article examines whether providing informal eldercare to an older dependent person predicts employees' intentions to change jobs or exit the labor market and, if so, which particular aspects of both caregiving (e.g. time demands, physical/cognitive care burden) and their current work environment shape these intentions. We used data from a sample of 471 caring and 431 noncaring employees in Austria and split the analyses by gender. We found different aspects of informal caregiving to be associated with the intention to change jobs and with the anticipated labor market withdrawal of male and female workers. A time-based conflict between informal eldercare and paid work was significantly and positively related to the intended job change of female workers but not of their male counterparts. Flexible work arrangements were found to facilitate the attachment of female workers to their jobs and the labor market. Intentions to exit the labor market of male workers appeared to be triggered by a physical care burden rather than time demands. Copyright © 2012 John Wiley & Sons, Ltd.

Access source material through DOI

Essence of care 2010: benchmarks for safety

The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document provides the benchmarks for safety, so that people, their carers, visitors and staff feel safe, secure and supported. It starts by considering the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then considers the factors specific to safety, together with their supporting indicators. The factors are: orientation; assessment – risk of injury; assessment – risk to others; observation and privacy; planning, implementation, evaluation and revision of care; and positive culture. 

Original source (some source materials require subscription or permission to access)

Development of an integrated external and internal location system with activity monitoring

Although the potential of using location information to support people with dementia has been recognised, the uptake of location technology in this area has been limited compared with the uptake of standard Telecare techniques. The paper examines the reasons for this and describes a project, EASE (Extended Active Support Environment) which was commissioned by NHS South as part of their SBRI for Dementia programme, to develop a system which would address these issues and make location technologies a practical tool to support people with more advanced dementia. 

Access source material through DOI

Risk Factors for Developing Prolonged Grief During Bereavement in Family Carers of Cancer Patients in Palliative Care: A Longitudinal Study

Context: Family carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.

Objectives: To ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.

Methods: A longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n=167) and 13 months postdeath (T3; n=143).

Results: The PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.

Conclusion: Screening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.

Access source material through DOI

Grief reactions and depression in caregivers of individuals with Alzheimer's disease: results from a pilot study in an urban setting

The relationship between grief and depression in caregivers of individuals with Alzheimer's disease has not been clearly defined through empirical research. This pilot study examined the relationship between these two variables and determined the strength of their relationship. A racially diverse sample of caregivers was drawn from an urban setting on the east coast of the United States. Results indicated not only that a significant proportion of caregivers experience high levels of grief that may place them at risk of other difficulties, but also that grief is a significant predictor of increased depressive symptoms. Clinical social work implications are examined.

Access source material through DOI

Reading, writing and responsibility: Young Carers and Education

Across Australia, teachers, school counsellors and psychologists, welfare officers and Education department staff participated in the project by offering advice to the research team, by completing surveys and participating in focus group interviews. The research team would like to thank those who offered their time, experience and knowledge. In particular, we would also like to acknowledge the generosity, wisdom and insight of all the children and young people who participated in the project. It is hoped that this report will shed some light on their experiences at school and will lead to greater understanding and supportwithin the community.
Original source (some source materials require subscription or permission to access)

Unpaid carers hold the key to sustainable social care : is it time they got the credit?

This paper reviews the challenges faced by unpaid family carers and the current support and services available to them. It argues that current carer support should be built on and presents the evidence for doing so, including evidence of the opportunities to make substantial savings in residential care costs. The paper suggests a new way in which proposed resource allocation and personal budget systems could be developed in order to sustain caring, avoiding the risk of a new perverse incentive to families to end caring roles. The paper provides some modelling of the costs and benefits of this approach. 

Access source material through DOI

Unmet needs and depression among carers of people newly diagnosed with cancer

Aims: The aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics.

Methods: One hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18 years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D).

Results: Overall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r = 0.30, p < 0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses).

Conclusion: Findings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.

Access source material through DOI

Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of adults with learning difficulties in north-east England and their family and to appraise their care. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.

Access source material through DOI

Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

Objective: To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals. Design: Qualitative interview and focus group study. Setting: Community and hospital-based focus groups and interviews. Participants: Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11). Results: PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial. Conclusions PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease.

Access source material through DOI

Summary of the direct payments guidance 2011

A summary of the Community Care, Services for Carers and Children’s Services (Direct Payments) (Wales) Guidance 2011. Sections cover issues such as: developing direct payments services; consent, capacity and ability to manage direct payments; using direct payments; delivery issues, including choice and risk and Criminal Records Bureau checks; providing additional support for people who cannot make their own decisions (such as children and those receiving support under mental health laws); the importance of monitoring and review; and tackling problems such as what to do if money is not being spent properly. The summary makes reference to specific paragraphs of the full guidance throughout. Examples of questions to be answered in a care plan for a person who gets direct payments are included as an annex.

Original source (some source materials require subscription or permission to access)

Factors associated with depression in older carers

Objective: Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated.Methods: We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics.Results: Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression.Conclusions: These findings have important implications for interventions to target at-risk carers. [ABSTRACT FROM AUTHOR];Copyright of International Journal of Geriatric Psychiatry

Access source material through DOI

Caring for a relative with dementia: the perceptions of carers and CPNs

Older people with dementia living in the community are most likely to be cared for by other older people, predominantly spouses, who will be at increased risk of stress‐related health problems themselves. Appropriate support of such carers is crucial if carer breakdown and consequent care‐receiver admission to residential homes is to be avoided. This paper examines the experience of older carers of frail older people with dementia and examines the kind of support that is provided to such carers. In practice, the sole source of professional support received by older people in this study was from community psychiatric nurses (CPNs). CPNs' role did not comprise hands‐on care‐giving and family carers carried out most personal/physical and healthcare tasks themselves, aided in some cases by care workers. The paper concludes by suggesting that lack of support for carers in these activities requires redress.

Access source material through DOI

Narrative research methods in palliative care contexts: Two case studies

Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed, The authors' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals 'perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management.

Access source material through DOI

The dyadic interaction of relationships and disability type on informal carer subjective well-being

Purpose: Care-related factors have frequently been associated with elevated levels of distress and diminished subjective well-being. However, these variables have traditionally been considered independently. The objectives of this study were to explore the subjective well-being of informal carers in Australia and to specifically examine the effect of the dyadic interaction between the caring relationship and type of disability on the subjective well-being of informal carers.

Methods: Informal carers (n = 4,096) completed the Personal Wellbeing Index (PWI) and Depression and Stress Scales. Analysis of covariance was used to compare the subjective well-being of carers to the general population while controlling for socio-demographic factors. To examine the dyadic relationship, a multivariate analysis of covariance was employed.

Results: After socio-demographic variables were controlled, informal carers reported significantly lower PWI scores compared to the general population. The results of the multivariate analysis of covariance revealed a significant interaction between the caring relationship and the type of disability being managed on subjective well-being. No differences were found for symptoms of depression and stress.

Conclusions: The findings of this study imply that the detrimental effect of caring on subjective well-being is magnified for carers who support a child with a mental illness or multiple types of disabilities. These carers displayed the lowest levels of subjective well-being, highlighting the dyadic effects of care-related variables. Consideration of these factors is essential to target effective intervention programs for those most at risk of diminished well-being.

Access source material through DOI

Is caring associated with an increased risk of mortality?: A longitudinal study

Informal care is a fundamental component of care in the community which, given current demographic trends and increasing prevalence of debilitating chronic disease, is likely to assume even greater significance in future. Research indicates that caregivers are more likely than non-carers to report poor health, though this has usually been measured in terms of psychological or emotional health such as depression or ‘caregiver strain’. Relatively little is known about the effects of caring on physical health. This study examines the health of caregivers recorded in the 2001 Northern Ireland Census and their subsequent mortality over the following four years. Caregivers were a heterogeneous group, with those providing fewer hours of care being relatively more affluent than those providing care at greater intensities. Overall, caregivers had lower mortality risks than non-carers and effects were more pronounced for women, older people, and for those reporting poorer health at the start of the study period. While this study does not exclude the possibility of significant detrimental health effects of caring for some sub-groups of caregivers, it does add support to the growing body of literature which suggests that the positive aspects of caring have been underreported.

Access source material through DOI

Expertise and experience: People with experiences of using services and carers' views of the Mental Capacity Act 2005

The views of people with experiences of using services and the views of their carers about the 2005 Mental Capacity Act (England and Wales) are reported in this article. Interviews with ten people about the detail of the Act prior to its implementation revealed that they welcomed the principles of the Act, and were able to relate these to aspects of their experiences. The Act's framework for planning around care and treatment and for making advance decisions was seen as offering greater choice and empowerment. Comments were made about the need for the Act to be publicized by professionals, for practitioners to provide specific information and for people with experiences of using services and carers to be included in training and monitoring. The data also revealed some concerns about implementation processes, about missed opportunities for legislative reform and the difficulty of balancing risks and safeguards. Such issues are likely to be highly relevant to social work practice; social workers are alerted to the expertise existing among many people with experiences of using services and carers and to the variations in opinion and knowledge likely to be found among people using services and carers.

Access source material through DOI

Experiencing dementia: evaluation of Into Dementia

Background: Most persons with dementia in the Netherlands live at home, where they are cared for by informal carers such as family members or friends, who offer this care unpaid. Their care-task poses a high burden on these informal carers, increasing the risk of health problems and social isolation. Many informal carers indicate they want more information on the behaviour of those they care for.

Aim: To develop and evaluate Into D’mentia, a simulation set in a living kitchen in which visitors experience a day in the life of someone with dementia. During this ‘day’, modern techniques such as sensors and projections, simulate the limitations of having dementia. This intervention is evaluated on usefulness and user friendliness, and on its effect on empathy, attitudes towards dementia, coping, carer burden, person-centered care capabilities and care satisfaction.

Research: Nine informal carers and 23 care professionals took part in the research into the Into D’mentia simulation. Before and after their visit, they filled in several questionnaires, with, among others, their opinion on the usefulness and user friendliness of this experience.

Results: Participants found Into D’mentia a highly useful and user friendly development. They indicated that the simulation offered good insight in the life of someone with dementia, and that they could offer better care thanks to this experience. Participants also indicated that they often thought back on their experiences in the simulation, in order to better understand the behaviour of people with dementia.

Conclusion: Into D’mentia offers a unique, accessible way to experience the limitations dementia has on daily life. Users indicate that it is a useful and user friendly innovation. Into D’mentia appears to be a suitable method to support informal and professional caregivers.

Access source material through DOI

Care Act first-phase reforms: report by the Comptroller and Auditor General

This report considers if the Department of Health is carrying out phase 1 of the Care Act in a way that is likely to achieve the government’s objectives and be value for money. It focuses on the new duties to provide assessments and services to carers, and help for self-funders, examining: the policy, financial and demographic contexts within which the changes are being implemented (Part One); the Department’s arrangements to carry out the Care Act, and local authorities preparation for 2015-16 (Part Two); and funding which the Department has provided to introduce the Care Act in 2015-16 (Part Three). The report estimates that phase 1 of the Act will cost £2.5bn to carry out from 2013-14 to 2019-20, more than half of which is for carers’ assessments and services – a new entitlement and the largest single cost. The report acknowledges that the Department consulted carefully on the Act, to understand the main risks and respond to sector concerns, and that there is wide support for the Act. 

Original source (some source materials require subscription or permission to access)

How do informal caregivers of patients with cancer cope: A descriptive study of the coping strategies employed

Purpose: A trend exists towards moving from the hospital and caring for the patients with cancer at home, which has directed the burden of caring to the family. As a result the numbers of informal caregivers, who assumed the care of their loved ones, has increased rapidly. The aim of the study is to explore the ways that families use to cope with the stressors and hardships of caregiving and expand the knowledge about coping.

Methods: This is a descriptive research design, with the use of a convenience sample of 130 dyads. Consenting patients identified their primary family caregiver who was asked to participate in the study.

Key results: The majority of the caregivers employed emotionally focused ways of coping with the caregiving burden such as: “I was hoping for a miracle” (mean 2.19), “I was hoping that time would change things and simply waited” (mean 2.14) and “I found consolidation in my faith to God” (mean 2.05). Assertive ways of coping such as “I expressed my anger to the patient” (mean 0.78) and “I dared to do something risky” (mean 0.98) were less likely to be used by the caregivers.

Conclusions: Findings are consistent with those of previous research that informal caregivers experience substantial psychological morbidity in the form of depression in addition to caregiver burden when they assume the role of the informal caregiver. Caregivers employ various strategies in order to cope with the strains associated with the complex physical and emotional demands involved in caring.

Access source material through DOI

Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients

Objective: Female family caregivers consistently report higher levels of stress and burden compared to male caregivers. Explanations for the apparently higher psychological vulnerability of female caregivers are largely missing to date. This study assesses the correlates and determinants of caregiver burden in family caregivers of advanced cancer patients with a specific focus on gender differences.

Methods: Three hundred and eight self-identified main informal caregivers of advanced cancer patients were cross-sectionally assessed using structured questionnaires for caregiver burden and hypothesised determinants of burden, including sociodemographic characteristics, caring arrangements, support needs, hope and coping style. Gender differences and predictors of burden were assessed using t-tests, chi-squared tests and univariate linear regression. Significant univariate predictors were entered in an analysis of covariance separately for men and women.

Results: Burden was significantly higher in women. Hope was the most significant protective factor against burden in both genders, together with perceived fulfilment of support needs. Only in women emotion-oriented coping and being in employment while caring were significantly predictive of higher burden in the multivariate analysis. The model explained 36% of the variance in burden in men and 29% in women.

Conclusion: Psychological support interventions for family caregivers should take gender-specific risk factors into account. Interventions focusing on keeping up hope while caring for a terminally ill family member may be a valuable addition to palliative services to improve support for family carers. Women may benefit from interventions that address adaptive coping and strategies to deal with the dual demands of employment and caring.

Access source material through DOI

Using Education Technology as a Proactive Approach to Healthy Ageing

Bone Health in the Park was created in Ireland and is an online health promotion education resource focussing on bone health, healthy ageing and falls prevention. The programme was designed by an Advanced Nurse Practitioner in collaboration with an Education Technologist and primarily uses storytelling to promote education specifically on bone health and falls risk prevention for health care professionals, clients, families and informal carers. This paper reports on core deliverables from this programme from 2010 to 2015, and provides insight into their development, in addition to details on its clinical effectiveness by using technology enhanced learning to underpin health promotion initiatives.

Original source (some source materials require subscription or permission to access)

The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study

Background: The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer’s social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far.

Objective: This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia.

Methods: A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum.

Results: There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users’ depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported.

Conclusions: Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions.

Access source material through DOI

The burden of living with and caring for a suicidal family member

Background: The family has a primary role in caring for family members who are suicidal and in the prevention of future suicide. However, the impact that suicidal behaviour has on these family members is poorly understood.

Aim: To explore the lived experiences of participants who cared for suicidal family members.

Methods: Eighteen participants were interviewed using a short topic guide. Responses were digitally recorded and transcripts were analysed using thematic analysis.

Results: One overarching theme: “Hard work for the whole family” and four sub-themes: (i) Family burden, (ii) competing pressures, (iii) secrecy and shame and (iv) helplessness and guilt.

Conclusions: Caring for a suicidal family member may be euphemistically summarised as “hard work” that impacts heavily on the day-to-day tasks of other family members. Participants spent much time worrying and ruminating about the risk of suicide in their family member. Mental health care professionals ought to acknowledge and address the impact that suicidal behaviour has on family carers.

Access source material through DOI

Caring, employment and health among adults of working age: evidence from Britain and Belgium

Background: For those of working age, results are inconclusive when exploring the health impact of providing care. Moreover, population data is lacking and the impact of welfare policies on the caregivers’ health has not been yet analysed.

Methods: Associations between general health and care giving, adjusting for differences in employment and socio-economic position, were explored for working age adults using logistic regression models. Data came from the 2001 British census (n = 1 361 222, 5% sample) and from the 2001 Belgian census (n = 4 368 637). The final model was stratified by employment status, given the significant interaction between caregiving and employment status.

Results: In both countries, when compared with those providing no care, men and women providing ≥20 h of care per week had an increased risk of poor health. This increased risk was attenuated after adjustment for socio-economic position and particularly after adjustment for differences in employment status. However after stratifying by employment status, a dose response relationship between time spent caring and poor health was observed for the employed and unemployed, but not for the economically inactive.

Conclusions: Despite contrasting welfare systems, employment status plays an important role in the association between caring and health in both countries. For the economically active, providing more care increases the risk of poor health. Whilst formal employment may be good for general health, having to informally care whilst in formal employment may have a detrimental health impact.

Access source material through DOI

Keep an eye open for bogus callers: a guide for carers and care professionals

A carer is the person in regular contact with the person  cared for. Whether a care professional, a care worker or a carer (i.e. friend, relative or neighbour) carers are in a unique position to help prevent that person from becoming a victim of bogus callers.

Original source (some source materials require subscription or permission to access)

Psychosocial needs of informal carers of persons with schizophrenia: exploring the role of nurses

Introduction: In Spain and the United Kingdom, more than 80% of people with schizophrenia are cared for by informal carers who are at risk of experiencing chronic stress. If this stress is not dealt with in time, a more serious disorder could develop. The present article aims to explore the role of nursing in this group of carers and attempts to answer the question: to what extent do nurses' views of their role affect their practice with carers?

Design: A qualitative study within the framework of Grounded Theory was performed. Four in-depth interviews were analyzed.

Conclusions: Participants perceived carers as coworkers and as a resource for the patient, rather than as potential clients. However, the attitude of nurses seemed to be changing from a perspective focused on the patient and the illness to one that takes the carer's needs and health status into account. More data should be collected to confirm and explore these findings in greater depth.

Predicting mental health outcomes in female working carers: a longitudinal analysis

This study investigated the factors contributing to psychological distress and positive affect over time in female working carers of older people. Questionnaires (including measures of work-related, care-related, interpersonal and psychological aspects of working and caring) were distributed to 275 female working carers in the UK, the majority of whom were working as nurses in the National Health Service. In cross-sectional analyses, higher work stress and work demands predicted higher psychological distress among respondents. Better carer health, lower external pressures to care and higher work satisfaction predicted greater positive affect. The combined effects of greater work stress and work demands also predicted higher levels of psychological distress at follow-up (after one year), whereas younger age and lower work stress predicted greater positive affect over time. We conclude that more stressful and demanding work roles appear detrimental to carers’ mental health, while lower stress occupational roles may be beneficial, providing satisfaction and fulfilment outside of the caring role. Older female carers may be especially at risk of psychological distress, possibly due in part to increasing health problems of their own.

Access source material through DOI

Overcoming barriers: unpaid care and employment in England

An estimated 315,000 unpaid carers aged 16 to 64 in England, predominantly women, have left full-time or part-time employment to provide care. n A key threshold at which carers in England are at risk of leaving employment occurs when care is provided for 10 or more hours a week, a lower threshold than previously thought. n The public expenditure costs of carers leaving employment are estimated at £1.3 billion a year, based on the costs of Carers Allowance and lost tax revenues on foregone incomes alone. n Access to publicly-funded services by working carers is low, with only 4% of carers working full-time, and 6% working part-time, currently offered an assessment or review. n There is little evidence that councils systematically use services for the cared-for person as a means of supporting carers whose employment is at risk. n Councils target their support at people providing care for 35 hours a week or more and are therefore not in contact with large numbers of carers whose employment is at risk. n Despite an increasing emphasis in government policy on ‘replacement care’, the study has not found any scientific papers on the effectiveness of services for the cared-for person (‘replacement care’) as a means of supporting working carers in England. n There is a need for further evidence to support the development of policies around ‘replacement care’ for working carers in England.

Original source (some source materials require subscription or permission to access)

Burden of caring: risks and consequences imposed on caregivers of those living and dying with advanced heart failure

Purpose of review: To summarize the latest research on the risks and consequences of the burden that may be imposed on informal carers of persons living and dying with advanced heart failure.

Recent findings: A systematic search in PubMed over the period 2013?2014 ultimately revealed 24 original articles included in this review. From this research update it can be concluded that the body of knowledge increased with more studies focusing on caregivers of patients with advanced heart failure.

Summary: Caregivers are important partners in care and their lives are seriously affected by the condition of advanced heart failure. Studies on the longitudinal effects of the caregiving role on caregiver's quality of life and on caregiver contributions to patient outcomes is still scarce. Focus of current research is moving towards relationship aspects. Dyadic-care typologies and the concept of incongruence within dyads in terms of conflicting perspectives on how to manage the heart failure are new and important concepts presented in studies presented in this review. Heart failure patients and their caregivers still lack sufficient palliative care and communication on prognosis and end-of-life care. More research is needed to determine the optimal time to start palliative interventions to support caregivers of patients with advanced heart failure.

Access source material through DOI

Prevalence of stress, anxiety and depression in with Alzheimer caregivers

Background: Alzheimer's disease presents a social and public health problem affecting millions of Italians. Those affected receive home care from caregivers, subjected to risk of stress. The present investigation focuses on stress, anxiety and depression in caregivers.

Methods: Data on 200 caregivers and their patients were collected using a specific form to assess cognitive, behavioural, functional patient (MMSE, and ADL-IAD) and caregiver stress (CBI). The relationship between stress, depression and disease has been assessed by means of a linear regression, logistic analysis which reveals the relationship between anxiety, stress and depression and cognitive problems, age, the patient's income.

Results: The caregivers are usually female (64%), mean age of 56.1 years, daughters (70.5%), pensioners and housewives (30%), who care for the sick at home (79%). Of these, 53% had little time for themselves, 55% observed worsening of health, 56% are tired, 51% are not getting enough sleep. Overall, 55% have problems with the patient's family and/or their own family, 57% at work. Furthermore, 29% feel they are failing to cope with the situation as they wish to move away from home. The increase in the degree of anxiety and depression is directly proportional to the severity of the illness, affecting the patient (r = 0.3 stress and depression r = 0.4 related to CBI score). The memory disorders (OR = 8.4), engine problems (OR = 2.6), perception disorders (OR = 1.9) sick of the patient with Alzheimer's disease are predictive of caregiver stress, depression is associated with the presence of other disorders, mainly behavioural (OR = 5.2), low income (OR = 3.4), patients < 65 years of age (OR = 2.9).

Conclusion: The quality of life of caregivers is correlated with the severity of behavioural disorders and duration of the Alzheimer's disease. The severity of the disease plays an important role in reorganization of the family environment in families caring for patients not institutionalised. It is important to promote measures to soften the impact that the patient has on the caregiver, and that, at the same time, improves the quality of life of the patient.

Access source material through DOI

Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis

Up to half of people with dementia in high income countries live in nursing homes and more than two-thirds of care home residents have dementia. Fewer than half of these residents report good quality of life and most older people are anxious about the prospect of moving into a nursing home. Robust evidence is needed as to the causes of admission to nursing homes, particularly where these risk factors are modifiable.

We conducted a systematic literature search to identify controlled comparison studies in which the primary outcome was admission to nursing home of older adults with dementia. Identified studies were assessed for validity and 26 (17 cohort and 9 case-control) were included. Qualitative and quantitative analyses were conducted, including meta-analysis of 15 studies.

Poorer cognition and behavioral and psychological symptoms of dementia (BPSD) were consistently associated with an increased risk of nursing home admission and most of our meta-analyses demonstrated impairments in activities of daily living as a significant risk. The effects of community support services were unclear, with both high and low levels of service use leading to nursing home placement. There was an association between caregiver burden and risk of institutionalization, but findings with regard to caregiver depression varied, as did physical health associations, with some studies showing an increased risk of nursing home placement following hip fracture, reduced mobility, and multiple comorbidities.

We recommend focusing on cognitive enhancement strategies, assessment and management of BPSD, and carer education and support to delay nursing home placement.

Access source material through DOI

Performance improvement handbook 2010-11

This handbook sets out the new approach to inspection adopted by the Social Work Inspection Agency (SWIA), as shaped by the Scottish Government's approach to inspection and the work of the Crerar review. It is intended to cover the period 2010-11, and marks the final stage of transition from the previous programme of performance inspections to a risk-based performance improvement approach. It covers performance improvement, council performance improvement 2010-2011, the shared risk assessment process, the initial scrutiny level assessment template and assessing the level of scrutiny required, case file analysis, file reading template and guidance notes, the performance improvement model, the role of the link inspector, involving people who use services and carers in performance improvement, quality assurance, inspection team roles and responsibilities, and essential documents and other evidence. It includes the code of conduct for all members of SWIA inspection teams. Annexes cover information about engaging with service users and carers.

Original source (some source materials require subscription or permission to access)

P-443 - Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is one of the leading causes of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

A preliminary typology of caregivers and effects on service utilization of caregiver counseling

Objectives: Caregivers (CGs) of older adults have unique and diverse needs for intervention. The present studies describe the characteristics of CGs and caregiving situations and how these relate to CG therapy utilization patterns in a community mental health setting.

MethodStudy 1: Through chart review, the researchers explored service utilization patterns and identified preliminary typologies of Caregiver Family Therapy (CFT) clients, N = 23. Study 2: By conducting a second chart review, the researchers sought to determine whether the categories that emerged in Study 1 applied to a second group of CFT clients, N = 36.

ResultsStudy 1: Four distinct categories of CGs emerged: High-Distress (high disorganization, high complexity), Resourceful but At-Risk (low disorganization, high complexity), Non-Committal (high disorganization, low complexity), and Model CGs (low disorganization, low complexity). Study 2: While the ability to classify CGs into category proved to have some inconsistencies, preliminary evidence suggests the ability to predict utilization once CGs were placed into category was good. In Study 2 a fifth category emerged: High Functioning but Static, which suggests CGs were on a continuum ranging from high to low on family organizational style and CG situation complexity.

Conclusion: While caregiving situations vary widely among families and across time, this article provides a preliminary typology of CGs that may assist clinicians in tailoring CG interventions to meet the needs of their clients based on information garnered early in therapy, perhaps as early as the intake process.

Access source material through DOI

Older people and falls: health status, quality of life, lifestyle, care networks, prevention and views on service use following a recent fall

Aim and objective.  This study has investigated older people’s experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use.

Background.  Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative.

Design.  An exploratory, qualitative design involving two time points.

Method.  A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes.

Results.  The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life.

Conclusions.  Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities.

Relevance to practice.  Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen.

Access source material through DOI

A systematic review of interventions for elder abuse

The purpose of this study was to use rigorous systematic review methods to summarise the effectiveness of interventions for elder abuse. Only eight studies met the inclusion criteria. Evidence regarding the recurrence of abuse following intervention was limited, but the interventions for which this outcome was reported failed to reduce, and may even have increased, the likelihood of recurrence. Elder abuse interventions had no significant effect on case resolution and at-risk carer outcomes, and had mixed results regarding professional knowledge and behaviour related to elder abuse. The studies had significant methodological limitations that limit the ability to draw conclusions about the effectiveness of these interventions.

Access source material through DOI