What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care

Background: Increasing numbers of older patients with advanced cancer live alone but there is little research on how well health services meet their needs. The aim of this study was to compare the experiences and future preferences for care between two groups of older people with cancer in their last year of life; those who live alone, and those who live with co-resident carers. Methods: In-depth qualitative interviews were conducted with 32 people aged between 70 and 95 years who were living with cancer. They were recruited from general practices and hospice day care, when the responsible health professional answered no to the question, of whether they would be surprised if the patient died within twelve months. Twenty participants lived alone. Interviews were recorded and transcribed and the data analysed using a Framework approach, focussing on the differences and commonalities between the two groups. Results: Many experiences were common to all participants, but had broader consequences for people who lived alone. Five themes are presented from the data: a perception that it is a disadvantage to live alone as a patient, the importance of relational continuity with health professionals, informal appraisal of care, place of care and future plans. People who lived alone perceived emotional and practical barriers to accessing care, and many shared an anxiety that they would have to move into a care home. Participants were concerned with remaining life, and all who lived alone had made plans for death but not for dying. Uncertainty of timescales and a desire to wait until they knew that death was imminent were some of the reasons given for not planning for future care needs. Conclusions: Older people who live alone with cancer have emotional and practical concerns that are overlooked by their professional carers. Discussion and planning for the future, along with continuity in primary care may hold the key to enhancing end-of-life care for this group of patients

Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

BACKGROUND: There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. OBJECTIVE: Explore the concerns and desires for EOL care among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from agencies providing homeless services. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. CONCLUSIONS: Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised

Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study

Abstract Background The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Such information is lacking for frail older people approaching death, but could highlight how a palliative approach might be relevant for this population. Methods Cognitively intact, community dwelling adults considered to be moderately or severely frail were recruited from a medical day hospital. Those recruited nominated an informal carer and case-linked professional. Qualitative in-depth serial interviews with older people and their informal carers were conducted over an 18 month period, and single interviews with case-linked healthcare professionals. Interviews were recorded, transcribed and narrative analytical techniques were used to compile case studies. Results Thirty-four participants (13 patients, 13 informal carers and 8 healthcare professionals) completed 40 individual, 14 joint and 8 professional interviews. Five patients died during the study. The analysis highlighted a dynamic balance between losses and adaptations. Three typical patterns of multi-dimensional change emerged. 1) Maintenance of psychological and existential well-being with a gradual social decline mirroring the physical deterioration. 2) a gradual reduction in both psychological and existential well-being. 3) a marked downturn in social, psychological and existential well-being before death. Frail older people sustained their well-being through maintaining a sense-of-self, garnering support from carers and community structures, and focusing on living from day to day. Their well-being lessened when they lost their sense-of-self, feeling alienated from the world, and confused over the cause of their circumstances. Death remained distant and ‘undiagnosed’. Social and community frameworks were essential for supporting their well-being. Conclusions Multidimensional end-of-life trajectories for frail older people differed from those with other conditions. Alleviating psychological, social and existential distress should be a priority of care as frail older people reach the end of life. The current palliative care model is problematic for this group. Care should address future concerns and not necessarily involve a focus on death or place of death

A scoping review of mental health prevention and intervention initiatives for infants and preschoolers at risk for socio-emotional difficulties

Abstract Background Infant mental health has emerged as a unique area of practice and research distinguished from child and youth sub-specialties by its advocacy for a relational practice framework with an emphasis on parents/caregivers being integral to assessment, treatment, and prevention initiatives. A diverse array of initiatives offered across a broad spectrum of delivery methods is available to clinicians. However, to date, a large-scale mapping of the research evidence regarding these interventions has yet to be completed to help inform clinician’s decisions regarding the best approaches for their clients. To address this knowledge gap, this study aimed to report on the landscape of research pertaining to mental health interventions for infants and preschoolers (0–5 years), and their families at risk for socio-emotional difficulties and negative developmental outcomes. Method A scoping review methodology was used to conduct a large-scale mapping of the intervention research pertaining to infants and preschoolers (0–5) at risk for socio-emotional difficulties. We searched MEDLINE, PsycINFO, EMBASE, Web of Science, The Cochrane Library, CINAHL, LILACS, ProQuest Nursing & Allied Health Source, World Cat, and ClinicalTrials.gov , from inception to December 31, 2012. We extracted information regarding publication date, geographical location, study design, level of risk, population, key intervention mechanism, and outcome measures. Results We identified 533 potential studies from 1233 title and abstracts after the first round of screening. Full text article review in the second round of screening resulted in a total of 162 included articles for the final analysis. Results indicated that over 50% of interventions evaluated were randomized controlled trials conducted in Westernized countries. Most studies could be subdivided by level of risk within a preventative public health framework including universal, selected, indicated, and direct treatment for children formally diagnosed with a mental disorder. Risk factors experienced by children and their families were heterogeneously defined and numerous outcome measures across included studies. The results of this study are limited to the last search date of 2012. Conclusions Key intervention mechanisms spanned a range of approaches including parenting groups, dyadic, in-home, cognitive-behavioral therapy, and day care-based interventions. The findings are discussed in terms of implications for broad trends and gaps in research and policy for this population