Influence of stroke survivor characteristics and family conflict surrounding recovery on caregivers' mental and physical health

BACKGROUND: Stroke recovery is a dynamic process for stroke survivors, and shorter lengths of stay in healthcare settings shift the care of the survivors to family caregivers. The physical and mental sequelae after stroke and the family's response to this catastrophic event may have deleterious effects on caregivers. OBJECTIVE: To examine the influence of stroke survivors' motor function, their memory and behavior changes, and the family conflict surrounding stroke recovery on the mental and physical health of caregivers during the subacute recovery period. METHODS: This cross-sectional, correlational study used baseline data from family caregivers (n = 132) and first-time stroke survivors enrolled in a larger multisite study. RESULTS: The caregivers were primarily White (71%), female (74%), college-educated (73%) spouses (80%) of survivors. Most of the caregivers (66%) reported family conflict. The caregivers from families with lower family functioning scores reported worse mental health.The caregivers reported lower mental health when they were caring for stroke survivors with a combination of high memory/behavior changes and low motor function (R =.30). Family conflict appears to exacerbate the impact of memory and behavior changes on caregiver mental health. Higher caregiver education and no major health problems were associated with better caregiver physical health (R =.36). Caregiver physical health was not associated with family functioning or stroke survivor memory and behavior changes. CONCLUSIONS: These results indicate that memory and behavior changes of stroke survivors and family conflict surrounding stroke recovery are important considerations for assessment during the poststroke recovery period.     

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.     

A family caregiver-oriented discharge planning program for older stroke patients and their family caregivers

Aims. To test the effectiveness of a discharge planning program for dyads of older stroke survivors and their family caregivers in Taiwan. Background. Family caregivers of stroke survivors often feel inadequately prepared to deal with the physical, cognitive and emotional needs of the stroke survivors. However, little information could be found on discharge planning programs for caregivers of stroke survivors in Asian families. Design. A randomised experimental design was used to explore the effects of a discharge planning program for 158 dyads of older stroke patients and their family caregivers. Methods. The control group (n = 86 dyads) received only routine hospital discharge planning services and the experimental group (n = 72 dyads) received routine hospital discharge planning services plus the caregiver‐oriented discharge planning program. Outcome variables were measured at baseline, before discharge and one month after hospital discharge. Variables were measured by the Nurse Evaluation of Caregiver Preparation Scale, Preparedness for Caregiving Scale, Caregiver Discharge Needs Satisfaction Scale and Perception of Balance between Competing Needs Scale. Results. Caregivers in the experimental group had significantly better nurse evaluation and self‐evaluation of preparation after the program than before, and greater satisfaction of discharge needs one month after discharge than before discharge. Caregivers in the experimental group had significantly better nurse evaluations and self‐evaluations of preparation and better satisfaction of discharge needs after the program compared with the control group. However, no significant difference was found between caregiver groups in perceived balance of competing needs. Conclusions. This discharge planning program benefited family caregivers of older stroke patients during the transition from hospitalisation to one month after discharge. Relevance to clinical practice. This caregiver‐oriented discharge planning program, with its emphasis on individualised health education and home visits following discharge may improve caregivers’ preparation and the satisfaction of their needs during the discharge transition.     

Evidence-based educational guidelines for stroke survivors after discharge home

Stroke survivors today are discharged home from the hospital more quickly than in the past because of shifting economic realities. Survivors continue to experience significant impairments after discharge and families may be poorly prepared for the full extent of caregiving responsibilities. This article describes 39 comprehensive educational guidelines that have been tested with 72 stroke survivors and families during 1,150 home visits throughout the first 6 months after discharge from inpatient rehabilitation. Two case studies illustrate use of the guidelines with stroke survivors and their families.     

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.     

Outcomes among family caregivers of aphasic versus nonaphasic stroke survivors.

Adverse consequences are known to occur in family members responsible for providing care to stroke survivors. However, the differential effect of aphasic versus nonaphasic stroke on caregivers has not been well studied. This study compares selected outcomes (e.g., perceived task difficulty, depressive symptoms, and other negative stroke-related outcomes) among caregivers of aphasic (n = 46) and nonaphasic (n = 113) stroke survivors. Results indicated that caregivers of aphasic survivors perceived greater difficulty with tasks and had more negative stroke-related outcomes than caregivers of nonaphasic survivors. Communication with the survivor was rated as most upsetting and difficult by caregivers in the aphasic group, followed by managing behaviors. Lack of time for family and friends was evident. Female caregivers and caregivers of survivors with self-care deficits also perceived greater difficulty with tasks and negative outcomes. Comprehensive assessment of the unique needs of caregivers of aphasic survivors is suggested for more individualized nursing interventions.     

Social identity and stroke: ‘they don't make me feel like,there's something wrong with me’

Over 85% of the people survive stroke; and of those, over 80% are discharged to the community. However, the majority do not recover completely. Loss of identity is a commonly reported experience after stroke. Studies focus on the individual survivors' use of their own cognitive resources to adapt to change, rather than examining the effects of social interactions on stroke survivors' identities. Social relationships are the foundation upon which survivors rebuild skills to engage with the world, yet little is known about the ways in which families, friends and neighbours provide a context for the recreation of a sense of self and activities after stroke. This article draws on situational analysis grounded theory analysis of in‐depth individual interviews with nine middle‐aged survivors of stroke. In situational analysis, the original grounded theory methods proposed by Glaser and Strauss are used; however, the situational context, and how environments and relationships influence actions, is explicitly analysed. Our objective was to understand the ways in which family, social, and community resources might enhance stroke survivors' participation in personally meaningful activities over the long term. The qualitative accounts of these survivors reveal how social support helped them maintain or more importantly regain a position in society. Following any life‐changing event, people's sense of self is fluid. A relevant social position entitles stroke survivors to become actively involved in setting their own goals and maintaining a positive identity. However, as these participants attested, stroke impaired their social position and resources to reject an imposed social position. It was difficult for these survivors to construct a valued social identity without the support of other people. Future studies should explore the consequences of social interactions with others and how social attitudes about stroke disability affects individual's activity options, professional practice, and ultimately development of a positive poststroke identity.     

Driving after stroke: Driving exposure, advice, and evaluations

Objective: Little is known about the extent to which stroke survivors return to driving and the advice and/or evaluations they receive about driving. This study sought to estimate the prevalence of driving after stroke and to determine whether stroke survivors receive advice and evaluation about driving.Design: A convenience sample of stroke survivors was surveyed regarding driving status following stroke, driving exposure, advice received about driving, and evaluation of driving performance.Participants: Two hundred ninety stroke survivors who were between 3 months to 6 years poststroke.Results: Thirty percent of stroke survivors who drove before the stroke resumed driving after the stroke. Stroke survivors are often poorly informed by health care professionals about driving, with 48% reporting that they did not receive advice about driving and 87% reporting that they did not receive any type of driving evaluation. Almost one third of poststroke drivers had high exposure, driving 6 to 7 days per week and/or 100 to 200 miles per week.Conclusions: These findings suggest that many stroke survivors are making decisions about their driving capabilities without professional advice and/or evaluation. The results also suggest that rehabilitation professionals need to devote more attention and resources to driving issues when working with stroke survivors and their families.     

抑郁情绪在脑卒中患者家庭功能与其健康行为间的中介效应

目的 探讨家庭功能对脑卒中患者健康行为的影响以及抑郁情绪的中介效应.方法 便利抽样法选取2011年9月至2012年4月在广州市某三级甲等医院神经内科门诊复诊的脑卒中患者101例,采用HPLPⅡ、FAD、SDS对患者进行问卷调查,并对调查结果进行分析.结果 脑卒中患者健康行为总均分为（2.27±0.36）分,家庭功能总均分为（2.18±0.25）分,抑郁总租分（37.39±7.94）分,高于国内常模,抑郁发生率为29.5％.脑卒中患者健康行为、家庭功能、抑郁情绪之间存在相关性.抑郁在家庭功能的问题解决维度与健康行为之间发挥完全中介效应,在情感介入、角色功能维度与健康行为之间不发挥中介效应,在家庭功能沟通、情感反应、行为控制与健康行为之间发挥部分中介效应,中介效应占总效应的比分别为32.1％、37.4％和26.1％.结论 对脑卒中患者的家庭功能干预可以提升患者健康行为水平及改善患者的抑郁情绪.     

Changes in family functioning for stroke rehabilitation patients and their families

This study charted changes over time in the family functioning of a group of stroke rehabilitation patients and their families. Participants were 60 12-month stroke survivors who had undergone an inpatient rehabilitation programme, 46 spouses, and 25 other family members. Participants were assessed at the time of admission to and discharge from rehabilitation, and 6 and 12 months after discharge. The study was undertaken in the rehabilitation unit at Repatriation General Hospital, in Adelaide, South Australia. Family functioning was assessed using the McMaster Family Assessment Device, and functional outcome was monitored with the competence scale of the Australian ADL Index. Longitudinal change in family functioning was observed in problem solving, family communication, role definition, behaviour control, and affective involvement. There were no significant differences between the family functioning ratings provided by patients and their spouses. It is important that consideration be given to means by which the increase in family dysfunction following stroke can be addressed.     

The psychosocial impact of recurrence on cancer survivors and family members: a narrative review

Title.  The psychosocial impact of recurrence on cancer survivors and family members: a narrative review.
Aim.  This paper is a report of a review undertaken to identify, critically analyse and synthesize the psychosocial experience of cancer recurrence for survivors and family members.
Background.  Recurrence of cancer is an event after which life changes for families. Individuals move from being short- or long-term survivors of cancer to being patients once more. Families move from a state of fear of recurrence to one of uncertainty and distress as a result of the new crisis.
Data sources.  MEDLINE, CINAHL and CancerLit databases were searched for the period January 1980–2007. Reference lists of papers were conducted for relevant studies. The search terms recurrence, recurrent cancer, experience, survivor and family were searched for separately and in combination.
Review methods.  A narrative review was conducted. Data were categorized in terms of issues during survivorship and concerns after recurrence.
Results.  Three main categories were identified that explained survivors' and families' experiences of recurrent cancer: (1) fear of recurrence during survivorship, (2) when cancer recurs: families facing new challenges and (3) distress because of recurrence.
Conclusion.  Recurrence is a distressing experience for survivors and families because they have to face again psychosocial effects of cancer, such as uncertainty, distress and concerns about death. Care should not be addressed simply to survivors, but should include the general well-being of families beyond their survivorship and support to manage better psychosocial issues occurring when a member has a recurrence of cancer.     

'Seeking': a key activity for new family carers of stroke survivors

Stroke is one of the major causes of disability in the United Kingdom and considerable numbers of stroke survivors need help and support from family carers. The sudden and unexpected nature of stroke means that there is very little time for family members to prepare for a caring role. This paper draws on data from 37 interviews with 14 new carers of stroke survivors and highlights the uncertainty and lack of confidence that family members experience in adopting a caring role. During the initial period following the stroke carers engage in a number of different 'seeking' activities in order to try and ensure that they feel competent, confident and safe to provide care and that they understand the likely future demands they may face. Rather than being facilitated by staff, carers' efforts often go unnoticed or are overlooked, resulting in carers feeling that they are 'going it alone'. Staff need to be more aware of carers' 'seeking' behaviour and actively encourage the formation of partnerships with family members.     

以时机理论为基础的健康教育在脑卒中患者家庭照顾者中的应用

目的 探讨时机理论在脑卒中患者家庭照顾者健康教育中的应用效果。 方法 将100名脑卒中患者的家庭照顾者随机分为对照组与实验组。对照组采用常规教育方法,实验组采取以时机理论为基础的健康教育方法。比较2组照顾者的照顾能力。 结果 进行健康教育6个月后,实验组照顾者的照顾能力好于对照组。 结论 以时机理论为基础的健康教育方法更有利于提高脑卒中患者家庭照顾者的照顾能力。     

Patient-reported family distress among long-term cancer survivors

Two quality of life studies at the University of Nebraska Medical Center and 3 similar studies in the nursing literature were compared regarding family distress to illness scores as reported by long-term cancer survivors. All studies were cross-sectional mail surveys and used City of Hope National Medical Center questionnaires. Participants represented a broad range of survivorship in terms of diagnosis and length of survival (range of means 3Y8 years). Single-item scores were compared among participants regarding the item "How distressing has your illness been for your family?" Significant levels of patient-reported family distress to illness were reported in all 5 studies. Patient survivors may have been able to recall past levels of significant family distress despite prolonged survival or they may have reported significant ongoing family distress as a result of their disease and treatment. Longitudinal assessment of patients' and families' quality of life is essential throughout survivorship. Future studies should identify and compare the types distress experienced by patient survivors and families over time and also measure the intensity of their distress. Interventions designed to meet their individual and collective needs, thereby decreasing their distress, are needed to improve quality of life for survivors and families.     

Incest: the family context. Understanding and detecting childhood sexual abuse.

The recorded incidence of child abuse is higher than many nurses might imagine, and adult incest survivors often suffer long-term psychological effects. An awareness of the characteristics marking families where abuse takes place can alert nurses to such cases--both past and present.     

Development of a stroke family support and education program

An interdisciplinary stroke family support and education program can provide families with basic information about stroke and rehabilitation in addition to providing support to families as they adapt to the crisis of stroke. The theoretical basis for such a program is discussed in this article as well as program development, implementation and evaluation. Included are program goals, content outlines and a referral process.     

Caregiving problems and feelings experienced by family caregivers of stroke survivors the first month after discharge

The purpose of this study was to identify the major problems and associated feelings experienced by family caregivers of stroke survivors during the first month after returning home. Safety, difficulty in managing activities of daily living, and cognitive, behavioral and emotional changes of stroke survivors (for example, mood swings, lack of motivation, forgetfulness and memory loss, depression and calling the caregiver often) were the three most common problems experienced by caregivers during the first month. Other problems were loss of caregiver independence, confinement, tiredness and inadequate time to do caregiving tasks as well as managing stroke survivor physical symptoms, for example, pain, not eating and skin problems. The first month of caregiving is very dynamic and distressful for caregivers of stroke survivors and telephone contacts appear to be beneficial in assisting caregivers to cope with the caregiving process.