Experiences of Self-Management Support Following a Stroke: A Meta-Review of Qualitative Systematic Reviews

Background

Supporting self-management in stroke patients improves psychological and functional outcomes but evidence on how to achieve this is sparse. We aimed to synthesise evidence from systematic reviews of qualitative studies in an overarching meta-review to inform the delivery and development of self-management support interventions.

Methods

We systematically searched eight electronic databases including MEDLINE, EMBASE and CINAHL for qualitative systematic reviews (published January 1993 to June 2012). We included studies exploring patients’, carers’ or health care professionals’ experiences relevant to self-management support following a stroke, including studies describing the lived experience of surviving a stroke. We meta-synthesised the included review findings using a meta-ethnographic framework.

Results

Seven reviews, reporting 130 unique studies, were included. Themes emerging from the reviews were pertinent, consistent and showed data saturation; though explicit mention of self-management support was rare. Our meta-review highlighted the devastating impact of stroke on patients’ self-image; the varying needs for self-management support across the trajectory of recovery; the need for psychological and emotional support throughout recovery particularly when physical recovery plateaus; the considerable information needs of patients and carers which also vary across the trajectory of recovery; the importance of good patient-professional communication; the potential benefits of goal-setting and action-planning; and the need for social support which might be met by groups for stroke survivors.

Conclusions

The observed data saturation suggests that, currently, no further qualitative research simply describing the lived experience of stroke is needed; we propose that it would be more useful to focus on qualitative research informing self-management support interventions and their implementation. Our findings demonstrate both the on-going importance of self-management support and the evolving priorities throughout the stages of recovery following a stroke. The challenge now is to ensure these findings inform routine practice and the development of interventions to support self-management amongst stroke survivors.     

Preliminary Investigation: Acupoint-Skin Conductance in Stroke Survivors

It has been reported that patients with rheumatoid arthritis or asthma have skin conductance over the acupoints that is lower than that of their healthy counterparts; this has been regarded as indirect evidence of the existence of acupoints and the energy-based model of diseases. In order to investigate the potential application of acupoint-skin conductance measurement that may reflect pathology of ischemic stroke, the present study recruited 34 stroke survivors with hemiparesis, whose skin conductance of a hand acupoint and an adjacent non-acupoint and the finger temperature in both affected and unaffected hands were simultaneously measured; the data revealed that the skin conductance and finger temperature were statistically higher in the unaffected hand than that of the affected, and the skin conductance of the acupoint and the non-acupoint were comparable in the affected and unaffected hands respectively. We attribute the observed drop in the skin conductance to the diminished peripheral blood flow of the affected hand that is signified by relatively lower finger temperature. As such, it should be advisable when studying skin conductance over acupoints, monitoring the adjacent non-acupoint skin and local vascular circulation is essential.     

Rehabilitation Profiles of Older Adult Stroke Survivors Admitted to Intermediate Care Units: A Multi-Centre Study

BackgroundStroke is a major cause of disability in older adults, but the evidence around post-acute treatment is limited and heterogeneous. We aimed to identify profiles of older adult stroke survivors admitted to intermediate care geriatric rehabilitation units.MethodsWe performed a cohort study, enrolling stroke survivors aged 65 years or older, admitted to 9 intermediate care units in Catalonia-Spain. To identify potential profiles, we included age, caregiver presence, comorbidity, pre-stroke and post-stroke disability, cognitive impairment and stroke severity in a cluster analysis. We also proposed a practical decision tree for patient’s classification in clinical practice. We analyzed differences between profiles in functional improvement (Barthel index), relative functional gain (Montebello index), length of hospital stay (LOS), rehabilitation efficiency (functional improvement by LOS), and new institutionalization using multivariable regression models (for continuous and dichotomous outcomes).ResultsAmong 384 patients (79.1±7.9 years, 50.8% women), we identified 3 complexity profiles: a) Lower Complexity with Caregiver (LCC), b) Moderate Complexity without Caregiver (MCN), and c) Higher Complexity with Caregiver (HCC). The decision tree showed high agreement with cluster analysis (96.6%). Using either linear (continuous outcomes) or logistic regression, both LCC and MCN, compared to HCC, showed statistically significant higher chances of functional improvement (OR = 4.68, 95%CI = 2.54–8.63 and OR = 3.0, 95%CI = 1.52–5.87, respectively, for Barthel index improvement ≥20), relative functional gain (OR = 4.41, 95%CI = 1.81–10.75 and OR = 3.45, 95%CI = 1.31–9.04, respectively, for top Vs lower tertiles), and rehabilitation efficiency (OR = 7.88, 95%CI = 3.65–17.03 and OR = 3.87, 95%CI = 1.69–8.89, respectively, for top Vs lower tertiles). In relation to LOS, MCN cluster had lower chance of shorter LOS than LCC (OR = 0.41, 95%CI = 0.23–0.75) and HCC (OR = 0.37, 95%CI = 0.19–0.73), for LOS lower Vs higher tertiles.ConclusionOur data suggest that post-stroke rehabilitation profiles could be identified using routine assessment tools and showed differential recovery. If confirmed, these findings might help to develop tailored interventions to optimize recovery of older stroke patients.     

Experiences with Policing among People Who Inject Drugs in Bangkok,Thailand: A Qualitative Study

Background

Despite Thailand''s commitment to treating people who use drugs as “patients” not “criminals,” Thai authorities continue to emphasize criminal law enforcement for drug control. In 2003, Thailand''s drug war received international criticism due to extensive human rights violations. However, few studies have since investigated the impact of policing on drug-using populations. Therefore, we sought to examine experiences with policing among people who inject drugs (PWID) in Bangkok, Thailand, between 2008 and 2012.

Methods and Findings

Between July 2011 and June 2012, semi-structured, in-depth interviews were conducted with 42 community-recruited PWID participating in the Mitsampan Community Research Project in Bangkok. Interviews explored PWID''s encounters with police during the past three years. Audio-recorded interviews were transcribed verbatim, and a thematic analysis was conducted to document the character of PWID''s experiences with police. Respondents indicated that policing activities had noticeably intensified since rapid urine toxicology screening became available to police. Respondents reported various forms of police misconduct, including false accusations, coercion of confessions, excessive use of force, and extortion of money. However, respondents were reluctant to report misconduct to the authorities in the face of social and structural barriers to seeking justice. Respondents'' strategies to avoid police impeded access to health care and facilitated transitions towards the misuse of prescribed pharmaceuticals. The study''s limitations relate to the transferability of the findings, including the potential biases associated with the small convenience sample.

Conclusions

This study suggests that policing in Bangkok has involved injustices, human rights abuses, and corruption, and policing practices in this setting appeared to have increased PWID''s vulnerability to poor health through various pathways. Novel to this study are findings pertaining to the use of urine drug testing by police, which highlight the potential for widespread abuse of this emerging technology. These findings raise concern about ongoing policing practices in this setting. Please see later in the article for the Editors'' Summary     

Peer Support Workers in Health: A Qualitative Metasynthesis of Their Experiences

ObjectivePeer support models, where an individual has a specific illness or lifestyle experience and supports others experiencing similar challenges, have frequently been used in different fields of healthcare to successfully engage hard-to-reach groups. Despite recognition of their value, the impact of these roles on the peer has not been systematically assessed. By synthesising the qualitative literature we sought to review such an impact, providing a foundation for designing future clinical peer models.MethodsSystematic review and qualitative metasynthesis of studies found in Medline, CINAHL or Scopus documenting peer worker experiences.Results1,528 papers were found, with 34 meeting the criteria of this study. Findings were synthesised to reveal core constructs of reframing identity through reciprocal relations and the therapeutic use of self, enhancing responsibility.ConclusionsThe ability of the Peer Support Worker to actively engage with other marginalised or excluded individuals based on their unique insight into their own experience supports a therapeutic model of care based on appropriately sharing their story. Our findings have key implications for maximising the effectiveness of Peer Support Workers and in contributing their perspective to the development of a therapeutic model of care.     

Prevalence of PTSD in Survivors of Stroke and Transient Ischemic Attack: A Meta-Analytic Review

Background and Purpose

Posttraumatic stress disorder (PTSD) is common in survivors of acute life-threatening illness, but little is known about the burden of PTSD in survivors of stroke and transient ischemic attack (TIA). This study estimated the prevalence of stroke or TIA-induced posttraumatic stress disorder (PTSD) using systematic review and meta-analysis.

Methods

Potentially relevant peer-reviewed journal articles were identified by searching the Ovid MEDLINE, PsycINFO, PILOTS Database, The Cochrane Library and Scopus from inception to January 2013; all searches were conducted on January 31, 2013. Observational cohort studies that assessed PTSD with specific reference to a stroke or TIA that occurred at least 1 month prior to the PTSD assessment were included. PTSD rates and characteristics of the study and sample were abstracted from all included studies. The coding of all articles included demographics, sample size, study country, and method and timing of PTSD assessment.

Results

Nine studies (N = 1,138) met our inclusion criteria. PTSD rates varied significantly across studies by timing of PTSD assessment (i.e., within 1 year of stroke/TIA versus greater than 1 year post-stroke/TIA; 55% of heterogeneity explained; Q ₁ = 10.30; P = .001). Using a random effects model, the estimated rate of PTSD following stroke or TIA was 23% (95% CI, 16%–33%) within 1 year of the stroke or TIA and 11% (95% CI, 8%–14%) after 1 year.

Conclusions

Although PTSD is commonly thought to be triggered by external events such as combat or sexual assault, these results suggest that 1 in 4 stroke or TIA survivors develop significant PTSD symptoms due to the stroke or TIA. Screening for PTSD in a large population-based prospective cohort study with cardiovascular outcome assessments is needed to yield definitive prevalence, and determine whether stroke or TIA-induced PTSD is a risk factor for subsequent cardiovascular events or mortality.     

The Impact of Thyroid Cancer and Post-Surgical Radioactive Iodine Treatment on the Lives of Thyroid Cancer Survivors: A Qualitative Study

Background

Adjuvant treatment with radioactive iodine (RAI) is often considered in the treatment of well-differentiated thyroid carcinoma (WDTC). We explored the recollections of thyroid cancer survivors on the diagnosis of WDTC, adjuvant radioactive iodine (RAI) treatment, and decision-making related to RAI treatment. Participants provided recommendations for healthcare providers on counseling future patients on adjuvant RAI treatment.

Methods

We conducted three focus group sessions, including WDTC survivors recruited from two Canadian academic hospitals. Participants had a prior history of WDTC that was completely resected at primary surgery and had been offered adjuvant RAI treatment. Open-ended questions were used to generate discussion in the groups. Saturation of major themes was achieved among the groups.

Findings

There were 16 participants in the study, twelve of whom were women (75%). All but one participant had received RAI treatment (94%). Participants reported that a thyroid cancer diagnosis was life-changing, resulting in feelings of fear and uncertainty. Some participants felt dismissed as not having a serious disease. Some participants reported receiving conflicting messages from healthcare providers on the appropriateness of adjuvant RAI treatment or insufficient information. If RAI-related side effects occurred, their presence was not legitimized by some healthcare providers.

Conclusions

The diagnosis and treatment of thyroid cancer significantly impacts the lives of survivors. Fear and uncertainty related to a cancer diagnosis, feelings of the diagnosis being dismissed as not serious, conflicting messages about adjuvant RAI treatment, and treatment-related side effects, have been raised as important concerns by thyroid cancer survivors.     

Experiences of Community-Living Older Adults Receiving Integrated Care Based on the Chronic Care Model: A Qualitative Study

BackgroundIntegrated care models aim to solve the problem of fragmented and poorly coordinated care in current healthcare systems. These models aim to be patient-centered by providing continuous and coordinated care and by considering the needs and preferences of patients. The objective of this study was to evaluate the opinions and experiences of community-living older adults with regard to integrated care and support, along with the extent to which it meets their health and social needs.MethodsSemi-structured interviews were conducted with 23 older adults receiving integrated care and support through “Embrace,” an integrated care model for community-living older adults that is based on the Chronic Care Model and a population health management model. Embrace is currently fully operational in the northern region of the Netherlands. Data analysis was based on the grounded theory approach.ResultsResponses of participants concerned two focus areas: 1) Experiences with aging, with the themes “Struggling with health,” “Increasing dependency,” “Decreasing social interaction,” “Loss of control,” and “Fears;” and 2) Experiences with Embrace, with the themes “Relationship with the case manager,” “Interactions,” and “Feeling in control, safe, and secure”. The prospect of becoming dependent and losing control was a key concept in the lives of the older adults interviewed. Embrace reinforced the participants’ ability to stay in control, even if they were dependent on others. Furthermore, participants felt safe and secure, in contrast to the fears of increasing dependency within the standard care system.ConclusionThe results indicate that integrated care and support provided through Embrace met the health and social needs of older adults, who were coping with the consequences of aging.     

Livelihood Experiences and Adherence to HIV Antiretroviral Therapy among Participants in a Food Assistance Pilot in Bolivia: A Qualitative Study

Introduction

Health and development organizations increasingly promote livelihood interventions to improve health and economic outcomes for people living with HIV (PLHIV) receiving treatment with antiretroviral therapy (ART). In-depth understanding about how PLHIV make labor decisions in the context of treatment for HIV – and treatment decisions in the context of their livelihoods – is essential to guiding intervention design and developing hypotheses for future research on livelihoods and ART. However, few studies have explored the perspectives of PLHIV regarding integration of livelihoods and ART in urban, resource-limited settings.

Methods

Qualitative interviews explored the livelihood experiences of food insecure ART patients in four Bolivian cities (n = 211). Topics included work-related barriers to ART adherence, HIV-related barriers to work, and economic coping mechanisms. Themes were identified using content coding procedures, with two coders to maximize reliability.

Results

Participants reported complex economic lives often characterized by multiple economic activities, including both formal and informal labor. They struggled to manage ART treatment and livelihoods simultaneously, and faced a range of interpersonal and structural barriers. In particular, lack of HIV status disclosure, stigma, and discrimination were highly salient issues for study participants and likely to be unique to people with HIV, leading to conflict around requesting time off for clinic visits, resentment from co-workers about time off, and difficulties adhering to medication schedules. In addition, health system issues such as limited clinic hours or drug shortages exacerbated the struggle to balance economic activities with HIV treatment adherence.

Conclusions

Improved policy-level efforts to enforce existing anti-discrimination laws, reduce HIV-related stigma, and expand health services accessibility could mitigate many of the barriers discussed by our participants, improve adherence, and reduce the need for livelihoods interventions.     

Nutritional Deficiencies,the Absence of Information and Caregiver Shortcomings: A Qualitative Analysis of Infant Feeding Practices in Rural China

MethodologyWe interviewed sixty caregivers participating in a large survey on child health and nutrition. We conducted three waves of interviews with children’s primary caregivers in seventeen rural villages within four nationally-designated poverty counties in the southern part of Shaanxi Province.ResultsThe qualitative analysis reveals that poor complementary feeding practices are common across our sample. Information gathered from our interviews suggests that complementary feeding practices are impeded by two constraints: absence of understanding topics related to infant health and nutrition under caregivers, as well as inadequate sources of information on these topics. Poverty does not appear to constrain child feeding practices.ConclusionOur results uncover lack of proper knowledge on infant and child nutrition among rural caregivers in China. This situation causes them to fail incorporating micronutrient rich foods in their children''s diet. Age-appropriate complementary feeding can stimulate children’s physical and cognitive development, but in its absence it leads to iron-deficiency anemia. We suggest that steps be taken to educate caregivers to improve complementary feeding of their infants and children.     

Health Care Professionals' Views on Discussing Sexual Wellbeing with Patients Who Have Had a Stroke: A Qualitative Study

Objectives

To examine the experiences of health care professionals discussing sexual wellbeing with patients who have had a stroke.

Design

In-depth qualitative interview study with purposive sampling and thematic analysis.

Participants

30 health care professionals purposively recruited to include different roles and settings along the stroke patient pathway in secondary and primary care.

Setting

Two hospitals and three general practices in the West Midlands, UK.

Results

Sexual wellbeing was a topic that participants did not raise with patients and was infrequently raised by patients. Barriers to raising discussion were on four levels: structural, health care professional, patient, and professional-patient interface. Barriers within these levels included: sexual wellbeing not present within hospital stroke policy; the perception that sexual wellbeing was not within participants'' role; participants'' concern that raising the issue could cause harm to the patient; and the views that discussion would be inappropriate with older people or unimportant to women. Resources exist to aid discussion but many participants were unaware of them, and most of those that were, did not use them routinely.

Conclusions

Participants lacked motivation, ownership, and the confidence and skills to raise sexual wellbeing routinely after stroke. Similar findings have been reported in cancer care and other taboo subjects such as incontinence potentially resulting in a sub-optimal experience for patients. Normalisation of the inclusion of sensitive topics in discussions post-stroke does not seem to need significant structural intervention and simple changes such as information provision and legitimisation through consideration of the issue in standard care policies may be all that is required. The experiences recounted by professionals in this study suggest that such changes are needed now.     

Intercultural Friendship: A Qualitative Study

Intercultural Friendship:. Qualitative Study. Elisabeth Gareis. Lanham, MD: University Press of America, 1995. 183 pp.     

Startle Responses in Motor Vehicle Accident Survivors: A Pilot Study

The aim of the present study was to investigate startle responses in motor vehicle accident (MVA) survivors to trauma-related, startle, and neutral sounds. Participants were 17 MVA survivors, 11 of whom participated in a controlled treatment study comparing cognitive-behavioral treatment (CBT) and supportive therapy (ST) versus a waitlist condition. Though participants differed significantly in their pretreatment clinical status and symptom severity, these differences were not reflected by group differences in EMG (at orbicularis oculi) to the stimuli at the initial assessment. Some cue-specificity was found, as all participants showed larger startle responses to trauma-related sounds, compared to startle and neutral sounds. At posttreatment, a significant reduction in EMG reactivity to all stimuli was observed in participants who received active treatment (either CBT or ST), compared to waitlist controls. The use of startle responses as a PTSD treatment outcome index is discussed.     

A Qualitative Study to Appraise Patients and Family Members Perceptions,Knowledge, and Attitudes towards Venous Thromboembolism Risk

Objective

This study aimed to examine perception, knowledge and concerns developed by patients and their family as regards venous thromboembolism (VTE) risk.

Methods

We conducted a qualitative study. Participants were: (1) patients with unprovoked VTE with either factor V Leiden mutation or G20210A prothrombin gene mutation or not; and (2) their first-degree relatives. Interviews took place mostly at Brest University Hospital. Participants produced narratives of the patient’s illness, stressing their perception of the disorder, its mechanisms, etiology, circumstances and risk factors. Interviews were audiotaped and transcribed verbatim. On an ongoing basis, central themes were identified and data from narratives were categorized by these themes.

Results

A total of ten patients and 25 first-degree relatives were interviewed. Analyses of patient’s narratives suggested 4 main themes: (1) concerns about initial symptoms and suspicion of VTE. The longer the duration of the initial phase, the more likely anxiety took place and persisted after diagnosis; (2) underestimation of potential life-threatening episode once being managed in emergency; (3) possible biographical disruption with inability to cope with the event; and (4) secondary prevention attitudes motivated by remains of the episode and favoring general prevention attitudes. Analyses of the first-degree relatives narratives suggested 3 main themes: (1) common interpretation of the VTE episode shared within the family; (2) diverse and sometimes confusing interpretation of the genetic status; and, (3) interpretation of clinical signs linked to VTE transmission within the family.

Conclusions

Construction of the risk of VTE is based on patient’s initial experience and shared within the family. Collection of narratives illustrates the gap between these perceptions and current medical knowledge. These results support the need to collect the perceptions of the VTE episode and its consequences, as a prerequisite to any health education process.     

A Longitudinal Study of Post-Traumatic Growth and Psychological Distress in Colorectal Cancer Survivors

The stability of post-traumatic growth over time and the relationship between post-traumatic growth and traditional distress outcomes remains unclear. We tracked post-traumatic growth in a population-based sample of colorectal cancer patients from soon after diagnosis to five years subsequently to assess the heterogeneity of a post-traumatic growth response to cancer over time and describe the simultaneous and longitudinal relationships between post-traumatic growth and psychological distress. 1966 colorectal patients who were five months post diagnosis were assessed six times over a five year period. There was considerable heterogeneity associated with both psychological distress and benefit finding scores over time. However, both for benefit finding and psychological distress, the variation in individual scores suggested an underlying positive linear trend and both lagged and lagged change components. Specifically, benefit finding and psychological distress are mutual leading indicators of each other. First, benefit finding served as a leading indicator of distress, in that increases in reported benefit finding from year to year predicted higher future increases in psychological distress. As well, in an inverse relationship, psychological distress served as a leading indicator of benefit finding, such that increases in reported distress from year to year predicted lower future increases in benefit finding. Post-traumatic growth may reflect patients coping efforts to enhance perceptions of wellbeing in response to escalating cancer–related threats, acting as harbinger of increasing trajectories of psychological distress. This explanation is consistent with a cognitive dissonance response in which threats to the integrity of the self then lead to a tendency to accentuate positive aspects of the self.     

Living With,Managing and Minimising Treatment Burden in Long Term Conditions: A Systematic Review of Qualitative Research

Background

‘Treatment burden’, defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions?

Methods and Findings

The search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed “adaptive treatment work” and “rationalised non-adherence” to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a “secret-act” which generated feelings of guilt and impacted on family and clinical relationships.

Conclusions

Treatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the ‘adhere-ability’ of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions.     

What Interrupts Suicide Attempts in Men: A Qualitative Study

Despite higher rates of suicide in men, there is a dearth of research examining the perspectives and experiences of males at risk of suicide, particularly in terms of understanding how interventions can be tailored to men’s specific needs. The current study aimed to examine factors assisting, complicating or inhibiting interventions for men at risk, as well as outlining the roles of family, friends and others in male suicide prevention. Thirty-five male suicide survivors completed one-to-one interviews, and forty-seven family and friends of male suicide survivors participated in eight focus groups. Thematic analysis revealed five major themes: (1) development of suicidal behaviours tends to follow a common path associated with specific types of risk factors (disrupted mood, unhelpful stoic beliefs and values, avoidant coping strategies, stressors), (2) men at risk of suicide tend to systematically misinterpret changes in their behaviour and thinking, (3) understanding mood and behavioural changes in men enables identification of opportunities to interrupt suicide progression, (4) distraction, provision of practical and emotional supports, along with professional intervention may effectively interrupt acute risk of harm, and (5) suicidal ideation may be reduced through provision of practical help to manage crises, and helping men to focus on obligations and their role within families. Findings suggest that interventions for men at risk of suicidal behaviours need to be tailored to specific risk indicators, developmental factors, care needs and individuals’ preferences. To our knowledge this is the first qualitative study to explore the experiences of both suicidal men and their family/friends after a suicide attempt, with the view to improve understanding of the processes which are effective in interrupting suicide and better inform interventions for men at risk.