Younger stroke survivors' experiences of family life in a long-term perspective: a narrative hermeneutic phenomenological study

The psychosocial consequences following a stroke are known to be challenging, influencing the stroke survivors’ ability to participate in and carry out the taken-for-granted roles and activities in family life. This study explored how living with the consequences of stroke impacted on family life in the late recovery phase, that is, six months or more after stroke onset. Twentytwo stroke survivors aged 20–61 years were interviewed in-depth six months to nine years after stroke onset. The interviews were analyzed applying a narrative, hermeneutic phenomenological approach. The findings revealed challenges that varied with time, from an initial struggle to suffice in and balance the relationships and roles within the family early after the stroke, towards a more resigned attitude later on in the stroke trajectory. The struggles are summarized in two main themes: “struggling to reenter the family” and “screaming for acceptance.” Nonestablished people living with stroke and stroke survivors in parental roles seem to be particularly vulnerable. Being provided with opportunities to narrate their experiences to interested and qualified persons outside the home context might be helpful to prevent psychosocial problem

Å komme til seg selv – i bevegelse, sansning og forståelse

I dette essayet fortolkes Trygve Braatøys tanker om nervøse og psykosomatiske lidelser i lys av Løgstrups sansefilosofi. Braatøy beskrev muskulære belastninger som vevd sammen med følelsesmessige belastninger, og bevissthet som kroppslig forankret. I hans tenkning er muskulære konflikter et særtrekk ved slike lidelser, og forbundet med regulering av overveldende inntrykk som binder personen i møte med verden. Løgstrup la ut menneskers universelt gitte grunnvilkår, og mente at den menneskelige tilværelse er sammenvevd med eller felt inn i omgivelsene i pust og ernæring, men også i sansningen. Og sansningen er mer enn nevrofysiologiske prosesser, den er vår klangbunn, stemt av inntrykk. Som fenomen rommer sansningen både den som sanser og det som sanses. Med Løgstrups sansefilosofi som tolkningsperspektiv i møte med Braatøys tenkning drøftes bevissthet som kroppslig forankret, med distinksjon mellom bevissthet i sansning og bevissthet i forståelse. I denne fortolkningen fremheves kroppslig forankret bevissthet både som klangbunn stemt av livets erfaringer, og samtidig som tilstedeværelse her og nå, i varierende grad av åpenhet

Unmet information and communication needs in the intermediate recovery from coronary artery bypass surgery

The original publication is available at: http://www.artikel.nu/Bob/GetBob.aspx?bobID=3312Coronary artery bypass graft (CABG) is a common surgical procedure for CHD (1). Compared to less invasive treatments, such as lifestyle modifications, or percutaneous transluminal coronary angioplasty (PTCA), undergoing CABG is a more challenging experience (2) that influences well-being before and after surgery (3). CABG convalescents are expected to incorporate sophisticated regiments into their daily lives as they manage their own recovery. During preparation for surgery and the few days of hospitalization after surgery, the convalescent receives large quantities of information: verbal and written. This includes information about the procedure, the wounds on the sternum and legs, the sternum incision, and specifically, temporary activity restrictions during the immediate recovery period. During the immediate recovery, the convalescent’s capacity to comprehend, process, and incorporate new information is most likely constrained, and their attention is not paid towards learning and information processing (4). The amount and timing of given information are significant, and capacity to comprehend can influence the ‘sense of coherence’ (5). Much of the pre- and post-surgery information explains the procedure, specifically self-monitoring in the immediate recovery and recommended lifestyle changes, such as smoking cessation, ‘healthy eating’ and ‘regular exercise’ (6). Lifestyle changes are usually required to fully benefit from CABG and to reduce symptoms that may require additional treatment. Convalescents may experience anxiety and symptoms of depression in this early recovery period (1,7). In addition, ‘the heart’ carries a significant, existentially oriented meaning to many of us. The capacity to comprehend; process the relevance of or evaluate the usefulness of provided information can be inhibited (1,4,7). Hence, convalescents can report information dearth and a lack of information following CABG (8). During the recovery from CABG, convalescents monitor their own healing and are encouraged to adopt sophisticated regiments for secondary prevention as part of their daily routines. Recovery experiences alter during recovery (3,9). Women report setbacks from unexpected muscular pain in the chest and problems with maintaining recommended activity levels after surgery (10,11,12). Men can experience the recovery process more smoothly than women, and they attribute this to family support, especially from a wife, partner or significant other (10). According to Antonovsky’s salutogenic model (5,13), the individual’s experience of comprehensibility, manageability and meaningfulness is a core premise to handling every day situations. A convalescent’s ‘sense of coherence’ is likely to influence his ability to engage in recovery management on a daily basis, as he incorporates recommendations for secondary prevention of CHD. Acknowledging that CABG recovery may be challenging, this study was theoretically inspired by attention, patient education (4) and ‘sense of coherence’ (5). We have only identified previous studies setting out to measure SOC as an aspect of assessment of quality of life studies following heart surgery. To the best of our knowledge, there are no previous studies applying this construct to elaborate challenges the convalescents are facing in the intermediate recovery period. To better understand recovery challenges and information needs during CABG recovery, we need to elicit the CABG convalescents’ information and communication needs in the intermediate recovery period

Young and midlife stroke survivors’ experiences with the health services and long-term follow-up needs

-The aim of this qualitative study was to explore young and midlife stroke survivors’ experiences with the health services and to identify long-term follow-up needs. Sixteen participants from two cohorts were interviewed in-depth. The interviews were analyzed applying a hermeneuticYphenomenological analysis. The participants struggled to gain access to follow-up health services. They felt that whether they were systematically followed up was more coincidental than planned. Young and midlife stroke survivors thus appear vulnerable to falling outside the follow-up system. Those participants who received some follow-up care perceived it as untailored to their specific needs. To be considered supportive, the follow-up programs must be in line with their long-term needs, take into account their particular challenges as young and midlife stroke survivors, and be planned in close collaboration with the individual patient. To secure systematic and follow-up health services tailored to the individual, knowledgeable and committed healthcare professionals should play a prominent role within the community health services

Psychosocial Well-Being in Persons with Aphasia Participating in a Nursing Intervention after Stroke

This article can also be read here: http://www.hindawi.com/journals/nrp/2012/568242/The psychosocial adjustment process after stroke is complicated and protracted. The language is the most important tool for making sense of experiences and for human interplay, making persons with aphasia especially prone to psychosocial problems. Persons with aphasia are systematically excluded from research projects due to methodological challenges. This study explored how seven persons with aphasia experienced participating in a complex nursing intervention aimed at supporting the psychosocial adjustment process and promoting psychosocial well-being. The intervention was organized as an individual, dialogue-based collaboration process based upon ideas from “Guided self-determination.” The content addressed psychosocial issues as mood, social relationships, meaningful activities, identity, and body changes. Principles from “Supported conversation for adults with aphasia” were used to facilitate the conversations. The data were obtained by participant observation during the intervention, qualitative interviews 2 weeks, 6 months, and 12 months after the intervention and by standardized clinical instruments prior to the intervention and at 2 weeks and 12 months after the intervention. Assistance in narrating about themselves and their experiences with illness, psychological support and motivation to move on during the difficult adjustment process, and exchange of knowledge and information were experienced as beneficial and important by the participants in this study

Implementation fidelity in a complex intervention promoting psychosocial well-being following stroke: an explanatory sequential mixed methods study

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Nurses’ and occupational therapists’ experiences of conducting a home-based psychosocial intervention following stroke: a qualitative process evaluation

Background: Persons with stroke are susceptible to psychosocial problems, and express disappointment at how health care professionals fail to meet their psychosocial needs following discharge to home. The responsibility of nurses and occupational therapists in stroke rehabilitation is to assist the persons and their families during the recovery and adjustment process. A home-based dialogical intervention aiming to enhance psychosocial support was therefore developed and tested in a randomized controlled trial. This study is a part of the process evaluation conducted alongside the trial. The aim was to explore the nurses’ and occupational therapists’ experiences of conducting the intervention. Methods: Eighteen nurses and four occupational therapists participated in six focus groups to explore their experiences when providing the intervention. The themes discussed in the focus groups were the aspects that facilitated the delivering of the intervention and the challenges they encountered during the study period. The interviews were analysed using qualitative content analysis. Results: The analysis generated two themes. The theme Developing a supportive relationship to facilitate the adjustment process following stroke had two subthemes: Getting personally involved and Handling challenges. This theme reveals how the nurses and occupational therapists experienced their relationship with the persons with stroke and potential threats which challenged them while conducting the intervention. The theme Developing professional skills in providing psychosocial support had two subthemes: Becoming confident in conducting dialogues and Integrating psychosocial topics. This theme reveals the aspects that the nurses and occupational therapists perceived as facilitating the development of their professional skills in conducting the dialogues. Conclusion: Delivering the psychosocial intervention was perceived as deeply meaningful and increased the nurses’ and occupational therapists’ understanding of how to support stroke survivors to live with the consequences of stroke. However, balancing the professional and the personal relationship was challenging. A basic educational programme, training, supervision and having dedicated time were crucial elements to instil confidence in professionals conducting theme-based dialogues to promote post-stroke psychosocial well-being. Individual clinical experience and knowledge of stroke care were considering important to enable professionals to integrate psychosocial rehabilitation into community health care.publishedVersio

Perceived study-induced influence on the control group in a randomized controlled trial evaluating a complex intervention to promote psychosocial well-being after stroke: a process evaluation

Background A commonly applied control condition in trials evaluating complex interventions in rehabilitation research is “usual care.” The main challenge is to ensure that the control group receives genuine usual care as delivered in everyday clinical practice. The assessment interviews and dialogues with the data collectors may influence the control group participants’ reflections on their condition and adjustments. This represents a threat to the internal validity of the trial. Thus, the aim of this study was to explore the perceived study-induced influence of assessment interviews on the adjustment of the members of a control group in a randomized clinical trial. The aim of the trial was to test a dialogue-based psychosocial intervention aiming at promoting the psychosocial well-being and adjustment of stroke survivors. Methods Fifteen participants in the control group of a multicenter stroke rehabilitation trial participated in narrative semi-structured interviews. Ricoeur’s interpretation theory guided the analysis. Results The perceived study-induced influence of the assessment interviews on the adjustment process of members of the control group varied considerably. The results demonstrated that the assessment interviews facilitated some participants’ feelings of control and their ability to cope. Other participants’ statements indicate that they relied on their existing personal capacity to cope and adjust and that the assessment interviews did not make any difference either on their coping ability or on their process of adjustment. Five themes were identified that described the perceived study-induced influence of the assessment interviews in the control group. The themes illustrated that the assessments served as a safety net, enhanced awareness and understanding, encouraged seeking support, allowed the opportunity to vent disappointment, or did not make any difference either way. Conclusions RCT assessment interviews may influence the adjustment process and represent a serious problem in measuring interventions over time in trials of complex interventions in rehabilitation research. To uphold rigor and stringency, the usual care control conditions should be thoroughly assessed and described. Informing participants only about the treatment they were allocated to receive might counteract the potential to dilute the difference between the two arms of the trial

Promoting psychosocial well-being following stroke: study protocol for a randomized, controlled trial

Source at https://doi.org/10.1186/s40359-018-0223-6.Background: Stroke is a major public health threat globally. Psychosocial well-being may be affected following stroke. Depressive symptoms, anxiety, general psychological distress and social isolation are prevalent. Approximately one third report depressive symptoms and 20% report anxiety during the first months or years after the stroke. Psychosocial difficulties may impact significantly on long-term functioning and quality of life, reduce the effects of rehabilitation services and lead to higher mortality rates. The aim of the study is to evaluate the effect of a previously developed and feasibility tested dialogue-based psychosocial intervention aimed at promoting psychosocial well-being and coping following stroke among stroke survivors with and without aphasia. Methods: The study will be conducted as a multicenter, randomized, single blind controlled trial with one intervention and one control arm. It will include a total of 330 stroke survivors randomly allocated into either an intervention group (dialogue-based intervention to promote psychosocial well-being) or a control group (usual care). Participants in the intervention group will receive eight individual sessions of supported dialogues in their homes during the first six months following an acute stroke. The primary outcome measure will be psychosocial well-being measured by the General Health Questionnaire (GHQ). Secondary outcome measures will be quality of life (SAQoL), sense of coherence (SOC), and depression (Yale). Process evaluation will be conducted in a longitudinal mixed methods study by individual qualitative interviews with 15–20 participants in the intervention and control groups, focus group interviews with the intervention personnel and data collectors, and a comprehensive analysis of implementation fidelity. Discussion: The intervention described in this study protocol is based on thorough development and feasibility work, guided by the UK medical research council framework for developing and testing complex interventions. It combines classical effectiveness evaluation with a thorough process evaluation. The results from this study may inform the development of further trials aimed at promoting psychosocial well-being following stroke as well as inform the psychosocial follow up of stroke patients living at home. Trial registration: NCT02338869; registered 10/04/2014 (On-going trial).</p

Work-aged stroke survivors’ psychosocial challenges and follow-up needs. A qualitative exploratory study

Background Suffering a stroke in the age span between 18-67 years means being threatened by a serious illness during a productive phase of life. During this phase, people usually focus on education, launching a career and/or establishing a family, and the role commitments are many and demanding. Suffering a stroke during this phase of life might give rise to different psychosocial challenges and problems compared to suffering a stroke later in life. A number of psychosocial challenges have been identified following a stroke. Research has suggested that younger stroke survivors are dissatisfied with their life as a whole. However, little knowledge is available concerning how a stroke influences life for younger stroke survivors. The lack of research concerning this topic made it necessary to investigate more in depth how a stroke impacts the lives of younger patients both from a short-term and long-term perspective. Aim The overall aim of this study was to explore work-aged stroke survivors’ psychosocial challenges and psychosocial follow-up needs. Design and method This doctoral thesis grew out of a larger study that aimed to develop a dialogue-based psychosocial nursing intervention to promote psychosocial well-being following a stroke. The specific focus in this study is the psychosocial challenges of younger, work-aged stroke survivors. The thesis consists of four sub-studies exploring experiences with the consequences of stroke in two different groups of work-aged stroke survivors. The first two studies focus on experiences among participants in the dialogue-based nursing intervention post-stroke. The last two studies focus on work-aged stroke survivors’ experiences of living with a stroke over a longer perspective, particularly highlighting their encounters with the healthcare services and their experienced psychosocial follow-up needs. Twenty-five stroke survivors aged 33-89 years participated in study I. The specific aim of this study was to evaluate the content, structure and process as well as the experienced usefulness of participating in the intervention from the patients’ point of view using a qualitative content analysis method. Fourteen of the participants from study I, aged 33-66 years, were included in study II. The aim of this study was to illuminate the psychosocial challenges the work-aged participants thematised during and after participating in the dialogue-based intervention. The study had a hermeneutic phenomenological approach. To expand the knowledge concerning the specific challenges and psychosocial follow up needs among younger stroke survivors in a longer perspective, a group of work-aged stroke survivors who had not participated in the intervention were included in study III. This study focused on how a stroke impacts family life from the stroke survivors’ view, six months or more after the stroke. Twenty-two stroke survivors aged 20-61 years participated in this study which had a hermeneutic phenomenological approach. In study IV, eight participants included in study II and eight participants included in study III participated in follow-up interviews one year after they were interviewed in the initial studies. The aim of study IV was to explore the work-aged stroke survivors’ experiences with health services and their experienced long-term follow-up needs. The sixteen participants participating in this hermeneutic phenomenological study were aged 21-67 years. Main findings The participants experienced the content, structure and process of the dialogue-based nursing intervention as relevant and participation as an important support the first six months after stroke onset. The evaluation of the intervention gave valuable insights into aspects that require further consideration and development of the intervention before launching a randomised controlled trial (study I). Life as a work-aged stroke survivor was experienced as challenging and created a risk of becoming marginalised in family life and work life the first year following the stroke (study II). Living with the consequences from the stroke was found to pose significant and multifaceted challenges to family life even many years after the stroke. However, the challenges varied with time, from an initial struggle to suffice in and balance the relationships and roles within the family early after the stroke, towards a more resigned attitude later on in the stroke trajectory (study III). Non-established stroke survivors living alone seemed to be particularly vulnerable as they are often isolated in their homes. In addition, stroke survivors in parental roles were also found to be vulnerable in their attempt to fulfil their roles as mothers and fathers (study III). The study participants struggled to gain access to follow-up services which were described as coincidental and untailored to the younger stroke survivors’ specific needs. The younger stroke survivors thus appeared vulnerable to falling outside the follow-up system (study IV). Conclusion Understanding and managing life following a stroke is demanding and the daily demands are substantial among people aged 18-67 years. This calls for individual support and follow-up adjusted the stroke survivors’ phase in life and specific situation. The psychosocial challenges generate a need to narrate their experiences and a need for tailored follow-up support in order to meet the demands of family life and work life. Being provided opportunities to narrate their experiences outside the home context might be helpful to prevent psychosocial problems. To be experienced as supportive, the follow-up program must be knowledge-based and address both the short-term and long-term needs. Furthermore, it must be carried out in close collaboration with the stroke survivor