Showing posts with label caregiver support. Show all posts
Showing posts with label caregiver support. Show all posts
Saturday, June 29, 2019
Informal caregivers in stroke: Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study
Friday, February 23, 2018
Stroke survivors and carers feel marginalized due to lack of support from primary care
This is so easy to explain, stroke professionals provide NO concrete ways to recover, NO protocols, NOTHING but guidelines.
Stroke survivors and carers feel marginalized due to lack of support from primary care
A systematic review of studies focused on stroke survivors' and
carers' experiences of primary care and community healthcare services
has found that they feel abandoned because they have become marginalized
by services and do not have the knowledge or skills to re-engage.
The study, by researchers at the University of Cambridge, suggests that primary care and community healthcare interventions which focus on improving active follow-up and information provision to patients and caregivers, especially in the first year after stroke, could help improve patient self-management and increase stroke-specific health literacy.
Globally, stroke is the second leading cause of death. Stroke-related disability burden is on the rise with a 12% increase worldwide since 1990, and contributes to the large economic burden of stroke due to healthcare use, informal care and the loss of productivity. The annual cost of stroke, including health care cost, medicines and missed days of work, is estimated at $33 billion in the USA and £8.9 billion in the UK.
Primary care could play an important role in the care of stroke survivors and their caregivers, supporting access to community services and facilitating transfer back to specialist services when new problems emerge. It could also help provide training, and identify and address health needs of caregivers. However, the feeling of abandonment that people with stroke experience following hospital discharge suggests this role is not being fulfilled.
To better understand the possible reasons behind this feeling of abandonment, a team at Cambridge's Department of Public Health and Primary Care carried out a systematic review of qualitative evidence in the field. In total, they analyzed 51 studies (encompassing 566 stroke survivors and 593 caregivers). Their results are published today in the journal PLOS ONE.
The analysis found an unaddressed need for continued support in a quarter of studies. Survivors and caregivers felt frustrated and dissatisfied with a lack of proactive follow-up either from primary care, the hospital, or allied healthcare professionals. This led to feelings of dissatisfaction, uncertainty, that a stroke survivor was "forgotten and written off" and that their general practice did not care about them.
Lack of support for caregivers was reported in more than one in five studies (22%), even though they felt healthcare professionals assumed that they would provide the majority of care needed. They felt ill prepared and pressured to "become experts" in caring for stroke survivors. In addition, both survivors and caregivers felt emotional support was lacking, even though they are at risk of anxiety and depression.
Long waiting times for assessment and rehabilitation and little or no help from social services left survivors feeling "left in the lurch". Caregivers felt that access to rehabilitation was not provided early enough, causing survivors to "go backwards".
More than two out of five (41%) of studies highlighted gaps in information provision. Opportunities for support could be missed due to the lack of knowledge of what services were available. The lack of information about local services and how to find them was confusing and prevented access. Many caregivers and survivors had to find out information by themselves from the internet, friends and other caregivers. When information was provided, it was often inconsistent and covered only some services.
A quarter (23%) of the studies highlighted inadequate information on stroke, its consequences, and recovery. Information presented too early after stroke disempowered stroke survivors and caregivers, leading to feelings of confusion, fear and powerlessness. Survivors and caregivers wanted specific information on the significance of post-stroke symptoms and how to manage them. Lack of information led to unrealistic expectations of "getting back to normal", leading to disappointment and tensions between the survivor and caregiver.
Ineffective communication between survivors, caregivers and healthcare services as well as within healthcare services resulted in feelings of frustration and having "to battle the system". Gaps in the transfer of knowledge within the healthcare system and the use of medical jargon sometimes caused confusion and were construed as indifference to survivors' needs.
"Patients and caregivers would benefit from active follow up and information provision about stroke that is tailored to their specific needs, which change over time," says Professor Jonathan Mant, who led the study. "People take active efforts to find information for themselves, but navigating and appraising it can be challenging. What is needed is trustworthy information written in an accessible language and format, which could support better self-management."
The study found that that many stroke survivors and caregivers felt marginalized due to the misalignment between how healthcare access in primary care is organized and survivors' and caregivers' competencies. For example, individuals felt that in order to access services they needed an awareness of what services are available, plus the ability to communicate effectively with healthcare professionals. This situation can be compounded by cognitive, speech and language problems that can further affect a patient's ability to negotiate healthcare access.
"Stroke survivors and their caregivers can feel abandoned because they struggle to access the appropriate health services, leading to marginalization," says Dr Lisa Lim, one of the study authors. "This arises because of a number of factors, including lack of continuity of care, limited and delayed access to community services, and inadequate information about stroke, recovery and healthcare services.
"We need mechanisms to encourage better communication and collaboration between generalist services, which tend to provide the longer term care after stroke, and specialist services, which provide the care in the immediate phase post-stroke."
The researchers argue that providing support from healthcare professionals within the first year after stroke would increase patients' ability to self-manage their chronic condition. This can be achieved by providing timely and targeted information about stroke, available resources, and by regular follow-ups to foster supporting long-term relationships with healthcare professionals.(This is a useless suggestion, it assumes managing your stroke disabilities rather than curing them)
"Giving the right information at the right time will help stroke survivors and their caregivers become more self-reliant over time and better able to self-manage living with stroke," adds Dr Lim.
The team identified two key areas of improvement to address patients' and caregivers' marginalization: increasing stroke-specific health literacy by targeted and timely information provision, and improving continuity of care and providing better access to community healthcare services.
The study, by researchers at the University of Cambridge, suggests that primary care and community healthcare interventions which focus on improving active follow-up and information provision to patients and caregivers, especially in the first year after stroke, could help improve patient self-management and increase stroke-specific health literacy.
Globally, stroke is the second leading cause of death. Stroke-related disability burden is on the rise with a 12% increase worldwide since 1990, and contributes to the large economic burden of stroke due to healthcare use, informal care and the loss of productivity. The annual cost of stroke, including health care cost, medicines and missed days of work, is estimated at $33 billion in the USA and £8.9 billion in the UK.
Primary care could play an important role in the care of stroke survivors and their caregivers, supporting access to community services and facilitating transfer back to specialist services when new problems emerge. It could also help provide training, and identify and address health needs of caregivers. However, the feeling of abandonment that people with stroke experience following hospital discharge suggests this role is not being fulfilled.
To better understand the possible reasons behind this feeling of abandonment, a team at Cambridge's Department of Public Health and Primary Care carried out a systematic review of qualitative evidence in the field. In total, they analyzed 51 studies (encompassing 566 stroke survivors and 593 caregivers). Their results are published today in the journal PLOS ONE.
The analysis found an unaddressed need for continued support in a quarter of studies. Survivors and caregivers felt frustrated and dissatisfied with a lack of proactive follow-up either from primary care, the hospital, or allied healthcare professionals. This led to feelings of dissatisfaction, uncertainty, that a stroke survivor was "forgotten and written off" and that their general practice did not care about them.
Lack of support for caregivers was reported in more than one in five studies (22%), even though they felt healthcare professionals assumed that they would provide the majority of care needed. They felt ill prepared and pressured to "become experts" in caring for stroke survivors. In addition, both survivors and caregivers felt emotional support was lacking, even though they are at risk of anxiety and depression.
Long waiting times for assessment and rehabilitation and little or no help from social services left survivors feeling "left in the lurch". Caregivers felt that access to rehabilitation was not provided early enough, causing survivors to "go backwards".
More than two out of five (41%) of studies highlighted gaps in information provision. Opportunities for support could be missed due to the lack of knowledge of what services were available. The lack of information about local services and how to find them was confusing and prevented access. Many caregivers and survivors had to find out information by themselves from the internet, friends and other caregivers. When information was provided, it was often inconsistent and covered only some services.
A quarter (23%) of the studies highlighted inadequate information on stroke, its consequences, and recovery. Information presented too early after stroke disempowered stroke survivors and caregivers, leading to feelings of confusion, fear and powerlessness. Survivors and caregivers wanted specific information on the significance of post-stroke symptoms and how to manage them. Lack of information led to unrealistic expectations of "getting back to normal", leading to disappointment and tensions between the survivor and caregiver.
Ineffective communication between survivors, caregivers and healthcare services as well as within healthcare services resulted in feelings of frustration and having "to battle the system". Gaps in the transfer of knowledge within the healthcare system and the use of medical jargon sometimes caused confusion and were construed as indifference to survivors' needs.
"Patients and caregivers would benefit from active follow up and information provision about stroke that is tailored to their specific needs, which change over time," says Professor Jonathan Mant, who led the study. "People take active efforts to find information for themselves, but navigating and appraising it can be challenging. What is needed is trustworthy information written in an accessible language and format, which could support better self-management."
The study found that that many stroke survivors and caregivers felt marginalized due to the misalignment between how healthcare access in primary care is organized and survivors' and caregivers' competencies. For example, individuals felt that in order to access services they needed an awareness of what services are available, plus the ability to communicate effectively with healthcare professionals. This situation can be compounded by cognitive, speech and language problems that can further affect a patient's ability to negotiate healthcare access.
"Stroke survivors and their caregivers can feel abandoned because they struggle to access the appropriate health services, leading to marginalization," says Dr Lisa Lim, one of the study authors. "This arises because of a number of factors, including lack of continuity of care, limited and delayed access to community services, and inadequate information about stroke, recovery and healthcare services.
"We need mechanisms to encourage better communication and collaboration between generalist services, which tend to provide the longer term care after stroke, and specialist services, which provide the care in the immediate phase post-stroke."
The researchers argue that providing support from healthcare professionals within the first year after stroke would increase patients' ability to self-manage their chronic condition. This can be achieved by providing timely and targeted information about stroke, available resources, and by regular follow-ups to foster supporting long-term relationships with healthcare professionals.(This is a useless suggestion, it assumes managing your stroke disabilities rather than curing them)
"Giving the right information at the right time will help stroke survivors and their caregivers become more self-reliant over time and better able to self-manage living with stroke," adds Dr Lim.
The team identified two key areas of improvement to address patients' and caregivers' marginalization: increasing stroke-specific health literacy by targeted and timely information provision, and improving continuity of care and providing better access to community healthcare services.
Tuesday, October 10, 2017
Stroke at 30-Something: You Can Come Back The Right Attitude, Therapy and Caregiver Support is Vital to Successful Rehabilitation
Notice that nowhere in here do they refer to the doctor doing one damn thing. Except that the doctor team almost killed her with the nocebo comment of 5% chance of living
http://www.stroke.org/stroke-30-something-you-can-come-back
http://www.stroke.org/stroke-30-something-you-can-come-back
The Right Attitude, Therapy and Caregiver Support
is Vital to Successful Rehabilitation
Stroke survivor Jessica “Jess” McNair can joke about it now—one of the reasons, in fact, she is convinced that it’s her sense of humor that helped her recover from a series of strokes this year. At 32 years old, Jessica experienced what doctors described as “cascades of multiple strokes” resulting from irregularly formed arteries in her neck. The event left the San Rafael, Calif., resident unable to walk, talk or care for herself. The prognosis was bleak and Jess’ team of doctors predicted she had a five percent chance of living. Her road to recovery started with a grueling schedule of occupational, speech, and physical therapy.
“I had overwhelming amounts of denial from the very beginning,” said Jess describing her first reaction to the news given to her at the hospital. Although Jess was preparing to move to London and bartending to save money, she doesn’t see herself as a victim: “I consider myself strangely pessimistic in an optimistic way.”
This is where Jess’ older sister Kate comes in.
The Caregiver’s Life is Changed
No individual or family is ever prepared to fulfill the role of a full-time caregiver. Looking back, Kate recalls that both her and Jess were overwhelmed with emotion. “We were both crying, but immediately started joking,” says Kate who feels that maintaining a good sense of humor is a necessary coping skill for everyone – but especially for stroke survivors. “When I walked into the hospital I told her that there are other ways to get a day off - you don’t have to have a stroke!”
A
fulltime sales professional, wife, and expectant mother at the time,
Kate knew early on that she had to deal with the situation personally.
The then 34 year-old recalls the vagueness of the doctors and nurses in
answering her questions, which emphasized how important it was for her
to take control of the situation. Shouldering the responsibility of work
and the physical demands of pregnancy, Kate now had the added role of
primary caregiver to her younger sister.
Thankfully, Kate was able to rely on her husband and friends who helped deal with insurance companies, meal preparation, and physical therapy.
“There was a lot of planning. We had to plan how to watch her. It was pretty scary and the frustrations were there,” Kate remembers.
When it came to working as a team, Kate recalls Jess’ determination, “She was really determined. We would make a diary and everyday have these little goals.” This helped support the efforts of her rehab.
A Great Rehab Team
For stroke survivors, rehabilitation options depend on the severity of their stroke, their level of disability, and the intensity of rehabilitation exercises they are able to endure.(The doctor does nothing) The goal of rehabilitation is to improve the survivor’s function so that they can regain independence and live life without relying on a caregiver.
Upon suffering a stroke and calling the ambulance herself, Jess was admitted to the Intensive Care Unit at Marin General Hospital where she had two more big strokes. She was then accepted to the rehabilitation program at California Pacific Medical Center (CPMC)—Davies Campus while she still had a tracheotomy. At the time, Jess couldn’t speak or make a noise. Through their sisterly-bond, Kate was the only person who could read her lips and understand her. “I guess you could refer to me as a vegetable at that point—I was not moving at all,” Jess points out. This marked the beginning of her three-month stay at CPMC’s inpatient rehabilitation facility, before being transferred to their outpatient program.
“I
had three amazing people working with me—I call them my heroes,”
referring to her occupational, physical, and speech therapists with whom
she remains friends to this day. During her recovery, the skilled
professionals got her standing up and walking again with assistive
technology such as the EksoGT™, a wearable exoskeleton that helped train
her body to walk with a proper gait, and an electronic stimulation
machine that enabled her to relearn vocalization. With these devices,
both Jess and Kate noticed improvement, providing Jess the much needed
confidence and motivation to continue her therapy.
A Time for Independence
Jess is still in recovery and has been able to regain some of her independence with the help of Kate and her army of “heroes.” The sisters, who will be separated in the upcoming months due to Kate relocating to Minneapolis, feel that this experience has brought them closer and made their relationship stronger.
“Before, we were close - we saw each other on an everyday basis, but now our bond has been reinforced. Silly arguments don’t seem to matter anymore,” mentions Jess.“I love her—she’s one of my most favorite people on earth. I feel like I’m abandoning her, so I’m going to miss her a lot, but I am confident in her progression,” Kate adds.
Jess is maintaining her positive attitude and currently focusing on regaining enough independence to be able to make the move to London.
To encourage others on their own personal comeback journeys, Jess and Kate recently participated in a podcast. The podcast is available through Connected Social Media, Ekso Bionics and iTunes.
To learn more about the advanced exoskeleton technology Jess used during rehab, visit Ekso Bionics.
is Vital to Successful Rehabilitation
Stroke survivor Jessica “Jess” McNair can joke about it now—one of the reasons, in fact, she is convinced that it’s her sense of humor that helped her recover from a series of strokes this year. At 32 years old, Jessica experienced what doctors described as “cascades of multiple strokes” resulting from irregularly formed arteries in her neck. The event left the San Rafael, Calif., resident unable to walk, talk or care for herself. The prognosis was bleak and Jess’ team of doctors predicted she had a five percent chance of living. Her road to recovery started with a grueling schedule of occupational, speech, and physical therapy.
“I had overwhelming amounts of denial from the very beginning,” said Jess describing her first reaction to the news given to her at the hospital. Although Jess was preparing to move to London and bartending to save money, she doesn’t see herself as a victim: “I consider myself strangely pessimistic in an optimistic way.”
This is where Jess’ older sister Kate comes in.
The Caregiver’s Life is Changed
No individual or family is ever prepared to fulfill the role of a full-time caregiver. Looking back, Kate recalls that both her and Jess were overwhelmed with emotion. “We were both crying, but immediately started joking,” says Kate who feels that maintaining a good sense of humor is a necessary coping skill for everyone – but especially for stroke survivors. “When I walked into the hospital I told her that there are other ways to get a day off - you don’t have to have a stroke!”
A
fulltime sales professional, wife, and expectant mother at the time,
Kate knew early on that she had to deal with the situation personally.
The then 34 year-old recalls the vagueness of the doctors and nurses in
answering her questions, which emphasized how important it was for her
to take control of the situation. Shouldering the responsibility of work
and the physical demands of pregnancy, Kate now had the added role of
primary caregiver to her younger sister.Thankfully, Kate was able to rely on her husband and friends who helped deal with insurance companies, meal preparation, and physical therapy.
“There was a lot of planning. We had to plan how to watch her. It was pretty scary and the frustrations were there,” Kate remembers.
When it came to working as a team, Kate recalls Jess’ determination, “She was really determined. We would make a diary and everyday have these little goals.” This helped support the efforts of her rehab.
A Great Rehab Team
For stroke survivors, rehabilitation options depend on the severity of their stroke, their level of disability, and the intensity of rehabilitation exercises they are able to endure.(The doctor does nothing) The goal of rehabilitation is to improve the survivor’s function so that they can regain independence and live life without relying on a caregiver.
Upon suffering a stroke and calling the ambulance herself, Jess was admitted to the Intensive Care Unit at Marin General Hospital where she had two more big strokes. She was then accepted to the rehabilitation program at California Pacific Medical Center (CPMC)—Davies Campus while she still had a tracheotomy. At the time, Jess couldn’t speak or make a noise. Through their sisterly-bond, Kate was the only person who could read her lips and understand her. “I guess you could refer to me as a vegetable at that point—I was not moving at all,” Jess points out. This marked the beginning of her three-month stay at CPMC’s inpatient rehabilitation facility, before being transferred to their outpatient program.
“I
had three amazing people working with me—I call them my heroes,”
referring to her occupational, physical, and speech therapists with whom
she remains friends to this day. During her recovery, the skilled
professionals got her standing up and walking again with assistive
technology such as the EksoGT™, a wearable exoskeleton that helped train
her body to walk with a proper gait, and an electronic stimulation
machine that enabled her to relearn vocalization. With these devices,
both Jess and Kate noticed improvement, providing Jess the much needed
confidence and motivation to continue her therapy.A Time for Independence
Jess is still in recovery and has been able to regain some of her independence with the help of Kate and her army of “heroes.” The sisters, who will be separated in the upcoming months due to Kate relocating to Minneapolis, feel that this experience has brought them closer and made their relationship stronger.
“Before, we were close - we saw each other on an everyday basis, but now our bond has been reinforced. Silly arguments don’t seem to matter anymore,” mentions Jess.“I love her—she’s one of my most favorite people on earth. I feel like I’m abandoning her, so I’m going to miss her a lot, but I am confident in her progression,” Kate adds.
Jess is maintaining her positive attitude and currently focusing on regaining enough independence to be able to make the move to London.
To encourage others on their own personal comeback journeys, Jess and Kate recently participated in a podcast. The podcast is available through Connected Social Media, Ekso Bionics and iTunes.
To learn more about the advanced exoskeleton technology Jess used during rehab, visit Ekso Bionics.
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