Determinants of participation restriction among community dwelling stroke survivors : a path analysis

Background: Apart from promoting physical recovery and assisting in activities of daily living, a major challenge in stroke rehabilitation is to minimize psychosocial morbidity and to promote the reintegration of stroke survivors into their family and community. The identification of key factors influencing long-term outcome are essential in developing more effective rehabilitation measures for reducing stroke-related morbidity. The aim of this study was to test a theoretical model of predictors of participation restriction which included the direct and indirect effects between psychosocial outcomes, physical outcome, and socio-demographic variables at 12 months after stroke.--------- Methods: Data were collected from 188 stroke survivors at 12 months following their discharge from one of the two rehabilitation hospitals in Hong Kong. The settings included patients' homes and residential care facilities. Path analysis was used to test a hypothesized model of participation restriction at 12 months.---------- Results: The path coefficients show functional ability having the largest direct effect on participation restriction (β = 0.51). The results also show that more depressive symptoms (β = -0.27), low state self-esteem (β = 0.20), female gender (β = 0.13), older age (β = -0.11) and living in a residential care facility (β = -0.12) have a direct effect on participation restriction. The explanatory variables accounted for 71% of the variance in explaining participation restriction at 12 months.---------- Conclusion: Identification of stroke survivors at risk of high levels of participation restriction, depressive symptoms and low self-esteem will assist health professionals to devise appropriate rehabilitation interventions that target improving both physical and psychosocial functioning.

Social Participation of Community Dwelling Stroke Survivors [Published Abstract: From the Quality of Care and Outcomes Research in Cardiovascular Disease and Stroke Conference 2009]

Disability following a stroke can impose various restrictions on patients’ attempts at participating in life roles. The measurement of social participation, for instance, is important in estimating recovery and assessing quality of care at the community level. Thus, the identification of factors influencing social participation is essential in developing effective measures for promoting the reintegration of stroke survivors into the community. Data were collected from 188 stroke survivors (mean age 71.7 years) 12 months after discharge from a stroke rehabilitation hospital. Of these survivors, 128 (61 %) had suffered a first ever stroke, and 81 (43 %) had a right hemisphere lesion. Most (n = 156, 83 %) were living in their own home, though 32 (17 %) were living in residential care facilities. Path analysis was used to test a hypothesized model of participation restriction which included the direct and indirect effects between social, psychological and physical outcomes and demographic variables. Participation restriction was the dependent variable. Exogenous independent variables were age, functional ability, living arrangement and gender. Endogenous independent variables were depressive symptoms, state self-esteem and social support satisfaction. The path coefficients showed functional ability having the largest direct effect on participation restriction. The results also showed that more depressive symptoms, low state self-esteem, female gender, older age and living in a residential care facility had a direct effect on participation restriction. The explanatory variables accounted for 71% of the variance in explaining participation restriction. Prediction models have empirical and practical applications such as suggesting important factors to be considered in promoting stroke recovery. The findings suggest that interventions offered over the course of rehabilitation should be aimed at improving functional ability and promoting psychological aspects of recovery. These are likely to enhance stroke survivors resume or maximize their social participation so that they may fulfill productive and positive life roles.

Randomised controlled trial of a supervised exercise rehabilitation program for colorectal cancer survivors immediately after chemotherapy: study protocol

Background Colorectal cancer (CRC) diagnosis and the ensuing treatments can have a substantial impact on the physical and psychological health of survivors. As the number of CRC survivors increases, so too does the need to develop viable rehabilitation programs to help these survivors return to good health as quickly as possible. Exercise has the potential to address many of the adverse effects of CRC treatment; however, to date, the role of exercise in the rehabilitation of cancer patients immediately after the completion of treatment has received limited research attention. This paper presents the design of a randomised controlled trial which will evaluate the feasibility and efficacy of a 12-week supervised aerobic exercise program (ImPACT Program) on the physiological and psychological markers of rehabilitation, in addition to biomarkers of standard haematological outcomes and the IGF axis. Methods/Design Forty CRC patients will be recruited through oncology clinics and randomised to an exercise group or a usual care control group. Baseline assessment will take place within 4 weeks of the patient completing adjuvant chemotherapy treatment. The exercise program for patients in the intervention group will commence a week after the baseline assessment. The program consists of three supervised moderate-intensity aerobic exercise sessions per week for 12 weeks. All participants will have assessments at baseline (0 wks), mid-intervention (6 wks), post-intervention (12 wks) and at a 6-week follow-up (18 wks). Outcome measures include cardio-respiratory fitness, biomarkers associated with health and survival, and indices of fatigue and quality of life. Process measures are participants' acceptability of, adherence to, and compliance with the exercise program, in addition to the safety of the program. Discussion The results of this study will provide valuable insight into the role of supervised exercise in improving life after CRC. Additionally, process analyses will inform the feasibility of implementing the program in a population of CRC patients immediately after completing chemotherapy.

"They did not believe me" : Adult survivors' perspectives of child sexual abuse by personnel in Christian Institutions

Executive Summary Child sexual abuse (CSA) in Christian Institutions continues to be of serious concern in public, criminal justice and institutional discourse. This study was conducted in conjunction with Project Kidsafe Foundation and sought the perspectives of Australian survivors of CSA by Personnel in Christian Institutions (PICIs). In total, 81 individual survivors responded to an online survey which asked them a range of questions about their current and childhood life circumstance; the nature, extent and location of abuse; grooming strategies utilised by perpetrators; their experiences of disclosure; and outcomes of official reporting to both criminal justice agencies and also official processes Christian institutions. Survey participants were given the option to further participate in a qualitative interview with the principal researcher. These interviews are not considered within this report. In summary, survey data examined here indicate that: • Instances of abuse included a range of offences from touching outside of clothing to serious penetrative offences. • The onset of abuse occurred at a young age: between 6 and 10 years for most female participants, and 11 and 13 years for male participants. • In the majority of cases the abuse ceased because of actions by survivors, not by adults within families or the Christian institution. • Participants waited significant time before disclosing their abuse, with many waiting 20 years or more. • Where survivors disclosed to family members or PICIs, they were often met with disbelief and unhelpful responses aimed at minimising the harm. • Where an official report was made, it was most often made to police. In these cases 53% resulted in an official investigations. • The primary reasons for reporting were to protect others from the perpetrator and make the Christian institution accountable to an external agency. • Where reports to Christian institutions were made, most survivors were dissatisfied with outcomes, and a smaller majority was extremely dissatisfied. This report reflects the long-held understanding that responding to CSA is a complex and difficult task. If effective and meaningful responses are not made, however, trauma to the survivor is most often compounded and recovery delayed. This report demonstrates the need for further independent analysis and oversight of responses made to CSA by both criminal justice, religious and social institutions. Meaningful change will only be accessible, however, if family, community and institutional environments are safe places for survivors to disclose their experiences of abuse and begin to seek ways of healing. There is much to be learnt from survivors that have already made this journey.

Diary of a Jewish mother.

Brief synopsis of life of Toni Ringel by Robert Ringel; translated diary of Toni Ringel during hiding in Amsterdam, September 1942 - April 1945: struggles to survive; diet; observance of Passover and other Jewish holidays; sickness of husband; death of husband.

The right path : The autobiography of a survivor /

Account of the German occupation of Kecskemet; fate of Jews of Kecskemet; liberation; immediate postwar experiences in Kecskemet; memories of childhood in Kotaj and Kecskemet; move to Budapest; training as soccer player in Budapest; return to Kecskemet and work in printing shop; fate of family members during the holocaust; early years of World War II in Kecskemet; entry into forced labor; life in labor camp; escape and hiding; liberation by Red Army; return to Kecskemet under Soviet Ukrainian occupation; return to printing business in Kecskemet; courtship and marriage in April 1945; reuinion with two sisters; birth of daugher; move to Budapest in 1949; work as printer in Budapest; life in Budapest under Communist domination; anti-Semitism; uprising of 1956 in Budapest; flight to Vienna; life in Vienna; emigration to USA; life in New York; move to Los Angeles; started business in food preparation; coached soccer team.

Role of women in fish food security and poverty alleviation

The notions about women been limited to producing children like rates alone; cooking for the family, restricted within the fenced compound without any meaningful contributions in fish food production was dispelled during the course of the study. From the data gathered, the study revealed various contributions of women as regard fish food production as about 2% of the women are involved in direct fishing as this enhance food security of the family and the society. Also women dominate the entire post harvest and marketing sector and 70% started fishing business with their personal savings.Also, some of the women own boats and other fishing inputs, which they do give to the fishermen that could catch the fish and sell it to them. This has a way of enhancing fish catch and fish food security of the people as those men that would have sit idle for lack of fishing gears are now meaningfully engaged courtesy of the women financiers. Finally, the study also revealed that 46% of the women between N2,5000 to above N4,000 from marketing of fish, and also utilizenthe income generated to enhance the welfare of the households in the area of food, clothing and paying their children school fees hence reducing the level of poverty of their households

Variation in use of surveillance colonoscopy among colorectal cancer survivors in the United States.

BACKGROUND: Clinical practice guidelines recommend colonoscopies at regular intervals for colorectal cancer (CRC) survivors. Using data from a large, multi-regional, population-based cohort, we describe the rate of surveillance colonoscopy and its association with geographic, sociodemographic, clinical, and health services characteristics. METHODS: We studied CRC survivors enrolled in the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Eligible survivors were diagnosed between 2003 and 2005, had curative surgery for CRC, and were alive without recurrences 14 months after surgery with curative intent. Data came from patient interviews and medical record abstraction. We used a multivariate logit model to identify predictors of colonoscopy use. RESULTS: Despite guidelines recommending surveillance, only 49% of the 1423 eligible survivors received a colonoscopy within 14 months after surgery. We observed large regional differences (38% to 57%) across regions. Survivors who received screening colonoscopy were more likely to: have colon cancer than rectal cancer (OR = 1.41, 95% CI: 1.05-1.90); have visited a primary care physician (OR = 1.44, 95% CI: 1.14-1.82); and received adjuvant chemotherapy (OR = 1.75, 95% CI: 1.27-2.41). Compared to survivors with no comorbidities, survivors with moderate or severe comorbidities were less likely to receive surveillance colonoscopy (OR = 0.69, 95% CI: 0.49-0.98 and OR = 0.44, 95% CI: 0.29-0.66, respectively). CONCLUSIONS: Despite guidelines, more than half of CRC survivors did not receive surveillance colonoscopy within 14 months of surgery, with substantial variation by site of care. The association of primary care visits and adjuvant chemotherapy use suggests that access to care following surgery affects cancer surveillance.

Bystander Narratives: The Fiction of J.M. Coetzee and the Holocaust

J.M. Coetzee’s novels are suffused with a pervasive, though often oblique, Holocaust awareness. Direct references to the event and to the historical era to which it belongs, subtle stylistic and thematic echoes of Holocaust writing, and the recurrent mobilization of Holocaust imagery in Coetzee’s novels all contribute to suggest the significance of the event to the author’s work and thought. Providing Coetzee with a lens through which to view the contemporary situation, both local and global, the Holocaust offers Coetzee a means by which difficult and complex questions of ethics and historiographical truth may be approached. Above all, the Holocaust and its representation contribute to Coetzee’s exploration of the dilemmas of translating the traumatic lived experience of atrocity – including, but not limited to, life in apartheid South Africa – into narrative form. Taken as a whole, Coetzee’s oeuvre initially anticipates and later responds to, in characteristically oblique fashion, the narrative project(s) facing post-apartheid South Africa as the newly-democratic nation sought to make sense of its past through a variety of means, the most important of which was the country’s Truth and Reconciliation Commission. Implicitly challenging the TRC’s findings as well as its narrative assumptions, the Coetzean oeuvre accordingly invites being read as offering a continuous and evolving counter-narrative to the TRC and its construction of a narrative of the apartheid past for the post-apartheid nation. In utilizing the Holocaust, its representations, and the reception thereof to frame his response to apartheid, Coetzee implicates both in a critique of the Western model of modernity, suggesting, in the process, the importance of reconfiguring modernity in a more ethical shape.

General and Respiratory Health Outcomes in Adult Survivors of Bronchopulmonary Dysplasia: A Systematic Review

Background: The purpose of this systematic literature review was to examine current empirical research on general and respiratory health outcomes in adult survivors of bronchopulmonary dysplasia (BPD).

Methods: We searched seven databases up to the end of November 2010 (MEDLINE, PubMed, EMBASE, PsycINFO, Maternity and Infant Care, Cumulative Index of Nursing and Allied Health Literature, and Web of Knowledge). We independently screened and included only those studies concerning the assessment of outcome measures in adult survivors of BPD. Data on methodologic design and findings were extracted from each included study; in addition, the methodologic quality of each study was assessed using the Critical Appraisal Skills Programme checklist.

Results: Fourteen cohort studies met the review criteria. Of those, a total of eight studies were considered to be of high quality (score 9-12), five of moderate quality (score 5-8), and only one was of low quality (score 0-4). In all studies of adult survivors of BPD, differences were found between the index and control groups, suggesting that many adults survivors of BPD who were born preterm or with very low birth weight had more respiratory symptoms and pulmonary function abnormalities compared with their peers. Five studies concerning radiologic findings reported structural changes persisting into adulthood. Findings from three studies suggested impairment in exercise capacity, although firm conclusions were limited by the small sample size in the studies reviewed.

Conclusions: Compared with adults born at term, adult survivors of BPD have more impairment in general and respiratory health, which does not seem to diminish over time.

An international review of the patterns and determinants of health service utilisation by adult cancer survivors

Background: There is a need to review factors related to health service utilisation by the increasing number of cancer survivors in order to inform care planning and the organisation and delivery of services.

Methods: Studies were identified via systematic searches of Medline, PsycINFO, CINAHL, Social Science Citation Index and the SEER-MEDICARE library. Methodological quality was assessed using STROBE; and the Andersen Behavioural Model was used as a framework to structure, organise and analyse the results of the review.

Results: Younger, white cancer survivors were most likely to receive follow-up screening, preventive care, visit their physician, utilise professional mental health services and least likely to be hospitalised. Utilisation rates of other health professionals such as physiotherapists were low. Only studies of health service use conducted in the USA investigated the role of type of health insurance and ethnicity. There appeared to be disparate service use among US samples in terms of ethnicity and socio-demographic status, regardless of type of health insurance provisions- this may be explained by underlying differences in health-seeking behaviours. Overall, use of follow-up care appeared to be lower than expected and barriers existed for particular groups of cancer survivors.

Conclusions: Studies focussed on the use of a specific type of service rather than adopting a whole-system approach and future health services research should address this shortcoming. Overall, there is a need to improve access to care for all cancer survivors. Studies were predominantly US-based focussing mainly on breast or colorectal cancer. Thus, the generalisability of findings to other health-care systems and cancer sites is unclear. The Andersen Behavioural Model provided an appropriate framework for studying and understanding health service use among cancer survivors. The active involvement of physicians and use of personalised care plans are required in order to ensure that post-treatment needs and recommendations for care are met.

Assessing the needs of informal caregivers to cancer survivors: a review of the instruments

Objective: Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.

Method: A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised.

Results: Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test–retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness.

Conclusion: All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test–retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score.

Long-term health-related quality of life of prostate cancer survivors varies by primary treatment. Results from the PiCTure (Prostate Cancer Treatment, your experience) study

PURPOSE: Men are living longer with prostate cancer. In a two-country study, we investigated the health-related quality of life (HRQoL) of prostate cancer survivors up to 18 years post-diagnosis.

METHODS: Postal questionnaires were administered in 2012 to 6559 prostate cancer (ICD10 C61) survivors 2-18 years post-diagnosis, identified through population-based cancer registries in Ireland. HRQoL was measured using QLQ-C30 and QLQ-PR25. HRQoL, functional and symptom scores were compared by primary treatment(s) using multiple linear regression.

RESULTS: Fifty-four percent responded (n = 3348). After controlling for socio-demographic and clinical factors, global HRQoL varied significantly by primary treatment (p < 0.001); compared to radical prostatectomy (RP), survivors who received androgen deprivation therapy alone (ADT; p < 0.001) or external beam radiotherapy (EBRT) without concurrent ADT (p = 0.001) had significantly lower global HRQoL. The global HRQoL of men who received brachytherapy (p = 0.157), EBRT with concurrent ADT (p = 0.940) or active surveillance/watchful waiting (p = 0.388) was not significantly different from men treated with RP. There were statistically and clinically significant differences in general (fatigue, pain, dyspnoea, appetite loss, constipation, diarrhoea, financial difficulties) and disease-specific symptoms (sexual, urinary, bowel, ADT) by primary treatment. Fatigue and insomnia scores were high for survivors in all treatment groups.

CONCLUSIONS: Prostate cancer survivors' long-term HRQoL varied with primary treatment.

IMPLICATIONS OF CANCER SURVIVORS: Population-based information regarding statistically and clinically significant treatment effects on long-term global HRQoL, symptom burden and functionality should be provided during treatment decision-making. Screening for symptoms and utilising interventions during long-term follow-up may improve survivors' HRQoL.

Self-reported psychosocial needs and health-related quality of life of colorectal cancer survivors

Purpose of the research
To investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL).

Methods and sample
Using the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors.

Key results
Approximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence.

Conclusions
Overall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.

Quantification of standing balance in survivors of childhood posterior fossa brain tumours

Malgré un intérêt grandissant pour la question du devenir des survivants de tumeur cérébrale pédiatrique, l’évaluation de leur équilibre est souvent négligée. Les objectifs de nos travaux étaient de 1) examiner les écrits portant sur l’équilibre chez les survivants de tumeur cérébrale pédiatrique; 2) comparer l'équilibre debout et la qualité de vie entre les survivants et un groupe d’enfants témoins; et 3) examiner l'association entre l'équilibre debout et qualité de vie chez les survivants. Notre recension des écrits démontra que les survivants de tumeur cérébrale présentent des troubles de l’équilibre, mais les limites méthodologiques des études nous empêchent de conclure de manière définitive. Ensuite, nous avons recruté un groupe d’enfants survivants d’une tumeur cérébrale de la fosse postérieure et un groupe d’enfants sains. Leur équilibre était évalué à l’aide du Bruininks-Oseretsky Test of Motor Proficiency-2nd edition (BOT-2) et du Pediatric Balance Scale (PBS). Certains participants ont aussi été évalués avec une plate-forme de force où les limites de stabilité étaient documentées. Finalement, tous les enfants et leurs parents remplissaient le Pediatric Quality of Life Inventory (PedsQL4.0). Nos résultats démontrent que les survivants présentent une diminution de l’équilibre mise en évidence par le BOT-2, mais que leur qualité de vie est similaire aux enfants sains. La performance au BOT-2 est associée à la dimension physique du PedsQL4.0, suggérant une relation entre l’équilibre et la qualité de vie. Nos résultats suggèrent qu’une évaluation de l’équilibre pourrait être bénéfique chez cette clientèle afin de mieux cerner ses besoins de réadaptation.