Meaning and components of Quality of Life among individuals with spinal cord injury in Yogyakarta Province, Indonesia

Purpose: Knowledge on the meaning of quality of life in individuals with spinal cord injury in developing countries is limited. This study aims to explore the meaning and components of quality of life for individuals with spinal cord injury in a rural area in Indonesia. Method: Data were obtained through semi-structured interviews with 12 individuals with paraplegia (8 males, 4 females) aged 24–67 years. Thematic analysis was used to identify themes that constitute meaning and components of quality of life. Results: Quality of life was not an easily understood concept, while “life satisfaction” and “happiness” were. Life satisfaction was associated with a person’s feeling when achieving goals or dreams and related to fulfillment of needs. Thirteen components of life satisfaction were identified and categorized into five domains as follows: (1) participation: earning income and work, being useful to others, community participation, and having skills and knowledge, (2) social support: social support, social relationship, (3) relationship with God: injury is God’s will, praying, (4) independence: being independent, mobility and accessibility, and health, and (5) psychological resources: accepting the condition, maintaining goals and motivation. Conclusions: Social, cultural and religious influences were prominent in the perception of life satisfaction. The measurement of quality of life for individuals with spinal cord injury in Indonesia needs to consider locally perceived meaning and components of quality of life. Implications for Rehabilitation Financial, social and health needs of individuals with spinal cord injury in Indonesia must be immediately addressed. To increase financial independence, rehabilitation professionals should equip individuals with spinal cord injury with adequate self-employment skills. Sociocultural and religious aspects should be considered in the measurement of quality of life

Social support following diagnosis and treatment for colorectal cancer and associations with health-related quality of life: Results from the UK ColoREctal Wellbeing (CREW) cohort study

Objective Social support is acknowledged as important in cancer survivorship, but little is known about change in support after cancer diagnosis and factors associated with this, particularly in colorectal cancer. The CREW cohort study investigated social support up to 2 years following curative intent surgery for colorectal cancer. Methods A total of 871 adults recruited pre‐treatment from 29 UK centres 2010 to 2012 consented to follow‐up. Questionnaires at baseline, 3, 9, 15, and 24 months post‐surgery included assessments of social support (Medical Outcomes Study‐Social Support Survey, MOS‐SSS) and health‐related quality of life (HRQoL). Socio‐demographic, clinical and treatment details were collected. Longitudinal analyses assessed social support over follow‐up, associations with participant characteristics, and HRQoL. Results Around 20% were living alone and 30% without a partner. Perceived social support declined in around 29% of participants, with 8% of these reporting very low levels overall from baseline to 2 years (mean MOS‐SSS overall score < 40 on a scale from 0 to 100). Older age, female gender, greater neighbourhood deprivation, presence of co‐morbidities, and rectal cancer site were significantly associated with reductions in perceived support. Poorer HRQoL outcomes (generic health/QoL, reduced wellbeing, anxiety, and depression) were significantly associated with lower levels of social support. Conclusions Levels of social support decline following colorectal cancer diagnosis and treatment in nearly a third of patients and are an important risk factor for recovery of HRQoL. Assessment of support early on and throughout follow‐up would enable targeted interventions to improve recovery, particularly in the more vulnerable patient groups at risk of poorer social support

Exploring risk profiles and emergency frequency of purchasers and non-purchasers of personal emergency alarms: A prospective cohort study

© 2015 De San Miguel et al. Background: Personal alarms support independent living and have the potential to reduce serious consequences after a fall or during a medical emergency. While some Australian states have government funded personal alarm programs, others do not; but user-pays services are available. Although several studies have examined the profiles of alarm users, little is known about the risk profile of non-users. Specifically, whether there are "at risk" individuals who are unable, or choose not to purchase a service, who experience a home-based emergency in which an alarm could have mitigated an adverse outcome. This study aimed to describe the 'risk profile' of purchasers and non-purchasers of alarms; explore the reasons behind the decision to purchase or not to purchase and identify how often emergency assistance was needed and why. Methods: Purchasers and non-purchasers were followed for one year in this prospective cohort study. Demographic, decision-making and risk factor data were collected at an initial face-to-face interview, while information about emergencies was collected by monthly calls. Results: One hundred and fifty-seven purchasers and sixty-five non-purchasers completed the study. The risk profiles between the groups were similar in terms of gender, living arrangements, fall history and medical conditions. Purchasers (Mean = 82.6 years) were significantly older than non-purchasers (Mean = 79.3 years), (t(220) = -3.38, p = 0.000) and more functionally dependent on the IADL (z = -2.57, p = 0.010) and ADL (z = -2.45 p = 0.014) function scores. Non-purchasers (Mean = 8.04, SD = 3.57) were more socially isolated with significantly fewer family networks than purchasers (Mean = 9.46, SD = 3.25) (t(220) = -2.86, p = 0.005). Both groups experienced similarly high numbers of emergencies, 38.2 % of purchasers and 41.5 % of non-purchasers had at least one emergency where an alarm could have assisted. Main reasons for non-purchase were: cost (77 %), limited alarm range (51 %), no need (39 %) and lack of suitable contacts (30 %). Conclusion: There are older individuals who are at high risk of an emergency who are choosing, often for financial and lack of family support reasons, not to purchase a personal alarm service. Greater availability of government funded subsidy schemes would enable these individuals to access a service. Increasing the range over which alarms work could increase their appeal to a broader range of older persons living in the community. Future research should consider how strategies that improve social isolation from family and challenge clients' beliefs about their own health and independence can support increased access to personal alarm services

The 5x1 DAFNE Study Protocol: A cluster randomised trial comparing a standard 5 day DAFNE course delivered over 1 week against DAFNE training delivered over 1 day a week for 5 consecutive weeks.

Background Structured education programmes are now established as an essential component to assist effective self-management of diabetes. In the case of Type 1 diabetes, the Dose Adjustment For Normal Eating (DAFNE) programme improves both glycaemic control and quality of life. Traditionally delivered over five consecutive days, this format has been cited as a barrier to participation by some patients, such as those who work full-time. Some centres in the UK have organised structured education programmes to be delivered one day a week over several consecutive weeks. This type of format may add benefit by allowing more time in which to practice skills between sessions, but may suffer as a result of weaker peer support being generated compared to that formed over five consecutive days. Methods/design We aim to compare DAFNE delivered over five consecutive days (1 week course) with DAFNE delivered one day a week over five weeks (5 week course) in a randomised controlled trial. A total of 213 patients were randomised to attend either a 1 week or a 5 week course delivered in seven participating centres. Study outcomes (measured at baseline, 6 and 12 months post-course) include HbA1c, weight, self-reported rates of severe hypoglycaemia, psychosocial measures of quality of life, and cost-effectiveness. Generalisability was optimised by recruiting patients from DAFNE waiting lists at each centre, and by mailing eligible patients from hospital clinic lists. The inclusion and exclusion criteria were identical to those used to recruit to a standard DAFNE course (e.g., HbA1c <12%, with no lower limit). Qualitative interviews were undertaken with a sub-sample of n=30 patients and their course educators (n=11) to help understand and interpret differences and similarities in outcomes between the two arms, and to identify logistical problems and unanticipated issues arising from the adaptation and delivery of a 5 week course. Discussion This trial has been designed to test the hypothesis that the benefits of delivering a structured education programme over 5 weeks are comparable to those observed after a 1 week course. The results of the trial and the qualitative sub-study will both inform the design and delivery of future DAFNE courses, and the development of structured education programmes in other fields of medicine

Correlates of caring for the drinkers and others among those harmed by another's drinking

Introduction and Aims: This study identifies the correlates of caring for harmful drinkers and others, and examines how caring for that person impacts on respondents' well-being and use of services. Design and Methods: The study utilises the data from the 2008 Australian Alcohol Harm to Others Survey (n=2649), in which 778 respondents reported they were harmed because of the drinking of someone they knew. Respondents were asked about the person they were most adversely affected by and whether they spent time caring for this person because of their drinking. Logistic regression models are developed to examine which factors were associated with the prevalence of caring for others. Results: The study reveals that the respondents who cared for others because of the other's drinking reported lower quality of life than the respondents who did not have to do this. The results of the logistic regression suggest that respondents were more likely to care for the drinker if the drinker drank more (as the usual quantity of alcohol consumed increased), but less likely to care for the drinker if the drinker drank five or more drinks on more than four days per week. Discussion and Conclusions: The findings of the study suggest that the drinking of family and friends can be a substantial burden for their households, families, friends and others. Policy approaches that reduce the amount of heavy drinking, particularly heavy drinking in a single occasion, are likely to reduce the burden of caring for others because of other's drinking

Personal emergency alarms: do health outcomes differ for purchasers and nonpurchasers?

© 2017 The Author(s). Published by Taylor & Francis. The objective of this study was to assess whether purchasing a personal alarm service makes a difference in a range of health outcomes for community dwelling older adults. The prospective cohort study involved 295 individuals for whom data on emergencies experienced at home were collected over a period of 12 months. Purchasers of alarms, compared to nonpurchasers, benefitted in terms of feeling more safe and secure and being more active around their home. Outcomes experienced after an emergency were similar for both groups with no differences found in terms of time spent on floor, or hospitalizations