From the NAPWHA Facebook page:
June 5th is HIV Long Term Survivors Day and we commemorate and celebrate the lives, bravery and advocacy of those who paved the way for every facet of the HIV response.
“To all long term survivors out there today we are acknowledging the major ups and downs you have been through on your journey to stay alive, and with as much quality of life as possible. You are respected within the HIV community and beyond for the challenges you have faced, including the grief and loss that has been so much a part of our lives in the past. Stay strong and support each other. We are each other’s heroes.” – David Menadue
The Forgotten Generation?
Modern advancements such as U=U have redefined what it means to live with HIV. But, as Ross Duffin reports, for the long-term survivors the lived reality is not so rosy. Read More:
Survey Background – The Australian Government is holding a Royal Commission into Aged Care Quality and Safety. The Royal Commission will provide Australian people living with HIV (PLHIV), their partners, carers, family and friends, HIV service providers and Aged Care services with a rare opportunity to make clear to the Australian Government, the current and future Aged Care service needs of PLHIV in all Australian states and territories.
To advance this objective, Positive Life NSW and NAPWHA will write a submission to the Royal Commission. The submission will closely align with the Royal Commission’s Terms of Reference and provide qualitative and quantitative data on the following:
– Whether Aged Care services meet the needs of Australian PLHIV (current and future) and whether the quality of services is acceptable, or needs to be improved?
– Whether there are PLHIV who need Aged Care services, but are ineligible (system gaps, for example, PLHIV under age 65 years)?
– If there is evidence of mistreatment, abuse or discrimination of PLHIV in the Aged Care service system and how the abuse, mistreatment or discrimination manifests?
– How services would best be provided to PLHIV with neurocognitive disorders? and;
– Preference about where PLHIV would like to receive Aged Care services (at home, in a residential Aged Care facility, in another type of facility/model of care) and why?
To provide PLHIV and others associated with the care of PLHIV with an opportunity to provide this advice, Positive Life has developed an anonymous online survey. The survey will target: PLHIV; the partners, carers, friends and family members of PLHIV; HIV service providers, and; Aged Care service providers. The survey has been peer-reviewed by individuals from each of the four target groups.
The issue of PLHIV and ageing has been discussed within the HIV sector for at least the last decade. Although there has been published international literature on the issue of HIV and ageing in European and American studies, the Royal Commission will be most interested in Australian research that clearly articulates the current and projected needs for Aged Care service over the next 10 to 20-years. Data from this survey will play an important role in providing this information.
Survey Distribution – To achieve feedback from all jurisdictions, we’re asking for your support to distribute the survey link to:
– PLHIV and their partners, carers, and family members in your jurisdiction
– HIV services providers (particularly clinicians, allied health and NGO HIV support workers etc.). You will know which service providers in your jurisdiction would be best qualified and more likely to provide information
– Paper copies of the survey will also be available (upon request from Positive Life NSW)
Below is the link to the online survey for distribution. The link can be copied into an internet browser to access the survey.Read more
|Farron Research is proud to announce the launch of its Disability Market Research Panel which will provide companies with the means to understand the requirements/needs that people with disabilities have in terms of products and services within the Australian Market. |
To date, access to these panels has been restrictive and Farron Research is looking to open the barriers so companies can perform more research using our disability panel and therefore developing products that identify with this market.
Farron is looking for companies that are in the disability arena to ask their members with a disability to register on our panel so they can participate in paid market research. All respondents that are selected to participate in research sessions will be paid a gratuity/incentive for their time and effort and this varies between $80-$150 for 60/90 minutes of their time.
Farron Research strictly adheres to the Australian Privacy Principles and all information provided to Farron will not be passed onto any third parties/researchers without the prior permission of the participants. Farron will also never sell any service or product to its panel members as Farron is bound by the Australian Market and Social Research Society Code of Professional behaviour. Farron is purely trying to meet the needs of large corporations that want to hear from people with a disability to get their opinion on their products and services. One of the biggest areas where we need this help is with usability testing with Websites and apps.
Farron also tries to carry the research out at a location that is convenient to the members on this Disability panel as we understand transport may be an issue.
For more information on Farron Research, please go to www.farronresearch.net.au and you can register at: https://farronresearchrecruitment.com.au/ResearchMe/Respondent/CreateDisabilityRego?ref=NDIS
The following profile was featured in the Newcastle Herald on April 1st, 2019:
Catherine Conaghan says she will “be carried out in a stretcher” before she leaves her job.
The Holmesville resident has served as Karumah Positive Living Centre’s case manager for seven years.
“I love my work,” the social worker said. “I think I’ve done all my growing in the last seven years.”
Karumah provides support to around 80 Hunter residents who live with HIV. This year, the service is celebrating its 30th birthday.
“Some people will isolate themselves,” she said. “They feel like they don’t deserve to be part of the community. So we try working with them to engage socially and become more confident.
“There can be mental health issues triggered, some have PTSD symptoms, or other mental health issues.
“For most we’re in contact with, it’s a question of: you’re never going to recover from HIV nor likely recover from mental health issues, but what is your own perception of what that could be like?”
“Basically, I will go and meet people in their homes or a venue that suits them and talk about barriers to accessing what would generally be considered normal life choices. In collaboration, we’ll establish what steps to undertake to get rid of some of those barriers,”
She said that while treatment for HIV had greatly improved and meant most people could live “a very normal life”, a positive HIV diagnosis still carries social and psychological implications.
She said a “really important” message about living with HIV was that “undetectable means untransmittable” or “U equals U”.
With early and ongoing treatment the advancement of HIV can be stopped, Ms Conaghan explained, and the virus reduced to an undetectable level in the blood. When the virus is suppressed to an undetectable level patients can be confident they will not pass the disease on to anybody else.
Ms Conaghan said her clients were mostly over the age of 40, but otherwise “very, very diverse”.
“There’s people of all backgrounds and genders and sexualities, quite a number of culturally and linguistically diverse people, people with families and people who are single,” she said.
A common factor is the stigma they experience.
“The biggest thing is that there is a human face behind the label,” Ms Conaghan said.
“It is still considered by lots of people as the worst thing that could happen to them,”
“People don’t get tested because they don’t want to live with the reality, whereas the reality is completely different to what they think. You have a good chance of having a very normal life. It won’t stop you from having a family.”
Written by Pheobe Molony
See the full article here:
The Men’s Health Education Rural Van is back on the road with a jam-packed 2019 tour, offering FREE Men’s Health checks.
A custom built caravan with a dedicated Registered Nurse travels the state of New South Wales offering free health screenings to regional and rural men, who are notorious for being completely in the dark about the state of their health.
The dates for the next 2 months are:
Tue 26-Wed 27 Muswellbrook
Fri 1- Sun 3 Mudgee
Tue 5-Wed 6 Scone
Thus 7 Murrurundi
Sat 8-Sun 9 Barraba
Tue 12-Wed 13 Manilla
Fri 15-Sat 16 Quirindi
Mon 18 Boggabri
Tue 19-Wed 20 Narrabri/Wee Waa
Fri 22-Sat 23 Walcha
Tue 26-Wed 27 Glen Innes
Fri 29 Sat 30 Warialda
For more information go to www.mherv.com.au or phoneRead more
Karumah is celebrating our 30th birthday this year and we have so many exciting things in the works to commemorate an incredible ongoing journey. The kind and generous folk at Fresh Promotions are helping us celebrate by donating these very special Karumah-branded keyrings for us to giveaway over the course of the year.
These aren’t any ordinary keyrings! They are specially designed to hold tablets and pills to help you store medications on the run. They have an airtight seal to keep the contents safe and drive and are discreet and portable.
If you would like one, either come along to a Karumah event this year or contact Peer Support Officer Aly at email@example.com and she will make sure one gets to you.
Thank you again Fresh Promotions for supporting Karumah!
A recent Kirby Institute report about the dramatic difference between Indigenous and non-Indigenous HIV rates, attributed a 41% increase in 5 year to a lack of education about new preventative measures. You can read more here:
“Although we have come a long way in the past thirty years, with improvements to medications and knowing that treatment as prevention works, being diagnosed with HIV is still a significant event for an individual,” says Mr Brent Clifton, who is coordinating the study. “By engaging with the experiences of people who have recently been diagnosed with HIV, we’re hoping to find out why some people living with HIV today experience better care and wellbeing outcomes than others, and ultimately uncover the data that will allow us to fill these gaps.”
You can read more about the study here: https://kirby.unsw.edu.au/news/new-study-seeks-understand-contemporary-experiences-living-hiv-australiaRead more
“According to the Australian Journal of Advanced Nursing, 61% of people living with HIV are concerned about future placement in an aged care facility.”
Read the full Guardian article here: https://www.theguardian.com/commentisfree/2018/nov/30/a-generation-of-people-with-hivaids-enter-nursing-homes-still-afraid-of-prejudiceRead more
“Our research shows that the neurological impact of HIV goes beyond pure biology,” says Dr. Lesley Fellows, a researcher at The Neuro and the study’s senior author. “The psychological and social environment in which the patient lives also plays a role. This study underscores the need for interventions that reduce social stigma and support resilience against its toxic effects on brain health.”Read more