Dataset Information

Needs and rights awareness of stroke survivors and caregivers: a cross-sectional, single-centre questionnaire survey.

ABSTRACT:

Objectives

The needs and rights awareness of stroke survivors have not been reported in China. This study investigated the needs and rights awareness of stroke survivors and caregivers in Tianjin, China.

Setting

A survey launched by the World Stroke Organization was conducted in Tianjin, China. The questionnaire included demands for psychological support, treatment and care, social support and information. Stroke survivors and their caregivers were interviewed face to face for the questionnaire. Between June 2014 and February 2015, stroke survivors were invited to participate if they were more than 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.

Participants

Two hundred and forty-eight stroke survivors and 212 caregivers were enrolled.

Primary outcome measures

The correlations between levels of needs and potential effect factors were analysed. Levels of different needs were compared by age, gender and time since stroke.

Results

Among the cohort, 95.6% stroke survivors and 92.5% caregivers agreed to each question in the questionnaire. The participants prioritised the needs for psychological support (99.4%), treatment and care (98.6%), social support (98%) and information (96.2%). The total score was negatively correlated with age (r=-0.255, p<0.01). Patients below 65 years old had higher scores than those 65 years or older (p<0.01), while male patients had higher scores than female patients (p<0.01).

Conclusions

The needs for psychological and emotional support, individual treatment, social support and information about stroke were eagerly reported by most survivors. The Bill of Rights must be recognised by the Chinese society, providing appropriate stroke care to every patient to optimise stroke outcomes.

SUBMITTER: Li X

PROVIDER: S-EPMC5640053 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Needs and rights awareness of stroke survivors and caregivers: a cross-sectional, single-centre questionnaire survey.

Li Xin X Xia Xiaoshuang X Wang Peilu P Zhang Shuting S Liu Ming M Wang Lin L

BMJ open 20171005 10

<h4>Objectives</h4>The needs and rights awareness of stroke survivors have not been reported in China. This study investigated the needs and rights awareness of stroke survivors and caregivers in Tianjin, China.<h4>Setting</h4>A survey launched by the World Stroke Organization was conducted in Tianjin, China. The questionnaire included demands for psychological support, treatment and care, social support and information. Stroke survivors and their caregivers were interviewed face to face for the ...[more]

PMID: 28982805

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Project description:BackgroundWeb-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers.ObjectiveThis study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers.MethodsA cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables.ResultsOverall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001).ConclusionsFuture feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.

Project description:BackgroundSchizophrenia is associated with high relapse rates, and medication nonadherence is a major factor contributing toward relapse. Since medication adherence and treatment awareness are linked, an alarming need was felt to evaluate the level of drug treatment awareness in patients who have schizophrenia. Besides, patients who have schizophrenia are often dependent on their caregivers for medications. Hence, the current study was also designed to look into drug treatment awareness among caregivers.MethodsThis was a cross-sectional, questionnaire-based study. Patients diagnosed with schizophrenia as per The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition were included, provided they had good insight and had been prescribed medications at the study center for at least three months. Caregivers were included using the Pollak and Perlick criteria. The sociodemographic profile of the patients and caregivers was recorded, and further assessment for treatment awareness was done using the prevalidated Drug Treatment Awareness Questionnaire (DTAQ).ResultsA total of 166 patients and 157 caregivers were enrolled. Mean drug awareness scores among patients and caregivers did not show statistically significant differences (P= 0.22). Mean ± SD DTAQ awareness scores in patients and caregivers were 12.57 ± 1.81 and 12.84 ± 1.91, respectively. The majority of patients and caregivers (> 90%) possessed awareness in domains related to past medication records and in that of re-visit/re-contact instructions. Awareness was least commonly seen in relation to side effects of medications and details of the prescribed medications, where only about 50% of patients and caregivers possessed awareness. No clinically significant correlation was found between sociodemographic factors and drug treatment awareness scores.ConclusionDrug treatment awareness in patients and caregivers was comparable and was not reliant on the sociodemographic factors. Special interventions should be conducted to raise drug treatment awareness among patients having insight and their caregivers.

Project description:OBJECTIVES:To design a questionnaire and use it to explore unmet needs with practical aspects of medicine taking after stroke, predictors of medicine taking and to estimate the proportion of survivors who get support with daily medication taking. DESIGN:Four workshops with stroke survivors and caregivers to design the questionnaire.A cross-sectional postal questionnaire in primary care. SETTING:18 general practitioner practices in the East of England and London. Questionnaires posted between September 2016 and February 2017. PARTICIPANTS:1687 stroke survivors living in the community outside institutional long-term care. PRIMARY OUTCOME MEASURES:The proportion of community stroke survivors receiving support from caregivers for practical aspects of medicine taking; the proportion with unmet needs in this respect; the predictors of experiencing unmet needs and missing taking medications. RESULTS:A five-item questionnaire was developed to cover the different aspects of medicine taking. 596/1687 (35%) questionnaires were returned. 56% reported getting help in at least one aspect of taking medication and 11% needing more help. 35% reported missing taking their medicines. Unmet needs were associated with receiving help with medications (OR 5.9, P<0.001), being on a higher number of medications (OR 1.2, P<0.001) and being dependent for activities of daily living (OR 4.9, P=0.001). Missing medication was associated with having unmet needs (OR 5.3, P<0.001), receiving help with medications (OR 2.1, P<0.001), being on a higher number of medicines (OR 1.1, P=0.008) and being older than 70 years (OR 0.6, P=0.006). CONCLUSIONS:More than half of patients who replied needed help with taking medication, and 1 in 10 had unmet needs in this regard. Stroke survivors dependent on others have more unmet needs, are more likely to miss medicines and might benefit from focused clinical and research attention. Novel primary care interventions focusing on the practicalities of taking medicines are warranted.

Project description:PurposePhysicians' awareness of their cancer patients' unmet needs is an essential element for providing effective treatment. This study investigated the accuracy of physicians' awareness of breast cancer survivors' unmet needs in Korea.MethodsA cross-sectional interview survey was performed among 106 physicians and 320 Korean breast cancer survivors. The Comprehensive Needs Assessment Tool was administered to physicians and cancer survivors after obtaining their written informed consent to participate. Data were analyzed using t-test, analysis of variance, and multiple regression analysis.ResultsThe level of unmet needs was highest in the hospital service domain (mean ± standard deviation: 2.19 ± 0.82), and the top-ranked unmet need item was "wished my doctor to be easy, specific, and honest in his/her explanation" (2.44 ± 0.93). Higher unmet needs were correlated with the presence of a genetic counseling clinic. They were not associated with age, sex, marital status, religion, department, working period, type of institution, number of staff, and number of operations. In multiple regression analysis, the presence of a genetic counseling clinic was associated with a higher level of recognition for psychological problems, social support, hospital service, and information and education needs. Physicians overestimated breast cancer survivors' unmet needs in all domains, compared to their self-reported unmet needs. The discordance in the perceived unmet needs was highest in the 'family/personal relationship problems' domain.ConclusionsPhysicians who treat Korean breast cancer survivors rated the level of unmet needs of breast cancer survivors as highest in the hospital service domain. The presence of a genetic counseling clinic in physicians' institutions was associated with a higher perception of survivors' unmet needs. Physicians overestimated the level of unmet needs in Korean breast cancer survivors. Efforts to reduce these discordances are needed to implement optimal survivorship care.

Project description:ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision.DesignCross-sectional questionnaire survey of patients with pancreatic cancer in the UK.SettingIndividuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018.Participants274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British.Primary outcome measuresExperiences of communication and information; involvement in treatment decisions; supportive care needs.ResultsCommunication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease.ConclusionsPatients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

Dataset Information

Needs and rights awareness of stroke survivors and caregivers: a cross-sectional, single-centre questionnaire survey.

Objectives

Setting

Participants

Primary outcome measures

Results

Conclusions

Publications

Needs and rights awareness of stroke survivors and caregivers: a cross-sectional, single-centre questionnaire survey.

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