Family as a whole: elective surgery patients’ perception of the meaning of family involvement in decision making

Aims and objectives. This study aimed to explore patient perception of the meaning of family involvement in elective surgery decision making in Taiwan. Background. Informed consent is based on respecting patient autonomy. However in cultures where family plays a key role in medical decision making, a patient’s perspective of family involvement has not been fully investigated. Design and methods. Based on a phenomenological approach, this study conducted semistructured interviews to elicit the experiences of 10 elective surgery patients in southern Taiwan who had family present during their surgery decision making. An adapted version of Colaizzi’s (1978) method was used to analyse narratives. Results. Three themes emerged from the elective surgery patients’ perception of the meaning of family involvement in their surgery decision‐making process: (1) Primacy of family well‐being, (2) family as information broker, and (3) family as patient advocate. Patients articulated reciprocal relationships amongst family members, and they expressed overall family well‐being as their ultimate concern when making their treatment decision. The essence of the elective surgery patients’ perception of the meaning of family involvement in decision making was ‘family as a whole’. Conclusions. Patients’ concern for overall family well‐being and their perspective that family plays a supportive role in transmitting information and acting as patient advocate during the decision‐making process may both enhance and restrict individual patient autonomy. In cultures where family is central in decision making, appropriately involving the family in medical decisions should not be overlooked. Relevance to clinical practice. Understanding and acknowledging the important roles of family in medical decision making from the patients’ perspective can enable health professionals to more effectively communicate with patients and their family. Then, health professionals can empower the individual who is making the medical decision based on his or her own needs.     

The experience of South American mothers who have a child being treated for malignancy in the United States

This phenomenological study examined the experience of South American mothers who brought their children to the United States for cancer treatment. Five mothers were interviewed twice about their subjective experiences. Data were analyzed using Colaizzi's method of phenomenology. Thirty-two significant statements were grouped into eight themes. The South American mothers brought their children to the United States in hopes of finding effective treatment, illustrating the major theme of our findings that no effort or sacrifice was too great to save their children's lives. The diagnosis of cancer had an over-whelming impact on the child and the family. This was made worse by the uncertainty of treatment outcome. Although the decision to come disrupted family life and caused economic and cultural hardship, it was uniformly believed to have been the right decision. The greatest challenges experienced by the mothers were language difficulties and the constant preoccupation with the child's illness. Through faith and a variety of coping strategies, these South American mothers succeeded in adapting. They transcended life disruption and focused on the critical goal of restoring their child's health. Central to their experience is that everything humanly possible be done to preserve the life of their child.     

Transition to early parenthood,and family functioning relationships in Japan: a longitudinal study

Greater knowledge of the process by which postpartum parents acquire further awareness of their child and fulfill parental roles will likely lead to an understanding that creates a new approach to nursing. This study explored the transition to parenthood and the relationship between parenthood and family functioning in first‐time mothers and fathers. Seventy‐eight parents (41 mothers, 37 fathers) participated in the study and completed the Scale of Early Childrearing Parenthood and Family Assessment Inventory at birth and at 1, 3, 6, and 12 months postpartum. The levels of parental role attainment and awareness of the child rose dramatically between birth and 3 months postpartum, thereafter stabilizing up to 12 months postpartum. Parenthood and family functioning showed a moderately positive correlation, which gradually became more positive over time. Appropriate nursing interventions might be necessary for parents who show difficulty in accepting their parental roles and have low levels of awareness of their child after 3 months postpartum. Such intervention might be necessary for not only the parents, but also the family unit.     

Mucho camino: the experiences of two undocumented Mexican mothers participating in their child's early intervention program.

OBJECTIVE: This study describes the experiences of two mothers of Mexican origin who are immigrants living under undocumented status in the United States and who participated in their children's early intervention programs. METHOD: In-depth interviews, archival data, and participant observation conducted with two mothers of children with special needs provided data for this case study design research. A phenomenological analytical approach and qualitative data analysis software were employed to gain understandings particular to each family's experience. RESULTS: These families share similar experiences and interactions with many other families in the United States who live within the context of having a child with a disabling condition. Constraints on family functioning related to the families' status of undocumented immigration included: mothers as active participants in their children's early intervention programs, mothers' understanding of their children, mothers' communication with service providers, and life as an immigrant family of Mexican origin living under undocumented status. CONCLUSIONS: The examination of how these mothers negotiated family life while participating in their child's early intervention program provides an appreciation for how these families view the long road--"mucho camino"--involved in achieving their family's well-being.     

Transition experience of parents caring of children with epilepsy: a phenomenological study

BACKGROUND: Families who have a child with epilepsy show a significant impact on both the dynamics of the child's development and family systems in a social context. Knowledge of a family's lived experience in dealing with the early stages of their child's illness will provide a deeper understanding of their life and coping process. Most studies have focused on the child's developmental issues, parental attitudes, coping strategies and the child's adjustment. In order to assist families to cope with the early stage of having a child with epilepsy, nurses need to understand the nature of a family's lived experience. OBJECTIVE: The purpose of this study was to investigate the essence of the family health-illness transition experience from the parental perspective when a child is afflicted with epilepsy. DESIGN: Colaizzi's phenomenological approach was used. In-depth interviews were conducted with ten couples with regard to the first one and a half years after the diagnosis of epilepsy. SETTINGS AND PARTICIPANTS: Ten couples from two medical centers in Taiwan participated in the study. The age range of the children at diagnosis was 0.2-4.3 years. METHODS: Open attitude and imaginative variation techniques were used to investigate the meanings of the experience. This study used Colaizzi's method with both destructured and restructured analysis. Lincoln and Guba's trustworthiness criteria were employed to evaluate methodological rigor. RESULTS: Three concepts emerged: parents' psychological reactions, parental coping patterns and family resources. The parents' psychological reaction was that of being emotionally traumatized and physically exhausted. Parental coping patterns were vigilant parenting and aimed at reframing roles, facing the social challenge and assisting the child's social re-integration. The nature of family resources was family resiliency. The findings provide a scientific knowledge base for nurses when assisting parents and children during the health to illness transitional phase following a diagnosis of epilepsy.     

Impact of eating disorders on family life: individual parents' stories

Aims and objectives. The aim of this study was to consider the impact that an eating disorder had on the family, particularly the parents. The objective was to give a voice to parents in order to develop new understandings of their experience leading to more appropriate clinical decision‐making. Background. The impact of an eating disorder on family life has not been well‐documented in the published literature. There are numerous articles from the sufferer's perspective and treatment modalities. The following paper describes a component of a larger study that explored the parent's perspective of having a child with an eating disorder. Design. Nineteen mothers and three fathers from Sydney, Australia, volunteered to be interviewed as the result of advertizements placed in parent support organization newsletters and by using the snowballing technique. Methods. A qualitative approach using semi‐structured interviews was used to explore parents’ experiences of having a child/adult child with an eating disorder. Themes were identified through in depth analysis. Results. Themes that were extrapolated from this research included, family unification or disintegration, parent's inability to cope, inconsiderate comments from significant others, social isolation and financial impacts. Conclusions. This study reports five overarching effects on family life. The authors conclude that one way in which the life of parents and families could be improved would be increased involvement and integration into the treatment process. For this to happen, health professionals would need to acknowledge the family as a resource. Relevance to clinical practice. This research documents the family struggle and highlights the current omissions concerning the family's role. The need for changes to clinical practice is substantiated. It requires health professionals to scrutinize their own clinical practice and consider modification of the treatment process.     

Parents need to protect: influences,risks and tensions for parents of prepubertal children born with ambiguous genitalia

Aim and objectives. The aim of the study was to explore parents’ experiences of and the influences, risks and tensions associated with their child’s genital ambiguity and the place reconstructive surgeries had in their lives. Background. Research into the clinical management of disorders of sex development is a complex and growing field of study. A small number of studies have indicated that the decisions parents make with regard to their child’s care during infancy are confounded by moral, social and emotional factors which can influence their choices. Design. Narrative methods. Methods. In‐depth interviews elicited stories from 10 mothers and five fathers of 11 prepubertal children. Results. A key theme from the data focused on the parents’ motivations to protect their child from the real or perceived threats arising from other people’s attitudes and responses to their ambiguous genitalia. Several rationales for their protective behaviours were described, which encouraged the parents to actively manage their child’s care. Conclusion. The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses. This support could better prepare the parents to recognise and discuss their protective behaviours and the impact these may have on their child’s future. Relevance to clinical practice. These findings draw attention to the parents’ need for nurses to be knowledgeable about the impact that disorders of sex development can have on family’s emotional, psychosocial well‐being and decision‐making. Nurses’ awareness of the debate surrounding genital surgeries is important if they are to understand the motivations that underpin parents’ decision‐making and how to support them sensitively. Nurses are the health professionals who have the most consistent direct contact with these families throughout the child’s life and, therefore, can provide support in the ongoing decision‐making process.     

Family functioning when children have cystic fibrosis.

The purpose of this study was to compare family functioning between 32 mothers with a child who had been diagnosed with cystic fibrosis (Group 1) and 32 mothers with a child who did not have cystic fibrosis (Group 2). The children's ages ranged from 4 months to 3 years. The mothers' perceptions of their family's functioning was measured by the Feetham Family Functioning Survey. There were no significant differences found between the groups on the total score of the Feetham Family Functioning Survey. Both groups of mothers reported that they were quite satisfied with their family functioning.     

Decision making for mothers with cancer: Maintaining the mother–child bond

PurposeThe objective of this study was to explore the process of decision-making in mothers with cancer when they are mothering young children. The purpose of this article is to describe the core category that emerged from the study as well as the conditions precipitating decision making and the consequences of decision making for mothers with cancer.Methods and sampleA qualitative methodology based on the tenets of constructivist grounded theory was used to conduct ten interviews with eight mothers with cancer.Key resultsData analysis revealed the core category, the conditions of the decision situation as well as the consequences of decision making. The core category was the meaning that mothers made of decisions, specifically that each decision was made to maintain the mother–child bond. The conditions of the mothers' lives influenced the meaning mothers assigned to decisions. The consequences of decision making were displayed by these mothers through coping strategies to facilitate maintaining the mother–child bond in times of distress.ConclusionsThe conditions of the mothers' lives created a context in which mothers made meaning of decisions. Mothers aimed to maintain their bonds with their children in the decision making process and used various coping strategies as a consequence to distress from decisional situations. The results have implications for future decision making research in cancer care.     

Maternal factors related to parenting young children with congenital heart disease

The purpose of this study was to compare the early child-rearing practices between mothers of young children with congenital heart disease (CHD) and mothers of healthy children. In addition, maternal stress, parental developmental expectations, and the early behavioral and emotional development of their children were explored. Maccoby's (1992) socialization theory emphasizing the reciprocal nature of mother-child interactions provided the framework for this study. Findings from quantitative self-report measures and videotaped parent-child interactions showed a remarkable similarity between mothers of children with CHD and mothers of healthy children. In contrast, qualitative data revealed important differences with mothers of CHD children reporting high levels of vigilance with their children. The important role of promoting the principle of normalization among mothers of children with CHD and ensuring a sufficient support system is discussed.     

The health care experiences of the preschool child with autism

It is known that children with autism spectrum disorder (ASD) visit health care providers (HCPs) more frequently than typically developing peers, and mothers experience barriers in this process. The purpose of this interpretive phenomenological study was to gain a better understanding of a mother's experiences of taking her child with ASD to the HCP. Two themes related to the health care experience of the child surfaced from the study. These themes included feelings that HCPs do not "get" the complexity of caring for the child and marginalization of mothers by the HCP. The need for creation of child-specific profiles emerged from this study.     

Parental experience of family resources in single-parent families having a child with cancer

Aim. The purpose of this study was to explore the essence of family experiences in terms of family resources and how these assist a single‐parent caring for a child with cancer. Background. When families face stresses caused by cancer, they need to readjust their roles, interactive patterns and relationships, both inside and outside the family. During the adaptation process, family resources may assist recovery from stress and a return to equilibrium. Most research has emphasised the support resources available to two‐parent families during the treatment process. There is a lack of information on the experiences of single‐parent families and their available resources together with the functions and roles played by family resources during the adjustment process. Design. Qualitative. Results. Five major themes were identified: (i) facing the disease with courage; (ii) hope kindled by professionals; (iii) constructing parental role ability; (iv) assisting the children to live with the illness; and (v) family flexibility. Conclusion. The results of the current study demonstrate that single‐parent families with a child suffering from cancer employ family resources to assist family adjustment and to maintain family function/equilibrium. These results explain the dynamic interactions between the multiple levels of resources available to the family. Relevance to clinical practice. The study results provide evidence‐based information that identifies the nature of family resources in single‐parent families and describes how these resources can be applied to assist the families.     

The feelings nurses and patients/families experience when faced with the need to make bioethical decisions

This study investigates the experience of nurses and patients/families who have been personally involved in bioethical decision making and their consequent reflections on their feelings regarding the decision-making process. The method used was phenomenological. The subjects were 15 nurses, 5 patients, and 11 family members. The analysis of data resulted in 10 themes for each group. For the most part, the experience was a negative one that left the participants feeling frustrated and powerless. The themes have been used to create two visual analog scales (one for the patient and one for the patient/family). The tool is already being pilot tested.     

Challenges of decision making for families of children with single or multiple chronic conditions

When a child is diagnosed with a chronic illness, families begin a constant cycle of decision making. Many of these decisions surround health care treatment. These families can be divided into two groups: those with children newly diagnosed with a chronic condition and those with children who have a preexisting illness. If a new diagnosis represents a family's entrance into the medical community, the decision-making process can be confusing and difficult. For the family of a child with a preexisting condition, making repeated decisions about treatments can be additionally stressful and anxiety provoking because of their medical history. How do families with a child with a preexisting medical condition differ in their decision making? What factors affect their decisions? The nurse practitioner has a critical role interacting with both types of families and guiding the decision-making process. Therefore, understanding the family and their previous experience is crucial to determine how nurse practitioners can best tailor interventions to promote effective decision making.     

Supporting the case for ‘progressive universalism’ in health visiting: Scottish mothers and health visitors’ perspectives on targeting and rationing health visiting services,with a focus on the Lothian Child Concern Model

Aims and objectives. To explore parents and professionals’ experience of family assessment in health visiting (public health nursing), with a focus on the Lothian Child Concern Model. Background. Health visitors currently assess families as requiring core, additional or intensive support, and offer support at a corresponding level. The majority of families are assessed as core and receive no pro‐active support beyond the early days. Previous assessment tools, consisting of checklists, have been criticised as being ineffective in identifying a range of health needs and unacceptable to parents and health visitors. The Lothian Child Concern Model was developed and introduced in the study area to promote a partnership approach with parents and assess strengths as well as difficulties in parents’ capacity to care for their child. Methods. Qualitative methods were used. Ten mothers and 12 health visitors took part in individual semi‐structured interviews. Results. Most mothers were aware of the assessment process but some felt that they were not involved in the decision‐making process. Explaining the assessment process to parents is problematic and not all health visitors do so. The assessment process was stressful for some mothers. Health visitors find the model useful for structuring and documenting the assessment process. Many believe that most families benefit from some support, using public health approaches. Health visitors said that families are often assessed as core because there are insufficient resources to support all those who meet the criteria of the additional category and that managers assess caseloads in terms of families with child protection concerns. Conclusions. The study findings significant the concept of ‘progressive universalism’ that provides a continuum that intensity of support to families, depending on need. Mothers would like better partnership working with health visitors. Relevance to clinical practice. The study endorses proposed policy changes to re‐establish the public health role of health visitors and to lower the threshold for families to qualify for support.     

Breastfeeding success among infants with congenital heart disease

It is a widespread misconception that infants with congenital heart disease (CHD) are not able to breastfeed. The purpose of this study was to describe breastfeeding duration and outcomes among a high-risk group of infants with CHD. Mothers of 68 infants at least 6 months of age, who had experienced cardiac surgery during the neonatal period, were surveyed regarding breastfeeding and milk expression habits. Results for this sample of infants were compared to a benchmark study conducted in 1993 at the same institution that described breastfeeding outcomes for 45 infants with CHD. Improved outcomes for the 1998-2000 sample are attributed to an active lactation consultation program instituted in 1998. These findings suggest that given support and education necessary to initiate and maintain lactation, mothers can successfully breastfeed their infants with CHD for durations recommended by the Healthy People 2010 initiative.     

Patterns of recovery among Norwegian heart surgery patients

Utilizing a prospective longitudinal design, the recovery pattern of 91 heart patients was followed for the first 8 weeks following coronary artery by-pass graft surgery The patients' perceived and actual performance of walking, their resumption of roles, and social support and family functioning were measured pre-operatively and at 4 and 8 weeks postoperatively Findings indicate that recovery is swift in terms of health and physical functioning, somewhat more time-consuming in terms of role functioning, and delayed with regard to work-related role activities Contrary to American findings, the heart surgery recovery process did not significantly affect family functioning in this Norwegian sample Social support was experienced as high throughout the recovery period, with spouses and children being the main providers     

Iranian Mothers’ Perceptions of Their Lives with Children with Mental Retardation: A Preliminary Phenomenological Investigation

This phenomenological study explored Iranian mothers’ lived experiences of having a child with mental retardation (MR). Six mothers parenting a child with MR who attended a School for Exceptional Children were interviewed. Semi-structured interviews which encouraged the mothers to describe their experiences were audiotaped, transcribed and analyzed in accordance with Colaizzi’s (Existential phenomenological alternatives for psychology, New York, Oxford University Press, 1978) procedural steps. Six major themes were found in the data: Challenging the process of acceptance, painful emotional reactions, the inter-relatedness of the mother’s health and the child’s well being, struggles to deal with oneself or the child, inadequate support from the family and community, and anxiety related to the child’s uncertain future. Findings from this study contribute to a preliminary understanding of Iranian mothers’ experiences and needs. The results suggest introductory changes in nursing practice, staff education and program development to best serve mothers and their children with MR.     

危重新生儿心内直视术的体外循环管理

目的:总结危重先天性心脏病(先心病)患儿新生儿期心内直视术的体外循环(CPB)管理经验.方法:对我院2009年度90例危重先心病患儿新生儿期行心内直视术的CPB情况进行回顾性总结分析.其中深低温停循环(DHCA)1例,深低温低流量(DHLF)结合下半身DHCA 2例,DHLF 43例,中度低温中低流量CPB 33例,浅低温中高流量CPB 5例,常温不停跳CPB 6例.2例术中给予平衡超滤 (ZBUF)结合常规超滤(CUF) 和改良超滤(MUF),其余均给予CUF联合MUF.结果:CPB转流时间37~380(118.9±66.5)min,主动脉阻断时间14~195(74.4±40.9)min.所有病例在开放主动脉后心脏均能自动复跳.86例成功脱离CPB.1例左心发育不良(HLHS)术后转为体外膜肺氧合支持160 h后死亡.本组死亡共13例,病死率14.4%.结论:接近生理的CPB预充,良好的心肌保护,选用适宜的灌注方式,合理的血气管理,联合运用各种超滤方法是确保危重先心病患儿新生儿期心内直视术成功的重要环节.