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