Managing chronic illness: parents with a ventilator--dependent child

Ventilator-dependent children are surviving longer and increasing in number. This qualitative study was undertaken to describe the impact of a ventilator-dependent child on 10 families and to describe the management styles used by the parents. In five families, the child remained hospitalized due to the disability while in the other five the child primarily lived at home. Three major themes in managing were elicited: barriers, resources, and parenting. Parents believed they should try to normalize their child's experiences, that interactions with health care professionals required negotiation and assertiveness, and that they needed some support person(s) outside of the family.     

Medicines for chronic illness at school: experiences and concerns of young people and their parents

Background and objective: Access to medicines by young people with chronic conditions during the school day and suitable environments and support in the administration of a range of dosage forms may be required for optimal clinical management. Whilst Government policy emphasizes that children and young people with chronic illness should be able to lead as normal lives as possible, there is only limited evidence on the experiences and concerns of young people and their parents regarding the use of medicines at school and the impact on school life. The objective of this study was to examine the experiences and concerns of young people with chronic conditions, and their parents/carers, in managing medication at school. Methods: Data were gathered in audio‐recorded face‐to‐face semi‐structured interviews with 27 young people (5–18 years) and their parents attending out‐patient clinics at a major London teaching hospital. Open‐ended questions provided an opportunity for participants to describe experiences and views in the context of their activities, priorities and concerns and enabled a qualitative analysis. Results and discussion: The findings indicated that storage and access of medicines did not present major problems for young people receiving regular medication. However, those receiving medication on a ‘when required’ basis reported barriers to access. The most common concern regarding taking medication was lack of privacy, which sometimes led to non‐adherence. Adverse effects of medication were highlighted as a cause of both non‐adherence and poorer school performance. Extracurricular activities such as school trips were not viewed as presenting a problem by those who were interviewed. However, this was often because young people and their families devised their own strategies regarding the use of medicines that did not depend on the input of staff. There was wide variation in responses about the support young people received from school staff, with evidence of helpful and unhelpful practice. The potential benefits of liaison between schools and health professionals to assist schools in their support of students with their medicines were highlighted. Conclusion: This study has identified medication‐related issues from the perspective of young people and their parents, indicating ways in which their needs might be served more sensitively and effectively.     

MMPI indicators of stress and marital discord among parents of children with chronic illness

The present study explored the emotional adjustment and marital relationships of parents of children with chronic, life-threatening illness. The Minnesota Multiphasic Personality Inventory (MMPI) was completed by 42 fathers and 71 mothers of pediatric cancer patients and 26 fathers and 29 mothers of hemophilic children. Their MMPI profiles were examined for signs of emotional disturbance (i.e., number of T scores of 70 or higher on the clinical scales). Profiles of husband-and-wife pairs were analyzed for marital stress using the Arnold Sign Indicator (ASI). Results indicated that both groups of parents suffered more distress than a normal group but less than marriage counselees. Parents of cancer patients showed higher levels of stress than parents of hemophiliacs.     

Special issues in the grief of parents of murdered children

This paper is a report of one year's participant observation in a heal chapter of Parents of Murdered Children, a self-help group. The already difficult grief after the death of a child is complicated after murder by four special issues, (a.) Anger is focused on the person who willfully caused the death and there is a drive for revenge. (b) The grief cannot be resolved until the legal processes have been completed and within the court system the parent are caught up in a procedural labyrinth in which they have no legal standing, (c) Parents are fearful about the safety of themselves and other members of their family, (d) Parent of a murdered child is a taboo social role. The self-help process of Parents of Murdered Children as it differs from other self-help for for bereaved parents is discussed.     

Special issues in the grief of parents of murdered children

Abstract

This paper is a report of one year's participant observation in a heal chapter of Parents of Murdered Children, a self-help group. The already difficult grief after the death of a child is complicated after murder by four special issues, (a.) Anger is focused on the person who willfully caused the death and there is a drive for revenge. (b) The grief cannot be resolved until the legal processes have been completed and within the court system the parent are caught up in a procedural labyrinth in which they have no legal standing, (c) Parents are fearful about the safety of themselves and other members of their family, (d) Parent of a murdered child is a taboo social role. The self-help process of Parents of Murdered Children as it differs from other self-help for for bereaved parents is discussed.     

The grief of parents of murdered children: a suggested model for intervention

The grief of parents who have lost children to murder is extreme, prolonged, and unique. The authors, themselves bereaved by homicide, suggest a model to facilitate understanding such grief and to guide intervention. The model postulates that homicide survivor grief occurs in three arenas: the private, personal world; the public world of the media; and the world of the criminal justice system. Each arena contains features unique to homicide survivor bereavement. These features are described for the reader.     

Chronic sorrow: adaptation patterns of parents with chronically ill children

Chronic sorrow is a concept that describes parental psychologic reaction to a child who has special health needs. The term can be applied to all types of chronic disabilities regardless of their degree of severity. The term was conceptualized in the early 1960s, but the research momentum has just recently begun.     

Spousal support experiences of rural women living with chronic illness

From an examination of the spousal support experiences of rural women with chronic conditions who participated in a research-based, online support intervention, indications were that health care providers must recognize the need for and provide appropriate support/information related to the emotional, psychosocial, sexual, and relational impacts of chronic illness.     

Minor illness education for parents of young children

BACKGROUND: A number of previous studies on minor illness have concentrated on nurse-led clinics and the role of nurse practitioners. This study examines the effect of a minor illness education programme which aimed to increase parents' confidence and knowledge in managing childhood illnesses. AIM: The primary aim of this study was to evaluate the effectiveness of a home visit and booklet in providing education to parents about minor infant illnesses. DESIGN: A randomized controlled trial was conducted. The intervention involved a home visit to discuss parents' concerns and provide advice and information, and a booklet advising parents what to do and when to consult about infant illnesses. METHOD: A total of 120 parents of 6 week old babies were identified over a 6 month period, using health visitors' caseloads, and randomized to an intervention group (60), that received a visit and a booklet, or a control group (60) that received standard care. Groups were compared on entry to the study and at 7 months, in terms of parental knowledge and confidence about childhood illnesses, the intended use of home care activities, intention to consult professionals and actual use of health services. Data were collected by self-completed questionnaire and case note review. FINDINGS: The educational intervention resulted in a reduction in visits to the child health clinic but had little effect on use of other services. Parents in the intervention group showed a general trend towards greater certainty about the home care options they would choose, and a reduction in intention to consult a doctor. However, they also indicated a feeling of reduced confidence and knowledge. CONCLUSION: The trial showed no effect on use of services but did demonstrate reduction in parents' intentions to consult a doctor, which appeared to be because of increased certainty about home care. However, it is of concern that they indicated feeling less confident and knowledgeable. It is not possible to clarify whether this represented anxiety that was constructive, enhancing decision-making or was destructive. Further work into the role of education in parental decision-making, anxiety levels and enhancement of confidence is required.     

Addressing the needs of children of parents with a mental illness: current approaches

Children of parents with a mental illness have been identified as vulnerable to experiencing a variety of psychosocial effects arising from the impact of parental mental illness. Many children do not however, experience difficulties as a result of their parent's mental illness and are able to thrive despite what may be an adverse situation. Until recently there has been a lack of adequate service provision in Australia for these children and their families. Recent government initiatives have led to greater awareness and recognition of the needs of children whose parents have a mental illness, and key principles and actions have been developed to assist health services to adequately care for them. The aim of this paper is to overview the risk and protective factors that may impact on the psychosocial health children of parents with a mental illness, and provide me strategies that nurses in a range of health settings may use to assist families where parents have a mental illness.     

Hearing the voices of children with chronic illness

This qualitative study has aimed to explore children's, parents' and health professionals' experience of childhood chronic illness. Seven families and their professional carers participated in semistrucured interviews. The children's interviews were augmented with a 'drawing' technique. A grounded theory approach facilitated data collection and analysis. This paper debates the perceived passivity of the voice of children in health care and research and illustrates data collection methods that seek to give children and other disadvantaged groups a voice. The children who participated in this study are described as competent interpreters of their world.     

Compliance with chronic illness regimens: school-aged children and adolescents

More chronically ill school-aged children and adolescents are surviving into adulthood due to recent medical advances and modern technology. However, noncompliance rates are higher among adolescents than adults. Noncompliance is costly, can lead to complications, and may be life-threatening. Several models of compliance are discussed. Variables described in recent research as related to noncompliance (personal, family, and illness factors) are discussed. Those factors that emerged as most important in adolescent compliance were self-esteem, social functioning, and perceived autonomy. It appears that psychological needs may compete and conflict with the need for adherence to illness regimens in adolescence.     

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.