Lifetime Active Care: A qualitative study of long‐term family carers of people with spinal cord injury in Australia

This study reports the findings of a qualitative, grounded theory study which explored the experiences of partners and other long‐term family carers living with and supporting loved ones with spinal cord injury. The study is exploratory in that little was previously known about the experience of long‐term care‐giving in this context in Australia. Most research in this area has focused on this experience during the first 5 years postinjury. This study focuses on the experiences of family carers beyond that 5‐year period. The study aimed to explore the experience of partners and other long‐term family carers of people with spinal cord injury, and illuminate their daily lives, interests, concerns and caring approaches in this context. Data collection included in‐depth interviews, a focus group and an on‐line, password‐protected research blog for participant narrative reflections. Findings revealed that the experience of long‐term caring is complex, all‐encompassing and lifelong. This experience is conceptualised here as lifetime active care which always involves what we describe as protective, negotiated, surreptitious and strategic caring. These dimensions of caring are interdependent and deeply embedded in the daily, active support provided by long‐term carers of people with spinal cord injury. We argue that carers in this context are involved in processes that have, in other contexts, been conceptualised as narrative reconstruction and also that the four dimensions of caring identified involve significant emotion work. The social processes of lifetime active care may shed light on the experiences of family carers in other long‐term care contexts.     

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.     

People with dementia attending farm‐based day care in Norway – Individual and farm characteristics associated with participants’ quality of life

Farm‐based day care for people with dementia is supposed to improve the participants quality of life by using activities and resources of the farm environment to promote mental and physical health. In this paper, we describe the characteristics of those attending farm‐based day care services in Norway and explore the association between individual and farm characteristics and the quality of life. A sample of 94 people with dementia who attended farm‐based day care was recruited from 25 farms between January 2017 and January 2018. The data collection was performed using standardized instruments. Information about the farms was retrieved from a former study. The association between the participants’ quality of life and their individual and/or farm characteristics was examined with a linear multilevel regression model. The participants had a mean age of 76 years, 62% were men, and 68% had additional education after primary school. Most of them had mild (54.3%) or questionable dementia (18.3%). A few participants used antipsychotics (3.7%), tranquilizers (9.9%) and painkillers (13.6%), while a higher number used antidepressants (30.9%). Quality of life was associated with the experience of having social support (p = .023), a low score on depressive symptoms (p < .001), and spending time outdoors at the farm (p < .001). The variation between the farm‐based day care services in the participants’ reported quality of life was related to time spent outdoors at the farm. In light of the present study, it seems as farm‐based day care is addressing people with dementia in an early stage, dominated by men, with quite good physical and medical condition. The strong association between quality of life and spending time outdoors underscores that facilitation for outdoor activity should be prioritized in all types of dementia care.     

Uneven progress in reducing exposure to violence at home for New Zealand adolescents 2001–2012: a nationally representative cross‐sectional survey series

Objective: To explore trends, and identify risk factors, that may explain changes in adolescent exposure to family violence over time. Methods: Data for this study was drawn from the Youth 2000 series of cross‐sectional surveys, carried out with New Zealand high school students in 2001, 2007 and 2012. Latent class analysis was used to understand different patterns of exposure to multiple risks for witnessing violence at home among adolescents. Results: Across all time periods, there was no change in witnessing emotional violence and a slight decline in witnessing physical violence at home. However, significant differences were noted between 2001 and 2007, and 2007 and 2012, in the proportion of adolescents who reported witnessing emotional and physical violence. Four latent classes were identified in the study sample; these were characterised by respondents' ethnicity, concerns about family relationships, food security and alcohol consumption. For two groups (characterised by food security, positive relationships and lower exposure to physical violence), there was a reduction in the proportion of respondents who witnessed physical violence but an increase in the proportion who witnessed emotional violence between 2001 and 2012. For the two groups characterised by poorer food security and higher exposure to physical violence, there were no changes in witnessing of physical violence in the home. Implications for public health: In addition to strategies directly aimed at violence, policies are needed to address key predictors of violence exposure such as social disparities, financial stress and alcohol use. These social determinants of health cannot be ignored.     

Oral health problems and support as experienced by people with severe mental illness living in community‐based subsidised housing – a qualitative study

The purpose of this study was to explore how persons with severe mental illness (SMI) experience oral health problems (especially dry mouth), and weigh the support they received in this regard from professionals and staff at community‐based congregate housing through a controlled intervention programme. Oral health problems and dry mouth are found in association with apathy and indifference, cognitive deficits, and long‐term medication with psycho‐pharmacological drugs. The present study describes the results from one part of a longitudinal intervention programme, which sought effective ways of mitigating dry mouth through increased support with oral health problems. This part consists of 67 informal interviews with ten participants in two community‐based urban housing projects between November 2006 and June 2007, with a follow‐up session in December 2007. Content analysis of the results yielded five categories: The shame of having poor dental health, history of dental care, experiences of self‐care, handling of oral health problems, and experiences of staff support. Poor oral health caused shame and limited participation in social activities. Participants avoided oral health issues by such circumventions as denial of a tooth ache or dental infections, or postponing oral problems with the hope that they would die away. Offers of support were frequently resisted because of unsatisfactory prior encounters with dental professionals and staff. Our findings suggest that self‐care needs to be facilitated in an unobtrusive manner with minimal staff involvement, and clients should be referred to dental care providers experienced in treating people with SMI.     

Consequences,control and appraisal: cues and barriers to engaging in self‐management among people affected by colorectal cancer – a secondary analysis of qualitative data

Background Little is known about peoples’ self‐management experiences and their desires or expectations to engage in self‐management. As such, there is little understanding about individuals’ perceived cues and barriers to engagement in self‐management, particularly in people affected by cancer. Objective To understand cues and barriers to people’s engagement in self‐management during chemotherapy treatment for colorectal cancer. Design Secondary analysis of qualitative data from mixed methods, longitudinal study. Setting and participants Eleven participants undergoing treatment for colorectal cancer. Semi‐structured interviews were conducted twice with each participant, at the start and end of a 6‐month course of chemotherapy treatment in a Scottish cancer centre. Results Cues and barriers to engagement in self‐management appeared to stem from perceptions of the impact and associated severity of side effects experiences as well as the perceptions about the efficacy of chosen self‐management activities and perceptions of control in minimizing the consequences of cancer treatment. Severe, episodic or unexpected side effects coupled with perceptions of uncertainty, lack of control and lack of adequate preparation to engage in self‐management were identified as key barriers to engagement. Discussion and conclusion Participants’ reflection on, or appraisal of, their treatment‐related experiences and personal abilities, confidence and preferences to manage the impact of these shaped their subsequent engagement in self‐management. The findings highlight the importance of understanding individual’s self‐management experiences, perceptions, preferences, priorities and needs to help support, prepare and enable them to feel capable and confident to engage actively and effectively in self‐management.