Family Caregivers' Trajectories of Distress While Caring for a Person With Serious Mental Illness.

Serious mental illness (SMI) can significantly impact the lives of individuals and their families. These families often experience great emotional distress over time due to the early onset of SMI, which in turn leads to long-term trajectories and only partial recovery. However, we do not fully understand the emotional distress of family caregivers. Thus, our aim was to enrich the understanding of the lived experiences of family caregivers' emotional trajectories of distress while caring for persons with SMI. We conducted a secondary analysis using a hermeneutic approach to the narratives of seven family caregivers from a study on living with voices unheard by others. Participants' trajectories of emotional distress came forth as being thrust on an unpredictable, intensely worrisome, and indefinite journey. The following themes highlighted this tumultuous journey: fumbling in the dark trying to grasp the incomprehensible, "on your toes"-enduring unpredictability, facing different forms of fear, and battling waves of sadness and regret. Caregivers face multiple threats to their well-being and sometimes even to their health. Their distress appeared to vary according to their relationship with the person with SMI, whether they lived with the ill person, illness trajectory, and amount of violent or suicidal behavior. The results underscore the need for individualized and timely information, opportunities for dialogue with healthcare providers with and without the person with SMI, and inclusion in care planning. Caregivers who have experienced trauma, threats of violence, and rejection require special attention.

Balancing on life's ladder: A meta-ethnography of the existential experiences of siblings of children with complex care needs.

AIM: To synthesize and interpret existing qualitative research on the existential experiences of siblings of children with complex care needs. DESIGN: Noblit and Hare's interpretive meta-ethnography. METHODS: The study has been registered in the international prospective register for systematic reviews (PROSPERO). Noblit and Hare's 7-step procedure was followed and reciprocal translation was performed to analyse the data and develop a line of argument synthesis. DATA SOURCES: A comprehensive systematic literature search of five databases, along with extensive manual searches, was completed in November 2022. The final sample comprised 18 studies published between 2010 and 2022. RESULTS: A line of argument, expressed through an overarching metaphor, "balancing on life's ladder", illustrates the core findings of siblings' fluctuating experiences of existential well-being, and encapsulates four third-order themes: the emotional turmoil of siblings, interrupted family life, siblings strive to be themselves and siblings struggle to cope. CONCLUSION: Growing up with a sibling with complex care needs made children feel invisible, lonely and struggling to find the courage to cope. By adopting a lifeworld approach, nurses can become aware of healthy siblings' unmet needs. Future research is needed on how nurses can contribute to siblings' existential well-being, in primary - and secondary health care settings. IMPLICATIONS: The study provides insight into siblings' existential experiences and factors improving their well-being, enabling nurses to provide a more optimized lifeworld-led clinical practice. IMPACT: Healthcare, nursing education and practice should be informed by the knowledge of existential issues. Nurses are well-positioned to work alongside families to provide family-centered care. Our findings have implications for health policies tailored to the needs of children with chronically ill siblings. REPORTING METHOD: This review adheres to the Equator and improving reporting of meta-ethnography (eMERGe) guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution, because the data comprised previously published studies.

Filling the Void: The Role of Adult Siblings Caring for a Brother or Sister With Severe Mental Illness.

Little is known about the role of adult siblings' caregiver role within the context of mental illness. Therefore, our purpose was to explore how siblings narrate their experiences of being the main caregivers of a brother or sister with severe mental illness and how they cooperate with their ill sibling and their family of origin. We used a narrative hermeneutic approach and performed a secondary analysis of two interviews of siblings derived from a study of peoples' experiences of hearing voices. The findings illuminate the participants' multifaceted roles and how differently siblings might deal with the multiple challenges of caring for an ill sibling. The mediating role between their ill sibling and their family of origin to reestablish the broken family bonds was a significant aspect. Nurses' awareness of the important and multidimensional role of caregiving siblings can improve the provision of family support and promote involvement of siblings in the treatment of an ill family member.

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. TRIAL REGISTRATION: ClinicalTrials.gov NCT02338869. Registered on October 4, 2014.

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. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02338869 , registered 10/04/2014.

The effects of a dialogue-based intervention to promote psychosocial well-being after stroke: a randomized controlled trial.

OBJECTIVE: To evaluate the effect of a dialogue-based intervention targeting psychosocial well-being at 12 months post-stroke. DESIGN: Multicenter, prospective, randomized, assessor-blinded, controlled trial with two parallel groups. SETTING: Community. SUBJECTS: Three-hundred and twenty-two adults (⩾18 years) with stroke within the last four weeks were randomly allocated into intervention group (n = 166) or control group (n = 156). INTERVENTIONS: The intervention group received a dialogue-based intervention to promote psychosocial well-being, comprising eight individual 1-1½ hour sessions delivered during the first six months post-stroke. MAIN MEASURES: The primary outcome measure was the General Health Questionnaire-28 (GHQ-28). Secondary outcome measures included the Stroke and Aphasia Quality of Life Scale-39g, the Sense of Coherence scale, and the Yale Brown single-item questionnaire. RESULTS: The mean (SD) age of the participants was 66.8 (12.1) years in the intervention group and 65.7 (13.3) years in the control group. At 12 months post-stroke, the mean (SE) GHQ-28 score was 20.6 (0.84) in the intervention group and 19.9 (0.85) in the control group. There were no between-group differences in psychosocial well-being at 12 months post-stroke (mean difference: -0.74, 95% confidence interval (CI): -3.08, 1.60). The secondary outcomes showed no statistically significant between-group difference in health-related quality of life, sense of coherence, or depression at 12 months. CONCLUSION: The results of this trial did not demonstrate lower levels of emotional distress and anxiety or higher levels of health-related quality of life in the intervention group (dialogue-based intervention) as compared to the control group (usual care) at 12 months post-stroke.

Effect of a dialogue-based intervention on psychosocial well-being 6 months after stroke in Norway: A randomized controlled trial.

OBJECTIVE: To evaluate the effect of a dialogue-based intervention on psychosocial well-being 6 months after stroke. DESIGN: Multicentre, prospective, randomized controlled trial. SUBJECTS: Adults (aged ≥ 18 years) who had their first or recurrent stroke within the last month, were medically stable, had sufficient cognitive functioning to participate and understood and spoke Norwegian. METHODS: A total of 322 participants were randomly assigned to the intervention (n = 166) or control (n = 156) group. Participants in the intervention group received up to 8 individual sessions aimed at supporting the coping and life skills of stroke survivors in addition to usual care. The primary outcome was the proportion of participants with normal mood measured by the General Health Questionnaire-28 (GHQ-28). The secondary outcomes included health-related quality of life (Stroke and Aphasia Quality of Life Scale; SAQOL-39g), depression (Yale-Brown single-item questionnaire; Yale) and sense of coherence (SOC-13). RESULTS: After controlling for the baseline values, no significant benefit was found in the intervention group over the control group (odds ratio (OR): 0.898: 95% confidence interval (95% CI): 0.54-1.50, p = 0.680) 6 months post-stroke. CONCLUSION: Psychosocial well-being improved during the first 6 months after stroke in both arms of the trial, but no statistically significant benefit of the dialogue-based intervention was found compared with usual care.

Finding the Way Forward: The Lived Experience of People With Stroke After Participation in a Complex Psychosocial Intervention.

Stroke patients' well-being is threatened after stroke. A psychosocial intervention was developed for Norwegian stroke patients living in the community. Eight individual sessions between people with stroke and a trained health care professional were conducted 1 to 6 months post-stroke with one group of participants and 6 to 12 months post-stroke with another group. Subsequently, 19 of these stroke patients were interviewed to gain an in-depth understanding of their lived experience of the influence of the intervention on their adjustment process. Interview texts were analyzed using Ricoeur's interpretation theory. Two participants did not personally find the intervention useful. The remaining participants greatly appreciated dialogues with the empathetic intervention personnel, feeling free to discuss their fears and worries. The intervention raised these participants' awareness of their needs and resources. They were guided to resume their everyday life and adopt a future-oriented attitude. The intervention facilitated their meaning-making endeavors and post-stroke adjustment.

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

BACKGROUND: Evaluation of complex interventions should include a process evaluation to give evaluators, researchers, and policy makers greater confidence in the outcomes reported from RCTs. Implementation fidelity can be part of a process evaluation and refers to the degree to which an intervention is delivered according to protocol. The aim of this implementation fidelity study was to evaluate to what extent a dialogue-based psychosocial intervention was delivered according to protocol. A modified conceptual framework for implementation fidelity was used to guide the analysis. METHODS: This study has an explanatory, sequential two-phase mixed methods design. Quantitative process data were collected longitudinally along with data collection in the RCT. Qualitative process data were collected after the last data collection point of the RCT. Descriptive statistical analyses were conducted to describe the sample, the intervention trajectories, and the adherence measures. A scoring system to clarify quantitative measurement of the levels of implementation was constructed. The qualitative data sources were analyzed separately with a theory-driven content analysis using categories of adherence and potential moderating factors identified in the conceptual framework of implementation fidelity. The quantitative adherence results were extended with the results from the qualitative analysis to assess which potential moderators may have influenced implementation fidelity and in what way. RESULTS: The results show that the core components of the intervention were delivered although the intervention trajectories were individualized. Based on the composite score of adherence, results show that 80.1% of the interventions in the RCT were implemented with high fidelity. Although it is challenging to assess the importance of each of the moderating factors in relation to the other factors and to their influence on the adherence measures, participant responsiveness, comprehensiveness of policy description, context, and recruitment appeared to be the most prominent moderating factors of implementation fidelity in this study. CONCLUSIONS: This evaluation of implementation fidelity and the discussion of what constitutes high fidelity implementation of this intervention are crucial in understanding the factors influencing the trial outcome. The study also highlights important methodological considerations for researchers planning process evaluations and studies of implementation fidelity. TRIAL REGISTRATION: ClinicalTrials.gov , NCT02338869; registered 10/04/2014.

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

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).

"Trapped in an Empty Waiting Room"-The Existential Human Core of Loneliness in Old Age: A Meta-Synthesis.

Loneliness in old age has a negative influence on quality of life, health, and survival. To understand the phenomenon of loneliness in old age, the voices of lonely older adults should be heard. Therefore, the purpose of this meta-synthesis was to synthesize scientific studies of older adults' experiences of loneliness. Eleven qualitative articles that met the inclusion criteria were analyzed and synthesized according to Noblit and Hare's meta-ethnographic approach. The analysis revealed the overriding meaning of the existential human core of loneliness in old age expressed through the metaphor "trapped in an empty waiting room." Four interwoven themes were found: (a) the negative emotions of loneliness, (b) the loss of meaningful interpersonal relationships, (c) the influence of loneliness on self-perception, and (d) the older adults' endeavors to deal with loneliness. The joint contribution of family members, health care providers, and volunteers is necessary to break the vicious circle of loneliness.

Living an unfamiliar body: the significance of the long-term influence of bodily changes on the perception of self after stroke.

The aim of this study is to illuminate the significance of the long-term influence of bodily changes on the perception of self after stroke by means of narrative interviews with 23 stroke survivors. A phenomenological-hermeneutic approach inspired by the philosophy of Merleau-Ponty and Ricoeur is the methodological framework. Zahavi's understanding of the embodied self and Leder's concept of dys-appearance along with earlier research on identity guide the comprehensive understanding of the theme. The meaning of bodily changes after stroke can be understood as living with an altered perception of self. Stroke survivors perceive their bodies as fragile, unfamiliar and unreliable and tend to objectify them. The weak and discomforting body that 'cannot' demands constant, comprehensive awareness to keep itself in play. These long-term and often permanent consequences of bodily weakness may turn stroke survivors' intentionality inwards, away from external activities and projects and relationships with others. Negative judgements from others are added to lost roles and positions and threaten the vulnerable self. Stroke survivors try to regain familiarity with their body by their life-long project of testing its boundaries. Mastering important tasks helps them strengthen their self-concept. Health care workers should be aware of the embodied self and engage in long-term dialogues with stroke survivors to strengthen positive perceptions of body and self. More research is needed to understand destructive post-stroke phenomena such as fatigue and pain and to find effective methods to help stroke survivors regain wholeness of body and self.

The long-term experience of family life after stroke.

Stroke is a life-threatening and disabling illness known to have a significant impact on families. The purpose of this study was to illuminate the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital and parent-child relationships. Thirty-seven narrative interviews were conducted with stroke survivors and their spouses and adult children who were minors at onset of the illness. A qualitative approach inspired by Gadamer's hermeneutic and van Manen's phenomenological understanding of lived experience was used. The analysis revealed four themes: the family as a lifebuoy, absent presence, broken foundations, and finding a new marital path. Lack of communication and altered roles and relationships endangered marital equilibrium and parent-child relationships after stroke. This study highlighted the need for professional family support as families were unprepared for the life changes that occurred. Nurses and other healthcare workers should examine family relationships and communication patterns and view the family as a unit composed of unique persons with different needs. Further research on the experiences of stroke survivors' children seems urgent.