Maternal experiences making a decision about heart surgery for their young children with congenital heart disease

Aim. The aim of this study was to investigate the essence of the experience of mothers during the decision‐making process when facing their less than three‐year‐old child undergoing heart surgery due to congenital heart disease (CHD). Methods. In this phenomenological study in Taiwan nine mothers were interviewed in their homes. They were invited to share their experience of family interactions and relationships while facing a decision about their child's heart surgery. The interviews were recorded and transcribed for further analysis according to Colaizzi's phenomenological methodology. Results. The essence of the maternal experience themes during the decision‐making process included (i) understanding the surgery step by step, (ii) role pressure, (iii) constructing care‐taking ability, (iv) endeavouring to maintain family functioning while preparing for surgery and (v) deliberate consideration to make the correct decision. Conclusions. When parents face their child having CHD and plan heart surgery, the whole family is living through a stressful decision‐making process. According to the results of this study, it is obvious that the caregivers and their whole families experience psychological distress, role reorganization and remodelling of family functioning. Relevance to clinical practice. The results of this study provide evidence‐based essential knowledge that will assist the management of such decision‐making processes and help to prepare the child and the family to have confidence in the heart surgery.     

Development and testing of a family nursing scale

A methodological study was conducted to test the psychometric properties of the Family Functioning, Health, and Social Support (FAFHES) Instrument to be used with families of heart patients. A total of 109 initial items were developed based on knowledge generated by three Finnish academic dissertations concerning family functioning, health, and social support provided by nurses. Data were collected from family members of 161 heart patients. Principal component analysis was performed in each of three total scales: family functioning, family health, and social support. The scales had acceptable reliability (alpha coefficients ranged from .73 to .95). Internal consistency reliability and content validity of the FAFHES have initial support. Results obtained from this study support that this instrument is ready for use in research in which the investigator wishes to measure social support associated with family functioning and the health of families of heart patients.     

Family functioning assessed by family members in Finnish families of heart patients.

BACKGROUND: The role of family is central to the wellbeing and health of individuals. Family attitudes, habits and routines affect the way individuals promote their health. Family functioning and family health are threatened when one family member develops heart disease. AIMS: The aim of the study was to describe family functioning and to ascertain factors related to family functioning of families with heart patient as assessed by family members. METHODS: Data collection was done using a questionnaire (FAFHES) in 2000. The sample consisted of 161 family members of patients receiving treatment on two medical wards. The data were analysed by means and tested by parametric and non-parametric tests. The multivariate method used was stepwise regression analysis. RESULTS: The better the family values were materialized and the greater the family's contribution to family health, the better the family's functioning is. Concrete aid was also related to family health. The more concrete aid the family received from nurses, the better family functioning is. When the background variables were included, values and activities remained in the model, but two new variables explained family functioning: family member's age and knowledge of health issues. The older the family member is and the better the knowledge in the family is, the better is family functioning. CONCLUSION: Family functioning of families with heart patients can be supported and developed by family nursing, e.g. concrete aid from nurses. Other aspects of support, e.g. consideration of family member's age and knowledge of health issues also need to be further considered and studied as the basis of care.     

The effects of a symptom management intervention on symptom evaluation, physical functioning, and physical activity for women after coronary artery bypass surgery

The purpose of this subset analysis was to examine the effect of a symptom management (SM) intervention on postoperative symptom evaluation, physical functioning, and physical activity among the female participants (N = 40) of the larger parent study of coronary artery bypass graft patients aged 65 years and older. The intervention group (n = 23) had significantly lower fatigue scores at 6 weeks (Z = 1.96, P < .05) and higher levels of physical activity (Z = -1.71, P < .05) reflected in the expended kcal(-1) x kg x d(-1), as measured by the activity diary at 3 months after coronary artery bypass graft surgery. At 6 weeks and 3 months after surgery, there were significant correlations between cardiac surgery-related recovery symptoms (shortness of breath, fatigue, depression, incision pain, and sleep problems) and physical functioning (physical, vitality, and bodily pain functioning subscale scores), with correlations ranging from 0.31 to 0.46. Given that this was a subset analysis of a larger study, significant differences were not expected for all variables. Study findings support the need for a targeted (women-focused) and tailored (self-management recovery) intervention to assist females in recovering from coronary artery bypass graft surgery to improve symptom management, thereby enhancing physical functioning and physical activity outcomes.     

Further testing of a family nursing instrument (FAFHES)

BACKGROUND: Cardiac illness in one family member affects the well-being and health of the whole family. When a family member falls ill, life may change for the whole family in many ways. Family members expect nursing staff to provide more support when their family situation changes. OBJECTIVES: To describe further development and testing of a family nursing instrument for assessing the association between social support for the family of an adult cardiac patient and family functioning and perceived family health. SETTINGS: The study was conducted in two university hospitals and in two central hospitals in Finland. METHODS AND PARTICIPANTS: Questionnaires were given to family members of heart patients. Patients themselves defined who their closest adult relative was. Data were collected from family members of 509 heart patients. RESULTS: Good internal reliability in this further testing of a new instrument was demonstrated. Principal component analysis (PCA) with varimax rotation was performed in each of the three total scales: family functioning, family health and social support. PCA supported the previously proposed theoretical framework. A final scale consisted of 62 items. All the total scales and subscales had acceptable validity and reliability, alpha coefficients ranged from .76 to .98. CONCLUSIONS: The Family Functioning, Health and Social Support (FAFHES) provides a reliable and valid instrument when the investigator wishes to measure social support associated with family functioning and the health of families of heart patients.     

Promotion of family integrity in the acute care setting: a review of the literature.

The acute illness of 1 family member can then negatively affect all family members and lead to the disruption of family functioning and integrity. During the patient's hospitalization, nurses are in a key position to support family members, maintain family integrity, and ready them for assuming the role of caretaker during the patient's recovery and management of health at home. This article reviews current research findings that provide empirical support for activities that promote family integrity. Strategies for nurses to support family members during the hospitalization of an adult family member and suggestions for future research are provided.     

Coronary artery bypass graft surgery: discharge planning for successful recovery

BACKGROUND: Coronary artery bypass graft (CABG) surgery is a lifesaving intervention, but the early recovery period presents a number of challenges for patients, carers and nurses. Early and adequate discharge planning based on in-depth knowledge of the postdischarge experience can help to ensure optimal recovery. AIM: This paper reports a study to examine the range of postdischarge issues, concerns and needs of patients and their family carers after discharge after CABG surgery, and explore their perceptions of unmet needs 1 year later. METHODS: A two-phase naturalistic inquiry was undertaken. Interviews were conducted with 30 patients and their carers 4-5 weeks after coronary artery bypass grafting (phase 1) and 1 year after the initial interview (phase 2). Thematic analysis was used to identify the major concerns of participants. FINDINGS: Almost half the patients experienced heart surgery as a huge personal shock. Adjusting to life afterwards was difficult, and they experienced a variety of changes, including pain. An unexpected finding was a heightened sense of body awareness and the need for postoperative physical adjustments. The financial implications of surgery were a major burden. Lifestyle adjustments were important and led to suggestions for support services, using telephone support and/or community patient networks. All participants recommended strengthening discharge planning with more accurate information about what to expect during recovery, to help them anticipate fluctuations in health and wellbeing. Carers experienced a wide range of unanticipated feelings during early recovery and had to deal with a number of personal changes. CONCLUSIONS: The findings suggest a need to improve discharge preparation and provide enhanced home support services. Further research should evaluate models of periodic follow-up and mechanisms for mutual support, and compare the experiences of cardiac patients and their carers with those of other surgical cohorts.     

抑郁症患者家属社会支持与家庭功能的相关性研究

目的 探讨抑郁症患者家属的社会支持与家庭功能的相关性,为临床干预提供依据.方法 采用家庭功能量表和社会支持量表对60名抑郁症患者家属(研究组)及60名健康志愿者(对照组)的社会支持和家庭功能状况进行调查分析.结果 研究组家庭功能量表评分,除情感卷入维度外,其他维度评分均在不健康家庭功能的范围之内;对照组除行为控制维度外,其他维度评分及总体功能评分均在正常家庭功能范围内.研究组家庭功能量表总体功能及问题解决、交流、角色、情感反应、行为控制维度分和社会支持量表总分均显著高于对照组(P＜0.01).研究组社会支持与家庭功能量表的问题解决、交流、角色、情感反应、行为控制和总体功能呈显著正相关(P＜0.05或0.01).结论 抑郁症患者家属体验到社会支持程度较低,家庭功能有缺陷,良好的社会支持有助于帮助患者家属恢复家庭功能.     

The family's role in stroke rehabilitation. A review of the literature.

Clinical and research attention in stroke care has been on managing the acute stage of stroke recovery and on evaluating the effectiveness of relatively short-term rehabilitation programs. However, studies suggest that stroke can diminish quality of life and the well-being of patients' families. This article reviews the literature pertaining to the effects of stroke on family functioning and discusses stroke in terms of clinical problems that make rehabilitation a family dilemma. Issues identified in the literature include the need for family assessment, education, advocacy and counseling to foster treatment compliance and social support after stroke.     

脑卒中患者家庭功能及影响因素研究现状

脑卒中患者家庭功能水平总体较低,影响因素较多,发生机制复杂。本文综述家庭功能理论及其测量工具的研究现状,并从家庭结构、家庭经济状况、社会支持及家庭发展阶段与突发生活事件等方面回顾家庭功能的影响因素。     

Social support and adaptation to chronic illness: the case of maintenance hemodialysis.

The findings reported in the literature on the relationship between social support and adaptation to illness are ambiguous and, in some cases, contradictory. The present study sought to examine the relationship among support factors, medical status, and adaptation to chronic illness in 36 hemodialysis patients. Social support was measured on three dimensions: family environment (family cohesion and family expressiveness), level of spouse support, and presence of a confidant. Adaptation was assessed in terms of morale and changes in social functioning since the onset of dialysis. Data collection was done through unstructured interviews, mailed questionnaires, observation, and review of medical records. Correlation coefficients showed a positive association between the measures of social support and morale and a negative correlation among family cohesion, presence of a confidant, and changes in social functioning.     

Families of children with developmental disabilities: an examination of family hardiness.

Using the Typology Model of Adjustment and Adaptation, a family stress model, relationships among family hardiness, family stressors, family appraisal, coping, social support, and satisfaction with family functioning were examined in a sample of 57 families of children with developmental disabilities. Family hardiness was associated with family appraisal, social support, parental coping related to maintaining family integration, and satisfaction with family functioning. Higher satisfaction with family functioning was correlated with coping-integration, network support, functional support, and hardiness. Lower satisfaction with family functioning was associated with higher family stressor scores, social support loss, and increased parental age. Over 42% of the variance in family functioning was accounted for by family hardiness, functional support, family stressors, and parental age. The results highlight the value of continued investigations of hardiness in families.     

Family support--a burden to patient and caregiver.

The aim of this paper was to describe family support in terms of the sources as well as the consequences of burden for caregivers, patients and family interaction. Caregivers' sources of burden were related to difficulties in coping with patients' emotional responses, physical complaints and altered life style behaviour as well as future oriented factors. Consequences in terms of caregivers' perceptions of emotional distress and personal losses are elucidated. In terms of family support, when focusing on sources of burden for patients' concerning family support, emotional support is emphasised and related to overprotection. Two different definitions of the overprotection concept are used in order to elucidate different consequences of the phenomenon. Sources and consequences of burden are also related to family interaction. The family is regarded as a system in which a cardiac disease may cause an imbalance. Poor marital quality or poor family functioning is described as a hindrance to a new balance. To summarise, the reviewed literature unanimously shows that the interactive support between family members when dealing with cardiac disease constitutes a considerable emotional burden. Therefore the support for emotional communication within the family should take priority. The knowledge described can provide a foundation for the development of family support in the cardiac area.     

Psychosocial recovery following ICU: experiences and influences upon discharge to the community.

While appropriate referrals to community services upon discharge home may address the physical needs of former intensive care patients, the psychological needs may be overlooked. This pilot study describes the recovery period following discharge to home of former intensive care unit (ICU) patients and their significant others, and identifies factors influencing recovery and the role of community support in the recovery period.Semi-structured interviews were conducted with five patients and four significant others, 6 to 15 weeks following discharge from the ICU. Data were analysed using constant comparison to identify recurring categories and themes.The recovery period was characterized by the patients' focus on physical recovery with the major theme described as 'moving on', incorporating normalizing life, return to usual routines, and leaving behind the ICU experience. Factors influencing the recovery period included individual attitudes, prior experiences, the ICU experience and support of family and friends. Community support was not commonly utilized with participants describing a perceived stigma attached to asking for professional help. Attention to physical needs and care often masked the psychological support received, particularly from family members. Despite awareness of community supports, patients were generally reluctant to avail themselves of any of these services.     

Family influences on heart failure self-care and outcomes

Many patient education guidelines for teaching heart failure patients recommend inclusion of the family; however, family-focused interventions to promote self-care in heart failure are few. This article reviews the state of the science regarding family influences on heart failure self-care and outcomes. The literature and current studies suggest that family functioning, family support, problem solving, communication, self-efficacy, and caregiver burden are important areas to target for future research. In addition, heart failure patients without family and those who live alone and are socially isolated are highly vulnerable for poor self-care and should receive focused attention. Specific research questions based on existing science and gaps that need to be filled to support clinical practice are posed.     

Early appraisal of coronary revascularization on quality of life

Information available for nurses on counseling cardiac patients about the outcomes of bypass surgery has focused on the time following the first postoperative year. In order to assess earlier impact, two groups of bypass patients--alike in terms of preoperative physical activity, angina level, and type of revascularization--were compared in terms of quality of life and related areas. Seventeen patients were 3 to 5 months (88-141 days) postoperative and 17 patients were 6 to 8 months (161-222 days) post-operative. They were asked to rate themselves on Cantril's Self-Anchoring Scale in relation to past, present, and future life satisfaction. An analysis of variance (ANOVA) indicated that both groups of patients viewed their future life satisfaction to be better than their life satisfaction prior to open heart surgery. Furthermore, the patients 6 to 8 months postoperative viewed their present life satisfaction to be significantly better than their past (p less than .05). Both groups reported a decrease in the level of angina and an increase in the level of physical activity after surgery (p less than .001). They also reported greater satisfaction with family life (p less than .05), social life (p less than .001), and sexual life (p less than .01) following surgery. Overall, there were significant improvements in the quality of life early in the recovery period following surgery. Residual incisional pain may have contributed to any differences between groups.     

Predictors of family functioning one year following traumatic brain injury in children.

This study examined changes in family functioning and predictors of family outcome during the year following traumatic brain injury (TBI). The families of 94 children with TBI (mild = 50, moderate = 25, severe = 19), ages six to 15, were consecutively enrolled from two regional medical centers. Family interview ratings and standard measures of family and child functioning were completed three weeks after injury (measuring preinjury status), as well as three and 12 months. Two-thirds of families had moderate to good preinjury global functioning and coping resources, but more than half exhibited high levels of stress and at-risk family relationships. No significant preinjury differences by injury severity were seen on any measure. Whereas few changes in family functioning were observed over the year in the mild or moderate groups, greater deterioration occurred in the severe group. From one third to one half noted moderate to severe strain in 13 problem areas often seen in individuals with TBI. Preinjury family global functioning, however, was more strongly predictive of 12-month family functioning (R2 = .38 to .68) than was injury severity (R2 = .05 to .09). In four out of five outcome areas assessed at 12 months, preinjury status in each area was the strongest single predictor. Preinjury coping was the best predictor of stress. Families at risk can be identified and need ongoing support for optimal functioning.