Science topic

Caregivers - Science topic

Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients.
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My research paper will be focusing on The Impact of Caregiving Burden and Coping Strategies on Burnout Among Informal Caregivers.
Therefore, I am planning to use Two-way ANOVA and Multiple Regression to study the interaction between these variables:
IV: Caregiving Burden, Coping Strategies
DV: Informal Caregiver Burnout
Would greatly appreciate it if advice is given on whether I am on the right track, or to suggest any other suitable models. Thank you for your time.
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Thank you Suraj Kapoor for answering my question!
It allowed me to understand deeper about the context of my study, as I found out that it is preferred to examine relationships with subscale scores as continuous variables and outcomes. Investigators often dichotomize results into burnout – non-burnout but there is no accepted standard definition.
Also, I gained more understanding of logistic regression!
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Hello,
I'm hoping someone might be able to steer me in the right direction.
I'm undertaking a research project looking at parents/caregiver's attitudes towards telemental health (TMH). Specifically, comparing 3 groups:
1. parents/caregivers who have a child/adolescent with a mental health diagnosis
2. parents/caregivers who have a child/adolescent without a mental health diagnosis
3. adults with no dependents
In addition to this, I want to understand how parents/caregiver's culture (CALD background) influences their attitudes towards future use of telemental health.
My survey questions will be based on parents/caregivers future attitudes toward using TMH.
I am stuck on selecting the correct statistical analysis to undertake. I am thinking some form of regression analysis, but not certain which one or if a regression is appropriate.
Thank you :)
Sonya
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Rhianon Allen makes a very useful point. With a regression, you can define the effects that interest you. In this case, a) what is the effect of having children and b) does the presence of mental health issues have an additional effect over and above that of having children.
With an ANOVA, you end up asking if there's "some kinda" difference between the groups. You rarely encounter a situation where the's the best hypothesis that the current state of theory and evidence can come up with. Looking back on it, I don't think that in my entire life I've ever used an ANOVA in a published paper.
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Hello. I am Mayura Mulay pursuing my postgraduation in Manipal Academy of Higher Education. I am conducting my Master's research on 'The influence of perceived parenting styles on core schema and aspects of identity among emerging adults'. I invite you to kindly participate in the study if you fulfil the following criteria
1. You are between 18-25 years old
2. You are of Indian nationality and residing in India
3. You have grown up with atleast one primary caregiver (Father/Mother/Both)
This is a tripartite survey which will assess three dimensions of the study. The information collected through this process will be kept confidential and will only be used for research purposes. Please remember that participation in the study is voluntary and you can withdraw from the study at any stage.
This is the link for the form:
In case of any questions, kindly contact me here:
Mayura Mulay
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I think it will be harder to find such age here in RG.
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about mental health of care givers of individuals with neurodevelopmental disorders
under this;
1.mental health components
2.contribution of health professionals for mental health
3. contribution of health professionals for mental health of care givers of individuals with neurodevelopmental disorders
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Hi everyone! I am a PhD student at the University of Sussex and I am looking for parents/guardians/carers based in the UK to fill in an online survey about their child's participation on YouTube. If you have a few minutes to spare please fill in this short online questionnaire
I am also looking for young people (12-14 years old) to participate in the research.
You can find more information about the study at www.youtubeandyoungpeople.com
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Done
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Hi,
I am using a secondary dataset for a project and using path analysis (SEM) to test a model based on a theoretical framework. As the dataset does not have clear validated scales for each construct that I am trying to include, I have to combine different items from the survey to create a composite score for each construct I am interested.
My main concern is related to the weighing of items on composite scores that I am creating based on the available data from a secondary dataset I am using for the project. For example, to measure objective caregiver burden, I am planning on including items that ask about the care recipient's cognitive functioning and ADL/IADL support and caregiving activity rate. However, given the different number of items and scales that measure each aspect of burden (cognitive functioning 19 items, 30 points, MMSE; ADL/IADL support 7 items vs. 10 items, 0-2 points each; caregiving activity rate 4 items, 0-5 points each tapping at different frequencies), it does seem appropriate to just create a total sum and/or mean score for the composite as it can end up weighing the variables that have more items more heavily than those with fewer items. Is there a way to create a meaningful composite score considering these differences??? Any possible and feasible solution???
Thank you so much!!!
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I will echo the comment that the SEM software should in the measurement model phase of the analysis handle the different scaling issues. It would also inform you of the appropriateness of creating a latent construct pooling across concepts as disparate as ADL and IADL, etc. In perfect candor I suspect that pooling these into a single composite will not be statistically justified.
If you are planning to avoid the measurement model phase of the analysis and move directly to the path analysis/structural equation portion of the analysis, then one way that you can avoid the implicit weighting implied by the different scale ranges is to convert all of the measures by dividing by the theoretical upper limit, thereby creating measures that all range from 0-1 with fractional values representing the mid-points of the scale. This will eliminate the implicit weighting.
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I am looking for some methodological advise on if this survey has to be completed independently or if it can be completed with the support of a researcher? And how this should be reported?
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Today, I found out that a person with a name Meseret Molla Kassahun used my published article as his own and posted it on research gate. I contacted his former boss, Dr Desalegn , the president of Gondar university, However, Dr Desalegn told me that this person was dismissed from Gondar university for other similar problems.
My article is here https://onlinelibrary.wiley.com/doi/abs/10.1111/ijsw.12145 I have evidence of several communication with the journal editor.
Meseret Kassahun!
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on the bottom of the left column you will have Confirm your authorship link, or you can simple visit this link:
There you will have a search field, which will help you to search for your publications on ResearchGate.
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I'd like to measure the caregiver burden in study of direct and indirect costs of schizophrenia. I was planning to use the FBIS (Tessler and Gamache, 1994), Brazilian version. I learnt that Pai & Kapur FBIS is the most used, followed by ZARIT-22. However, I did not find a Brazilian version of Pai & Kapur FBIS and I'm afraid that ZARIT-22 is specific for the caregivers of elderly.
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Thanks to you, dear Dra.Monica Kayo
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Hello! We are researchers from Anglia Ruskin University, the University of Central Lancashire, and the University of Sheffield and we are conducting an online study to investigate language development in babies aged 10-24 months who are exposed to more than one language in the home environment. Specifically, we are looking for both parents/carers and their babies who are living in the UK to take part in the study. Specifically, we are interested in infants who are learning two languages in the home (for example, mum speaks to the baby consistently in Greek and Dad speaks to the baby consistently in Portuguese OR Dad speaks English and Grandma speaks Italian to the baby). The study will be conducted online, and each parent/carer will take part in two sessions: (1) Session 1 will involve parents/carers completing an online questionnaire and (2) in Session 2 parents/carers and their babies will complete a short language game online. We’re looking for families where two caregivers from the child’s home can participate in the study and we offer a £10 voucher to thank each participant for their involvement. You can find the Participant Information Sheet here: https://rb.gy/npacqz. If you’d like to participate, you can easily sign up here https://rb.gy/ezc1j9 and if you have any questions, feel free to email the team at bilingualbabystudy@gmail.com.
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I have been a father ten months ago. I won't raise my child in bilingual household but as I am an English teacher but my mother tongue is Bangla, I have planned to teach him both languages from the beginning so that he can adopt both languages easily and comfortably.
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I am currently researching the emotional and empathetic capacity of live-in caregivers of persons with schizophrenia, bipolar, or post-traumatic stress disorder as they relate to stress management. The survey is about 15 mins long. If you wish to analyze individual results make sure to record your responses separately. I appreciate your time and will publish results at the culmination of the study.
Data collection is currently completed for this survey. Please stay tuned for publication. Thank you all for your contribution to the survey and may mental health and wellness be with you.
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Of course I know them and, even more so, I treat them as a Mental Health Specialist. As soon as I have some time to complete the Questionnaire, I WILL DO IT!
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I would like to carry out this research in Mulago hospital-Uganda, however, I have not been able to find a standardised tool.
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Thank you!
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Hi,
I am looking for literature on preferably ASD research focusing on behavioural interventions with single case designs. Specifically where children or adolescents receiving the intervention are self-reporting on their weekly or daily progress (whatever the frequency of the measurements).
For a research project we are investigating whether we would like our clinical group to assess their own progress, or to let parents/teachers/caregivers rate. All methods have their own downsides so we are simply seeing what the best options are.
Thank you in advance!
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Hi,
Here are some studies of the topic of interest:
Watkins L, Ledbetter-Cho K, O'Reilly M, Barnard-Brak L, Garcia-Grau P. Interventions for students with autism in inclusive settings: A best-evidence synthesis and meta-analysis. Psychol Bull. 2019 May;145(5):490-507. doi: 10.1037/bul0000190.
Hutchins NS, Burke MD, Bowman-Perrott L, Tarlow KR, Hatton H. The Effects of Social Skills Interventions for Students With EBD and ASD: A Single-Case Meta-Analysis. Behav Modif. 2020 Sep;44(5):773-794. doi: 10.1177/0145445519846817
Wright B, Marshall D, Adamson J, Ainsworth H, Ali S, Allgar V, Collingridge Moore D, Cook E, Dempster P, Hackney L, McMillan D, Trepél D, Williams C. Social Stories™ to alleviate challenging behaviour and social difficulties exhibited by children with autism spectrum disorder in mainstream schools: design of a manualised training toolkit and feasibility study for a cluster randomised controlled trial with nested qualitative and cost-effectiveness components. Health Technol Assess. 2016 Jan;20(6):1-258. doi: 10.3310/hta20060
Feldman JI, Dunham K, Conrad JG, Simon DM, Cassidy M, Liu Y, Tu A, Broderick N, Wallace MT, Woynaroski TG. Plasticity of Temporal Binding in Children with Autism Spectrum Disorder:A Single Case Experimental Design Perceptual Training Study. Res Autism Spectr Disord. 2020 Jun;74:101555. doi: 10.1016/j.rasd.2020.101555
Whalon KJ, Conroy MA, Martinez JR, Werch BL. School-based peer-related social competence interventions for children with autism spectrum disorder: a meta-analysis and descriptive review of single case research design studies. J Autism Dev Disord. 2015 Jun;45(6):1513-31. doi: 10.1007/s10803-015-2373-1.
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Hello!
I am currently studying at ASU, getting my MA-SPED-ABA degree. Additionally, I am a Student Analyst with PBS Corp.
As I have been working in the ABA field and studying, it has become clearer to me that I want to continue my studies, potentially getting my Ph.D.
What I'm interested in is learning the reason(s) behind caregivers/teachers lack of fidelity with behavior change programs. As practitioners, if the team isn't working together to create success for the client (which the hope would be to have that success trickle into the family or classroom unit), we can either just accept it or figure out the best methods to get everyone on the same page with involvement.
Ultimately, my goal is to teach at the university level, do research and perhaps create programs to help ABA companies, their BCBAs and clients (consult?).
I was introduced to the term "non-linear" with respect to practicing ABA, and am very interested in it.
Any thoughts or advice would be great!
Thanks,
Irene Good
Austin, TX
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That depends on your career goals and whether you would like to go online or not. There are several options for PhDs online is special education and applied behavior analysis. Endicott and capella have online PhDs in ABA.
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I wish to ask parents no more than 30 questions about the mental health of their adult children. One example of such a survey - but a long one - is ABCL 18/59. I am looking for something shorter like the General Health Questionnaire - but for parents. Of course, it does not have to be specifically for parents it can be for caregivers or any adult reporting on other adults. Although a tool for physicians will not do, as it has to be in a layman's language.
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Dear Uri Berger I'm certainly not an expert in the field and I'm not sure if this is any useful. Please have a look at the following article entitled
“We Are More than Our Parents’ Mental Illness”: Narratives from Adult Children
This article is available as public full text on RG.
Please also see this potentially useful study entitled
Parents Caring for Adult Children With Serious Mental Illness: A Qualitative Descriptive Study: A Dissertation
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In the literature, I can find many validations about the target-population (patients) but nothing to who can use the scale clearly .
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I looked to see what I could find:
Bellón, J. A., & Pancorbo-Hidalgo, P. L. (2016). family caregivers about prevention of pressure ulcer and dependence-related skin lesions: development and validation. Gerokomos, 27(2), 73-79.
This is not in English:
But I expect the RG requested full text will be:
García-Sánchez, F. J., Martínez-Vizcaíno, V., & Rodríguez-Martín, B. (2019). Patients’ and caregivers’ conceptualisations of pressure ulcers and the process of decision-making in the context of home care. International journal of environmental research and public health, 16(15), 2719.
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We are conducting a pilot study of an intervention for informal caregivers of persons who have recently received a bone marrow transplant in the US. If you know of anyone who might be interested, please feel free to share the study link. Thank you.
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I don't any one who has received Bone marrow transplant.
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I am struggling with the most appropriate method to use for my Master thesis on the impact on mental health indicators of informal caregivers before and after the start of the COVID-19 pandemic. I will use SHARE panel data for 3 countries and have also access to a special COVID-19 Survey from SHARE, asking three indicators of interest. My hypothesis follows the assumption that informal caregivers show a difference in the outcome indicators of mental health after the start of the COVID-19 pandemic. I will also analyze whether I see a difference between the three countries and translate it to their COVID-policy to support informal caregivers and long-term care system. First, I got advised to use a Dif-in-Dif, but I have no control group, since everybody is affected by the pandemic. Then, I was thinking to use a fixed effects methods, but the special COVID-19 Survey does not ask the same variables that could change over time as the normal questionnaire does. It does include plenty of other variables concerning COVID, but these are questions asked for the first time in this Survey. I am not advanced with STATA, so could use all the help regarding the best method to use in this case.
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I think you should have to collect primary data firstly through survey Google form by two modes
Question related to mental health before covid and questionnaire related to mental health after Covid situation
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COVID-19 pandemic has upended family life around the world. School closures, working remote, physical distancing — it's a lot to navigate for anyone, but especially for parents. Also, they have always been tough, but it has been made even tougher by homeschooling, work from home, and all the financial uncertainties surrounded by COVID-19.
What are the tips for Lifelong Health initiative to bring parents and caregivers to help manage this new normal?
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Thanks for your valuable comments Windhya Herath Michael Uebel Sanjay Arora
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We are involved in an international project in this area and may be was interesting to share information with others peers interested in the subjec.
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Hi Donna
Thank you for your answer. I need to contextualize. I am the President o Santa Maria Health School, in Portugal (www.santamariasaude.pt). We have nursing and physiotherapy courses, and a course to train personal caregivers/personal assistants (Independent life movement) and next year occupational therapy. Our strategy is to train professionals, in an integration way, that people with limitations of autonomy (temporary or permanent) need.
In the case of caregivers, they are the professionals who help people in the day life activities.
In Portugal this professionals have currently low qualifications and the market is not prepared to pay a better salary to these new ones with higher education qualifications (two year course after secondary school.) Beyond this there is a great discussion about the components of the plan of caregivers courses in higher education.
These are the main reasons why I am interested in a network of trainers with practice in this area with the goal to establish the basic design of an international curriculum with the possibility to adapt to the context of any country.
What do you think about this proposal?
Best regards.
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I am doing a systematic review looking at factors that could predict the level of burden in stroke carers. I have narrowed down to the final studies I want to use and I have their data. Unfortunatley the only data I have are the Means and SDs of the factors and burden levels. I am trying to work out how I can look at if there is a correlation or not, but I can't work out how to do it. Everything I try (except for SPSS summary independent samples t-test) doesn't seem to work, I think because it takes each result from a study as one participant and I cant find anyway of me saying for this study there were x participants and this as the mean result. Can anyone help?
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Hello Julia,
The ideal way is to have either: (a) reported inter-variable correlation values for each individual study; or (b) access to the raw data from the individual studies. It might be that you could contact authors of the respective studies and request either (a) or (b). Barring that, your task will be quite difficult.
A proxy method, which could yield somewhat misleading results, would be to use the study as the individual case/unit/replication, and record the respective means as if they were raw data points. Given a sufficient number of studies, you could report on whether average IV values did or did not relate systematically to average DV values across studies. You could optionally weight the studies by their sample sizes so as to give more impact to the larger-N studies.
However, the potential danger is that, the behavior of inter-variable relationships is often different for individual cases than for batches of cases (which is why multi-level designs have become so important in the past 20-30 years).
Good luck with your work.
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People with Dementia (PwD) have difficulty living their daily lives. And to help PwD, the caregiver is one of several solutions. However, caregivers also have many challenges in helping PwD. Because the memory and thinking decreased dramatically, PwD usually has many symptoms such as Agitation and Anxiety, repetitive questions, depression, hallucinations, sleep disturbances, etc. which make PwD refuse to be helped by caregivers. Therefore, approaches or methods that can help caregivers are needed so that their efforts to support PwD are successful. I have read "humanitude" which is one of the most successful methods. But are there other methods you might know about? Please share. Thank you.
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See: Johnson, C and Johnson, R. (2000) Alzheimer's disease as a trip back in time. American Journal of Alzheimer's Disease April or the short British Alzheimer's Society one page article. for an explanation of the time Travel model of AD. The updated version with more positive language in in the 2017 Behavioral Science journal article.
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this is a study for older adults in Malaysia, keyword: wellbeing, volunteerism
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I've attached a pre-print I wrote about the related topic of helping behavior. It may give you some useful information for your research.
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Interesting discussion on giving care to children! Does GDP/economic growth mean everything to a country? When we blindly pursue this target what are the negative by-products we get? Until very recently, we were targetting cognitive skills development of our children. But now the focus has started to shift to whole-person/holistic/ whole-brain-child development. Similarly, it is not just the GDP figure that matters but developing sustainable societies. "However 39 per cent of the women who reported childcare as the main barrier to work also confessed that they actually preferred to look after their children. Shock, horror." "The child is hardwired to its mother's smell, and the sound of her voice. The mother becomes responsive to her infant's face, its vocalisations and its touch. Because a child needs to be attached to someone to survive, evolution has led it to be programmed from before birth to attach to a caregiver as soon as it hits the deck. But this evolutionary necessity does not suit the modern world. It does not suit the neo-liberal world view of economic growth as the key driver of all actions and public policy."
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Normally mother's love has to be a barrier before work due to her basic commitment to her children.But it seems that mothers in modern time are divided between home ,family and work.Ultimately they sacrifice family to work.Hence devotion almost dies.This effects the raising of her children.They actually lose the basic sensitivity, emotional relationship and become more practical and self-centred.Eventually we have hard people!
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IMPORTANT: Best practices and answers will be published in the ASIDE project reports [ISBN], EPALE and in the project website. http://aside.inbie.pl/
Social work practice and the needs of people who use services, including carers, should drive the development and use of digital technologies.
We are continuing to seek examples of good practices on "how digital technology" is being used in social work practice and education.
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In work aorund supports for independent living for people with intellectual/developmental disabilities, with colleagues and a provider I am looking at the use of navigation app using smart phone and a smart watch to both support adults with intellectual/developmental disabilities in independently travelling around their neighborhoods while offering real time connections to family and other caregivers so they may support these activities. We are looking at increasing community engagement, greater variety in community activities and greater confidence about community engagement in both the persons with intellectual/developmental disabilities and in their caregivers
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Hey Ya'll,
I am wanting to test salivary cortisol levels in my participants. its a lab value and I do not know if we need to answer validity and reliability questions?
I could not find articles that discussed it? what is your input considering its a scientific procedure not really a scale? If I do need it, do you have any useful resource for me?
Would I need IRB approval for a study that requires salivary sample?
thank you
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Katherine Henson you should ask the lab what testing kit they use, they should have the validity and reliability on hand. If not, you can check on the website. They can probably tell you what swab or passive drool materials they prefer to work with as well.
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In collecting demographic variables, I do not need a specific scale? correct?
I can make my own stuff such as: marital status (Married, Single, Divorced, Widow, Domestic relationship), occupation (Full-time, part-time, unemployed), race (White, Hispanic or Latino, Black or African American, Native American, American Indian, Asian / Pacific Islander, Other), gender (Male, Female, other), caregivers' relationship to the recipient (Daughter, Son, Spouse, Daughter/Son in law, Other), Caregiver’s age (18-24, 25-34, 35-44, 45-54, over 55), overall health (Poor, Reasonable, Good, or Excellent), years of providing care (1-3, 4-6, over 6), number of children under 18 years old (0-1, 2-3, 4-5, over 5).
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Thank you so much for your help! I will try to revise the list and make it more concise.
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Hello everyone,
How would I answer this question? is it asking for a specific program or device?
"I will be storing the data on my password locked laptop"?
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As i have experience, there are many ways to save data, you can save it in your google drive, in mail or your memory card
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My research is about alzhimer's disease caregiver stress. I want to implement a 4 week long quasi- experimental study on one intervention group (no control) using pre-test post-test. I want to collect demographic data, Vital signs, salivary cortisol levels, perceived stress scale (PSS), and Kingston caregiver stress scale (KCSS). Then I will do the intervention (daily lavender aromatherapy via essential oil diffuser & 15 mins music therapy sessions for 4 weeks). Lastly, I will remeasure vital signs, salivary cortisol levels, PSS, and KCSS.
Are my variables correct?
Nominal: Marital status, number of household members, occupation, race, gender, and relationship to the care recipient.
Ratio: age, salivary cortisol level, blood pressure, heart rate, and respiratory rate.
Ordinal: duration of providing caregiving, Kingston Caregiver Stress Scale (KCSS) and A Global Measure of Perceived Stress scale (PSS).
Is my research design appropriate? What is the next step? DO I need null hypothesis?
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Yes, but the relationship to different persons does not sound like a nominal scale.
There should be a group with no intervention, this group I called a group with nothing. I did this many time with mice on the open field and one group just ambulated on the open field but did not get any intervention. Then we could see if the groups with interventions differed from the one group which did not get anything, e.g. was not subject to maze learning and so on. With MANOVA you see eventual interactions between lavender and music for example. You can also use
linear regression analysis where you see how much of stress, music explains or is reduced and how much lavender explains and so on.
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Child participants in research have a measure of vulnerability that requires strict ethical measures to handle it. In the wake of human rights and awareness of various laws, will research on minors become more complex?
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Its complex due to stringent conditions and measures a researcher must undergo to conduct such study with minors. Research that has to do with minors relating to health issues, psychological issues, emotional abuses and mental health issues etc are very difficult to ascertain with minors as your subjects. One need to undergo a thorough ethical guidelines and assessment procedures.
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I am looking to find out if support workers health literacy has a positive or negative effect on their charges when they are being supported at home, what the carers think their level of health literacy is and how this relates to interpersonal and integrated relationships within the wider medical support network for the learning disabled.
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Hello Zara,
I looked up about the health literacy of support workers / carers for people with learning disability but could not find much. You may already be aware of these.
This paper (p13) mentions the topic but does no go into detail:
Emerson, E., Baines, S., Allerton, L., & Welch, V. (2010). Health inequalities and people with learning disabilities in the UK: 2010. Durham: Improving Health & Lives: Learning Disabilities Observatory, 2010.
This is the 2012 edition:
I don't know if you would gain anything by looking up the references; some are regarding specific diagnoses.
The authors made this paper available on request from RG; maybe they could help, if you contacted them?:
P.8 of this link might be relevant but again, does not go into detail:
Turner, S., & Robinson, C. (2011). Health Inequalities and People with Learning Disabilities in the UK: 2010. Improving Health and Lives: Learning Disabilities Observatory.
I looked at this report regarding Wales:
but when I tried to access reference 52, the link did not work.
All these are quite old now.
Very best wishes,
Mary
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For example, if the clinical competence of nurses to patient care increaes,  the level of job stress will be reduce? and why?
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Dear Behrooz Rezaei
I totally agree with all previous comments. In my opinion, the competency factor is very important in improving performance, and it may help, but this is not enough to relieve or tension or stress among nurses, for example midwives, and their skills and talents will increase their confidence and improve their performance, but their number is low compared to the large number of patients, in addition to dealing with a pregnant woman during labor, it requires a long time of follow-up and attention during and after childbirth, there is difficulty in dealing with many patients during childbirth especially in primigravida and young age patients, as well as a lack of resources, and ill-treatment between the patient’s family and nurses or between the nurses and other health team all these factors increase the stress of nurses during their job
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Can anyone help me on how to access the above mentioned questionnaire? I need it for my research.
Thanks
Edward
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Can I directly use the scale if it has been already put to use by some other researcher in their respective paper?
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I work in the aged care system, mainly with people who have a diagnosis of dementia, and am currently doing a bachelor of dementia care with UTAS
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Several strategies could be put in place depending on unique presenting scenarios,but focus should be on patient safety,nutrition,adherence to medication and self care.
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Often times we may hear the term "nurse" used to describe a variety of caregivers in a medical setting. The title of nurse suggests that a person has knowledge, skill, ability and competency to provide a certain level of care. In your opinion, how much qualification or education can be enough for this title?
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Person professionally train to take care of patients
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I would like to know if there are models regarding PAC. Thank you so much!
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Virginia Henderson's theory is also positive (although my favorite is logotherapy) :
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Dear  Sara Campbell I work at University of Medical Sciences in Poznan (Poland), I am a nurse with a post-doctoral degree in health sciences. I got interested in the described project, is there any possibility to join this research? I have experience in studies on need for support among persons and carers od elder people. Didactically and scientifically I am involved in gerontology and geriatric nursing. I will be glad to supply more information on me, my team or my activities, if requested. With kind regards from Poznan, Dorota Talarska dtalarska@ump.edu.pl
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Dear Dorota, this study ended some years ago. Thank you for your interest and best of luck finding research to get involved in. Unfortunately my current research is also coming to an end very soon too.
All good wishes, Sarah
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Are observation logs completed by parent/support worker/care giver/partner useful information for clinical trials involving participants with autism? say for example testing a drug treatment or complementary therapy. Would this be useful additional information to a questionnaire? Log to monitor events of repetitive behavior, motor stereotypies, episodes of severe anxiety, aggression, "meltdowns" etc over a time period starting some time before the trial and some time after the trial has ended. I understand that participant with autism may not like the idea of a parent/SW/caregiver/parent writing information about them. Many trials involving autistic people and their families use follow up questionnaires and ask for feedback, generally with families reporting that X is doing well.
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Indeed it maybe emotive but as a person with autism myself HFA. and the point that have worked with behavioural scientists myself. I feel that to get the whole picture not just diagnostically you need observational and behavioural analysis logs for clinical trials to give the fuller picture as well as familial history etc.
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Which research topic will be more appropriate when conducting a phenomenological study among caregivers of children with Autism? I have two options here;
A. Experiences of caregivers of children with Autism.
B. Caregivers' experience in caring for children with Autism.
Which of these two topics is more appropriate? Should the phenomenon of interest be mentioned as in option B (caring for children with Autism) or it shouldn't be mentioned because it is self-implied as in option A?
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Dear Eric,
My pleasure. Moses
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Due to the traumatic change, the family has to adjust itself in ways that can cause many to question their ability to want to caregiver for the patient is forever altered. The patients require daily care, often hours depending on level of injury, and due to this dependency, most caregivers find that they are resentful for not having their own time, or suffer depression from isolation and feeling guilty about these feelings.
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Writing as a physician, a scientist working on empathy in medical care (and from personal experience), I can say that the answer would depend on the strength of the relationships within the family. Are family members close? Do they love and appreciate each other?
After all, in many ways we all already are care providers to our children, siblings and parents.
Personal time is a relative concept - care provision in the family is about priority, responsibility and giving a good example to your children.
The mental outlook of the injured family member though is also important. Giving-up and self-pity are normal at some point, but must not be sustained and encouraged.
Body issues (and/or damage) do not define a person. Their character does.
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I am looking to start a PPI group for patients (and their carers), with a large burden of polypharmacy, to gain insight into their experiences of taking medicines. I would be interested to hear from anyone who has set up a PPI group, either in this field, or others, who could offer guidance on the practical steps of setting up and running such a PPI group.
Thanks in advance,
Chris
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I have done a complete study on drug interactions, adrs and polypharmacy in patients of every age group and all the departments.and found one important thing that when you are willing to do this study first you need to select a group of patients of particular age group. Then you need to look whether the drugs that are being prescribed are according to the patients conditions.the next step would be to check whether the patients are facing any side effects or adrs due to the drugs.even many conditions arise due to drug interactions with drugs, food, age and other factors then you are all set for the further studies and can even lead to a healthy group. For reference follow this article
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Need a valid and easily accessible psychometric tools for measuring the psychological well being with respect to general health condition and quality of life of the informal carers of people living with Alzheimer. Those informal caregivers includes family members, spouse and other family relative who are not from the health background.
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This may not be the best tool but you can measure the caregiver's satisfaction with life as well as moral distress or attitudes towards Alzheimer patients:
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Hi,
I need a questionnaire that assess emotional burden of carers of psychiatric patients please. Thank you
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Work-related moral stress, ethical problems and attitudes have been in focus of interest:
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What would be an interesting topic for a PhD thesis with regards to cerebral palsy, from a clinical psychology perspective. It could also involve designing new models or interventions. My understanding is that cerebral palsy results in a lot of behavioural difficulties which has a psychological effect on the caregivers as well as the siblings. The effects of the first diagnosis is a crucial point, as well as how the mother-child attachment is affected.
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Thank you so much everyone for the responses.
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I am looking for thought leaders and researchers who specialize in the area of Alzheimer’s sufferer caregivers and caregiving with particular emphasis on how digital tech is being used to facilitate care of sufferer and resilience of the caregiver.
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Craig, check this out....
The American Journal of Geriatric Psychiatry
Volume 27, Issue 4, April 2019, Pages 426-445
Technology-Based Interventions for Informal Caregivers of Patients With Dementia—A Meta-Analysis of Randomized Controlled Trials
Author links open overlay panelFriederikeDeekenM.Sc.aMichael A.RappM.D., Ph.D.
https://doi.org/10.1016/j.jagp.2018.12.003
Objective
The aim of this study was to estimate the efficacy of technology-based interventions for informal caregivers of people with dementia (PWD).
Methods
PubMed, PsycINFO, and Cochrane Library databases were searched in August 2018, with no restrictions in language or publication date. Two independent reviewers identified 33 eligible randomized controlled trials (RCTs) conducting a technology-based intervention for informal carers of PWD. Meta-analyses for the outcome measures caregiver depression and caregiver burden were conducted with subgroup analyses according to mode of delivery (telephone, computer/web-based, combined interventions). To assess methodologic quality, the Cochrane risk-of-bias assessment was rated.
Results
Meta-analyses revealed a small but significant postintervention effect of technology-based interventions for caregiver depression and caregiver burden. Combined interventions showed the strongest effects.
Conclusion
Technology-based interventions have the potential to support informal caregivers of PWD. Because of advantages such as high flexibility and availability, technology-based interventions provide a promising alternative compared with “traditional services,” e.g., those for people living in rural areas. More high-quality RCTs for specific caregiver groups are needed.
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By Ken Gordon STAT
April 1, 2019Depth is
Paging Dr. Topol: Grasping the multidimensional narrative of ‘Deep Medicine’
Depth is all about discovering a new dimension. When you add width to length and height, you create volume, which just happens to be a synonym for “book.” I’ve just finished Eric Topol’s latest tome, “Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again,” and was fascinated by its multidimensional narrative.
Although artificial intelligence (AI) is more than human, Topol took great pains to make “Deep Medicine” a book of human dimensions. It mimics the direction the author wants medicine to take: to become more comprehensive, personal, effective, and humane as AI improves. He goes out of his way to reveal numerous sides of himself (patient, caregiver, husband, son-in-law, father, doctor, and researcher) as a way to embody health care’s holistic future...
What does humanizing medicine revolve around? One single factor?? Beyond lip service and the double-talk and triple thinking of Orwellian words?
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Yeah, till date, AI is just being implemented as tool in medicine domain for providing outperformed results of diagnostic tolerance levels than traditional methods. However, in near future, the AI tools like Reinforcement learning would pave the way for human like control in deciding the medicinal parameters for any disease.
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Hello....I am looking to examine the resilience characteristics of support workers of individuals on the autism spectrum who display behaviours of concern living in residential care. Can anyone suggest any suitable methodologies or approaches? Or possible ways to analyse the data? I was planning on using a recognised psychometric tool such as the Conner-Davidson resilience Scale...Thank you
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Hi,
There is a small but growing body of literature on resilience, positive adaptation, and growth in parents and families of children with autism and other developmental disabilities. You might want to take a look at the first chapter of
our recent book: Wang, M. & Singer, G.H.S. (2016) on evidence based practices in supporting families of children with developmental disabilities. Also a recent book
by Carroll on families and developmental disabilities has a food review of the more qualitative literature on positive adaptation.
I would start with some classic papers by J. Patterson on family adaptation in these families.
I would be sure to include measures of positive cognitive adaptation in parents-- there are instruments developed by the Beach Center group (the Kansas Inventory of Parent Perceptions, as well as an instrument developed by Jan Blacher and Richard Baker, and one from Richard Hastings in England).
You want to be sure to ground yourself in this literature if you want your work to be well received when it comes time for publication.
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Investigating caregiver emotional reaction to patients, I will use questionnaires validated in english.
One part of my sample will be french canadians, who use to be bilingual with the english and must in fact be to fill in the english questionnaires.
How to evaluate this bilingualism? Is it ok to rely on what the caregiver says, or should we "test" the bilingualism? In this case, which tool would you advise?
Thanks a lot for your answers 
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Hi Laurent Michaud , have you decided what measure to use to measure the degree of bilingualism?
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This is a very and unique occasion to partecipate at the first convention in which patients, caregivers and Doctors will work toghether in a brain storming....
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Dear Stephania,
The convention has already passed but we developed a PD model (mice) and tested the beneficial effects of physical exercise. It may interest you:
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this is research topic.
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OK you are in Nigeria.
The largest pool of research in this area comes from South Africa. You are a nursing student, right? So, are your interests clinical nursing, community nursing, or public health nursing?
Are you focused on spousal care only? Family unit definitions are fluid throughout Africa...this, plus inter-generational issues and issues of geriatric concerns will affect the questions you ask.
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I am completing a study of 8 - 12 year old children. Since children are considered a vulnerable population, I am seeking to have their emotional intelligence assessed by a parent or caregiver.
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is there a way i can get the norm sheet, which includes the reliability, validity and scoring for the domains of TEIQue-CF (children form). its really urgent.
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I want to be good researcher.
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I am doing an exploratory survey of health and wellbeing of caregivers of children with sickle cell anaemia using a validated questionnaire
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Hi, you should firstly conduct a pilot study (for example 30 questionnaires) and then use appropriate equations to calculate sample size according variance and accepted error. See Eng (2003) publication on sample size estimation.
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I recently completed a scoping review of interventions for community-dwelling persons living with dementia and would be glad to share these results with your team and connect further.
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I would like to get information about the process and the outcome because it is from issues that I am interested in demented illness care or elderly care. good work...
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In looking at the states where individuals with IDD have been transitioned to managed long term services and support, has anyone looked at the impact on caregiving? With the movement of these individuals to managed Medicaid for health services, has anyone looked at the impact on caregiving?
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Medicaid Managed Care? This is a new topic for me. I did not know there was this type of payor source. The type of managed care that I am used to is with the Medicare Part A patients. Instead of having traditional Medicare Part A, elders will sign up for a managed care service. Some of the elders are enrolled in United Health Care and the Skilled Nursing MDS assessments are different as in there are no 5d, 14d, 30 day assessments. Soon, in 2019, when PDPM goes into effect, the payment aspect is going to be a lot different than what we have now.
Someone mentioned Provider Burden, CMS is providing quite a bit of this with the new regulations coming out to take effect October 1, 2018, in long-term care.
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Do you think conducting a focus group discussion with mix of patients,carers and clinicians is a good idea?
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Most of the past research on focus groups has indeed separated the participants into homogeneous subsets, but there is no requirement to do so. This does mean, however, that there is rather guidance in the literature on how to conduct "mixed groups."
One way to think about this is how help the participants establish what is known as "common ground," so that they can talk about their shared interests in an issue -- even if those interests come from different perspectives. With that in mind, your recruitment procedures should emphasize those shared interests (and you certainly need to inform the participants about who else will be there, for ethical reasons). The same should be true in the introduction and instructions you give at the beginning of the group, but the biggest chance to develop a sense of common ground and shared interests is in the initial question. The goal there should be to ask something that: 1) all the different categories of participants will be equally able to address, and 2) everyone will be interested in what the others have to say. If addressing this set of issues feels straightforward to you, then a mixed group might well be workable.
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An interesting aspect is the mis-match between the pharma approach to improving cognition (a worthy goal, nevertheless) and the caregiver's need to keep the patient at home. (Cognition is perhaps less of an issue there than the incontinence, midnight wandering, sundowning etc, that comes with advancing AD). Can pharma embrace a more holistic approach to the patient, and think creatively about other goals that might meet the patient and caregiver goals, other than improved cognition?
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Although this article, below, was written in 2013, it still has practical ideas related to this important question. You might be familiar with it, but I want to alert other participant to this particular article.
"Cognitive enhancers: what they are, how they work and what is in the pipeline"
See also (2017) Safety, effectiveness of cognitive enhancers for Alzheimer's ranked. (and the reference)
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Can anyone suggest a good questionnaire to assess mental health knowledge/literacy and/or attitudes among caregivers of disable people?
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Hi,
Maybe this questionnaire can help.
Best wishes,
Ya'akov
.
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a model or theory that will guide by mphil thesis. the topic is "lived experiences of parents of children with cancer"
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You can look at our paper and see if it gives you some ideas:
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I am involving in research which aims to examine the level of knowledge of care givers of immobilized patients regarding the prevention of complications associated with immobility. While reviewing literature, it was found that most of the complications occur within 2-3 weeks of immobilization of patients for orthopedic interventions or other treatments which limits mobility. For this study, is it essential to include the caregivers whose patients are immobilized before 2-3 weeks or is it ok to include those whose patients are immobilized without considering duration of immobilization? Also, would you please suggest me to include the care givers of patients who are 20 years and older to make homogenous sample?
Your suggestion will be highly appreciated.
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Hello,
This might be of interest:
Caregivers' Knowledge and Practice Regarding Prevention of Immobilization Complications in El-demerdash Hospital Cairo Egypt
. . or this:
Poudyal, S., Neupane, M., & Lopchan, M. (2015). Knowledge on prevention of complications related to immobility among caregivers of orthopedic patients at selected hospitals of Chitwan district. Journal of Chitwan Medical College, 4(3), 9-12.
The ResearchGate link (but not full text) is:
Maybe you could ask the authors for their perspective on your question.
Very beat wishes,
Mary
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I conducted a study exploring cultural construction of Alzheimer’s Disease among Alaska Native caregivers and health care providers (Alaska Native and non-Native) using Kleinman’s Explanatory Model of Illness. I am looking for recommendations or examples on how to strucutre the findings for a manuscript? Do I outline findings using the 5 elements of the explanatory model and compare both populations?
Thank you,
Jordan
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Thank you so much. These articles are very helpful. I appreciate you sharing the information and links.
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Dear all,
I'm looking for french traductions of the following scales:
1) Big five - Rammstedt et al. (2007)
2) Self efficacy - Schwarzer et al.
3) Resilience - Campbell-Sills & Stein
Can somebody help me out?
Regards, Katherine
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Validation de l’échelle du sentiment d’auto-efficacité (GSE : General Self-Efficacy Scale) chez des étudiants universitaires français
It is here on RG by
  • Dalia SALEH
  • Lucia Romo
  • Nathalie CAMART
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Do you know whether it has been developed a version of the HEXACO Personality Inventory and/or of the Big Five Personality traits questionnaire suitable for analysing primary school-aged children's personality traits?
Other questionnaires investigating children's prosocial and antisocial tendencies are welcome, if you can advise any.
Obviously I am looking for observer report forms as the questionnaire(s) should be filled in by children's parents or caregivers.
Thank you very much!
Cheers,
Rhea
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Hi Rhea/Augusto,
Apparently there are more HEXACO versions for children ;-)! Maybe we should get together to share! I developed the HEXACO Simplified Personality Inventory (HEXACO-SPI), which is also suitable for children 11 years and older. It contains 96 items + 2 interstitial facets (Altruism and Proactivity = 104 items in total) and has been published in Dutch (in Gedrag & Organisatie), but an English version is available. The questionnaire has also been the basis of the Brief HEXACO Inventory (BHI), which has been published in JRP. If you’re interested, I can send you the English version.
Cheers,
Reinout
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Sitting on the edge of an bed , the older people must get up what is the aid they recieve ? An rolltor frame or stand there an chair/table on which an part of the body weight is transferring and an good balance is possible.
Now I am independent but otherwise it isn't finished with my independency !
And this is also in other places in home and nursing home. The extra space is for the caregiver but for the older it is become difficult to stand up independent.
How we change that ?
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Still that assisting furniture is mostly designed to make it easier to lift the patient. But my remark are pointing on the fact that the environment is so shaped that it is for patient difficult to hold thier independency.
The bed on the photo has the problem that the bed egde makes good footplacing difficult and that it hurts on the backside of the upper legs , standing up is than very difficult and the balance is very difficult. See the photo thier I have place an table that makes it possible for this patient to get on her own out this bed , still with pain but she had thier independency back , but the staff has the remarks that there was now to little room for them .
Greetings
jan
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My research thesis relates to 'Caregivers' intervention on readiness of preschoolers transitioning from kindergarten to primary school in the area of
1) Social-emotional readiness (learning to share, care and avoid aggression)
2) Cognitive readiness (critical thinking, literacy and numeracy)
3) School outcome (attitudes to learning, motivation, and persistence)
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I feel irrespective of the changes that have taken place in the family and social aspects of today compared to past situations the care givers should first be fully aware that the children at KG level are all innocent and full of inquisitiveness as their natural tendency hence the care giver has to be very careful in observing the natural likes and dislikes and bent of mind of the child rather than regimented teaching and schooling pattern.Listening to their innocent voices and responding appropriately their observation and respecting their innocent moves with compassion and care and diligently and meticulously draw their attention to normal behaviors which are rewarded and tend develop good attitudes and team work and tolerance.once the child becomes receptive and is attracted to such moderasions only then they should be exposed to rhythmic involved discipline focused learning schedules.
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Hi,
I am doing a research on caregivers of children, who are only 100 in number. May I please get assistance on a formula for calculating the sample size?
Thanks.
Lucy.
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it depends on your study design. If it is a cross sectional study literature review you can make and get estimates of proportion(prevalence) or means fixing an error estimate (5-20)% with minimum level of 95% confidece you can get a sample size around 100. You can use Medline calculaters or even free softwares like Openepi you can calculate .
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Hi dear friends
Who is informant informal caregiver for dementia or Alzheimer patient?
What criteria should be used to identify a informant informal caregiver?
How long should someone take care of an Alzheimer patent until we know him informant informal caregiver?
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immediate family member
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Recommendations on tools to assess quality of life of caregivers of children with a disability required, with a particular interest in low resource settings.
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Hello Tracey,
This paper describes the use of the instrument suggested above, along with BREF COPE re coping strategies:
Ganjiwale, D., Ganjiwale, J., Sharma, B., & Mishra, B. (2016). Quality of life and coping strategies of caregivers of children with physical and mental disabilities. Journal of family medicine and primary care, 5(2), 343.
Whoqol Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological medicine, 28(3), 551-558.
Carver, C. S. (1997). You want to measure coping but your protocol’too long: Consider the brief cope. International journal of behavioral medicine, 4(1), 92-100.
Very best wishes,
Mary
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Does 10/66 dementia research group have studies in Egypt? And what are the experiences in supporting dementia caregivers in Egypt?
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Thank you so much.
The focus is on studying models to replicate in Egypt. I found two Egypt studies (one of which is the one you sent) only. The other Price study looks very relevant too.
Many thanks
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Communication between caregiver and pearson who have Alzheimer  
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Thank you very mucy. Your article will help my lesson note.
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Dear friends and supporters,
I am urgently looking for participants for a small study among refugees during and after the asylum-cases. These are questionnaires as a "warm-up" for a larger survey. So far I have them in English and Arabic. Topic: spirituality and quality of life.
I thank you for support.
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This is the Link in English for online survey.
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Dear fellow researchers,
I am doing a qualitative photo-elicitation study with participants (maybe with approximately 10 young people aged 15 to 25) with experiences of domestic violence and abuse from parents and/or other caregivers? Keywords are: sources of meaning in life, existential framework, participant produced photographs, domestic violence and abuse. Have any of you experienced journals interested in qualitative articles doing narrative analysis with this scope?
Thank you so much for your answers!
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Thank you so much for your answers! I will be looking more closely and see what might be useful. I really appreciate that you took the time to answer!
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It appears that most caregivers for chronic disabling conditions need similar support - education, medical, rehabilitation [may vary by condition], financial, community integration>
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Любое долгое хроническое тяжелое заболевание пациента создает вокруг ауру, куда попадают как родственники, так и сиделки. Проще справляться и понимать, что происходит, если обладаешь не только знаниями о заболевании, но и психологической поддержкой. По-моему, идея замечательная!!! Только, наверно, нужно учитывать психологическую дистанцию между пациентом и ухаживающим, и смотреть, что на нее влияет, как сделать ее комфортной и не приводящей к выгоранию.
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Laughter therapy is currently recommended for dementia/Alzheimer caregivers does anyone have recent reviews on Laughter therapy for AD caregivers?
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Hi Chimezie,
Apologies for my delay in responding. I have uploaded the full text versions of the articles from our study. You should be able to access them from my profile page. If you have any difficulty viewing them, please let me know and I will send the PDFs to you directly. The Chenoweth et al 2014 article may be the most relevant to your question and then perhaps the Low 2014 article. Dr. Pia Kontos (ResearchGate) has also done work in this area.
If I may suggest, The Arts Health Institute website may be of interest: https://www.artshealthinstitute.org.au/ . I'm certain that their CEO Dr. Maggie Haertsch would be happy to communicate with you regarding their programs and experience.
All the best to you in your research.
Kind regards,
Anne-Nicole