The bereavement model,stroke and rehabilitation: a critical analysis of the use of a psychological model in professional practice

Purpose:?This pilot study aimed to explore with stroke survivors, carers and professionals, the impact of stroke and the process of recovery and rehabilitation. One theme that emerged in interviews with professionals was their use of the bereavement model in relation to recovery from stroke. The purpose of this paper is to explore the ways in which professionals use the bereavement model to explain and manage the rehabilitation of stroke survivors.

Method:?A person-centred study using qualitative research methods, semi structured interviews and self report diaries to explore with stroke survivors and carers the impact of stroke on their lives. Twenty-five interviews with stroke survivors, 23 individual or with carers and seven in two focus groups. Evidence from four self- report diaries provided more detailed examples of the everyday experiences of the survivors. A set of parallel interviews involving 17 professionals involved in the care and support of such individuals, nine individual and one group interview involving a community rehabilitation team.

Results:?The bereavement model can be identified in the literature aimed at professionals, and was evident in some professional accounts of stroke but was absent from survivors' and carers' accounts of stroke. In over half the interviews, professionals made reference to the bereavement model to explain a process of loss and readjustment. While survivors in their accounts of life after a stroke did acknowledge the ways in which stroke disrupted every-day life and resulted in losses and disabilities, their perception of such losses and disruption was shaped by the context of their every-day life. Most survivors sought to actively manage their recovery by setting goals. They wanted professional support in achieving their goals. The bereavement model appeared to be used by professionals in situations where there was a conflict over goals and professionals felt that survivors had become ‘stuck’ and their goals unrealistic.

Conclusions:?Following stroke, people try to make sense of what has happened and normalize their lives by setting themselves goals to progress towards recovery. It is important that professionals communicate effectively so that their interventions are grounded in and support the survivors' goals and strategies.     

Changing Selves: a Grounded Theory Account of Belonging to a Self‐advocacy Group for People with Intellectual Disabilities1

Purpose To explore the experience of belonging to a self‐advocacy group for people with intellectual disabilities, and how membership of such a group impacts on individual members. Methods Eight people with intellectual disabilities, who belonged to a self‐advocacy group for at least 6 months, were interviewed about their experiences of membership. A grounded theory approach was used to generate and analyse the interview data. Results A model of the impact of belonging to a self‐advocacy group for people with intellectual disabilities on individual members' self‐concept is developed. The model proposes that participants' self‐concept changes as a result of group membership and that this process of change involves six key categories: joining the group; learning about and doing self‐advocacy; becoming aware of group aims and identity; experiencing a positive social environment; identifying positive change in self‐concept and seeing the future of self and group as interlinked. Conclusion Membership of a self‐advocacy group for people with intellectual disabilities changes the self‐concept of participants. The processes surrounding these changes have important implications for self‐advocacy groups both, in recruitment and in supporting group members.     

Upper limb recovery after stroke: The stroke survivors' perspective

Purpose.?This study investigated stroke survivors' perspective of upper limb recovery after stroke. The aim was to determine factors other than medical diagnosis and co-morbidities that contribute to recovery. The objectives were to explore how stroke survivors define recovery, identify factors they believe influence recovery and determine strategies used to maximize upper limb recovery.

Method.?A qualitative study consisting of three focus groups and two in-depth interviews was conducted with stroke survivors (n = 19) and spouses (n = 9) in metropolitan, regional and rural Queensland, Australia. Data were analysed using principles of grounded theory.

Results.?Stroke survivors maximize upper limb recovery by ‘keeping the door open’ a process of continuing to hope for and work towards improvement amidst adjusting to life with stroke. They achieve this by ‘hanging in there’, ‘drawing on support from others’, ‘getting going and keeping going with exercise’, and ‘finding out how to keep moving ahead’.

Conclusions.?This study provides valuable insight into the personal experience of upper limb recovery after stroke. It highlights the need to develop training strategies that match the needs and aspirations of stroke survivors and that place no time limits on recovery. It reinforces the benefits of stroke support groups and advocates their incorporation into stroke recovery services. These findings can be used to guide both the development and evaluation of stroke survivor centred upper limb training programmes.     

Life experiences after stroke among Iranian stroke survivors

DALVANDI A., HEIKKILÄ K., MADDAH S.S.B., KHANKEH H.R. & EKMAN S.L. (2010) Life experiences after stroke among Iranian stroke survivors. International Nursing Review 57 , 247–253 Background: Stroke is a major cause of disability worldwide. It is a life‐threatening and life‐altering event, which leaves many physical and mental disabilities, thus creating major social and economic burdens. Experiencing a stroke and its aftermath can be devastating for patients and their families. In Iran, many services are not available for those who lack property; this may result in many difficulties and long‐term problems for stroke survivors and their family members who are usually the main caregivers in Iranian cultural. Despite its effect on their lives, little is known about how the survivors perceive stroke in the Iranian context, therefore, knowing more about this process may enhance problem identification and problem solving. Aim: To illuminate how stroke survivors experience and perceive life after stroke. Method: A grounded theory approach was recruited using semi‐structured interviews with 10 stroke survivors. Findings: The survivors perceived that inadequate social and financial support, lack of an educational plan, lack of access to rehabilitative services, physical and psychological problems led them to functional disturbances, poor socio‐economical situation and life disintegration. The core concept of life after stroke was functional disturbances. Conclusions: The study shows the need to support the stroke survivors in their coping process with their new situation by providing appropriate discharge plans, social and financial support, social insurances and training programmes for the stroke survivors and their families.     

Art after stroke: the qualitative experience of community dwelling stroke survivors in a group art programme

Purpose.?This study aimed to qualitatively explore the experience of community dwelling stroke survivors' participation in an arts health group programme and possible health benefits to quality of life (QOL) and wellbeing.

Method.?Sixteen participants were conveniently sampled to participate in two group art programmes, both held weekly over a period of 8 weeks. Qualitative data were collected through two focus groups (n == 9) and individual interviews (n == 11). Qualitative analysis of the data was undertaken, using a grounded theory approach incorporating constant comparison.

Results.?Age ranged from 43 to 81 years. Four themes emerged including: experience of stroke, benefit of art, benefit for self and benefit of group experience. Participants experienced improved confidence, self-efficacy, QOL and community participation through involvement in an arts health programme.

Conclusions.?The implementation of an arts health programme after stroke made a substantial impact on well-being and QOL. Results from this study are promising and this is a model that warrants rigorous investigation regarding the impact of art on QOL and wellbeing. This study also highlighted the need for community resources to address community re-integration and service provision in the form of age appropriate, activity-based groups for stroke survivors.     

Transformation of the Relationship: The Experience of Primary Support Persons of Stroke Survivors

The primary support persons (PSPs) of stroke survivors are faced with many challenges as they help reintegrate the stroke survivor's life, as well as their own. Because it often is the PSP with whom nurses negotiate goals, teach, and counsel, it is important for nurses to understand the stroke experience from the PSP's perspective. The purpose of this study was to investigate the quality, or nature, of life as experienced by PSPs of stroke survivors. The qualitative design for this study was an existential‐phenomenological approach, focusing on meaning. This involved an analysis of in‐depth phenomenological interviews of 10 PSPs of stroke survivors. The experience of being a PSP of a stroke survivor is one grounded in the relationship in time. From this ground emerges themes of fragility, vigilance, and loss/responsibility. These themes help define the essence of the experience, which is a transformation of the relationship. The findings provide nurses with an understanding of the PSP's experience, and thus a foundation upon which to provide holistic care for the stroke survivor and family.     

The experience of partners of young stroke survivors

Purpose. Stroke is a health crisis that can prompt a re-organisation of lives and impact on family caregivers. This study extends existing findings by investigating the experiences of partners of young stroke survivors (under 60 years old) two to seven years post-stroke.

Method. Semi-structured interviews with seven partners were analysed using interpretative phenomenological analysis.

Results. Two super-ordinate themes emerged, ‘Adjustment’ and ‘Coping’. The first consists of two subordinate themes; ‘Changed lives’ describes the way in which the impact of the stroke was played out in many areas of the partners lives, whereas ‘Enduring effects on the self’ highlights the psychological consequences of these changes. ‘Coping’ refers to the ways in which partners adapt to life post-stroke.

Conclusions. The study extends knowledge by demonstrating the enduring effects of caring on domestic tasks, relationship with survivor, family roles, employment and social life. Trauma from the stroke event and its immediate aftermath persisted over years. Caring impacted on the partners' sense of self and identity, and positive as well as negative effects were noted. Coping was primarily problem-focussed and previous experiences, social comparison and social support were important. Implications for community support services are discussed.     

An evaluation of students' perceptions of a college-based programme that involves patients, carers and service users in physiotherapy education

Background . There is little evidence of the integration of UK physiotherapy university education into clinical practice, and some students say that they are not adequately prepared for professional life. This was addressed by a college‐based programme involving patients, carers and service users as facilitators of learning to enhance the partnership between health professionals and patients. Purpose . This programme has been running for 2 years, and this paper is an evaluation of the students' perceptions of it, appraising the outcomes of their learning in order to discover the ways in which it can be enhanced, improved or changed. Methods . A grounded theory approach utilizing focus groups and semi‐structured interviews was conducted. Three focus groups representing the higher educational levels 4–6 in pre‐registration physiotherapy were carried out. Following the analysis of the focus groups, seven interviews reflecting the three educational levels were conducted in order to explore in greater depth the findings from the focus groups. The analysis of the focus groups and the subsequent interviews were carried out in accordance with a grounded theory framework. Results . The students perceived the programme as a context in which to think how their learning needs could be met within a ‘real’ framework but on their own territory. Equally, it created feelings of anxiety at being given such an open forum that created a challenge to their communication skills. Many expressed a wish for a more explicit mentoring–learning environment. They also perceived a tension between the technical–rational demands of academia and social practice and a need to view this as a basis for critical appraisal and self‐awareness. Conclusion . This programme appeared to be integral to the students' development as future physiotherapists. Copyright © 2011 John Wiley & Sons, Ltd.     

From political correctness to reflexivity: A norm‐critical perspective on nursing education

Education is important in shaping professional identity, including how one approaches norms and normalisation. In the analysis presented in this study, nursing students' own constructions of norms and normality from the outlook of their education are highlighted and problematised. To deepen the understanding of these matters, the aim of this study was to explore constructions of norms and normality among students in nursing education. Students studying in a nursing department at a Swedish university college were approached and asked to consider open survey questions targeting their views on norms and normality; 154 of them replied. After a discourse analytic approach to the data, we could see how the students constructed norms and normality as (a) instrumental instructions, consisting of easy‐to‐digest statements grounded in the profession's obvious moral and ethical values, (b) limiting and frustrating obstacles for personal freedom that were important to challenge, (c) rules to be obeyed for the stability of society and (d) a matter of reflection, with each individual being responsible for understanding differences in norms, perspectives and opinions. We conclude that nursing education would benefit from norm‐critical perspectives, problematising students' own positions to norms, power and privilege.     

The influences of social support and emotion regulation strategies on posttraumatic growth of burn survivors: A cross-sectional study in Linyi,China

This cross-sectional study aimed to test the influences of social support and emotion regulation strategies (cognitive reappraisal and expression suppression) on burn survivors' posttraumatic growth. A convenience sampling method was adopted to recruit 130 burn survivors from the department of burns and plastic surgery of a public hospital in Linyi, China. Data were collected using self-reported questionnaires on social support, emotion regulation strategies, and posttraumatic growth. Structural equation modeling was performed to explore the associations among social support, emotion regulation strategies, and posttraumatic growth in burn survivors. The results showed that social support positively affected cognitive reappraisal and negatively affected expression suppression. Furthermore, it positively affected posttraumatic growth. Moreover, social support indirectly influenced posttraumatic growth through cognitive reappraisal, which implies that cognitive reappraisal played a partial mediating effect in the relationship between social support and posttraumatic growth. These findings provide new insights into the predictors of posttraumatic growth. Cognitive reappraisal and social support should be taken into account to improve burn survivors' posttraumatic growth.     

Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors

Little is known about the burden of cross‐cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall‐sense‐of‐burden‐from‐caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.     

Factors predicting the health status of caregivers of stroke survivors: A cross‐sectional study

In this cross‐sectional study, we aimed to determine factors influencing the health status of caregivers of stroke survivors. A total of 126 caregivers of stroke survivors were recruited from three outpatient clinics in Thai Nguyen National General Hospital, Vietnam, from November 2016 to March 2017. Data were collected through six instruments: a demographic questionnaire, the Modified Barthel Index, the Zarit Burden Interview Scale, the Multidimensional Scale of Perceived Social Support, the Family Caregiver Conflict Scale, and the Short Form‐36 Health Survey. Stepwise multiple regression was employed to analyze the data. Caregiver burden, patient's functional status, caregiver's age, and social support together explained 80.3% of the variations in health status of caregivers of stroke survivors. Caregiver burden was the strongest predictor of health status of these caregivers. Based on the findings, nurses should take caregiver's age, functional status of stroke survivors, caregiver burden, and social support into consideration when preparing family caregivers to provide care for stroke survivors. To reduce perceived caregiver burden, family support interventions should be embraced to enhance health status of the caregivers of stroke survivors.     

Adolescent cancer survivors' experiences of supportive care needs: A qualitative content analysis

Supportive care is an important strategy that can help cancer survivors manage changes and problems during their follow‐up care. Identifying patients' care needs is one of the primary steps of the nursing process to plan effective nursing interventions. The aim of this study was to explore adolescent cancer survivors' supportive care needs. Purposeful sampling was adopted to select 49 participants from hospitals to participate in face‐to‐face, semistructured interviews. The qualitative content analysis method was conducted for data analysis. Ten subcategories and four main categories – empathetic care, information about survival period, instrumental support, and cooperation in care – were extracted from the data. These four categories formed a major theme, “supportive care”, as the primary healthcare need. This study highlights that supportive care should be developed collaboratively by family and healthcare providers to meet the needs of adolescent cancer survivors. Survivors' strengths and limitations should be identified, and then supportive care can be provided, such as giving appropriate information, enabling survivors to access supportive networks, and improving survivors’ confidence and autonomy with their self‐management.     

Patient perceptions having suffered a stroke in Galway

Of the estimated 10,000 people annually who have a stroke in Ireland, about 7500 will continue to live with some residual disability. This study explored older people's perceptions of health, level of independence as well as the factors that enhanced or diminished ability to maintain quality of life after stroke. A grounded theory approach was used and 20 stroke survivors were interviewed. Analysis of the data revealed three main themes: concepts of health and independence, sense of loss, and environmental factors. Despite their disability most participants continued to have a positive concept of health. Participants overall adopted a functional approach toward independence and those with severe disabilities felt less independent. Many reported a profound sense of loss in terms of identity and role function. Environmental factors including availability of transport and social connections had a significant impact on quality of life. Most participants appeared to be struggling to adapt to their disability and subsequent experiences in a rather unsupportive environment.     

Caregiver characteristics predict stroke survivor quality of life at 4 months and 1 year

Evaluating factors that reduce stroke survivors' (SS) health‐related quality of life (HRQOL) is important for developing interventions to improve HRQOL after stroke. The influence of baseline caregiver and family characteristics (physical health, depressive symptoms, family communication) on five domains of SS HRQOL (physical function, memory/thinking, social activities, communication, and mood) was examined. Data were collected on 132 SS‐caregiver dyads at baseline, 4 months, and 12 months. Baseline caregiver depressive symptoms predicted lower scores for SS physical function and communication at 4 months and social participation and mood at 12 months. Male caregiver gender was negatively associated with SS HRQOL (communication and mood) at 12 months. Early intervention targeting these family characteristics, especially caregiver depressive symptoms, may improve survivors' HRQOL. © 2009 Wiley Periodicals, Inc. Res Nurs Health 32:592–605, 2009     

Long-term recovery trajectory after stroke: an ongoing negotiation between body,participation and self

Abstract

Purpose: Research has mainly focused on the first year of recovery trajectory after stroke, but there is limited knowledge about how stroke survivors manage their long-term everyday lives. This study seeks to fill this gap by exploring the long-term (1–13 years) negotiations of stroke survivors when they experience progress, wellbeing and faith in the future. Method: Repeated in-depth interviews were conducted with nine people living with moderate impairment after stroke and their closest relatives. Concepts from phenomenology and critical psychology constituted the frame of reference of the study. Results: The long-term stroke recovery trajectory can be understood as a process of struggling to overcome tensions between three phenomena under ongoing change: the lived body, participation in everyday life and sense of self. During the recovery process, stroke survivors experience progress, well-being and faith in the future when moving towards renewed relationships, characterised by (1) a modified habitual body, (2) repositioned participation in specific everyday life contexts and (3) a transformed sense of self. Conclusions: This study stresses the importance of developing new forms of professional support during the long-term recovery trajectory, to stimulate and increase interaction and coherence in the relationship between the stroke survivor's bodily perception, participation in everyday life and sense of self.

• Implications for Rehabilitation

• The study deepening how the long-term recovery trajectory after stroke is about ongoing embodied, practical and socially situated negotiations.

• The study demonstrates that the recovery trajectory is a long term process of learning where the stroke survivor, as an embodied agent, gradually modifies new bodily habits, re-position participation and transforming of the self.

• Health personnel are usually available in the acute and early rehabilitation period. The three phenomenons under ongoing change; “body”, “participation” and “self” are at this point just about being moved toward a renewed and a more coherent relationship in the stroke survivor long-lasting everyday life situated recovery trajectory.

• Available rehabilitation services at the municipal level supporting stroke survivors and relatives practical, social and interpersonal long-term challenges in everyday life can be important for minimizing their struggles and for promoting the experience progress, wellbeing and faith in the future.

     

Evaluation of a program on self‐esteem and ego‐identity for Korean nursing students

Nursing students with high levels of self‐esteem and a strong ego‐identity maintain a level of self‐integrity that enables them to participate successfully in shared group values and interests while simultaneously meeting their own needs. Self‐esteem and ego‐identity are associated with academic achievement, major (area of study) satisfaction, and life satisfaction in undergraduate students. This study evaluated a brief group program for Korean nursing students that focused on promoting positive self‐esteem and ego‐identity development. Twenty‐three Korean nursing school students participated. Changes in the students' ego‐identity and self‐esteem were quantitatively examined. Scores for ego‐identity and self‐esteem increased significantly for the students who participated in the group, while scores in the control group remained the same. The program is judged as an effective method for nursing educators or college mental health providers to utilize in order to promote affirmative ego‐identity and self‐esteem in nursing students. Additionally, the program contributes to helping students achieve developmental goals during their college life.