OBJECTIVE: To assess knowledge and perceptions regarding PD in a large multiethnic urban Asian cohort of patients and caregivers.
METHODS: We conducted a survey at a university hospital neurology clinic, using a novel Knowledge and Perception of Parkinson's Disease Questionnaire (KPPDQ).
RESULTS: The KPPDQ had satisfactory psychometric properties among patients and caregivers. Five hundred subjects were recruited with a 97% response rate (211 patients, 273 caregivers). Non-motor symptoms such as urinary problems, visual hallucinations and pain were relatively poorly recognized. Many (≈ 50-80%) respondents incorrectly believed that all PD patients experience tremor, that PD is usually familial, and that there is a cure for PD. About one-half perceived PD to be caused by something the patient had done in the past, and that PD medications were likely to cause internal organ damage. Issues of stigma/shame were relevant to one-third of patients, and 70% of patients perceived themselves to be a burden to others. Two-thirds of participants felt that PD imposed a heavy financial toll. Participants were about equally divided as to whether they would consider treatment with deep brain stimulation, tube feeding or invasive ventilation. Over three-quarters of patients expressed a preference to die at home.
CONCLUSIONS: Important knowledge gaps, misperceptions and perspectives on PD were identified, highlighting the need for further efforts to raise awareness and provide accurate information regarding PD, and to address patient's and caregivers' needs and preferences.
METHODS: a steering committee was assembled and 10 working Groups were created to provide preliminary evidence-based recommendations. A cross-cutting theme on patient's perspective was also created. In addition, a worldwide multidisciplinary group of experts and stakeholders, to review the proposed recommendations and to participate in a Delphi process to achieve consensus for the final recommendations, was brought together.
CONCLUSION: in this New Horizons article, the global challenges in falls prevention are depicted, the goals of the worldwide task force are summarised and the conceptual framework for development of a global falls prevention and management guideline is presented.
DESIGN: Instrument development.
METHOD: Focus group discussions were conducted among informal carers and healthcare specialists in March 2017. The content validity was determined by the mean of the item content validity index. A reliability test was performed by the Kuder-Richardson 20 and Pearson's correlation coefficient among 40 informal carers of patients with a traumatic brain injury in the rehabilitation medicine department of a tertiary hospital from August-September 2017.
RESULTS: The final 34-item questionnaire covers the nature of traumatic brain injury, the consequences of traumatic brain injury, the rehabilitation process, and the role of the caregiver. The item content means ranged from 0.8-1.00, and the difficulty of knowledge items ranged from 0.18-0.98. The internal consistency reliability and correlation coefficient were 0.70 and 0.84, respectively.
METHODS: A parallel, open-label, 2-arm prospective, pilot randomised controlled trial was conducted at a long-term stroke service at a university based primary care clinic. All stroke caregivers aged ≥ 18 years, proficient in English or Malay and smartphone operation were invited. From 147 eligible caregivers, 76 participants were randomised to either SRA™ intervention or conventional care group (CCG) after receiving standard health counselling. The intervention group had additional SRA™ installed on their smartphones, which enabled self-monitoring of modifiable and non-modifiable stroke risk factors. The Stroke Riskometer app (SRATM) and Life's Simple 7 (LS7) questionnaires assessed stroke risk and lifestyle practices. Changes in clinical profile, lifestyle practices and calculated stroke risk were analysed at baseline and 3 months. The trial was registered in the Australia-New Zealand Clinical Trial Registry, ACTRN12618002050235.
RESULTS: The demographic and clinical characteristics of the intervention and control group study participants were comparable. Better improvement in LS7 scores were noted in the SRA™ arm compared to CCG at 3 months: Median difference (95% CI) = 0.88 (1.68-0.08), p = 0.03. However, both groups did not show significant changes in median stroke risk and relative risk scores at 5-, 10-years (Stroke risk 5-years: Median difference (95% CI) = 0.53 (0.15-1.21), p = 0.13, 10-years: Median difference (95% CI) = 0.81 (0.53-2.15), p = 0.23; Relative risk 5-years: Median difference (95% CI) = 0.84 (0.29-1.97), p = 0.14, Relative risk 10-years: Median difference (95% CI) = 0.58 (0.36-1.52), p = 0.23).
CONCLUSION: SRA™ is a useful tool for familial stroke caregivers to make lifestyle changes, although it did not reduce personal or relative stroke risk after 3 months usage.
TRIAL REGISTRATION: No: ACTRN12618002050235 (Registration Date: 21st December 2018).
METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.
RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.
CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.
OBJECTIVE: To assess the uses, needs and preferences towards a dietary application among the caregivers of AAMDs patients.
METHODS: We conducted a mixed-method study comprising focus group discussion (FGD) and a quantitative questionnaire survey among caregivers of patients aged between 6-month-old to 18-year-old with AAMDs who are receiving active treatment, both medical and dietetic treatment in the genetic clinic, Hospital Kuala Lumpur (HKL).
RESULTS: A total of 76 and 20 caregivers participated in the survey and FGD respectively. All the caregivers (100%) possessed a smartphone and most of the caregivers (89.5%) had the experience of using smartphone or other technological devices to search for health or medical information. However, majority of the participants were not aware of the existence of any web-based or mobile application related to AAMDs (89.5%). While for the qualitative part, three themes emerged: (1) experience with current source of information; (2) needs for supporting self-management educational contents and needs for technological design application. Most of the caregivers used the nutritional booklet as sources of reference but some of them searched for web-based information. Features perceived by the caregivers included a digital food composition database, sharing diet recall with healthcare providers, self-monitoring diet intake as well as low protein recipes. Besides that, user-friendly and ease to use were also perceived as the important features by the caregivers.
CONCLUSION: The identified features and needs by the caregivers should be integrated into the design of the apps to promote acceptance and usage.
MATERIALS AND METHODS: The research instruments used included The McMaster Family Assessment Device Adaptation, IEXPAC, and S.N.Q. 22, F.Q., P.S.Q., Social Support Questionnaire shortened version, The Family Focused Mental Health Practice Questionnaire and extraversion personality questionnaire. The questionnaire was distributed to caregivers with a population of 175 individuals. The sample size of this study was 133 individuals selected through proportional random sampling. The data were analysed using Structural Equation Modeling Partial Least Square (SEM-PLS) with Amos software v.26.0.
RESULTS: The phase one research showed that intention and satisfaction are the leading indicators of family acceptance that can influence family roles. At the same time, family acceptance is influenced by personal character (p≤0.001), care experience (p≤0.001), social support (p≤0.001), social norms (p=0.004), symptom severity (p≤0.001), and stigma (p≤0.001). Additionally, family acceptance significantly impacted the family's caregiving role (CR=6.573, p≤0.001).
CONCLUSION: It was found that the family acceptance model to improve the family's role in the care of patients with severe mental disorders focuses on the acceptance that the family has to be able to carry out its role well in patients. To improve family acceptance, families still lack the personal character expected in caring for patients with severe mental disorders at home. It is necessary to increase commitment to care and positive values in life.
METHODS: We identified articles published Jan 1, 2005, to March 7, 2019, describing financial burden/toxicity experienced by cancer patients and/or informal caregivers using OVID Medline Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. Only English language peer-reviewed full papers describing studies conducted in very high development index countries with predominantly publicly funded healthcare were eligible (excluded the USA). All stages of the review were evaluated in teams of two researchers excepting the final data extraction (CJL only).
RESULTS: The searches identified 7117 unique articles, 32 of which were eligible. Studies were undertaken in Canada, Australia, Ireland, UK, Germany, Denmark, Malaysia, Finland, France, South Korea, and the Netherlands. Eighteen studies reported patient/caregiver out-of-pocket costs (range US$17-US$506/month), 18 studies reported patient/caregiver lost income (range 17.6-67.3%), 14 studies reported patient/caregiver travel and accommodation costs (range US$8-US$393/month), and 6 studies reported financial stress (range 41-48%), strain (range 7-39%), or financial burden/distress/toxicity among patients/caregivers (range 22-27%). The majority of studies focused on patients, with some including caregivers. Financial toxicity was greater in those with early disease and/or more severe cancers.
CONCLUSIONS: Despite government-funded universal public healthcare, financial toxicity is an issue for cancer patients and their families. Although levels of toxicity vary between countries, the findings suggest financial protection appears to be inadequate in many countries.
OBJECTIVE: This study aimed to translate and validate the CAFU instrument into the Malay language and test the validity and reliability of the CAFU among informal stroke caregivers in Malaysia.
METHODS: A standard forward-backward translation method was employed to translate CAFU. Subsequently, 10 expert panels were included in the validation process, and thereafter reliability testing was conducted among 51 stroke caregivers. The validation of the instrument was determined by computing the content validity indices (CVIs), and we used the Cronbach's alpha method to explore the internal consistency of the overall score and subscales scores of the Malay-CAFU. Finally, the explanatory factor analysis used principal component extraction and a varimax rotation to examine construct validity.
RESULTS: All items of the Malay-CAFU had satisfactory item-level CVI (I-CVI), with values greater than 0.80, and the scale-level CVI (S-CVI) was 0.95. These results indicate that the Malay-CAFU had good relevancy. The internal consistency for the reliability test showed a Cronbach's alpha value of 0.95 for the overall score. The eigenvalues and scree plot supported a two-factor structural model of the instrument. From the explanatory factor analysis, the factor loadings ranged from 0.82 to 0.90 and 0.56 to 0.83, respectively.
CONCLUSION: The Malay-CAFU questionnaire is a valid and reliable instrument to assess the dependence level of stroke survivors and the upset level of informal stroke caregivers in Malaysia.