Understanding the impact of distance and disadvantage on lung cancer care and outcomes: a study protocol.

BACKGROUND: Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person's location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients' and informal carers' participation in and experience of the lung cancer care pathway. METHODS: A qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals' capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement. DISCUSSION: The study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway. PROTOCOL REGISTRATION: The study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48 ).

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values.

OBJECTIVE: Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available. METHODS: Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample. RESULTS: The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance). CONCLUSIONS: The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.

Health effects of caregiving and coping with severe mental disorders: A caregivers' experience.

Background: Informal caregivers are an essential health resource in the care of persons with severe mental disorders, particularly in South Africa where access to mental healthcare services is limited. Aim: The study aimed to explore and describe the coping strategies used by informal caregivers and the specific health impacts they face in the context of severe mental disorders in South Africa. Setting: The study was conducted in Bushbuckridge municipality situated in the northeastern parts of Mpumalanga province, South Africa. Methods: A descriptive qualitative methodology was used to conduct semi-structured interviews with 12 purposefully selected participants. Audio-recorded interviews were translated, transcribed and analysed inductively on NVivo12 using reflexive thematic analysis. Results: The themes identified were caregivers' experience of consequences of caregiving and caregivers' experience of coping with their caregiving role. Participants experienced negative consequences on their emotional, mental and physical health. The participants use internal and external resources to cope with the challenges they face, and many highlighted using emotion-focused coping strategies. Conclusion: The findings revealed an urgent need to develop support strategies to strengthen informal caregivers' coping and promote good health particularly in rural South Africa where informal caregivers play a crucial role in the management of severe mental disorders. Contribution: The finding demands that policymakers and healthcare providers prioritise the health and well-being of the informal caregivers. There should be policies targeted specifically at developing and implementing caregiver-orientated healthcare services.

Living well while providing support: validation of LTCQ-Carer for assessing informal carers' quality of life.

PURPOSE: Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway. METHODS: Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected. RESULTS: Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on 'time to yourself'. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach's α = 0.95), and a general construct (single factor loadings 0.43-0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive. CONCLUSION: LTCQ-Carer is a valid new measure for assessing family caregivers' quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway.

Informal carers' support needs, facilitators and barriers in the transitional care of older adults: A qualitative study.

INTRODUCTION: Inclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community. METHODS: A qualitative exploratory design was used with mixed-methods data collection. Seventeen semi-structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community-based advocacy and aged care providers; and eight semi-structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed. FINDINGS: All carers described the main social challenge that they needed to address in transitional care as 'Needing to sustain family'. Carers reported their social needs across five solutions: 'Partnering with carers', 'Advocating for discharge', 'Accessing streamlined multidisciplinary care', 'Knowing how to care' and 'Accessing follow-up care in the community'. Focus group participants endorsed the findings from the carer interviews and added the theme 'Putting responsibility back onto carers'. All healthcare practitioners described the main social challenge that they needed to address as 'Needing to engage carers'. They reported their social solutions in three themes: 'Communicating with carers', 'Planning with carers' and 'Educating carers'. DISCUSSION: Findings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult. CONCLUSIONS: Future sustainable and high-quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated. PUBLIC CONTRIBUTION: This study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community-based organizations providing care and advocacy support to informal carers.

A balance between putting on the researcher's hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research.

BACKGROUND: Public involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the perspective of researchers themselves of having involved members of the public in their research. Nevertheless, there is a general expectation for researchers to accept and embrace public involvement in research. This study aims to explore researchers' views of involving informal carers in health and social care research. METHODS: Eleven individual in-depth interviews with researchers in the fields of social work, caring science, health science and medical science constituted the dataset of this qualitative study, inspired by discourse psychology. RESULTS: The qualitative data analysis resulted in two interpretative repertoires describing researchers' views of involving informal carers in research, "Philosophy of Science" and "Personal relationships and growth". Both repertoires need to be recognized; however, as of today, the Philosophy of Science repertoire is more acknowledged, while the second repertoire describing empathy, relationships and emotions may be viewed as the researcher being "unprofessional". Further, the findings highlighted the dual perspective of being a researcher and a carer as creating opportunities for growth on the part of the researcher, on both a professional and a personal level. CONCLUSIONS: Researchers and their research work would benefit from acknowledging, discussing and reporting both interpretative repertoires in their publications, as well as recognizing the benefit of dialectal positions, for example, having a dual perspective as both a researcher and an informal carer.

The experiences of the caring dyad: (Un)articulated realities of living with cardiometabolic risk, metabolic syndrome and related diseases in severe mental illness.

BACKGROUND: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. AIM: This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. DESIGN: Between October 2018 and March 2020, we conducted 11 in-depth semi-structured interviews across 6 adult caring dyads, interviewing each individual separately. SETTING: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. VARIABLE BEING STUDIED: Participants were asked about the impacts of illness and caring on daily life. DATA ANALYSIS: Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. RESULTS: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. DISCUSSION AND CONCLUSIONS: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. PATIENT/PUBLIC INVOLVEMENT: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data.

BACKGROUND: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. METHODS: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. RESULTS: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. CONCLUSIONS: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.

Equity and the financial costs of informal caregiving in palliative care: a critical debate.

BACKGROUND: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. METHODS: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. RESULTS: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. CONCLUSIONS: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries.

BACKGROUND: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. METHOD: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. RESULTS: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. CONCLUSION: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice.

OBJECTIVE: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). METHOD: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. RESULTS: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. CONCLUSION: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support   QOL. The perspectives of people with dementia are informative when identifying needs.

Taste, choice and timing: Investigating resident and carer preferences for meals in aged care homes.

There has been little empirical investigation of the preferences of people living in aged care homes for food services. The aim of the present study was to elicit consumer preferences and their willingness to pay for food service in aged care homes. Current residents or their family members were invited to take part in the discrete choice experiment questionnaire administered via interview. Of the 109 eligible residents and 175 eligible family members approached for consent 121 (43%) participated, including 43 residents. Participant preferences were influenced by food taste, choice in relation to serving size, timing of meal selection, visual appeal, and additional cost. Participants indicated they would be willing to pay an additional $24 (US$18.42) per week for food which tasted excellent and $8 (US$6.14) per week to have choice in serving sizes. The study found that respondents were willing to pay a premium to receive food that met their expectations of taste, and for a high level of control over serving sizes, which has implications for the funding and provision of food and dining in long-term care in the future.

Knowledge gaps in patients with COPD and their proxies.

BACKGROUND: Although proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies. METHODS: In this cross-sectional study, we included stable patients with moderate to very severe COPD and their resident proxies (n = 194 couples). Thirty-four statements about generic health and COPD-related topics were assessed in patients and proxies separately. Statements could be answered by 'true', 'false', or 'do not know'. This study is approved by the Medical Research Ethics Committees United (MEC-U), the Netherlands (NL42721.060.12/M12-1280). RESULTS: Patients answered on average 17% of the statements incorrect, and 19% with 'do not know'. The same figure (19%) for the incorrect and unknown statements was shown by proxies. Patients who attended pulmonary rehabilitation previously answered more statements correct (about three) compared to patients who did not attend pulmonary rehabilitation. More correct answers were reported by: younger patients, patients with a higher level of education, patients who previously participated in pulmonary rehabilitation, patients with better cognitive functioning, and patients with a COPD diagnosis longer ago. CONCLUSIONS: Proxies of patients with COPD as well as patients themselves answer about two third of 34 knowledge statements about COPD correct. So, both patients and proxies seem to have an incomplete knowledge about COPD and general health. Therefore, education about general health and COPD should be offered to all subgroups of patients with COPD and their proxies. TRIAL REGISTRATION: This study is registered in the Dutch Trial Register ( NTR3941 ). Registered 19 April 2013.

'Shadowing' as a management strategy for chemotherapy outpatient primary support persons.

Despite growing numbers of patients with cancer receiving chemotherapy in outpatient settings and the corresponding increase in care demands on family and close friends, little is known about the experiences of those informal carers supporting people with cancer during their chemotherapy trajectories. Using an interpretivist theoretical framework, this study explored the experiences of primary support persons of chemotherapy outpatients through in-depth interviews with 17 participants nominated as their primary support persons by people receiving chemotherapy at a large tertiary hospital in Australia. The study demonstrates that primary support persons of chemotherapy outpatients face distinct challenges, being at the frontline of treatment and managing side effects with minimal support at home. This role involves sensitive provision of complex medical and social care in circumstances that profoundly challenge the everyday worlds of both patient and carer. From the moment of diagnosis, informal carers in this context face the 'double whammy' of needing to 'manage' the cancer diagnosis experience as well as the chemotherapy trajectory experience. This study points to the significant level of responsibility that primary support persons take on, and the extent to which patients and clinicians rely on their support and management skills. It also points, however, to the lack of recognition they receive for assuming this role, and their sense of frustration in the face of this invisibility. The conceptualisation of the informal carer role as a 'shadowing' role explicitly represents the protective, vigilant, but almost invisible, support role described by the participants in this study.

A systematic review of the economic evidence for interventions for family carers of stroke patients.

OBJECTIVES: To examine the economic evidence for interventions aimed at family carers of stroke patients. DATA SOURCES: Searches (limited to those published in English since 1990) were performed in key databases along with hand searches of relevant papers. REVIEW METHODS: Papers were restricted to studies including any economic data (broadly defined) for any intervention targeting carers explicitly or explicitly referring to a carer element, beyond involving carers in the care or intervention for patients (i.e. more than just carers being invited to observe an intervention targeted at the patient). Two reviewers independently screened full papers and extracted data using guidance from the National Institute for Health and Care Excellence, and quality assessment using the Newcastle-Ottawa Quality Assessment Scale (cohort studies), the Delphi list (randomised controlled trials) and guidelines on economic quality from the British Medical Journal. Data were reviewed descriptively as meta analyses were inappropriate due to non-comparability of studies. RESULTS: Ten papers were included in the review. These were heterogeneous in their design, intervention and economic analyses making comparison difficult. Only three of the ten papers included economic evaluations. All three reported that the intervention was less costly and had better or equivalent outcomes than the control comparator although two of these were based on the same intervention using the same dataset. CONCLUSION: There is some limited evidence that interventions for family carers of stroke patients are effective and cost effective. However, due to variation in the types of interventions examined, little can be concluded regarding implications for clinical practice.

Informal carers and wound management: an integrative literature review.

OBJECTIVE: The consequences of informal care giving have been well documented in recent decades, and in many fields of illness and chronic disease, the role of informal carers has been recognised and investigated. Informal caregivers in the field of wound management and prevention have been largely unnoticed, despite the chronic nature of many wounds, the enduring nature of treatments and the impact on the physical and social environment; factors likely to have a significant impact on family and friends. The aim of this study was to consider what published evidence is available regarding the experience and role of informal caregivers in wound management or prevention. METHOD: An integrated literature review was completed in October 2014 searching ESBCOhost database, Wound Management Association websites, and reviewing reference lists of accessed papers. RESULTS: A number of challenges were noted in accessing information about informal carers in relation to wound management and prevention. Most of these arose from the scarcity of studies for which informal carers was the primary focus. The available evidence suggests that informal carers have a role in wound management and prevention and that their involvement is likely to represent a noteworthy economic contribution to the wound management health-care team. Wound management was also determined to yield physical and psychological impacts for the carer. There was limited evidence of structured information, support or training for informal carers, which was flagged by carers as an area of need. CONCLUSION: General conclusions about the burdensome experience and the valuable role of carers were the main interpretations possible from the evidence. More research which purposively and comprehensively examines the experience and role of informal caregivers is required. This knowledge would provide a foundation upon which interventions and support for informal carers and patients can be generated, which could further serve to enhance wound healing and the prevention of skin damage.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis.

AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. DESIGN: Secondary analysis of data using a supra-analysis design to identify commonality of experiences. METHODS: Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. RESULTS: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. CONCLUSIONS: Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. RELEVANCE TO CLINICAL PRACTICE: There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

How spouses evaluate Nursing Home Placement of their demented partner: a study about the end of perseverance time.

AIM: This study was about the final decision by spouses to have their demented partner placed in a nursing home. The central question was whether the admission took place in the right time in their point of view. METHOD: Fourteen partners of persons with dementia evaluated the nursing home placement. They were interviewed at home using a semi-structured questionnaire. Grounded theory was used to explore the process of decision-making. In addition to the interviews, quantitative data were used from a 2-year follow-up study. RESULTS: Results underline that the placement decision had to be made in phases over time. The first decision is about placement of the relative on a waiting list, and the second decision is about the actual placement in a nursing home once a place becomes available. This second and final decision often had to be taken under time pressure to avoid a place in the nursing home being left empty. If they had been given more time and space to reconsider their admission decision, most partners said they could have had continued providing homecare longer. During the investigation, the following classification in timeliness of the admission emerged: Placement was at the right time, too early, too late or out of control. CONCLUSION: Spouses indicated they could have kept on giving care for a longer period of time if they had been given more time and space to make their final decision about the admission of their partner. It may be helpful for informal and formal carers to focus on perseverance time in considering placement or prolonged support at home. Placement at an appropriate time may lead to a higher degree of well-being of informal carers before and especially after the admission.

Exploring the financial impact of caring for family members receiving palliative and end-of-life care: a systematic review of the literature.

BACKGROUND: Research regarding the economic dimensions of palliative care is relatively limited. The economic implications of providing informal care are well recognised; however, within the context of palliative care, little is known about the costs and implications of providing care for a loved one at the end of life. AIM: To explore the financial costs and the financial impact of caring for family members receiving palliative/end-of-life care. DESIGN: A systematic literature review of empirical research following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DATA SOURCES: Seven electronic databases were searched from inception to April 2012. Inclusion criteria were as follows: articles relating to the financial costs or implications of family caregiving at the end-of-life care, English language articles, empirical research or systematic reviews and articles relating to adults. RESULTS: The review identified 21 relevant articles; however, evidence relating to the costs and implications of caregiving was relatively limited. The results indicate that the financial costs of caring for someone at the end of life are substantial. Financial costs can result in significant and multidimensional caregiver burden. Various factors were found to mediate the extent of financial burden. CONCLUSIONS: This review identified a significant gap in the evidence base regarding the economic implications of providing care to a family member within a palliative care context. Economic costs and implications are likely to be significant, and research to address this gap is urgently needed, particularly given policy initiatives in a number of developed countries to move the provision of palliative and end-of-life care from hospital to community settings.

EWMA Document: Home Care-Wound Care: Overview, Challenges and Perspectives.

This document provides an overview of the main approaches to the organisation of wound care within homecare settings across Europe with case exemplars from England, Germany and the Nordic Countries. By identifying possible barriers to best practice wound care in home care settings and uncovering the preconditions needed to provide safe and high quality care for wound patients and support for their families, the authors provide a list of minimum recommendations for the treatment of patients with wounds in their own homes.