Strategies of Normalization Used by Parents of Chronically Ill School Age Children

The concept of normalization is examined in relation to chronically ill children. From this conceptual base, the responses of 365 parents in a survey of chronically ill children's use of time out of school, were analyzed to determine the normalization strategies used pertaining to the life of the child and family. This article discusses the appropriateness and importance of normalization, and presents implications for the professional nurse working with families of chronically ill children.     

Social support and the chronically ill individual

Nurses caring for the chronically ill need to be alert for the problems of social isolation and social impairment. Families often respond initially to serious illness by becoming over-protective and fostering dependence and a sense of impaired competence in the ill person. As the illness continues, families often experience exhaustion because of the demands of new roles, depleted finances, and other aspects of a changed lifestyle. Feelings of anger, guilt, and helplessness occur in the network, often leading to withdrawal of support--especially as the ill person's ability to reciprocate support is impaired. Nursing interventions in situations of social isolation focus on reducing isolation by promoting social interaction as appropriate, and by directly or indirectly mobilizing or expanding the social network. The problem of impaired social interaction may occur secondary to the personality changes that often accompany chronic illnesses, or as a function of the chronic illness or disability itself, as in the case of mental illnesses. Social impairment is an appropriate nursing diagnosis in abusive families. Nursing interventions range from educational programs for social skill development to reduction of the amount of contact within the network to involvement of protective and psychotherapy services. Chronic illness has profound effects on social support and the social network of both the ill person and his or her family. As both long-term illnesses and family involvement in care giving increase, nursing care in situations of chronic illness must include attention to issues of social support. Nursing diagnosis provides a framework for nurses to include social support in their care of the chronically ill patient. Social isolation and social impairment can be reduced by nursing interventions.     

Care for chronically ill children and elderly in the People's Republic of China

This paper examines home care for urban chronically ill elderly and children in the People’s Republic of China. Seventy-five families with a chronically ill child living at home and 75 families with a chronically ill elderly person living at home responded to in-depth interview questions. These data provide insights into many dimensions of this home care situation including the severity of the illness and problems experienced by family caregivers. Study results show the difficulties of home health-care and provide a basis for nursing’s role in China’s future home care.     

The family and chronic sorrow: role theory approach.

This article explores the presence of chronic sorrow in families of chronically ill children and applies role theory concepts in the understanding of this phenomenon. Research findings in the area of chronic sorrow, family adaptation, and role theory are used to formulate propositions specific to the application of role theory in the study of chronic sorrow. The clinical and research applicability for nurses working with families of chronically disabled children are discussed to assist in providing quality family-nursing care.     

Cohesion and parents' social relations in families with a child with disability or chronic illness.

We studied how a child's physical or intellectual disability or diabetes affected family cohesion, the parents' social life, work and leisure-time activities, and whether there was any association between the parents' social relations and family cohesion. The parents of 89 children aged 12-17 years returned a questionnaire and were interviewed by a social worker. Family cohesion increased in all the groups by an average of 27%. The effect was smallest in the families of children with diabetes, whereas in the families with intellectual or physical disability family cohesion increased from 6 to 13 times more often compared to the families of children with diabetes. The increased family cohesion was not associated with the change in the parents' social relationships, work, career or leisure-time activities; the importance of these activities did not decrease even though family cohesion increased. However, a child's chronic illness or disability affects the everyday life of the family, for instance 71% of the parents with diabetic children thought that the regularity of family life increased and about a half of the parents with physically or intellectually disabled children had to change their hobbies because of the child. In planning treatment and rehabilitation for a chronically ill or disabled child more attention should be paid to the whole family and its needs, not only to the child.     

Patterns of family adaptation to childhood asthma

This study examined patterns in adaptation among parents with a child who had moderate to severe persistent asthma. Specifically, we were interested in examining the differences in adaptation between mothers and fathers in which it was hypothesized that gender effects would be obtained in patterns of coping. Eighty-four parents participated in the study, representing 37 intact families in which both parents were present and 13 single-parent families. Within intact families, mothers exhibited greater efforts than fathers in coping patterns including strategies to acquire social support outside the family, enhance self-worth, and decrease psychological tensions. When compared to mothers in single-parent families, mothers within intact families had a greater tendency to use coping patterns related to family integration and cooperation. Such findings demonstrate a need for additional support for mothers in their role in caring for the chronically ill child. The implications of these findings for clinical practice are discussed.     

Continuity reexamined: differential impact on satisfaction with medical care for disabled and normal children

The satisfaction with medical care of families with disabled children and of randomly selected families is compared to test the hypothesis that the impact of continuity of physician on parental satisfaction is greater when disabled children are patients than is the case among the general population of children. A multiple regression approach for the study of interaction was used. The results provide general confirmation for the hypothesis that the weights of continuity in producing change in all three patient satisfaction areas studied were greater in the sample of families with disabled children than in the random sample of families. Controlling for maternal education, family income, race and waiting time did not alter these results. It is suggested that a continuous doctor-patient relationship, conducive to the expression and resolution of psychological needs, is of special importance when a patient's illness is severe. Implications for the organization of medical care in specialty clinics, which serve the disabled and chronically ill, are discussed.     

Patterns of functioning in families with a chronically ill parent: an exploratory study

Findings from an assessment of the pattern of functioning of families with dependent children in which one parent was chronically ill are presented. The Moos Family Environment Scale scores of 67 chronically ill individuals and their spouses were subjected to cluster analysis procedures. Four clusters of families were identified and described: cohesive, moral-religious oriented, structured conflict, and unstructured conflict. Structured conflict families possessed lower socioeconomic status and perceived greater impact of illness than cohesive families. Cluster analysis proved particularly useful because it allowed consideration of how groups of families vary from each other, as well as how specific dimensions of family functioning may covary with one another within groups.     

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended.

• Implications for Rehabilitation

• Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life.

• A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks.

• Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion.

• A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

     

Experiences of Family Stigma among Mothers of Adult Children with Mental Illness in South Korea

People with mental illness suffer from stigma in addition to the illness itself; their families also suffer from the stigma of having a family member with a mental illness. The aim of the present study was to explore the lived experiences of the family stigma among mothers of mentally ill children in South Korea. The work was qualitative in nature; we used the phenomenological method of Colaizzi. Mothers with an adult child enrolled as mentally ill patients in the Mental Health Centre of K Province in South Korea were eligible for inclusion. Findings: Six themes emerged; these were being ashamed, feeling of being ignored, isolating oneself from social relationships, becoming a mentally sick person, living like a guilty person, and becoming a part of the socially weak. The study contributes to our understanding of stigma experienced by family members in a socio-cultural context and will aid in the development of culturally appropriate strategies for the destigmatization of families of mentally ill persons.     

"They don't leave you on your own:" a qualitative study of the home care of chronically ill children

Learning to cope with a chronic illness is a process often demanding professional help that extends beyond the time spent in the hospital. Using interviews, this qualitative study describes the subjective experiences of five families with children who are chronically ill and the experiences of the two head nurses at External Care Services (EPD) in Berlin, Germany, an institution focused exclusively on home care for children. The positive experiences expressed by parents reflect the patient-oriented understanding of caring developed by the EPD, which strives for the qualified instruction of families and the building of caring relationships. As a result of the care offered by the EPD, many children are spared the repeated hospitalizations that so hinder the normalization of family life and impede family health.     

Predictors of early hospital readmissions of older adults who are functionally impaired

When older adults who are chronically ill are discharged home, they face a high risk of hospital readmission. The purpose of the study was to determine whether low social support, low satisfaction with social support, high depressive symptomatology of the caregiver, and minimal use of home health care predicted hospital readmissions of the older adult. Sixty family caregivers were interviewed in their homes soon after hospital discharge and 3 months later. Tangible forms of social support and helping others were negatively related to the number of hospital readmissions. Nurses need to encourage families to seek and use social support that is offered.     

Face to Face With Sturge-Weber Syndrome

issues and purpose . Chronic illness is a way of life for parents of children with Sturge-Weber syndrome (SWS), a rare progressive congenital disease that has as its defining feature a port wine stain. This case study describes the experience of one family living with a child with SWS.
conclusions . This family's struggle with a devastating syndrome and the ways in which they coped and maintained hope inform all those who care for families living with a chronically ill, disabled child.
practice implications . Social support is critical for families facing overwhelming care needs. Families also need anticipatory guidance about child rearing, developmental milestones, decision making, and coping strategies. Additionally, families may need help in mobilizing professional and family resources and in effectively using available services.     

Opening caregiver minds: National Alliance for the Mentally Ill's (NAMI) provider education program

The belief that poor parenting and dysfunctional families give rise to mental illness has been perpetuated by psychodynamic and family systems theories that lack supporting scientific evidence, and interventions based on these theories have failed to produce clinical improvements. Nevertheless the National Alliance for the Mentally III (NAMI) found that many clinical training programs continue to teach these outdated theories and interventions and that the mental health system is often destructive to family systems. This article describes a new 10-week program that is designed to educate service providers that will include families in the care of their chronically ill loved one. The program is based on a competence and adaptation rather than a pathology foundation and it shifts the discourse from causes to effects of illness.     

A case illustration of family management style.

Chronic illness management is a way of life for many children and their families. For these chronically ill children, the ability of the family to respond to the daily relentless demands of management dictates the quality of the child's and family's life. In an effort to better understand how a family responds to a chronic illness, Knafl and Deatrick's Family Management Style (FMS) model is applied to a family with a child with type I diabetes using a case-study analysis. Gallo derived dimensions of the model's components in an earlier application. These dimensions are applied to interview data obtained on the same family 1 year later to address the dynamic nature of family management style.     

The impact of caring on young carer's lives. An international literature review (1990-2006)

Children growing up with chronically ill parents and those who are involved into the care of their parents are at risk to experience adverse effects on their whole development. This literature study is part of a research project that intends to work out a basis for specific support for young carers and their families in Germany. Questions concerning the impact on young carers, and also experiences of growing up with a chronically ill parent where addressed to the last 15 years' relevant literature. Children experience positive as well as negative effects, but it is difficult to distinguish between caring responsibilities and the impact of growing up with a chronically ill parent. Positive effects are a good sense of self-esteem, maturity, identity, a close relation to the parents, as well as feeling well prepared for further life. Negative effects become apparent for the child's physical, psychosocial and educational development. Not every young carer experiences negative effects, and not every child of a chronically ill parent will necessarily experience disadvantage. Nevertheless, research results refer to the need for action in order to prevent negative consequences for the child's future life. Projects of support need to integrate the whole family and besides supporting the children, the parents need to be stabilised as well.     

Stress and well-being among parents of children with rare diseases: a prospective intervention study

AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. BACKGROUND: Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. METHOD: We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability. RESULTS: We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. CONCLUSION: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.     

The process of empowerment in mothers of chronically ill children

As a result of advances in scientific knowledge and technology, the number of children living with chronic illness is ever increasing The burden of responsibility for the care of these children falls increasingly on the involved parents and, particularly, on mothers In spite of the challenges that chronic childhood illness presents, many families are able to adapt to their situation and develop a sense of control over their lives A sense of control has been associated with the notion of empowerment Following a theoretical analysis, empowerment was conceptualized as a social process of recognizing, promoting and enhancing people's abilities to meet their own needs, solve their own problems, and mobilize the necessary resources in order to feel in control of their own lives To understand the concept of empowerment from an empirical perspective, a fieldwork study was undertaken to describe the process of empowerment as it pertains to mothers of chronically ill children This paper presents the process of empowerment that occurred in these mothers Four components of the process of empowerment emerged discovering reality, critical reflection, taking charge, and holding on As a result of the study, empowerment was reconceptualized as largely a personal process in which individuals developed and employed the necessary knowledge, competence and confidence for making their voices heard Participatory competence — the ability to be heard by those in power - was the outcome of this process Although the unique finding in this study suggests that the process of empowerment was largely mtrapersonal, there was a relational element in the process Clearly, the intrapersonal and interpersonal processes of empowerment are intertwined     

Promoting health for families of children with chronic conditions

AIM: This paper reports a study whose aim was to describe how nurses in a paediatric unit promote the health of families of children with chronic conditions during the children's hospitalization. BACKGROUND: It is stressful for a family when a child has a chronic condition and hospitalized. Nurses have the opportunity to promote family health while a child is hospitalized, and previous studies contain a wealth of recommendations on how this should be done. However, there is little research evidence about family care and how nurses promote the health of a family with a chronically ill child. METHODS: Forty nurses who worked in two paediatric units providing care for children with chronic conditions and their families participated in the study. Data were collected in two Finnish hospitals in 2002 using group interviews, and nursing actions were observed in both units for a period of 84 hours. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Data were collected until theoretical saturation was reached. FINDINGS: Family care was based on three distinctive strategies. Nurses used a systematic, selective or situation-specific strategy while promoting family health during a child's hospitalization. CONCLUSIONS: The findings indicate that nurses used different strategies while promoting family health during a child's hospitalization. The systematic way of working with families identified in the study seems a useful strategy. All three strategies of family nursing described here should be tested in other paediatric wards and in other geographical locations.