The impact of stroke on an individual and their families
The impact of stroke on an individual and their families: The importance of the Multi-disciplinary team (MDT) meeting in stroke units and the social work impact on the stroke survivor.
Draft Thesis submitted in connection with the Degree of Masters of………………
Table of Contents
For my dissertation I have decided to focus on the topic of Stroke. My first-year social work placement was in Peamount Hospital, Newcastle, Co Dublin. While placed there, I was primarily based in the age-related Rehabilitation Unit of the Hospital. My clients were all over 65 years of age and from the fourteen cases I was assigned, ten of my clients had suffered a stroke. I became extremely interested in stroke due to the different ways it affected my clients, both physically, emotionally and psychologically and decided that I would like to learn more which led me to decide to carry out my dissertation on stroke or also known by it. I found the interventions and support that was provided by the different health care professionals to be outstanding.
It was made evident from the beginning that a strong Multi-Disciplinary team which included social workers, was vital when working with stroke survivors and their rehabilitation goals. I learned a considerable amount about stroke and the effects it had not just on my clients but also their families. Unfortunately, many of my clients were delayed from being discharged from hospital due to the delays in receiving approved Home Care package hours organised by the Health Care Executive even though they had completed their stroke rehabilitation. Frequently, the required hours that were requested for some particular patients would, if approved, still place a significant dependence on family members to assist with the care of their loved ones. I found that the response of many health care professionals resulted in asking whether family members would take on the role of the care giver as their relative had completed their rehabilitation and were ‘bed blocking’. I found there to be very little psychological and social supports available for these family care givers and also for the stroke survivor themselves when they were discharged home from hospital.
1.2Some Key Terms
For the purpose of this dissertation some key terms will now be set out.
Stroke: The traditional definition of stroke is clinical and based on the sudden onset of loss of focal neurological function due to infarction or haemorrhage in the relevant part of the brain, retina, or spinal cord. Stroke is distinguished from transient ischaemic attack (TIA) if the symptoms persist longer than 24 hours (or lead to earlier death) (Hankey, 2017, p. 641).
Stroke rehabilitation: Stroke rehabilitation is a progressive, dynamic, goal orientated process aimed at enabling a person with impairment to reach their optimal, physical, cognitive, emotional, communicative, social, and functional activity level (Hankey, 2017, p.648).
PSD: Post stroke depression is considered the most frequent and important neuropsychiatric consequence of stroke. Approximately one-third of stroke survivors experience major depression. Moreover this condition can have an adverse effect on cognitive function, functional recovery and survival (Alajbegovic et al, 2014).
Social isolation: is defined as lacking social access to others, a perceived lack of social support from others, a persistent sense of one’s physical and social disconnection from others and the community, an inability to contribute to the family or the community in personally meaningful ways, and the inability to engage in physically intimate relations (Rittman et al, 2007).
Aphasia: Aphasia is a difficulty with language caused when areas of your brain that control language become damaged. Aphasia can affect the ability to talk or understand what is said, as well as the ability to read and write or spell, or understand spoken or written language. A person with aphasia may also have trouble with numbers or facial expression and gesture. Aphasia varies in type and severity. It does not affect your intelligence and can change over time (Irish Heart Foundation, 2013).
Informal carer: An informal carer includes any person, such as a family member, friend or neighbour, who is giving regular, ongoing assistance to another person without payment for the care given (Irish Heart foundation, 2013).
Home care package:
MDT: Multidisciplinary team meeting, where professionals from a number of disciplines (including physiotherapists, social workers, speech and language therapists etc) comprehensively assess individuals needs of a patient and develop a customised rehabilitation plan with set goals (Monaghan et al, 2004).
1.3Aims of the dissertation
The aims of my dissertation will be to investigate the impact of stroke on an individual from an emotional and psychological perspective and how these stroke survivors manage post stroke. This will not just be confined to the impact on the person who suffered from the stroke directly but also the impact it has on their family members, as family members are the ones who are most likely to become the stroke survivors informal care giver. How the informal care giver manages will also be examined. From my experience with working with stroke survivor’s, I could see the positive impact Social Workers and other health care professionals contribute when working alongside stroke patients and in this dissertation, I would like to explore in more detail how the social worker plays a part with stroke support.
The dissertation and its literature review are based on research question with three elements as follows as follows:
In considering the impact of stroke on survivors and their families
How can stroke impact on an individual psychologically and emotionally?
How can stroke impact not only on the survivor but their family member as the informal carer?
How can Social Workers impact on a stroke survivor’s life?1.4Background to the topic
What is a stroke?
A stroke occurs when a blood vessel, which is carrying oxygen and nutrients to the brain, bursts or is blocked by a clot. This causes an interruption of the blood supply to part of the brain. This can damage or destroy brain cells which will affect body functions. A stroke is a medical emergency. Therefore, recognising the symptoms and accessing treatment immediately can be crucial (Irish Heart Foundation, 2018).
Stroke Foundation (2018).
The term ‘stroke’ comes from the fact that it usually happens without warning, ‘striking’ the person from out of the blue. The effects of a stroke on the body are immediate. One in five people will have a stroke at some time in their life. Most are over 65, but stroke can strike at any age. Even young people and children can be affected (Irish Heart Foundation, 2018).
Cigarette smoking, excessive alcohol use, insulin resistance, and diabetes mellitus are also likely causal risk factors. Other risk factors that, if modified, could reduce the incidence of stroke include environmental air pollution, childhood health circumstances and fitness, high-risk diet and poor nutrition, physical inactivity, obesity, blood pressure variability, sleep-disordered breathing, chronic inflammation, chronic kidney disease, migraine, hormonal contraception or hormone replacement therapy, psychosocial stress, depression, job strain, and long working hours (Hankey, 2017).
How common is stroke?
Stroke is the second most common cause of death and major cause of disability worldwide. Because of the ageing population, the burden will increase greatly during the next 20 years, especially in developing countries. Advances have occurred in the prevention and treatment of stroke during the past decade (Donnan et al, 2008). However, 16 million first ever strokes occur in the world annually, causing a total of 5.7 million deaths (Di Carlo, 2009). Each stroke is unique, but there are a number of common ways in which a stroke can affect someone. Survivors can experience physical disability, or difficulties in processing language, in reading, in articulating, or in swallowing. They may also experience psychological problems such as anxiety and depression (McKevitt et al, 2011).
Stroke in Ireland
In Ireland it is estimated that there are 30,000 people living with residual deficits after stroke (Irish Heart Foundation, 2018). Although many of them return to live in the community, some require nursing home care. This care accounts for the largest proportion of the total annual cost of stroke in Ireland, which is estimated to be between €489 and €805 million (Smith et al, 2010).
In January 2016 the Irish Heart Foundation partnered with the HSE National Stroke Programme to launch the second ever national audit of stroke services. The audit revealed that the death rate from stroke in Ireland has been cut by more than a quarter and the rate of direct discharge to nursing homes has almost halved in the last seven years. However, despite the Stroke Programme’s success in developing services, many stroke deaths remain preventable, whilst a high proportion of stroke survivors continue to suffer undue disability in terms of both severity and length of time due to inadequate rehabilitation services (Irish Heart Foundation, 2018).
To carry out the literature search for the dissertation with particular reference to my Literature Review, I have used the UCD Library database and I have focussed on the One Search option which is a single point of discovery for the library collections available in the UCD library. The keywords that I focussed on as part of my literature search and research were Stroke, Stroke Supports, Stroke survivor, Families and stroke, Social Worker and stroke, Multi Disciplinary Team and Stroke and psychological and emotional impact of stroke.
My literature search was comprehensive. It involved the following
1.The use of search engines such as Google Scholar and databases such as Scopus and EBSCO.
2.The search of websites of professional and statutory organisations dealing with stroke and survivors of stroke such as the Irish Heart Foundation and the Health Service Executive. Academic book were also reviewed.
3.The search academic journals such as Clinical Rehabilitation, Social Work in Health Care and Research on Social Work Practice……………………
to investigate the different type of stroke support groups that are available in Ireland.
I also looked at statistics from the HSE website.
I will mainly focus my research on Ireland and the UK but I will also research international data on stroke rehabilitation and other forms of support given to stroke survivors and their families.
Literature Review including strengths and limitations
Denney & Tewksbury (2013, p.218) describe a literature review as a comprehensive overview of prior research regarding a specific topic. The overview both shows the reader what is known about a topic, and what is not yet known, thereby setting up the rationale or need for a new investigation.
A strength of writing a literature review provides the opportunity to generate new knowledge about a topic, being able to review, critique and synthesize representative literature on a topic in an integrated way such that new frameworks and perspectives on the topic are generated (Torraco, 2005, p.356). Booth et al. (2016) suggests that strength of a Literature review is that it can identify what has already been covered by previous scholars and this helps prevent others needlessly duplicating their effort. Wee & Banister (2016) agree with Torraco (2005, p.356) and they believe that literature reviews are often very helpful for researchers, as the reader can get an up to date and well-structured overview in a specific area, and the review can add value.
The limitations of writing a literature review are that there may not be enough research or papers to include in the literature review, or the opposite and more common aspect is that there are too many research papers on the topic of choice and the solution is to try and narrow down the most important and relevant research questions for the proposed topic. Writing a Literature review is not an insignificant task, and it is very often a time-consuming activity. Not only can the selection and reading of literature in many cases take a considerable time, but so can the writing, as a literature review is much less straightforward than writing a main stream research paper, and consequently the writing stage might take a considerable time (Wee & Banister, 2016, p. 280).
Ethical considerations in conducting literature reviews
The Research Ethics Guidebook resource for Social Scientists website (2018) states that potential ethical considerations that should be considered when writing a Literature review include (i) how will the researcher ensure that they will treat the work of the existing researcher accurately and fairly? (ii) can the research that a person is reviewing raise ethical questions that need to be addressed? and (iii) could there be occasions when the researcher decides not to include the findings in the review because the researcher was concerned about the ethics of that research? I took these matters into account when undertaking my research.
1.5Structure of the dissertation
This dissertation is divided into five chapters.
Chapter one, the introduction chapter, will focus on the aims of the dissertation, the research questions, and background to the topic, details of the literature search, an analysis of the strengths and limitations of literature reviews, ethical considerations and definitions of key terms regarding stroke.
Chapter two will focus on how stroke impacts on an individual psychologically and emotionally and what helps them cope.
Chapter three of the dissertation will focus on how stroke impacts not only on the survivor but also their family member as the informal care giver and what help them cope.
Chapter four of the dissertation will focus on the impact Social workers have on a stroke survivor’s life.
Chapter five of the dissertation will be a research proposal EDIT
How stroke impacts on an individual psychologically and emotionally and what helps people cope?
This chapter discusses how a stroke impacts on an individual psychologically and emotionally and on what helps an individual in such a traumatic situation to cope.
In the context of the psychological and emotional impact of stroke on a survivor, I intend to discuss this matter on the basis of a number of themes which can be distilled from the literature. In summary, the body of this literature can be broken down into a number of themes as follows:
Psychological concerns post stroke
In addition, I will also discuss what helps stroke survivors cope with the psychological and emotional impact of stroke. This discussion will also follow a set of themes that continually appear in the review of prior research:
2.2Psychological Concerns post stroke
A number of psychological concerns arise for a stroke survivor.
1.Depression and Anxiety:
Kessler (2011) believes that understanding the relationship between psychological factors and stroke is a complex undertaking. Depression, anxiety, aggression and emotional liability are commonly seen in persons, who have sustained a stroke, and each takes its toll on adjustment and each affects functional outcome. For many years, depression following stroke was overlooked or viewed as an unfortunate but unsurprising consequence of the illness. However rehabilitation professionals have acknowledged the prevalence of post stroke depression (PSD) and more important, that it may not be a ‘normal’ or inevitable outcome of stroke (Mc Carty et al, 2011). Ouimet et al (2001) found that in a review of risk factors for post stroke depression (PSD) past history of dysphasia, functional impairment, living alone and social isolation were consistently associated with depression. In addition, Ouimet et al (2001) believe that depression may be related to the consequential loss of psychological or physical abilities and feels that often these emotional experiences can be overshadowed by physical disabilities that become the focus of treatment.
A study carried out by Nannetti et al (2005) found in their research on the ‘Motor and functional recovery in patients with post stroke depression’ that PSD is present in patients who have greater impairment post stroke. Nannetti et al (2005) reports that as many as 30 to 50 percent of stroke survivors having significant psychological disorder after stroke. Platten (2014) appears to have a similar view as Kessler (2011) and believes that people who experienced PSD or anxiety tend to have poorer functional and social outcomes and may take longer to get back to daily activities and have a lower quality of life. Gillen et al (2001) elaborates on this topic and believes that emotional difficulties also make it more difficult for patients to engage with rehabilitation, and this may affect their response to treatment.
In agreement with Kessler (2011), Nannetti et al (2005) and Platten (2004) suggest that from their research it appears that PSD and stroke are a very common correlation and survivors with PSD tend to have negative effects on patients functional outcome. A study carried out by Ahn et al (2015) in Korea showed that of the 226 post stroke survivors that were recruited in the research study, which was to discover the effect of post stroke depression on rehabilitation outcomes, more than half of the patients had depressive symptoms post stroke. These findings correspond with an Irish study carried out by Cassidy et al (2013), whereby of 50 first stroke patients who had suffered from their first stroke 3-12 months previously and were assessed one week after admission into an inpatient rehabilitation, none of these stroke survivors had a history from psychiatric disorders prior to their stroke. This was similar to the Ahn et al (2015) study.
From the Cassidy et al (2013) research study the results showed that out of the 50 participants, 10 (20%) met the criteria for major depressive disorder on admission. Another interesting finding from the Cassidy et al (2013) study was that it appeared that females were more likely to suffer from PSD as oppose to males. The association between females and PSD appeared to be the case in numerous research studies. Similarly to Cassidy et al (2013), Paolucci (1999) found that PSD occurred in 129 stroke survivors, of the 27.4% who had PSD the majority being female. In addition to the findings from Cassidy et al (2013) and Paolucci (1999), Vidler (2005) conducted a qualitative study with stroke survivors in which she identified low self agency as a major theme across the women with PSD who she interviewed. Vidler (2005) wrote that “participants statements referred to feelings of helplessness, powerlessness and the inability to take action, or feeling they were not in control of their lives”.
From the research it appears that PSD and other psychological disorders persist long after the stroke event. From the literature many studies do not appear to expect many signs of PSD until at least 3 months after a stroke. It appears that from the research, PSD did not interfere with a stroke survivor’s functional rehabilitation but post discharge, home lower improvements seemed to emerge. In the Cassidy et al (2013) Irish study, it appeared that of the 50 post stroke survivors, the10 of whom met the criteria for major depression, showed that those who had depression did not affect and was not related to functional disability following stroke or early functional outcome following rehabilitation. Similarly from a study by Nannetti et al (2005) whereby two groups were recruited in a rehabilitation hospital, one group with the presence of PSD and the other without PSD following their stoke. Nanetti et al (2005) found that both groups had similar functional improvements during hospitalisation, but with a three month follow up after discharge the PSD group had much lower level of improvement. Nanetti et al (2005) believes that these results are due to the fact that when the patients were in hospital they were in a stimulating setting, which could not be similar to home. Nanetti et al (2005) believes that during the intensive rehabilitation programme patients noticed a significant motor recovery and they were on anti depressant medication in hospital which they believe all had a positive influence on their PSD. From the research it appears that many stroke survivors with PSD have been prescribed antidepressant medication during their rehabilitation.
Nanetti et al (2005) results appear to correlate with the Irish national survey of stroke survivors (2014) where it appeared that of the 196 stroke survivors who completed the survey that were living back in the community, 151 individuals reported on having emotional difficulties when returning back home. Only 11% of them received psychological services and ten people discussed the need for counselling to deal with the emotional aspect of stroke.
Following the previous theme of depression and anxiety, it is not surprising that such profound change with cognition, physical and emotional abilities can impinge upon stroke survivors’ perceived ‘identity’ and ‘self- esteem. Change or ‘loss’ of identity/ sense of self is common (Lapadatu and Morris, 2017). Stroke survivors experience a disconnect with their pre-injury self and see the reconstruction of the disrupted identity as an important step in their recovery (Levack et al, 2010). Identity change has been described as ‘loss of me’ and feeling distanced from the new self, which is perceived as strange and unfamiliar (Murray and Harrison, 2004).
Ellis- Hill (2000) undertook a study to recognise issues of identity in physical recovery following a stroke. This study included eight stroke respondents who were admitted to hospital with a stroke, no previous disability and who were returning home following their hospital rehabilitation. All participants were interviewed in hospital and one year after their stroke. All respondents described a fundamental change in their lives and identity. The main issue was a split between themselves and their body. In hospital, their body appeared to become separate, precarious and confusing. By one year the majority of the participants still found their bodies unreliable. Clarke and Black (2005) found similar results from stroke participants who found the physical loss they had experienced as a key defeat in their identity. Eight stroke survivors were interviewed in their homes, with many using a cane or in a wheelchair. All participants indicated that their lives had changed post stroke, with many indicating how they could no longer be the person they used to be before their stroke. All respondents commented on activities they did before their stroke that made them the person they used to be, such as gardening and travelling. Clarke and Black (2005) found that for those survivors whose physical independence was pivotal for their ability to carry out self defining activities, their quality of life was particularly affected.
As well as the physical changes post stroke survivors may feel could interfere with their identity, cognitive changes. Dickson et al (2008) carried out a study and found that many participants described changes in how their voice sounded which had a negative impact on self identity. Aphasia appears to frequently emerge in literature where the theme has been identity. The literature shows that adjustment to post stroke life with aphasia can be complex and multifaceted (Musser et al, 2015). Musser et al (2015) conducted a study with two groups, group one were patients who had recently experienced a stroke resulting in aphasia and were in rehabilitation at the time of recruitment, this group were followed an average of 18 months, completing additional interviews of the course of this period. Group two were participants who had their stroke more than 5 years prior to the study and they were involved in an aphasia support group. All 12 participants had limitations in language but all participants were interviewed with the assistance of their husband or wife. From the two groups, changes in identity emerged as an important theme, identified by nearly all participants even though there was a few years gap of when the stroke occurred between the two groups. Musser et al (2015) found that the participants found a change in their occupational identity, relationship/ family roles, and social identity. For all the participants language and communication were an important part of their identity as professionals, as parents, as friends and spouses.
Social isolation and reduced social support are linked to depression and slower recovery of functional status during stroke recovery; they are at an increased risk for first and recurrent strokes and mortality compared with people who are more socially integrated (Hinojosa et al, 2011). A recent systematic review exploring social support post stroke found that stroke survivors are at risk at losing contact with friends and acquaintances, take part in few social activities, family functioning is placed under strain and the overall size of their network becomes smaller (Burns et al, 2015). In a study carried out by Litwak et al (2005) social isolation was defined as ‘knowing fewer than three people well enough to visit with in their homes’, it was found that 25% of the stroke survivors that participated met this criteria. Communication difficulties can also contribute to social isolation. Speech, writing and reading impairments may influence an individual’s ability to interact or communicate with others (Mukherjee et al, 2006). Having aphasia appears to create particular challenges in maintaining strong social relationships (Hilari and Northcott, 2011). Hilari and Northcott (2011) carried out a qualitative study comparing the experiences of those with and without aphasia one year post stroke, the results showed that those with aphasia were more likely to experience hurtful negative responses from others, to report that the substance of their friendship had altered (e.g. conversations were less likely to be two way, it was harder to join in a group conversation), and were more likely to report loosing friendship circles.
Northcott and Hilari (2017) carried out a further study whereby they wanted to compare the social relationship of healthy older people and people with stroke and aphasia. The results of this study were comparable to the previous research Northcott and Hilari carried out. It appeared that those with aphasia have less diverse social networks than healthy older adults, with friendships particularly affected.
Challenges in transportation and employment are often identified as crucial issues in social adjustment. Loss of mobility is a fundamental obstacle for many stroke survivors. Transportation may not be accessible or may be unreliable, limiting activities outside of the home (Mukherjee et al, 2006).
Stroke survivors who lived alone, no matter how severe the stroke affected them were seen to experience depressive like symptoms and experience social isolation. Hayley et al (2011) undertook a study examining the quality of life of people post stoke, the results showed that of the 272 participants, it was found that those stroke survivors who were living alone reported larger increases in depressive symptoms after stroke than stroke survivors living with a family member or friend. The study proved that social isolation in this study demonstrated that living alone is a risk of worsening quality of life after stoke. Comparable results featured in a study by Redfors et al (2016) whereby it was established that living alone post stroke was associated with increased long term mortality. Health-compromising behaviours such as smoking, heavy drinking, physical inactivity, less frequent dental visits, and impaired medication adherence have been associated with living without a partner. Redfors et al (2016) found that males living alone were more likely to have increased long term mortality post stroke. Redfors et al (2016) believes that this could be due to males being more dependent on the encouragement of their spouses to seek medical attention for cardiovascular symptoms compared to women, and men living alone has a higher likelihood of having an unhealthy diet compared to women living alone and cohabitants persons.
2.3What helps survivors cope with the physiological and emotional impact post stoke?
This section considers the factors that help survivors of stroke cope with the physiological and emotional impact post stoke? Three themes can be distilled from the literature namely music therapy, group work and social support.
Music therapy appears to affect physiological phenomena such as blood pressure, heartbeat and respiration, as well as emotional aspects such as mood and feelings (Standley, 1986).Clinical studies in adults also demonstrated correlations between the physiological and emotional stimulation effects of music (Peretti and Zweifel, 1983). Kim et al (2011) carried out a study to learn more about the effects of music therapy in stroke patients. In the study 18 patients were undergoing rehabilitation, of the 18 people 9 were recruited to undertake 8 music therapy sessions twice a week for 4 weeks. Both groups received the same comprehensive rehabilitation therapy. It appeared that those who took part in music therapy class their level of depression and anxiety dropped significantly compared to those who were undergoing just the comprehensive rehabilitation. Participants and their care givers were asked to complete a questionnaire prior to the music therapy 4 week session. It showed that the percentages of patients and caregivers who answered that there was a positive psychological change after music therapy were 77.8% and 66.7%, respectively. The percentages of patients and caregivers who answered that music therapy inspired motivation and actually helped rehabilitation treatment, and that they would actively recommend the music therapy to others were 66.7% and 55.6% respectively.
Group work appeared to be a familiar theme when researching post stroke supports. Cattan (2005) found that group interventions that included social activities and were aiming particular target groups, such as stroke survivors, might prevent depression and social isolation, and contribute to promoting physical and psychological well-being. This outcome correlates with a study by Lund et al (2018) that recruited six stroke survivors to participate in lifestyle groups over a period of nine months. Following on from the nine-month group all six participants were interviewed in their own home one month to eight months after the group work. Sharing experiences of stroke and knowledge, developing a sense of belonging, reflecting and working with meaningful occupations seem to be important for regaining a sense of self-worth, and taking responsibility for, and control over, one’s own life. The active participation seemed to bring the participants’ resources into focus and contrasted with the frequent negative perceptions of people post-stroke as ‘victims’ (Lund et al, 2018). Patterson et al (2010) carried out a similar study on the affects of group work post stroke; however, the aim of the research was to see if there were any different outcomes to those who participated in just a traditional peer support group compared to a stroke maintenance exercise group. The results indicated that both these groups showed a significant increase with daily task participation over a 3-month period. This pilot study suggests that both stroke maintenance exercise groups and peer support groups are effective with assisting long-term stroke survivors to improve participation in everyday activities (Patterson et al, 2010).
The National Survey of stroke survivors in Ireland (2013) found that five people who attended stroke support groups referred to the group coordinator, who in many cases was the Clinical Nurse Specialist, as the professional who had helped their recovery most since returning home. Seventy five percent of the respondents had been to a stroke support group. When asked to describe what had helped most with the stroke survivors’ recovery since returning home twenty two people discussed stroke support groups. Benefits of the stoke support groups that were described included increasing self confidence, social interaction and being a ‘link for help if needed’.
As seen previously in this literature review, social isolation and reduced social support are linked to depression and slower recovery of functional status during stroke recovery. Wills and Shinar (2000) highlight the different dimensions of social support: emotional support (listening, caring, acceptance), instrumental care (practical help), informational care (providing knowledge to help solve problems), companionship (socialising, belonging), and validation (feedback, social comparison). Support from families and close friends is an important facilitator of community re integration. This support can take the form of practical help including transport and introducing adaptations or more emotional support and encouragement (Kubina et al, 2013).
Saltera et al. (2010) reviewed the effectiveness of social support interventions on post-stroke mood and concluded that those that were successful were initiated early, had a high intensity of frequently arranged, worker-initiated contact, and incorporated a continual assessment, screening for depression, and counselling where necessary. The importance of early intervention post stroke and social support appear to show up in previous studies frequently. Villain et al (2017) wanted to evaluate if the number social contacts as well as social support received from family, friends and medical staff within 24 hours following admission for stroke could predict depression and daily life functioning three months later. The results show that the number of social interactions received at hospitalization did not predict three-month outcomes. However, a better quality of moral support from friends and family immediately after stroke was associated with decreases in later depression levels and increases in activities of daily living. Material support from friends and family was associated with increases in activities of daily living. No effect was observed for support received from medical staff. These results correlate with the Irish National survey of stroke survivors (2014), Out of the 196 people surveyed, 80 respondents reported that the support of their spouse, family and friends facilitated their recovery.
Gbiri et al (2010) documented the incidence, pattern and impact of depression on the quality of life of stroke survivors within 6 months post stroke. It was very obvious in this study that those who overcame depression early enough, most especially through availability of social support, had moved closer and faster to their pre stroke quality of life. Gbiri et al (2010) believes that this shows that emotional modification in terms of support, de stigmatisation and ‘making a stroke patient happy’ may go a long way in facilitating improvement in quality of life.
2.4Discussion and conclusion
My main analysis from this review is that rehabilitation is more about physical improvement and does not really focus on a survivor’s psychological improvement.
Pound et al (1998) believes in post stroke care the emphasis is on rehabilitation, aimed at enabling the patient to re-learn the practical skills necessary to prevent physical degeneration – such as that caused by restricted movement – and to regain functional competence through repetitive exercise. The stroke literature, too, is dominated by a concern with identifying and measuring indicators of physical abilities. This approach has been criticized because it can fail to take into account the psychological and emotional effects of this condition (White and Johnstone, 2000). Moreover, the emphasis on physical rehabilitation may not match the concerns of the patient. In a phenomenological study, Burton (2000) writes that participants focused on engagement in the social world rather than physical performance. Ellis-Hill (1998) found those two years after their stroke, participants saw themselves as less active, satisfied, independent or interested than they had been pre-stroke. These perceptions did not appear to be related solely to the severity of the physical symptoms. Thus, the observable level of physical impairment is not a reliable indicator of the stroke sufferer’s experience of illness. According to Dafer, et al., (2008) early diagnosis and successful intervention of post-stroke depression may improve clinical outcome and should be considered as a key to better stroke care.
PSD, anxiety and other psychological and emotional disorders are extremely common in stroke survivors. Post stroke many can lose who they are as people due to the physical and cognitive losses they have experienced. Social isolation and loneliness are linked to depression and slower recovery of functional status during stroke recovery. Many researchers believe that rehabilitation should not mainly focus on the physical improvements of post stroke patients but also have access to psychological interventions. Early depression intervention appears to be very beneficial to stroke survivors in the long run of their recovery. It appears that more aftercare would benefit survivors and the likes of music therapy, group work and social inclusion are all factors that can help survivors cope with the psychological and emotional impacts post stroke.
The impact of stroke on the survivor’s family as the informal carer
The purpose of this chapter is to consider the impact which stroke has on the family of the stroke survivor. The family or family member can also be called the informal carer.
In the UK, approximately 80% of stroke survivors live in the community a year after the stroke, more of whom are dependent on an informal carer. The high rates of people returning home after a stoke is likely due to the stroke rehabilitation that the stroke survivor participates in, which then leads to the reduced rates of institutional care (O’Shea and Goode,2013). ) change later to Ireland stats
Although stroke is still one of the top causes of death, mortality rates have been declining, resulting in much greater survivor rates. Many survivors have long term disabilities requiring varying levels of ongoing assistance, most of which is provided by family members following discharge home (Creasy et al, 2013).
Stroke challenges the well-being of both patients and their
carers (Warlow 1987) and the life of the patient’s spouse or
partner may be permanently altered (Pierce 1994). Unlike the
carers of people with many chronic illnesses, there is usually
no period of transition: stroke is a sudden event and caring
partners enter their new role abruptly, often without the
opportunity to adjust to the change and learn new skills. This
may lead to uncertainty and confusion (Brereton ; Nolan
Stroke challenges the well-being of both patients and their
carers (Warlow 1987) and the life of the patient’s spouse or
partner may be permanently altered (Pierce 1994). Unlike the
carers of people with many chronic illnesses, there is usually
no period of transition: stroke is a sudden event and caring
partners enter their new role abruptly, often without the
opportunity to adjust to the change and learn new skills. This
may lead to uncertainty and confusion (Brereton & Nolan
Stroke challenges the well being of both patients and their carers (Warlow, 1987) and the life of the patients spouse or partner may be permanently altered (Pierce, 1994). Unlike the carers of many chronic illnesses, there is usually no period of transition: stroke is a sudden event and caring family members enter their role abruptly, often without the opportunity to adjust to the change and learn new skills (Draper and Broklehurst, 2004).
In the context of the impact of stroke on the survivor’s family as the informal carer, I intend to discuss this matter on the basis of a number of themes which can be seen in the literature as follows:
Psychological and emotional impact
Challenges regarding provision of information
Challenges regarding support networks
Positive experiences of being an informal carer
Coping ability of carers
3.2Psychological and emotional impact
The prevalence of anxiety and depression are high in stroke survivors, mental health problems following stroke are an equal or even greater problem for their family care givers (Godwin, 2013). Up to 52% of stroke caregivers have been reported to experience depression during care giving periods (Morimoto, 2003). Simon et al (2009) found that factors predicting distress have been investigated but findings are contradictory. The most consistent are that carers tend to be distressed if they have more physical symptoms themselves; employ certain coping mechanisms, have less social support, or look after stroke survivors who are more dependant, have abnormal or disruptive behaviour or are depressed themselves.
In a cohort study conducted by Simon et al (2009), 105 informal carers of patients who recently experienced stroke were interviewed. It was found that carers were two and a half times as likely to have significant psychological distress compared to a control group of non carers. Anderson et al (2018) undertook a study to try and identify factors in patients associated with emotional distress in caregivers 1 year after stroke. The results showed that of the 241 patients who survived to 1 year after stroke and were living outside of an institution, Eighty four patient care giver units were assessed which showed that almost all caregivers reported adverse effects on their emotional health, social activities, and leisure time, and more than half reported adverse effects on family relationships. In this study there was no significant relationship between emotional illness among caregivers and the degree of patients’ disability. However, Tooth (2005) believes that deterioration in survivor physical functioning had been shown to predict worse objective burden among informal caregivers of stroke survivors. A similar study was carried out in Nigeria by Oghenekewe et al (2015) whereby 157 informal caregivers participated in a quantitative study about the possible burden and strain of caring for stroke survivors. The results showed that caring for stroke survivors put social, emotional, health and financial burdens on the informal caregivers. These burdens and strains increase with duration of stroke, intimacy, smaller number of caregivers and length of daily care giving. Chow (2017) recruited 47 families, 23 had a member who suffered from a stroke and 24 had a member with neurological disease. When the two groups of caregivers were compared for anxiety, depression and physical health status after care giving, the care givers of the stroke patient’s higher levels of anxiety and depression compared to their counterparts. Educational attainment, patient group and physical and cognitive impairment of the patients were predictors of anxiety and the depressive status of the caregivers.
3.3Challenges regarding provisions information
In a qualitative UK cohort study, Simon et al (2008) interviewed 105 informal carers, and questionnaires on measures of psychological health, social wellbeing, handicap of the patient and formal community support were completed. The results showed that 57% of carers were dissatisfied with the information they had received regarding the role of the carer. These results reflect what have been in the literature, as many informal carers seem to feel like they required more information before they took on the role. Cecil et al (2011) carried out a study which involved ten female carers with experience of caring for a stroke survivor. All the participants identified the provision of information as a crucial requirement to enable them to care for patients who had experienced stroke. The participants spoke about their desire for information about stroke, in general, and about their husband’s condition in particular, and they would have liked to have been given an indication of the likely cause or trigger of their husband’s stroke. All the women expressed the need for written information, as they were all aware that they had not always fully taken in information that was given to them verbally at times when they were stressed. However, the rigour of this study was compromised by the small sample size and the findings were limited to female carers’ perspectives (Cecil et al 2011). Smith et al (2014) carried out semi structured interviews with 90 informal carers one year after their family member had a stroke. Smith et al (2014) found exceedingly similar results as Cecil et al (2011) regarding the provision of information. Most carers felt they had received insufficient information; that the content was unsatisfactory; and that it was not provided at the right time. The participants felt that finding information was hard work, time consuming and frustrating. Telephone calls were not returned, people were not given progress reports and often information was found by chance. Furthermore, family members may lack information and knowledge because they are reluctant to ask for help. Many individuals feel they are inadequate or are failing as a carer if they do not know something or have to ask for assistance (Anderson et al 1995).
Between 25% and 50% of patients who have experienced stroke require some assistance with activities of daily living (Gordon et al 2004). Informal carers are required to provide assistance and support with these activities, but receive little training for this role (Kalra et al 2004). Kalra et al (2004) set up a randomised controlled trial which included 300 patients who had experienced stroke and their informal carers were given formal training to determine whether a training programme would reduce carer burden. The training consisted of providing basic moving and handling skills to assist activities of daily living for patients who had experienced stroke. The results indicated that the training programme significantly reduced carers’ burden, anxiety and symptoms of depression. Furthermore, it was found that carer’s quality of life increased at three months, and again at twelve months, following patients discharge. In addition, the training helped patients to achieve greater independence at an early stage of rehabilitation.
3.4Challenges regarding support networks
Simon et al (2009) believes that good quality informal support networks protect carers from psychological distress. From the literature it is seen to be that when a stroke survivor returns home, the access to therapies and professional support seemed to be extremely limited. From the Stroke Association (2013) survey, more than 2,700 people completed the survey and many carers reporting that they felt abandoned from the health care professionals when their family member left hospital, this again is linked in with the challenges of information and lack of training that is given to the informal carer. The feeling of abandonment from health care professionals appears to be a theme with how carers feel when their loved one comes home from hospital after suffering a stroke. Smith et al (2014) found that the carers he interviewed also felt ‘abandoned’ by the health care professionals when their family member was discharged home and were disappointed by the lack of GP aftercare.
Interestingly, formal support networks, for example paid carers, can have a negative effect on both informal carers’ and patients’ lives (Greenwood et al 2010). In the Greenwood et al (2010) study, informal carers discussed the unreliability of services and inconsistency of timing relating to the support visits of paid carers, with carers and patients reporting increased anxiety. Smith et al (2014) found that for patients living alone, the Home Help service was reported as supportive. However, carers living with the patients found that this did not always meet their needs because the range of tasks was too restricted or the time available with each client too limited. Cecil et al (2011) found that some of the women involved in the research spoke of why they chose not to have the assistance of professional carers in the home. One reason given was the preserve, as much as possible, everyday family life without the intrusion of strangers in the home. Another reason was that professional carers, who have to work within a very tight frame, tend to do things for the person- such as washing, dressing and feeding- rather than assisting them to do things for themselves. The concern was expressed that this could take away the few remaining independent living skills of the stroke survivor. However, Baillie et al (1988) found that it is not always easy for families of people with stroke to enlist the support of others and the dissatisfaction with social support is common. But interestingly, in correlation with Smith et al (2014) findings that for patients living alone, the Home Help service was reported as supportive, from the Irish National survey of stroke survivors (2014), of the respondents who needed help with personal care after stroke, 46% reported receiving this help from family members, however, 17% received help from the public service and reported that they were very happy with the service, and five people reported that Home Help was one of the things that had helped their recovery most since returning home, but unfortunately many felt that they needed more support from Home Help, impreticularly stating that they would like to give their family member a break from caring for them.
Family members may have given up jobs to provide care, leaving them without sufficient money and sometimes without sufficient energy to maintain social ties and engage in social activities. Sometimes friends stay away because stroke survivors have problems communicating or have diminished interest in socialising (Anderson et al 1995). It is important to be aware that family members may consider it unfair or selfish to go out and enjoy their life if the stroke survivor can no longer do so, and may therefore choose to forego social opportunities (Greenwood et al 2010). Carnwath and Johnson (1987) found that individuals who maintained regular contact with friends and neighbours were protected from depression.
3.5Positive experiences of being an informal stroke carer
As well as the negative impact. It is also very important to focus on the positive experiences on taking on the role as the informal carer for a stroke survivor, while there seems to be very little evidence of research, there is evidence from qualitative literature reviews that informal carers of patients who had a stroke experienced positive outcome, this includes being brought closer to the patient who has had the stroke, appreciating their own life, health and inner strength and learning new skills (Gillespie and Campbell, 2011). In a purposive sample of 31 informal carers, Greenwood et al (2009) found that carers identified relative and absolute positives. For example, a relative positive was comparing the patient with other patients who had experienced more severe disabilities. Absolute positives included the carer being brought closer to the patient, the carer realising his or her own inner strengths, and carers and patients taking better care of their health.
Hayley et al (2009) conducted an epidemiological based study that explored the problems and benefits experienced by carers. More than 90% of carers reported that their experiences had increased their appreciation for life, 86% of carers stated that the event strengthened their relationship with others, and 81% of carers reported that their experience had given more meaning to their life.
Mackenzie and Greenwood (2012) carried out a systematic review of the positive experiences stroke care givers had experienced. The results showed that care recipients progress was the most common source, other aspects included strengthened relationships, feeling appreciated, increased self-esteem. Positive experiences were associated with coping strategies.
3.6Coping abilities of carers
It is evident from the previous themes that caring for stroke survivors can be an enormous, often adverse impact on informal carers. Greenwood et al (2009) investigated the experiences of informal carers of stroke survivors over time. It was found that carers consciously adopt a variety of coping strategies. These were more commonly identified by established carers and by newer carers in the later interviews. Some strategies were practical such as choosing clothing that allows survivors to dress unaided, but arguably many others reflect ways of managing uncertainty. Carers appear to focus on the present whilst adopting strategies such as following routines, taking things slowly and other less tangible means such as accepting their situation, keeping a sense of humour and identifying positives. Similarly Quinn et al (2014) wanted to focus on spousal experiences of coping with and adapting to care giving for a partner, who had a stroke. Seven themes were identified in the study relating to how spouses adapt and cope following their partners stroke. These themes were (1) Seeking information(2) Searching for own space and well-being (3) Suffering in silence (4) Putting one’s own needs aside (5) Adapting to a changed role (6) Social support, and (7) Hope and Optimism instilling a positive focus. Buschenfeld (2009) study into the experience of partners of young stroke survivors found that in the early stages, participants experienced a need to avoid emotional expression to manage the practical tasks and there was a focus on task-oriented, pragmatic coping. And similarly in the Greenwood et al (2009) study, humour was an important means of defusing emotions. Buschenfeld (2009) found that the participants’ sense that social support was crucial to their wellbeing .Caregivers valued instrumental and emotional support from family and formal services, but they found it difficult to access respite or social groups appropriate for young stroke survivors. Similarly, in a study carried out in China, Qui and Li (2008) on the coping strategies of informal carers of family members, it was found that like the previous studies mentioned humour is a key feature of learning to cope, the other coping strategies identified were planning, positive reframing, acceptance, active coping and the use of instrumental support. O’ Connell and Baker (2004) report that caregivers initially remain positive about a stroke event and that humour was one of the strategies used to cope with the care giving task. It was found that emotional and social support of family and friends was essential for care givers to cope with care issues in the acute, rehabilitation and community settings.
3.7Discussion and conclusion
The association between stroke survivor’s functional status
and caregiver depression has been found in previous studies
(White et al. 2003, Chumbler et al. 2004, Berg et al. 2005,
Jonsson et al. 2005, McCullagh et al. 2005). One significant
reason is that the stroke survivor who has severe physical
disability would require more assistance (i.e. transfers,
bathing, toilet use, stair climbing and mobility) from family
caregivers and health professionals.
The association between stroke survivors’ functional status and caregiver depression has been found in many previous studies. One significant reason is that the stroke survivor who has severe physical disability would require more assistance i.e. transfers, bathing and toilet use Qiu and Li, 2008). Lack of information and training ……………………….
Family members are more likely to become the prime carer for their loved one after a stroke. Due to the sudden and unexpectedness of a stroke families can feel very emotional and unprepared to what life is like as a care giver. It is evident from the literature that this can impact on the care giver psychologically and emotionally. The lack of information and training appears to be a trend in the literature, and the family member feeling ill prepared for the task ahead. There are many challenges regarding support networks, especially when the stroke survivor has been discharged home, many carers feel like they have no professional support anymore. Home Help from the research appears to not have a great reputation with informal carers but researchers believe that this is due to the over protective nature that the informal carer may have. It is important to focus on positive experiences informal care givers have experienced although in the research it was difficult to come across positive research as many only focus on the negative impacts. Informal care givers appear to be able to cope mainly with supports from other family members and friends and that a positive outlook and sense of humour can help carers immensely.
The importance of the Multi disciplinary team (MDT) meetings in stroke units and the social work impact on the stroke survivor in the hospital and the home
The purpose of this chapter is to consider the importance of the multi-disciplinary team meetings in Stroke Units in hospitals, the impact of the contribution and a more focused approach on the social workers and their impact working with stroke survivors in hospital and at home.
The specialised and co -ordinate multidisciplinary care provided in stroke units is considered to contribute to improve patient outcomes in such units, however it has not been definitively established how it actually contributes (Clarke and Forster, 2015). The importance of multidisciplinary teamwork in rehabilitation is recognised internationally (Clarke, 2010).
In the context of the importance of the MDT meeting in stroke units, I intend to discuss this matter on the basis of one theme which can be distilled from the literature. In summary, the body of this literature can be broken down into a number of themes as follows:
Team work and patient centred
4.2 Team work and patient centred
Bringing individual professionals together does not automatically mean they will function cooperatively (Hewitt et al, 2014). Stroke teams are larger than many health care teams, so coordination and effective collaboration are important (Clarke and Foster, 2015). Factors which hinder effective teamworking include poor communication, territory and boundary disputes and struggles for power and control over decision making (Adams, 2004).
Tyson et al (2014) wanted to explore how MDT meetings operated in stroke rehabilitation with the aim to explore how teams operated in day to day practice, with the view to develop interventions to improve their effectiveness and ultimately patient outcomes. Twelve meetings were observed and 18 staff were interviewed in eight in patient stroke rehabilitation units. Tyson et al (2014) identified that the main inputs to influence conduct of the meetings were personal contributions of the members, the structure and the format. Tyson et al (2014) found that successful meetings tended to feature a set agenda, structured documentation, pre meeting preparation and skilled chairing. MDT meetings that lacked these features were perceived to be ineffective.
Similar results emerged from Baxter and Brumfitt (2008), the aim was to evaluate current measures of team working in stroke. It was found that team working practice was affected by organisational conditions, decision making and leadership.
From both studies Tyson et al (2014) and Baxter and Brumfitt (2008) MDT participants reported that they felt torn between making time for the meeting (as it took them away from their other duties, particularly contact with patients) and the need to cover relevant information in necessary detail to be fair to the patients.
Baxter and Brumfitt (2008) states that MDT meetings once a week is not enough. This statement correlates with Monaghan et al (2004) which aimed to improve patient and carer communication, multidisciplinary team working and goal setting in stroke rehabilitation. The study included three groups of 25 stroke inpatients on the stroke rehabilitation ward. Three forms of care were completed. 1) A standard MDT meeting using a standard form for documentation 2) a standard MDT meeting using a newly devised form and 3) a novel MDT ward round using the new form, and attended by doctors. The results showed that the MDT ward rounds resulted in significantly better consideration of patients needs, assessable goal setting, patient involvement and team working. Standard MDT meetings did not meet the standards set by the UK National Service Framework. (Monaghan et al, 2004).
Providing care for survivors of stroke can be complex, requiring a combination of medical, nursing, therapeutic and social interactions (Ellis et al, 2010). Social work covers diverse aspects of care such as counselling, liaison with other services, provision of information. Social workers work with stroke patients in the outpatient phase of the disease but are also members of the multi disciplinary teams which take care of stroke patients in acute hospitals and during inpatient rehabilitation (Rizzo, 2006). In the broadest sense, social work aims to help the patient, their family and the acute or rehabilitation team to reach individual determined goals Social workers assist stroke patients in the process of adjustment to disability and where possible facilitate the patient’s return to the community at the highest possible functional, social and economic level (Ue, 1978). In addition, Seymour suggests best practice is every patient with stroke should be seen by a social worker and a social work initial assessment should be completed within the first 48 hours (Seymour, 2013)
In the context of social work impact on the stroke survivor in the hospital and home, I intend to discuss this matter on the basis of a number of themes which can be distilled from the literature. In summary, the body of this literature can be broken down into a number of themes as follows:
Post stroke depression (PSD)
Support and Information
4.4Post stroke depression
As previously referred to in the literature review, depression is particularly common to those who have suffered from a stroke. It is believed that 30-50 percent of those who have suffered a stroke suffer significant psychological disorders Nannetti et al (2005). Researchers believe that those who had suffered a stroke should have an assessment within a month of their stroke, followed by regular reviews (Barrick, 2013). McCarthy et al (2011) believes that post stoke depression is treatable, and even preventable and finds that social workers would be able to identify and access PSD. Unlike practitioners from rehabilitation disciplines that may be more oriented toward a medical model of diagnosis and treatment, McCarthy et al (2011) states that social workers are trained to view stroke survivors in their physical, social and emotional contexts and can draw on their skills such as active listening, observations of verbal and non verbal behaviours, reflection and exploration of individuals distress through open ended questioning.
Canadian research by Seymour (2013) believes that social workers can do the initial follow up after the patient has been screened for depression in the Emergency Department; additionally the social workers can provide on-going support, monitor the patient’s progress, provide appropriate referrals and make recommendations. Significant cost savings are expected, given Social Workers are previously trained to provide primary support therefore it is not necessary for additional training. In Canada, over a 6-month period, there are estimated costs of $32, 071.52 to implement depression screening for patients with stroke. Furthermore, Seymour (2013) states that by utilising Social workers this will enhance correlation of the interdisciplinary health care team; by providing improved communications, delivering consistent routine care, and largely resulting in approved patient outcomes.
In correlation with McCarthy et al (2011) and Seymour (2013) on PSD and social workers, Karamchandani et al (2015) hypothesised that early depression screening in stroke patients is feasible. In a stroke rehabilitation hospital in America, Social Workers were in charge of a depression screening that was completed by stroke survivors on their arrival into hospital, it was a modified patient health questionnaire that consisted of 9 questions. Scores range from 0 (no depression) to 27 (severe depression).Social workers recorded the score in the electronic medical record and communicated with the primary medical team if a patient scored ;4 (mild to moderate depression). The corresponding action plan was then carried out by the social worker and the medical team. Patients with at least minimal depression (score;1) were provided with a packet of education material consisting of a PSD pamphlet and fact sheet, as well as information on other post stroke mood disorders. Phone numbers for local counselling services were provided and website addresses for mental health organisations. One participant reported feeling a benefit from discussing low mood and stressors with a social worker during hospitalisation where they also organised outpatient counselling following discharge. The Social worker was the prime practitioner trained in documenting PSD scores and Karamchandani et al (2015) believes that if PSD is able to be identified early, it may offer the opportunity to institute therapies that may positively impact stroke patient outcomes.
However, it appears that the Social work intervention is not always a benefit to PSD patients. Towle et al (1988) carried out a study where by 44 depressed stroke patients were randomly assigned to either an intervention or non intervention group. Both groups were given an information booklet and the intervention group were then visited regularly by a research social worker over a period of 4 months. The social worker adopted a pragmatic approach when working with the PSD patients, this included counselling and information on services and benefits. When the results from the two groups were combined, home help and meals on wheels were the most frequently provided services. It was believed that Social work assistance had little effect on service provision or level of functional independence.
4.5Support and Information
Stroke prevention includes public education and community based screening to identify stroke risks. Even though more than half of all strokes are preventable, the incidence has increased in recent years and remains the leading cause of disability (Mossey, 2005).Social work’s skills base in gerontology, psychosocial interventions, and empowerment through community organisations are ideal for early intervention and behaviour change (Mossey, 2005).
A community based stroke prevention screening was set up by a Social work team in Ohio to increase awareness and identify stroke risks. With the assistance of other health care professionals’ 287 people from the community took part in the screening which included taking blood pressure, calculating BMI, answering questions on personal information and asked what their knowledge on stroke was. Participants watched a video and given information on nutritional prevention or management of risk factors, and lastly each participant went to an information counselling service where they were given a stroke risk counselling session. Each participant was given their score sheet of their results at the end of the session and was given as a three month follow up questionnaire which was used to ask the participants if the results of the screening prompted any changes in behaviour of care, this questionnaire was developed by the social work team. The 287 participants were contacted three months later and the results showed that due the results of their screening 19.6% reported exercising more, 28.5% reported less dietary fat, 24.4% less dietary salt and of the 29 smokers contacted at the follow up, 7 reported they were smoking less than at the time of the screening. Mossey (2005) believes that information alone may not always associate with readiness to change or spur motivation to practice healthy behaviours but the fact that 287 people turned up to the stroke screening is progress.
From the Mossey (2005) research it shows that Social Work input and information can potentially prevent people from having stroke, but unfortunately for those who are stroke survivor’s social work support and information can benefit them too. From the literature Social work support and information post hospital rehabilitation can benefit hugely. Padberg et al (2016) collected and evaluated data derived from a specialised ‘Stroke Service Point’ (SSP) which was a ‘drop in’ centre and non medical stroke assistant service, staffed by social workers in Berlin. Over a two year duration 1,500 contacts were made to the SSP,
Those contacting the SSP were stroke patients, Relatives involved in taking care of the patients and friends and healthcare professionals. Social Work staff in the SSP offered a range of services including social and emotional support, provision of advice and information as well as liaising with other services. Even when patients were in hospital, carers often wanted advice, on topics mainly related to outpatient setting, this correlates with chapter three of the literature review and the challenges regarding provision of information, those care givers visibly feel they have no one to ask in the hospital setting. Padberg et al (2016) states that increased knowledge of needs of social work interventions depending on the phase of stroke care might contribute to a timelier and tailored approach which may improve care for stroke patients and their relatives.
In correlation with the Seymour (2013) statement where it is believed that social work input can lead to significant cost savings, given Social Workers are previously trained to provide primary support therefore it is not necessary for additional training when it came to screening PSD, Rizzo (2006) also found that the social work support services were associated with lower hospital charges. This was due to the stroke population being at high risk for poor rehabilitation outcomes and need the most intensive level of social support to get them closer to returning home sooner. Boone et al (1981) states that early social work intervention and services resulted in one and one half day decrease in the length of the hospital stay.
Similarly to Padberg et al (2016) statement that social work intervention might contribute to a stroke patient’s care and assist their relatives, Claiborne (2006) evaluated the effectiveness of social work care for outpatients recovering from a stroke over a three month period following discharge from hospital. 28 patients participated who all completed a quality of life assessment. 16 participants in the intervention group, which received additional social work care and 12 people in the control group who did not. Each of the 16 members in the intervention group was assigned a social worker who made an initial home visit within one to two weeks after the patient was discharged and the patient was then contacted weekly by telephone, which lasted from 20 minutes to an hour. The social worker assisted the stroke survivors with assisting and advocating in regard to patient entitlements and community services as well as many other interventions. As well as assisting the stroke survivor, the social worker educated family caregivers, by providing brief patient care giving counselling, reviewing caregiver support and referring caregivers for respite care. The results showed that there were significant improvements in mental quality of life and depressive symptoms accompanied by adherence to self care practices that can be attributed to the social workers intervention and most likely to their regularly assisting patients in adapting to their new chronic condition (Claiborne, 2016).
Similarly to the Karamchandani et al (2015) study, where by PSD participants were given stroke information packs and had access to a social worker, in a study undertaken by Clark (2003) wanted to determine whether education and counselling after stroke leads to improved family functioning and psychological outcomes for stroke patients and their spouses. Upon discharge home, sixty two stroke patients and their spouses were asked to participate in the study, 32 in the intervention group which included a stroke information pack and three visits over a six month period from a social worker trained in family counselling, and 30 in the control group who were not provided with this support. The results showed that family functioning of patients in the control group slightly declined over the study period, while that of the intervention group remained stable. Patients who received the intervention reported better social recovery. This trend was apparent for the domestic chores, household maintenance and social activities. The study did have limitations; the sample size was not large and the intervention was delivered by only one social worker.
A very interesting new way social workers can communicate with stroke family care givers and other family care givers of those who have chronic disease such as Parkinson’s was investigated by Damianakis, Climans and Marziali. The objective of the study was to examine the challenges for social workers, who transition from facilitating face-to-face psychotherapeutic groups to online web-based video groups with family caregivers (Damianakis et al, 2008). This entailed video groups that were facilitated for 1-hour weekly for 10 weeks. Eight social workers and one nurse took part in the study. According to the social worker-therapists responses, group interactions were, overall, comparable to face-to-face support groups and the online groups met the goals of providing emotional and psychosocial support to caregivers. Consistent with social workers responses, six-month follow up interviews with the online group members showed positive participant responses in learning to use computers, using technology to communicate, bonding with group members, providing mutual guidance and support, and benefits in terms of coping with the stresses of care giving (Damianakis et al, 2008). However there were a number of limitations, therapists described technological challenges in working online, in particular dealing with technological glitches (e.g., seeing the members but not hearing them, not seeing them at all) and also it appeared to be more difficult to engage clients online, since many were preoccupied with the technical challenges. But it was reported that when the group members successfully went online, the relationships were developed with the facilitators and engaging clients followed with ease (Damianakis et al, 2018).
4.6Discussion and Conclusion
The role of the MDT during stroke rehabilitation is very important, the teams are quite large, and from the research team work appears to be vital. A proper plan, structure and time management will lead to a more structured meeting. It is evident from the research that weekly meeting are not meeting the standards and involving patients in the MDT appears to be a more beneficial way to carry out the meeting. There is very limited research on Social worker and stroke. However, from the available research medical Social workers can make a huge impact on the life of the stroke survivor and their families. As previously mentioned they have the training to assist stroke patients in the process of adjustment to disability and where possible facilitate the patient’s return to the community at the highest possible functional, social and economic level. They have the knowledge to access PSD and possibly preventing it which can lead to a much smoother road to recovery for a stroke survivor. From the research it appears that those stroke survivors and informal carers who are provided with information and support from a social worker have a somewhat simpler time and are more equipped to deal with the dramatic new life they must lead. The use of online social work intervention is very interesting, instead of care givers having to leave their home for support it appears video groups are just as equally beneficial to those that take place face to face.
In this chapter I will discuss two matters arising in particular from my review of the literature in chapters 2, 3 and 4.
The first part will consider the implications of the literature review findings for social work policy and practice in Ireland and beyond. Arising from my review of the literature, the second part will outline a proposal research plan for developing a study into a full empirical research project.
5.2 Implications of the literature review findings for social work policy
From my research for chapters 2, 3and 4 there were very little Irish based research from what I could find. It appears that in countries such as Canada and America the skills of the social worker are utilised more, for example social workers setting up stroke prevention screenings and being in charge of assessing post stroke depression. From the research it appears that carers feel that they do not have the information or skills provided to them as an informal carer for stroke survivors. It was proven that with the assistance of the social worker providing information booklets, a drop in centre, counselling, home visits plus more that stroke survivors and their carers can feel as if they were more prepared for what was in store for them. It appears that many researchers believe that the physical aspect of stroke rehabilitation is more focused on the physical improvements a stroke survivor is making and not so much on emotional and psychological impact it has on their lives. In correlation with this statement in a study undertaken by Clarke (2010) a Social worker on the MDT team argued that doctors and allied health professionals remained focused primarily on physical and functional issues in the rehabilitation stage.
5.3 Part one
Research methods literature and study aim
It appears that from the literature very limited services are provided by social workers and other health care professionals out in the community, from the Irish national survey of stroke survivors (2014) only 22 people out of 196 had contact with a community social worker when they were discharged from hospital, even though as previously mentioned in chapter ………..151 individuals reported having emotional difficulties, only 11% of them received psychological services and10 people discussed the need for counselling to deal with the emotional aspect of their stroke. It appears from the literature that with more input from a social worker in both the hospital rehabilitation stage and at home for both the survivor and their family member it can decrease stress and frustration for all those involved in Ireland and beyond. This statement correlates with Padberg et al (2016) where it is suggested that increased knowledge of needs of social work interventions depending on the phase of stroke care might contribute to a timelier and tailored approach which may improve care for stroke patients and their relatives.
The study aim for this research project is to show that those stroke survivors and their family members who have access to a medical social worker when they have been discharged from hospital over a three month period will have a more positive transition of going home than those who have no access to the medical social worker.
5.4 Part two
1) Sample Group
The sample group include stroke survivors that were days away to being discharged from hospital and returning home. All participants were over the age of 65; this will include ten males and ten females. Stroke survivors were randomly assigned to either an intervention group, which resulted in having social work access or a control group which did not. Ten participants were in each group. Participants were excluded if they had severe expressive or receptive language problems due to very limited access to Speech and Language therapists. The prime informal carer of those in the intervention group will have access to all social work supports with the permission of the stroke survivor and the prime informal carers from the control group will not have access to a social worker.
2) Sample size
Twenty people were recruited in the research.
3) Recruitment strategy
The stroke survivors were recruited from the inpatient rehabilitation ward of Peamount Hospital. Both the patient and their families will be approached, they will be given information sheets and a contract of the proposed research and they will be asked to sign the contract if they would like to take part in the study.
4) Research design and Research methods
A week prior to being discharged from hospital twenty stroke survivors and their family members were approached and asked to participate in the study. The control group were given an information sheet informing them that they were involved in a research experiment which explained that when they have returned home there will be no access to them or their family members to the social work team from Peamount Hospital until a further three months for a follow up on how they are finding being back home after their stroke. The control group, the intervention group and their families were handed out a questionnaire before they left the hospital. The stroke survivor’s questionnaire consisted of eight questions and a short 20 minute interview with the stroke survivor and one family member.
Do you feel like you have progressed since starting rehabilitation?
Yes No I don’t’ know
Are you looking forward to going back home?
Yes No I don’t know
Are you anxious about going home?
Yes No I don’t know
Do you feel like you have support when you return home?
Yes No I don’t know
Do you feel like life will be different then it was before your stroke?
Yes No I don’t know
NEED HELP HERE !!!!!!!!!!!!!!!!David a separate questionnaire for the family members???
Three months later, all 20 participants are telephoned for a follow up??? They are asked about their questionnaires and asked the same questions again over the telephone??
Invention groups were provided with an information package which included information that included facts about stroke, methods that can be used to relax etc, numbers of counselling services etc. Five ‘drop in’ appointment only 45 minute meetings with the social worker, it had to spread out with the stroke survivor and their family member, unless both parties wanted to have the appointment together, two one hour social worker house visits and two group stroke survivor meeting facilitated by a social worker.
The results are: The informal carer (family member) felt extremely supported. On the home visit the social worker had a chat with one carer and made them feel at ease etc. The stroke survivor felt really happy they had someone who knew a lot about stroke and what helps people cope and found the whole thing very helpful.
The group with no social work influence were struggling. Pretend one woman was getting emotional on the phone because they feel they have been abandoned since returning home. Public health nurses are impossible to get a hold of etc. Family members feeling vulnerable and have very few people to speak to.
Section five is around 2,300 words
5) Ethical concerns
People going over board contacting the social worker?
Those who are in the control group with no SW may get really stressed that they are not in the intervention groups etc
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