Laura Wilkinson-Meyers

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.

Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review

The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost estimates.

Exploring the experience of sleep and fatigue in male and female adults over the 2 years following traumatic brain injury: a qualitative descriptive study

Objectives To explore the experience of fatigue and sleep difficulties over the first 2 years after traumatic brain injury (TBI). Design Longitudinal qualitative descriptive analysis of interviews completed as part of a larger longitudinal study of recovery following TBI. Data relating to the experience of fatigue and/or sleep were extracted and coded by two independent researchers. Setting Community-based study in the Hamilton and Auckland regions of New Zealand. Participants 30 adult participants who had experienced mild, moderate or severe brain injury within the past 6 months (>16 years of age). 15 participants also nominated significant others to take part. Interviews were completed at 6, 12 and 24 months postinjury. Results Participants described feeling unprepared for the intensity, impact and persistent nature of fatigue and sleep difficulties after injury. They struggled to learn how to manage their difficulties by themselves and to adapt strategies in response to changing circumstances over time. Four themes were identified: (1) Making sense of fatigue and sleep after TBI; (2) accepting the need for rest; (3) learning how to rest and; (4) need for rest impacts on ability to engage in life. Conclusions Targeted support to understand, accept and manage the sleep and fatigue difficulties experienced may be crucial to improve recovery and facilitate engagement in everyday life. Advice needs to be timely and revised for relevance over the course of recovery.

The Cluster-Randomized BRIGHT Trial: Proactive Case Finding for Community-Dwelling Older Adults

PURPOSE People are now living longer, but disability may affect the quality of those additional years of life. We undertook a trial to assess whether case finding reduces disability among older primary care patients. METHODS We conducted a cluster-randomized trial of the Brief Risk Identification Geriatric Health Tool (BRIGHT) among 60 primary care practices in New Zealand, assigning them to an intervention or control group. Intervention practices sent a BRIGHT screening tool to older adults every birthday; those with a score of 3 or higher were referred to regional geriatric services for assessment and, if needed, service provision. Control practices provided usual care. Main outcomes, assessed in blinded fashion, were residential care placement and hospitalization, and secondary outcomes were disability, assessed with Nottingham Extended Activities of Daily Living Scale (NEADL), and quality of life, assessed with the World Health Organization Quality of Life scale, abbreviated version (WHOQOL-BREF). RESULTS All 8,308 community-dwelling patients aged 75 years and older were approached; 3,893 (47%) participated, of whom 3,010 (77%) completed the trial. Their mean age was 80.3 (SD 4.5) years, and 55% were women. Overall, 88% of the intervention group returned a BRIGHT tool; 549 patients were referred. After 36 months, patients in the intervention group were more likely than those in the control group to have been placed in residential care: 8.4% vs 6.2% (hazard ratio = 1.32; 95% CI, 1.04–1.68; P = .02). Intervention patients had smaller declines in mean scores for physical health-related quality of life (1.6 vs 2.9 points, P = .007) and psychological health-related quality of life (1.1 vs 2.4 points, P = .005). Hospitalization, disability, and use of services did not differ between groups, however. CONCLUSIONS Our case-finding strategy was effective in increasing identification of older adults with disability, but there was little evidence of improved outcomes. Further research could trial stronger primary care integration strategies.

Met and unmet need for personal assistance among community‐dwelling New Zealanders 75 years and over

Ageing in place initiatives that aim to keep older people out of hospitals and rest homes and in their own homes for longer have been at the forefront of aged care policy since the early 1990s. The success of these policies depends largely on the availability of a suitable home environment, a supportive social network and regular assessment to detect changes in the older persons health status and needs for support. The BRIGHT Trial was a randomised control trial investigating the effectiveness of introducing case finding in primary care settings to detect unmet need and risk of disability among older people. We used baseline questionnaire data collected in 2008-2009 from 3753 community-dwelling older people to estimate and describe use and need for additional personal assistance. Logistic regression was used to identify the most important predictors of reporting some need for support and unmet need. Eighty-one per cent of participants required support with at least one instrumental activity of daily living. Sixty-six per cent were meeting their needs with the support they were currently receiving. Unmet need was most frequently reported for heavy housework (65%) and light housework (53%). While spouses, family members and friends were the main providers of support for light housework, meal preparation, shopping, finances and transportation, paid staff most frequently provided personal care and heavy housework assistance. Reporting mobility difficulty (OR = 3.5), identifying as a care provider (OR = 1.7) and being female (OR = 1.9) were all significant predictors of some need for assistance as well as unmet need for assistance (OR = 2.5, 1.7 and 1.7 respectively). The findings highlight the importance of regular needs assessment for older people living in the community particularly, given the reliance on spousal support for the majority of activities.

Reducing disablement with adequate and appropriate resources: a New Zealand perspective

This article presents the qualitative findings from a larger mixed methods study of the barriers and costs associated with disability in New Zealand. A social model of disability framework was integrated with an economic cost model using consensual budget standards to (1) identify key barriers disabled people experience in their everyday living and (2) develop consensus about the resources disabled people agree they require to reduce or remove them. Forty-nine people with physical, hearing, vision or intellectual impairment participated in a series of 8 impairment-based focus groups. The analysis identified inaccessible environments, negative attitudes, unreliable transportation and poor access to information as key barriers. However, lack of adequate and appropriate resources (e.g. equipment, modifications, support, transport and time) to address these barriers was the overarching obstacle to participation. The inclusion of time as both a barrier and a valuable resource is arguably the most important contribution of the study.

Living life after traumatic brain injury: phase 1 of a longitudinal qualitative study

Objective: To explore what helps and hinders recovery and adaptation after disabling traumatic brain injury (TBI) and make recommendations for improving service responsiveness. Design: A longitudinal qualitative descriptive study across all TBI severities. Setting: Community. Participants: Forty people with TBI, and 22 significant others, 6 to 9 months following a TBI. Main Measures: Semistructured interviews, analyzed using qualitative description, focused on (a) key areas of importance or concern and (b) strategies or actions that people found helpful or that hindered recovery. Results: Traumatic brain injury produced a complex set of challenges in keeping up with life, and understanding what having a TBI means for, and to, me. This period encompassed a tangled fit and misfit in life as brain injury did not occur in isolation. People had to actively change some aspects of life and yet allow other changes to happen. Valued supports from others included being looked out for and having someone to help drive the process. Conclusion: Improved services delivery and better outcomes may result if we respond to the person within his or her context; listen, believe, and acknowledge the persons story through our actions; and avoid assumptions about aspects of life that mean most to people and who/what may help best.

To live an ordinary life: resource needs and additional costs for people with a physical impairment

Disabled people face increased risks of living in poverty largely due to lower incomes and extra resource requirements compared to non-disabled people. This study incorporated the social model of disability with an economic approach to costing to estimate the additional costs required by people with a physical impairment to achieve an adequate standard of living in New Zealand. Budgets estimating the additional equipment, modifications, transport, support and time required to achieve an adequate standard of living were developed and validated through focus groups with community members. The findings suggest that reducing barriers involves substantial costs ranging from NZ

Children's perceptions of a ‘self-explaining road’ intervention to improve neighbourhood safety

645–

Cost of prescribed and delivered health services resulting from a comprehensive geriatric assessment tool in New Zealand

2,348 per week.