Chronic sorrow in parents of children with type 1 diabetes

Title.  Chronic sorrow in parents of children with type 1 diabetes.
Aim.  This paper reports on a study exploring parents' longer-term experiences of having a child with type 1 diabetes.
Background.  Parents of children with type 1 diabetes may experience a grief reaction at diagnosis similar to that normally associated with bereavement, but little is known about their long-term emotional adaptation. Chronic sorrow, a sustained but intermittent grief reaction, is identified in adults with diabetes but has not previously been explored in relation to parents.
Methodology.  In-depth interviews were conducted in 2007 with a convenience sample of 17 parents of children with type 1 diabetes 7–10 years after diagnosis. Data were explored within a theoretical framework of grief, loss, adaptation, and change.
Findings.  Parents had adapted to the needs of diabetes management but most had not 'come to terms' with the diagnosis. They experienced a resurgence of grief at critical times during their child's development and some, particularly mothers, became upset during their interviews, even though these took place 7–10 years after their child's diagnosis. Mothers elaborated more on their emotions than fathers, but continuing feelings associated with grief, such as anger and guilt, were expressed by both fathers and mothers.
Conclusion.  Greater understanding of parents' long-term emotional responses and recognition that grief may never resolve in these parents may enable healthcare professionals to provide appropriate and timely support at critical times.     

Parents' and adolescents' perceptions of helpful and nonhelpful support for adolescents' assumption of diabetes management responsibility.

The study identified parents' and adolescents' perceptions of helpful and nonhelpful support, specific to adolescents' assumption of responsibility for diabetes management. Sixteen pairs of parents and adolescents with type 1 diabetes (11-18 years of age) were interviewed. The interviews were audiotaped and transcribed verbatim. Data were analyzed for manifest content according to social support dimensions identified by Barrera and Ainlay (1983). Inter-rater agreement between primary investigator and doctorally prepared diabetes nurse and educator was 100%. Both parents and adolescents describe directive guidance and tangible assistance as helpful and nonhelpful, depending on degree of directness and perceived need for help. Nurses can encourage parents to use subtle guidance and adolescents to communicate their needs.     

Future life expectations and self-esteem of the adolescent survivor of childhood cancer.

The number of adolescent cancer survivors has increased dramatically over the past decade as the result of improved treatment and diagnostic techniques. This population brings with them unique characteristics and concerns. The present study consisted of interviews with 10 adolescent survivors of childhood cancer and their parents. It investigated the adolescent's present self-esteem, the future life expectations held by both the teenagers and parents, and the relationship between the variables. Results indicated that the adolescents felt moderately competent in their lives (measures of self-esteem) and the parents felt more certain than their children that the teenagers would accomplish the tasks deemed appropriate for entry into a healthy adulthood. Pearson correlations showed a strong relationship between parents' future life expectations and adolescents' self-esteem (r = .82; P = .002), but not between parents' and adolescents' future life expectations or between the adolescents' future life expectations and self-esteem. The results are significant in addressing the impact parents can have on their child's self-esteem.     

Finding straight answers: identifying the needs of parents and service providers of adolescents with type 1 diabetes to aid in the creation of an online support intervention

Aims and objectives. To explore the needs and preferences of parents and service providers of adolescents with type 1 diabetes in an online support intervention. Background. Parents experience stress during this time of transition as adolescent conflict is common and the consequences of risk-taking behaviour in combination with type 1 diabetes can be severe. Parents are in need of social support and desired an online intervention. Online support interventions have not been previously designed from the perspective of the users of these interventions. Methods. Participatory, qualitative design. Fourteen group interviews across Canada (n?=?60). Results. Participants identified four main themes (Finding straight answers, Making transitions, Struggling with parenting and Connecting with others) within the context of accessibility. Parents described their needs for credible Canadian information, support from other parents, fostering positive family dynamics while shifting parenting roles during adolescence. Connecting with others included finding a social support system and venue to share stories and resources. Discussion. These findings are innovative as these experienced participants desired a blend of professional information and peer informal knowledge and support in an accessible, online format. Conclusion. The results of this study will form the foundation of an online support intervention while providing unique insight into the experiences of parents of adolescents with type 1 diabetes. Relevance to clinical practice. Parents and service providers indicate the need for information that is trusted, accurate and on a wide range of topics, within a preferred online environment. Supporting parents during this difficult time includes directing them to appropriate and accessible resources, facilitating a positive, healthy process of transition to interdependence, in their parenting of adolescents with type 1 diabetes.     

Parents' support and satisfaction with their child's postoperative care

It is recognized that parents' presence during their child's hospitalization is of benefit to the parents and the child. However, the level of parental involvement in their child's care may be influenced by many factors, such as the amount of support nurses provide for parents. This article reports on two themes from the findings of a larger study on parental involvement in children's postoperative pain management - parental support and parents' satisfaction with their child's postoperative pain management. The aim of the larger study was to explore both nurses' and parents' perceptions of parental involvement in their child's postoperative pain management. The methods used were both qualitative and quantitative. The qualitative method of phenomenology was used to guide 20 nurse and 20 parent interviews. Quantitative methods involved surveying the nurses and parents on their perceptions of how supportive the nurses were towards the parents. The charts of 20 children were reviewed for pain-related data. This article reports on the issues of parent support from the results of the survey, and on satisfaction relating to their child's postoperative pain management from the parent interviews. The findings demonstrated that nurses perceived that parents were receiving more support from them than that which parents felt they were receiving. Parents were more satisfied with their child's pain management and children received more analgesia when they were cared for by a lower grade nurse.     

Adolescent diabetes mellitus: parent/child perspectives of the effect of the disease on family and social interactions

To investigate the perceived effects of adolescent diabetes mellitus on family and social interactions from the children's and parents' perspectives, 50 teenagers with diabetes were studied: 21 from a private practice and 29 from a diabetes camp. Children and parents answered separately a specially prepared questionnaire dealing with daily life situations; the adolescents also responded to the Firo B questionnaire. On corresponding questions agreement between the responses of children and parents varied from as high as 86% to as low as 30%. Questions referring to the effect of diabetes on scholastic performance, concentration, and social life were associated with poor agreement. No correlation was found between the measure of agreement between parents and children on various responses and glycosylated hemoglobin determinations. The adolescents' perspectives were clearly influenced by sex and age of onset of diabetes. Female compared with male adolescents perceived significantly less effect from diabetes on scholastic performance and concentration, and the age of onset of their diabetes affected the measure of agreement with parents. In their responses to the Firo B questionnaire female diabetic adolescents differed significantly from norms in 2 of the 6 subscales measured, unlike male adolescents, whose scores were similar to those of norm groups. Male diabetic adolescents felt the most effect from diabetes on social life, scholastic performance, and concentration when they had developed the disease between 9 and 12 yr of age. Although the parents of this subgroup of adolescents underestimated these feelings, in general, parents of male and female diabetic adolescents perceived more effect from diabetes than their children.     

Parents of Children with Disabilities: Resilience, Coping, and Future Expectations

On the basis of characteristics of family resilience, the study examined the perspectives of parents of children with an intellectual, physical, or learning disability. Thirty-two parents were interviewed as to past, present, and the modes of coping. The questions examined various aspects of family ecology domains: parents' responses to the child's diagnosis; patterns of adjustment; family support and services used by parents; and parents' feelings and future expectations. Although, it was found that most parents had to make changes in their social life and expressed high levels of frustration and dissatisfaction, many try to maintain their routine life. The majority expressed the need for a strong belief in the child and in the child's future, an optimistic outlook, and a realistic view and acceptance of the disability. The study highlighted the importance of social resources and support, and the need for effective programs of intervention.     

Parent-adolescent communication and diabetes: an integrative review

Title. Parent–adolescent communication and diabetes: an integrative review. Aim. This paper presents a synthesis of findings from empirical studies about communication and interaction between parents and their adolescents with diabetes. Background. Communication between parent and adolescent is essential in transitioning the adolescent to increased responsibility for diabetes self‐management. Nurses are in a pivotal position to enhance the type of parent–adolescent communication that facilitates this transition. Data sources. A search of published studies from 1985 to 2006 featuring communication or interaction between parents and adolescents with type 1 diabetes was implemented through a computerized search. Review methods. Papers were organized by type of evidence and were analysed sequentially. Sources were described based on data elements which were extracted. Findings in the areas of productive and problematic parent–adolescent communications were included. Data elements were compared and critiqued, noting consistencies, and findings were summarized and evaluated. Results. Studies across several countries indicate that maternal support, conflict, control, involvement and emotional expression are important communication concepts that are linked to diabetes outcomes in adolescents. The influences of different family structures and cultural and socioeconomic circumstances, as well as developmental status and gender of adolescents on these types of communication, have not been systematically studied. Conclusion. Nurses caring for adolescents with type 1 diabetes need to consider family relationships and communication patterns in achieving health outcomes. Studies of communication, including perspectives of mothers and fathers, and the influence of family structure, economics and culture are needed to build a framework of parent–adolescent interaction and health outcomes for adolescents with type 1 diabetes.     

Redefining relationships and identity in young adults with type 1 diabetes

Title.  Redefining relationships and identity in young adults with type 1 diabetes.
Aim.  This paper is a report of a study exploring the meaning of interactions with and supports of self-management from parents and other significant others for young adults with type 1 diabetes.
Background.  Adolescence and young adulthood is known to be a critical period for people living with diabetes in terms of diabetes control, which is why support from significant others is of utmost importance during the transition to adult life.
Method.  A grounded theory approach was used. Interviews with 13 young adults with type 1 diabetes and 13 parents 2 years after transfer to adult diabetes care were conducted during 2006–2007. Internet communication between young people on a diabetes website was also included in the constant comparative analysis.
Findings.  Transition to adult life for young adults with diabetes was characterized by a relational and reflexive process leading to ongoing redefinition of relationships and identity. Parents were perceived as the most reliable supporters, compared to partners, siblings and other significant others. Chat friends can also become important through emotional, social and diabetes-related support in internet communication. The young adults showed growing awareness of their own capacities, shortcomings and emotional reactions, reflections which contribute to a redefinition of self.
Conclusion.  Further research is needed to explore how contemporary interactions contribute to development of the self. By focusing on supporting relationships, nurses are in a strategic position to develop knowledge and modify clinical programmes that promote diabetes management and care by taking supporting interactions into account from a contemporary point of view.     

Type 1 diabetes: children and adolescents' knowledge and questions

Title.  Type 1 diabetes: children and adolescents' knowledge and questions.
Aim.  This paper is a report of a study conducted to describe what children and adolescents who have type 1 diabetes know and want to know about the disease.
Background.  Research indicates that young people's knowledge of diabetes may minimize their health complications, because with greater knowledge they may engage in more effective management practices and adherence.
Methods.  In this qualitative study, a purposive sample of 58 children and adolescents with type 1 diabetes were interviewed in 2005 about what they knew and wanted to know about their disease. Through a process of induction, major themes were identified from the data.
Findings.  The six major themes were: (a) Care , including both physical and emotional care, (b) Physiology , (c) Consequences , including both short- and long-term, as well as positive and negative consequences, (d) Cure , (e) Effects on the Family and (f) Experience at Diagnosis . Themes related to the unique challenges associated with type 1 diabetes were also identified.
Conclusion.  Nurses, diabetes educators and parents should provide developmentally appropriate information about diabetes care and management, scaffolding on existing knowledge. They should provide child-centred contexts in which children and adolescents can freely ask questions about their condition and problem-solve. Programmes that allow young people to develop coping skills and share experiences could also prove beneficial.     

Gaining freedom: self-responsibility in adolescents with diabetes

This exploratory, qualitative pilot study explored the meaning of the chronic illness experience for adolescents with diabetes in relation to taking on responsibility for their own care. Four adolescents aged 15 to 17 years with insulin-dependent diabetes mellitus participated in indepth interviews. Gaining freedom was the central phenomenon that captured the process of gaining self-responsibility in diabetes management during adolescence. Three themes marked the process: (a) making it fit; (b) being ready and willing; and (c) having a safety net of friends. These adolescents described a gradual transition from dependence to independence in learning to manage their diabetes. These findings should cause advanced practice nurses to re-evaluate their frameworks for adolescents with diabetes and develop a collaborative approach. Intervention strategies must be developed that incorporate adolescent developmental needs, determine readiness and motivation to learn, and provide opportunities to practice independence in self-management.     

Experiences of parents of young people with diabetes using insulin pump therapy

BACKGROUND: National guidance on the use of insulin pump therapy in the management of type 1 diabetes in adults (currently under review) also applies to children and adolescents. However, access to this treatment relies on the availability of health professionals trained in the use of pumps with children and young people rather than on clinical need. AIM: To examine the experiences of parents of children and young people using insulin pump therapy treatment to treat their type 1 diabetes. METHOD: Parents of 44 children and young people aged one to 16 years identified from the databases of two support and advocacy groups responded to email or postal self-completion questionnaires. RESULTS: Percentage frequency and thematic analysis identified issues relating to: access of information about pumps from NHS sources; high initial refusal rates by diabetes teams for children wanting to use the treatment; distance travelled to access a pump-trained team; reasons for starting the treatment; choice; benefits; information and assistance needs once using the treatment; and parents' involvement in deciding their child's diabetes care plan. CONCLUSION: Generalisability is limited by the small scale of the study but these results suggest that in addition to improving glycaemic control, insulin pump therapy offers flexibility, choice and a better quality of life for children and their families.     

Poverty and Adolescent Mental Health

PROBLEM:  Poverty and accelerations of inequality, manifested by the increasing difference between the richest and poorest populations, have significant effects on the mental health of vulnerable groups. Adolescents are vulnerable to the effects of poverty. As a time of change and transition for youth and their families, adolescence creates both challenges and opportunities to intervene in the effects of poverty.
PURPOSE:  The purpose of this article is to discuss the significance of poverty and its impact on adolescent mental health and mental health services.
SOURCES:  An interdisciplinary literature search was conducted on the topic of poverty and adolescent mental health.
CONCLUSIONS:  Results indicated that nurses need to remain active participants in the provision of mental health services to adolescents in poverty and increase their advocacy for the creation of policy changes that address mental health needs of this population.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

Protective Effects of Self-Esteem and Family Support on Suicide Risk Behaviors among At-Risk Adolescents

PROBLEM:  If and how family support and self-esteem might interact to protect against adolescent suicide risk is not well understood.
METHODS:  Hierarchical multiple regression was used to examine the moderating effect of family support on the relationship between self-esteem and suicide risk behaviors among potential high school dropouts ( N = 849), using questionnaires and in-depth assessment interviews.
FINDINGS:  Family support moderated the impact of self-esteem on suicide risk; the ameliorating effect of self-esteem was stronger among adolescents with low versus high family support.
CONCLUSIONS:  Self-esteem influences adolescent suicide risk behaviors for youth with low as well as high family support. Interventions designed to strengthen both self-esteem and support resources are appropriate.     

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.