What are the best ways to advocate for patients with kidney disease?

I want to reply as a caregiver with a parent that has been on dialysis for a number of years. Certainty, explaining treatment options and lifestyle changes are important and necessary. I'm grateful to the professionals that continue this life sustaining treatment, and especially those that remember the struggle and discomfort their patient endures. Listening to patients about change in status, even when stats haven't moved that much or strong symptoms manifest. A lot of problems can be mediated or avoided. Maintain good interdiciplinary communication. I would also urge the research to implementation stages of new treatments be streamlined. There's a lot of possible applications that always seem to be just around the corner.

Inform patients about all available treatment options, including dialysis types, kidney transplant, and conservative management, enabling informed decisions.

Encourage and support necessary lifestyle changes such as diet modifications, exercise, and quitting smoking to improve kidney health.

Advocating for patients with kidney disease involves several strategies: Education: Raise awareness about kidney disease and its impact on patients' lives.

It’s time that the patient is explained all the available option for him to get treated and explained clearly the risk benefit ratio in each option . Newer options like #lieswt #eHAT could be considered if the patient is a candidate

Coordinate comprehensive care among healthcare professionals. Educate patients on treatment options and rights. Facilitate access to resources and support networks. Lobby for policy changes and funding. Promote awareness and early detection initiatives.

Advocating for patients who suffer from kidney disease involves several strategies in ensuring they receive comprehensive information about their condition and treatment options. It is imperative we empower patients to research information about their condition and support them in patient-doctor collaboration. Joining patient advocacy groups creates a support system for those who may not personally have one and even for folks who do, this creates a space for them to feel connected with people who not only relate, but understand what this journey is. Raising awareness can also create paths to legislation support that can improve access to healthcare.

Support Group: Connect patients with support groups where they can share experiences and receive emotional support. Legislation: Advocate for policies that improve access to treatment, medication, and healthcare services for kidney disease patients. Research Funding: Support initiatives that fund research into better treatments and a cure for kidney disease. Community Outreach: Engage with the community to provide information about prevention, early detection, and management of kidney disease. Empowerment: Empower patients to take an active role in their care and decision-making processes. Awareness Campaigns: Organize campaigns to promote kidney health, encourage organ donation, and reduce stigma associated with kidney disease.

Kidney care has been holistic and hence need to have in place things like patient education , core group , resource sharing etc ., basically one has to empower the patient to take right informed decisions .

In my experience, I had a lot of trouble navigating care and treatment for my kidney disease being a Type 1 Diabetic. My endocrinologist couldn’t assist me with the issues I had with my T1D stemming from kidney disease and vice versa. This was very frustrating! Another issue I had was getting information outside of my medical team. I wasn’t given any information for support groups, peer support, etc. The gaps in service and lack of information from those with lived-experience made my pre-kidney transplant life scary, stressful and uncertain.

Provide comprehensive information about kidney disease, treatment options, and lifestyle changes to help patients make informed decisions.

I think they should be empowered to lead the coordination of service meeting to allow it to be specific to their needs, and a learning opportunity of services and roles. This will give them experience advocating for their needs and provider accountability.

One aspect that many patients may overlook in terms of health literacy when it comes to maintaining kidney function is the importance of hydration. Proper hydration is crucial for kidney health as it helps to flush out toxins and waste products from the body, maintain electrolyte balance, and support overall kidney function. Knowing how much fluid intake is appropriate for their condition is key. This lack of awareness can lead to dehydration or overhydration, both of which can have negative effects on kidney function. Therefore, educating patients about the importance of proper hydration and providing guidance on fluid intake tailored to their individual needs can be essential for promoting kidney health.

The best way to advocate for a patient with kidney disease is to ensure they receive comprehensive information about their condition and treatment options. Encourage open communication between the patient and healthcare providers. Support the patient in making informed decisions about their care and help them navigate the healthcare system. Additionally, assist them in accessing resources and support groups for emotional and practical support. Advocacy also involves promoting the patient’s rights and ensuring they receive respectful and equitable care.

Encourage participation in support groups where patients can share experiences, coping strategies, and receive emotional support from peers.

Every "near death experience" NDE patient I have worked with has shared that the "next chapter" or heaven was very peaceful. I would encourage patients to read and learn from NDE patients to ease the transition that all humans must face.

Involve the family members to take part in helping the patient with Kidney disease . If the patient has no strong guardian around , arrangements should be made to have any distant relationships who can come and visit him regularly like a frequency of three times in a week

Managing rigor and flexibility when analyzing qualitative data involves maintaining a structured approach while also remaining open to unexpected findings. Here are some strategies: Establish clear research questions: Define specific research questions to guide your analysis and ensure focus.Use a systematic approach: Follow established qualitative research methodologies, such as thematic analysis or grounded theory, to maintain rigor in your analysis process.

Always be trauma informed and support autonomy. Listening and respecting the client’s decisions is an empowering and humane approach. We all have our own “map” or unique experiences that shape our choices.

As with all terminal diseases, the key note here is to provide every patient with the care they deserve, regardless their custom and cultures, religion or creed, colour of their skin and above all, treat them and their families with the utmost respect. Be transparent with your communication and if you are not sure your answers, refer them to the expert e.g. an Endocrinologist for Renal Disease or Diabetes mellitus. Listen and allow the patients and their families to communicate their fears, anxieties or any emotional issues they might have. It is vital to include family and friends in the patient's Care Plan for they know their relatives best.

Advocating for change for patients with kidney disease requires a multifaceted approach. Firstly, raising awareness through social media campaigns, community events, and educational resources can amplify their voices. Secondly, advocating for policy reforms that prioritize access to affordable healthcare, including dialysis and transplant services, is crucial. Additionally, supporting organizations dedicated to kidney disease research and patient support can drive impactful change. Lastly, fostering collaboration between patients, healthcare providers, policymakers, and advocacy groups ensures a unified effort toward improving care and outcomes for all individuals affected by kidney disease.

Patients with chronic illness like kidney disease benefit from having a support system that they know they can tryst and turn to without judgement. People either in person or virtual where the patient can feel safe to express their fears, anger, grief about what they lost due to the illness and past life, but also their victories whether great or small. It also helps to talk to others that have gone through similar experiences, to pick up new coping strategies

Encourage patients to participate in a community with others who have kidney disease. Patients need resources to feel empowered and learn to live with the challenges of kidney disease. When I worked with patients with kidney disease, I recommended the National Kidney Foundation. Facebook has virtual support groups. Local groups may meet weekly or monthly to allow patients with kidney disease to ask questions, find out about resources, and fellowship. People with kidney disease need a support network to make the path smoother.

An example I have seen it is to explore what is the patient plan and the stage of the kidney disease. I work with peritoneal dialysis clients and its complexity could result to mental stress and constant side effects that affects other health wellbeing of the patient. Questionnaires and feedback directly from the patient will be of help depending on her capacity to express or Cognitive function. My experience as a carer to this kind of patients is huge in psychosocial support. And big on choices and control

People with kidney failure On dialysis. Loose some cognition. Case manger should put a base line, look for deterioration. Respect there mental limitation. Make sure they are not subject of abuse or negligence. Report care takers, if this is the case. Do document their belongings in a safe place. Connect them with a lawyer. So no one makes them sign lea-gal documents

Kidney disease is a global issue that affects millions of people and causing a big impact on someone’s daily routine. It requires constant management. It's important to support patients by raising awareness, ensuring they have access to quality care, and supporting research for better treatments. By learning more about kidney disease, spreading awareness, and advocating for fair access to healthcare, we can help improve their quality of life, health outcomes, and overall well-being.