What do patients and family-caregivers value from hospice care? A systematic mixed studies review.

BACKGROUND: It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. METHODS: ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. RESULTS: Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. CONCLUSION: Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research.

Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms.

BACKGROUND: Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all. METHODS: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms. RESULTS: Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway 'My Aged Care' phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months. CONCLUSIONS: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.

Accuracy of Caregiver Proxy Reports of Home Care Service Use.

Although much of the research on service use by older adults with dementia relies on proxy reports by informal caregivers, little research assesses the accuracy of these reports, and that which does exist, does not focus on home care services. This brief report compares proxy reports by family caregivers to those with dementia with provincial Ministry of Health records collected for payment and monitoring. The four home care services examined include home nursing care, adult day care, home support, and respite care. Data come from a province-wide study of caregivers in British Columbia, Canada. Caregiver reports are largely consistent with Ministry records, ranging from 81.0% agreement for home support to 96.6% for respite care. Spouses living with the care recipient (the vast majority of the sample) are the most accurate. Others, whether living with the care recipient or not, have only a 50-50 chance of being correct.

Effects of respite care training on respite provider knowledge and confidence, and outcomes for family caregivers receiving respite services.

Respite services are vital in supporting informal caregivers in need of a break from their caregiving duties. A respite training program aimed at developing respite provider competence and improving caregiver well-being was evaluated. Trainees experienced significant growth in their perceived respite knowledge and confidence to deliver respite from pretraining to posttraining. An objective core competency assessment confirmed posttraining knowledge in 10 core areas of respite. Family caregivers provided more favorable ratings on various measures of their well-being while receiving respite from a trained provider compared to before respite began and if respite were to end. Findings suggest that formal training prepares providers to deliver quality respite resulting in improved caregiver outcomes.

Key stakeholders' experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review.

BACKGROUND: Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development. METHODS: A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia', following PRISMA guidelines. Noblit and Hare's approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a 'line-of-argument' was developed. RESULTS: In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 'service providers', 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad's needs and preferences. CONCLUSION: Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward. TRIAL REGISTRATION: PROSPERO Registration Number: CRD42016050191 .

Improving the quality of life of palliative and chronic disease patients and carers in remote Australia with the establishment of a day respite facility.

BACKGROUND: In the Northern Territory (NT) there is a lack of respite services available to palliative care patients and their families. Indigenous people in the NT suffer substantially higher rates of poorly controlled chronic disease and premature mortality associated with poor heath than the Australian population as a whole. The need for a flexible, community based, culturally appropriate respite service in Alice Springs was identified and, after the service had been operating for 10 months, a qualitative evaluation was conducted to investigate the experiences of people involved in the use and operation of the service. METHODS: Semi-structured interviews were conducted with patients, carers, referrers, and stakeholders. A total of 20 people were interviewed. Interpretative Phenomenological Analysis was used inductively to analyse the transcripts. Two case studies are also described which illustrate in greater detail the impact the respite service has had on people's lives. RESULTS: From the semi-structured interviews, two superordinate themes along with a number of sub themes were developed. The two superordinate themes described both "The Big Picture" considerations as well as the pragmatics of "Making the Service Work". The sub themes highlighted issues such as being stuck at home and the relief that respite provided. The case studies poignantly illustrate the difference the respite service made to the quality of life of two patients. DISCUSSION: The findings clearly indicate an improvement in quality of life for respite patients and their carers. The respite service enabled improved care coordination of chronic and complex patients as well as improved medication compliance and symptom management. As a result of this evaluation a number of recommendations to continue and improve the service are provided.

Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review.

OBJECTIVE: Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia. METHODS: A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included. RESULTS: Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results. CONCLUSION: Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd.

Provision of dementia-related services in Canada: a comparative study.

BACKGROUND: Dementia is common, particularly among older adults, and is one of the major causes of dependency later in life. We sought to provide an overview and comparison of key services related to dementia care as the disease progresses in three large Canadian healthcare centres. METHODS: We identified family physicians, geriatric specialists, and dementia case managers from three major population centres in Canada with universal healthcare coverage. Using a standardized longitudinal dementia case vignette, participants were interviewed on services they would provide at each stage of the disease. We used principles of content analysis to generate codes and identify themes; appropriate time frames from the vignette fitting the necessary provision of services were derived from the Canadian consensus statement and determined in consultation with clinical experts. Proportions of participants that identified dementia-related care services were analyzed at each time point of the vignette using chi-square tests. RESULTS: Thirty-four healthcare providers from Calgary (Alberta), Edmonton (Alberta), and Ottawa (Ontario) participated. Review of our data identified seven overarching themes of dementia-related care services. Services provided in the community setting include future planning and related services, educational and social support services, and home care and respite services. Although all providers consistently identified educational and social support services (e.g. the Alzheimer Society) within the appropriate time frame, the provision of other services was variable. The proportion of providers reporting potential access of future planning services was significantly different across the three sites (Calgary, 91.7 %; Edmonton; 58.3 %; and Ottawa, 30.0 %), p = 0.012. Also, the proportion of providers that identified day program services were significantly different across the three sites (Calgary, 100.0 %; Edmonton, 91.7 %; and Ottawa, 60.0 %), p = 0.023 according to a chi-square test. CONCLUSIONS: We found important types of variability in service delivery among different regions in Canada for a typical patient with dementia and their family caregiver. Health systems can be calibrated by aligning services from different settings to appropriate time points in the vignette, which illustrates the dynamic course of service delivery and opportunities for improvement throughout the disease trajectory.

[Handover between home and respite care facilities : Delphi survey within the context of continuity of care for people with dementia]. / Überleitung zwischen Häuslichkeit und Kurzzeitpflege : Delphi-Befragung im Rahmen der Versorgungskontinuität von Menschen mit Demenz.

BACKGROUND: Criteria for the handover between healthcare settings were identified based on a review and on results of empirical data. AIM: This study was carried out to select the most relevant criteria for defining the quality of continuity of care of people with dementia (PwD) in the context of the handover between care at home and respite care facilities. MATERIAL AND METHODS: A modified classical two-step Delphi design was used in combination with a group Delphi design. RESULTS: A total of 28 core criteria with a consensus strength of > 60 % are presented. Safety-relevant information, especially the personal habits of PwD and the role of informal caregivers in the handover between care settings are important. Furthermore, the following general principles to ensure the quality of continuity of the care of PwD were deduced: completeness, verification, multipath communication, timeliness and topicality, accessibility and defined responsibilities, roles and standardization. DISCUSSION: A successful transition of PwD to respite care facilities relies on the provision of relevant information, considering personal habits, before the day of transition. Furthermore, a timely preparation for discharge is important. The individual needs of the informal caregivers with regard to their support should be considered. Professionals who are responsible in handover processes should have solid communication competence in order to collect relevant information from informal caregivers, who have a strong individual care experience with the PwD.

El alivio del dolor: un derecho humano universal / Pain relief: An universal human right

El dolor es uno de los síntomas que más sufrimiento produce en cualquier enfermedad y constituye un problema básico de salud en todo el mundo. Sin embargo, con frecuencia no recibe el tratamiento adecuado por razones culturales, religiosas, actitudes de la sociedad y de los profesionales sanitarios, así como por motivos políticos y económicos. Desde el punto de vista ético, aliviar el dolor es un derecho del ser humano y una obligación de los profesionales sanitarios. La responsabilidad de los profesionales en lo que respecta a proporcionar un control adecuado del dolor está recogida en el Juramento Hipocrático y en la Declaración de Ginebra, que exige ante todo velar por la salud del paciente. Desde un punto de vista legislativo, la legislación internacional en materia de derechos humanos obliga a los Estadosfirmantes a proteger con todos los recursos a su alcance los derechos que la misma garantiza, sin establecer expresamente el derecho a un alivio adecuado del dolor. Sin embargo, el derecho a la salud lleva implícito el derecho a un adecuado tratamiento del dolor. La Constitución Española de 1978, en su artículo 43, reconoce el derecho a la protección de la salud y por tanto el derecho de los ciudadanos a recibir una asistencia sanitaria adecuada. Así mismo, el artículo 43 incluye que compete a los poderes públicos organizar y tutelar la salud pública a través de medidas preventivas y de las prestaciones y servicios necesarios. Aun no contemplando expresamente el derecho al alivio del dolor, garantiza una adecuada asistencia sanitaria que no puede dejar de lado un tema tan importante como es el tratamiento del dolor. La Organización Mundial de la Salud (OMS) determinó que el alivio del dolor es un derecho fundamental y que incurre en una falta de ética grave aquel profesional de la salud que impida a un ser humano el acceso a la posibilidad de alivio del mismo. La OMS ha dictado los criterios indispensables para un buen control del dolor, entre los que recoge la adecuada formación de los profesionales de la salud y la disponibilidad de fármacos para el tratamiento del dolor. La actitud o comportamiento del que descuida algo o se descuida en algo se denomina 'negligencia'. Se podrían denominar así situaciones en las que no se realiza una terapéutica analgésica adecuada existiendo medios suficientes para hacerlo. Entre las razones que explican esta situación de 'negligencia terapéutica' se encuentra la reticencia a prescribir fármacos opioides debido a un miedo desmesurado a los efectos indeseables de los mismos, la prescripción a dosis inferiores a las analgésicas, a intervalos de dosificación superiores a los recomendados o en pautas a demanda, la administración de menos dosis de los fármacos prescritos por parte de Enfermería en la creencia errónea de que no deben suministrarse los analgésicos pautados cuando el enfermo se encuentra sin dolor y la resignación de los enfermos a sufrir dolor (AU)

Pain is one of the symptoms that more suffering produces in any disease, being a basic health problem worldwide. However, they often do not receive suitable treatment for cultural, religious, societal and health professionals attitudes as well as political and economic reasons. From the ethical point of view relieve pain is a human right and an obligation for health professionals. The responsibility of professionals with regard to providing adequate pain control is contained in the Hippocratic Oath and the Declaration of Geneva that guarantee the patients’ health. From a legislative perspective, international law on human rights forces signatories States to protect with all the resources at its disposal the guaranteed rights without expressly establish the right to adequate pain relief . However, the health right implies the right to an adequate pain management. The article 43 of the Spanish Constitution of 1978 recognizes the right to health protection and therefore the right of citizens to receive adequate health care. Likewise, Article 43 includes a matter for the public authorities to organize and safeguard public health through preventive measures and the necessary benefits and services. Even without specifically contemplating the right to pain relief, an adequate health care cannot ignore an important issue as pain relief. The World Health Organization (WHO), has stated that pain relief is a fundamental right and that incurs in a severe lack of ethic of the health professional who prevents a human from accessing the possibility of pain alleviation. WHO has issued the necessary criteria for a good pain control among which includes appropriate training of health professionals and the availability of drugs for the treatment of pain. The attitude or behavior that neglects something or neglected something is called negligence. They might as well be called situations where there are enough means to perform analgesic therapy and yet it is not done. The reasons for this situation of therapeutic negligence include reluctance to prescribe opioids due to the fear of the undesirable effects of them, prescribing a lower analgesic doses, prescribing drugs at intervals of exceeding the recommended dosage or is demand patterns, delivery by nurses of less doses of the prescribed drug believing that they should not administer the treatment when the patient does not have pain and finally resignation of patients to suffer pain (AU)

A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions.

BACKGROUND: Respite services are recommended as an important support for caregivers of children with life-threatening conditions. However, the benefits of respite have not been convincingly demonstrated through quantitative research. AIM: To determine the impact of out-of home respite care on levels of fatigue, psychological adjustment, quality of life and relationship satisfaction among caregivers of children with life-threatening conditions. DESIGN: A mixed-methods, pre-test and post-test study SETTING/PARTICIPANTS: A consecutive sample of 58 parental caregivers whose children were admitted to a children's hospice for out-of-home respite over an average of 4 days. RESULTS: Caregivers had below-standard levels of quality of life compared to normative populations. Paired t-tests demonstrated that caregivers' average psychological adjustment scores significantly improved from pre-respite (mean = 13.9, standard error = 0.71) to post-respite (mean = 10.7, standard error = 1); p < 0.001, 95% confidence interval: 1.25-5.11). Furthermore, caregivers' average fatigue scores significantly improved from pre-respite (mean = 14.3, standard error = 0.85) to post-respite (mean = 10.9, standard error = 1.01; p < 0.001, 95% confidence interval: 1.69-7.94), and caregivers' average mental health quality of life scores significantly improved from pre-respite (mean = 44.2, standard error = 1.8) to post-respite (mean = 49.1, standard error = 1.6; p < 0.01, 95% confidence interval: -9.56 to 0.36). Qualitative data showed caregivers sought respite for relief from intensive care provision and believed this was essential to their well-being. CONCLUSION: Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.

Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers.

BACKGROUND: There have been many studies on the unmet needs of palliative care patients and carers from the perspective of bereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients and their carers have received little research attention. AIM: As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers. DESIGN: The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DATA SOURCES: PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. RESULTS: Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. CONCLUSIONS: The focus therefore should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously.

Teenagers' and parents' views on a short-break service for children with life-limiting conditions: a qualitative study.

Few opportunities exist outside the home for children and teenagers with life-limiting conditions to have a break in a setting specifically designed and adequately staffed and resourced to meet their complex clinical, practical and emotional needs; until recently provision focused primarily on providing respite for parents/carers. Based on policy recommendations, a short-break service was established with the aim of working in partnership with families and voluntary and statutory agencies to provide a fun break for children and teenagers with life-limiting conditions and complement the range of services available. This qualitative study used interviews and focus groups to determine teenagers' and parents' views of the service. Three themes emerged: accessibility and communication; needs and boundaries; and shaping the service. Teenagers enjoyed regular planned residential breaks, access to skilled staff and bespoke facilities to support their needs, opportunities to meet others with life-limiting conditions and fun time away from home, thereby giving parents peace of mind, a regular planned break from care-giving, opportunities to meet other parents and to spend exclusive time with their other children. If specialist short-break services become part of the national range of services available, children and teenagers with life-limiting conditions and their parents and siblings could all benefit.

Participation of people with acquired brain injury: Insiders perspectives.

INTRODUCTION: Participation is important in rehabilitation of people with acquired brain injury (ABI). Studies have shown that their participation is problematic. It is, however, unknown how they experience their participation and what influences their participation. This study aims to answer the question how people with ABI experience participation and which environmental and personal factors may influence participation, as perceived by people with ABI. METHODS: A qualitative methodology was conducted by a team consisting of researchers, people with ABI and a mother of a daughter with ABI. Interviews and focus groups were held and followed by a working group in order to develop actions for improvement. RESULTS AND CONCLUSION: People with ABI contend that it is not the degree of participation that matters, but the quality of participation. They describe meaningful participation in terms of taking part, giving something and being someone. A model was constructed based on the experiences, which includes personal and environmental factors that, in interaction, may influence participation: participation is influenced by the process of recovery, support and treatment, the environment and society and communication and interaction. The study resulted in an overview of actions like continual care that may improve the participation of people with ABI.

Support/services and family carers of persons with stroke impairment: perceived importance and services received.

OBJECTIVE: To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important. DESIGN: Data from a cross-sectional study. SUBJECTS: A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project. METHODS: Carers were interviewed using a structured questionnaire. RESULTS: There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers. CONCLUSION: The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers' perceptions in order to individualize support/service, and thus make it more available and efficient.

Post-hospital medical respite care and hospital readmission of homeless persons.

Medical respite programs offer medical, nursing, and other care as well as accommodation for homeless persons discharged from acute hospital stays. They represent a community-based adaptation of urban health systems to the specific needs of homeless persons. This article examines whether post-hospital discharge to a homeless medical respite program was associated with a reduced chance of 90-day readmission compared to other disposition options. Adjusting for imbalances in patient characteristics using propensity scores, respite patients were the only group that was significantly less likely to be readmitted within 90 days compared to those released to Own Care. Respite programs merit attention as a potentially efficacious service for homeless persons leaving the hospital.

Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer.

INTRODUCTION: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. METHODS: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients' carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. RESULTS: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. CONCLUSIONS: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.

Review of ICT-based services for identified unmet needs in people with dementia.

Some of the needs that people with dementia and their informal carers currently perceive as insufficiently met by regular care and support services might be alleviated, or even be met, using modern Information and Communication Technology (ICT). The study described in this paper was designed to provide an insight into the state of the art in ICT solutions that could contribute to meet the most frequently mentioned unmet needs by people with dementia and their informal carers. These needs can be summarized as (1) the need for general and personalized information; (2) the need for support with regard to symptoms of dementia; (3) the need for social contact and company; and (4) the need for health monitoring and perceived safety. Databases that were searched include: PubMed, Cinahl, Psychinfo, Google (Scholar), INSPEC and IEEE. In total 22 websites and 46 publications were included that satisfied the following criteria: the article reports on people with dementia and/or their informal carers and discusses an ICT-device that has been tested within the target group and has proven to be helpful. Within the first need area 18 relevant websites and three studies were included; within the second need area 4 websites and 20 publications were included. Within the third and fourth need area 11 and 12 publications were included respectively. Most articles reported on uncontrolled studies. It is concluded that the informational websites offer helpful information for carers but seem less attuned to the person with dementia and do not offer personalized information. ICT solutions aimed at compensating for disabilities, such as memory problems and daily activities demonstrate that people with mild to moderate dementia are capable of handling simple electronic equipment and can benefit from it in terms of more confidence and enhanced positive effect. Instrumental ICT-support for coping with behavioral and psychological changes in dementia is relatively disregarded as yet, while support for social contact can be effectively realized through, for example, simplified (mobile) phones or videophones or (entertainment) robots. GPS technology and monitoring systems are proven to result in enhanced feelings of safety and less fear and anxiety. Though these results are promising, more controlled studies in which the developed ICT solutions are tested in real life situations are needed before implementing them in the care for people with dementia. It is recommended that future studies also focus on the integration of the current techniques and solutions.

Reluctance to care: a systematic review and development of a conceptual framework.

Primary lay carers are increasingly important in the care of patients with cancer, but their role can be complex and extended. Potential carers may feel anything from highly committed to not at all interested in caregiving, but powerful social norms pressure them to accept the role, and reluctance may be hidden to avoid censure. The purpose of this review was to gain insights into caregiving reluctance and its consequences. The findings were organized into 4 major dimensions: demographic, physical, psychological, and social. Three major outcomes were identified: deterioration in the carer-patient relationship, reduced quality of care, and institutionalization. Definitive answers to the review questions remain elusive. Choice seems to be a major indicator of caregiving reluctance, although reluctance may not remain static over the caregiving trajectory. Caregiving reluctance remains an underexplored topic, particularly in the context of cancer.