Self-management: Enabling and empowering patients living with cancer as a chronic illness.

With recent improvements in the early detection, diagnosis, and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this article, self-management interventions that enable patients and families to participate in managing their care along this continuum are reviewed. Randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer care continuum are reviewed, and the Chronic Care Model is presented as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. It is concluded that the need for a common language with which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually agreed upon care plans that enable and empower patients to care for themselves in the way they prefer.

A new self-report measure of self-management of type 1 diabetes for adolescents.

BACKGROUND: The development of instruments to measure self-management in youth with type 1 diabetes has not kept up with current understanding of the concept. OBJECTIVE: This study aimed to report the development and the testing of a new self-report measure to assess the Self-Management of Type 1 Diabetes in Adolescents (SMOD-A). METHODS: Following a qualitative study, items were identified and reviewed by experts for content validity. A total of 515 adolescents, 13 to 21 years old, participated in a field study by completing the SMOD-A (either once or twice) and additional measures of diabetes-related self-efficacy (Self-Efficacy for Diabetes Scale), quality of life (Diabetes Quality of Life for Youth Questionnaire), self-management (Diabetes Self-Management Profile), and adherence (Self-Care Inventory). Data were collected also on metabolic control (glycosylated hemoglobin [HbA1c]). RESULTS: The content validity index was .93. Exploratory alpha factor analyses revealed five subscales: Collaboration With Parents, Diabetes Care Activities, Diabetes Problem Solving, Diabetes Communication, and Goals (alpha = .71 to .85). The stability of the SMOD-A ranged from .60 to .88 at 2 weeks (test-retest) to .59 to .85 at 3 months. Correlations of SMOD-A subscales with Self-Efficacy for Diabetes Scale-Diabetes; Diabetes Quality of Life for Youth Questionnaire satisfaction, impact, and worry; Diabetes Self-Management Profile; and Self-Care Inventory were generally significant and in the expected direction. Collaboration with parents and HbA1c values were related significantly and positively (r = .11); all other SMOD-A subscales were related significantly and negatively to HbA1c (r = -.10 to -.26), demonstrating that better self-management is associated somewhat with better metabolic control and supporting construct validity of the new measure. DISCUSSION: The SMOD-A has been found to be a reliable, stable, and valid measure of SMOD-A.

Determining content validity of a self-report instrument for adolescents using a heterogeneous expert panel.

BACKGROUND: The use of experiential experts, especially children and adolescents, in content validity evaluations of new instruments has not been described well. OBJECTIVE: To describe the use of experiential experts in a content validity evaluation of a new instrument. METHODS: Experiential (adolescents and parents, n = 11) and professional (diabetes clinicians and researchers, n = 17) expert judges evaluated the content validity of a new instrument that measures self-management of Type 1 diabetes in adolescents. The content validity index for each of 99 items (I-CVIs) for the total group of experts (n = 28; I-CVI-ALL) and for the experiential experts only (I-CVI-EXPERIENTIAL) were calculated, respectively, and both were used to inform decisions about whether to retain, eliminate, or revise each item. RESULTS: There were 20 items where the I-CVI-ALL was >/=.80 and the I-CVI-EXPERIENTIAL was <.80. Each of these 20 items was evaluated critically. Some were retained (n = 3), some were eliminated (n = 7), and some were revised as suggested by the experts (n = 10). DISCUSSION: Using experiential content validity experts (adolescents and parents) and critically evaluating their recommendations regarding items can result in further elimination and revision of items beyond what is suggested by content validity assessment done by professional experts. The result may be a more thorough content validity assessment of the instrument, leading to an instrument with greater relevance for the target population.

Changing patterns of self-management in youth with type I diabetes.

Self-management of type I diabetes is key to good physical and psychosocial outcomes of the disease, yet little is known about how youth and their parents share responsibility for illness management. This study describes the division of labor between youth and their parents, self-management conflict, and three patterns of self-management in youth across four developmental stages: preadolescence, early adolescence, mid-adolescence, and late adolescence. Twenty-two youth (8-19 years) with type I diabetes and one of their parents were interviewed using semistructured interviews. Data were analyzed using qualitative content analysis. Results indicated that parents of preadolescents (8-11 years) performed much of their children's diabetes care. Dyads reported some conflicts, particularly over food, amount of bolus, and blood glucose testing. The dyads demonstrated a self-management pattern that we identified as parent-dominant. Most early adolescents (11-15 years) performed much of their own daily care, but parents actively participated in their self-management and oversaw it. The majority of dyads reported conflict over food and blood glucose testing. Most early adolescents demonstrated a transitional self-management pattern whereby they managed their own daily care, with varying amounts of parental oversight. In mid-adolescence (15-17 years), youth managed nearly all of their diabetes care; however, some dyads reported that parental oversight of illness care was still considerable. Exercise was conflictual for the majority of these dyads. Over half of the youth and, by late adolescence (17-19 years), all youth demonstrated a pattern of adolescent-dominant self-management. In adolescent-dominant self-management, youth independently managed their diabetes. Half of the dyads reported that there were sometimes conflicts over food and blood glucose testing. Understanding the nature of sharing self-management responsibilities, the nature of conflict in carrying out such responsibilities, and the pattern of self-management may help nurses provide more targeted assistance to youth with diabetes and to their parents.

Ten things I learned while writing my last research grant.

There are nurses in numerous roles today fulfilling their professional responsibilities by engaging in a variety of clinical, educational, administrative and research activities. Nurse researchers strive to develop the knowledge base that nurse clinicians use in practice, and their synergistic efforts contribute toward continuously improving patient care. For nurse clinicians, the daily pursuit of excellence is evidenced in their rewards for exemplary clinical performance; for nurse researchers, receiving recognition and funding from the National Institutes of Health (NIH) is the hallmark of their accomplishments. But seeking research grant money is an arduous and complex ordeal requiring focus, persistence and deliberate action. Many seek the pinnacle "RO1"--that research grant which endorses one's scientific status in the nursing research community--and many never succeed. This author offers advice to those who would not be weak in heart or courage--to attempt to climb this pinnacle.

The concept of self-management of type 1 diabetes in children and adolescents: an evolutionary concept analysis.

AIM: An evolutionary concept analysis was undertaken to clarify the concept of self-management of type 1 diabetes in children and adolescents. BACKGROUND: Several problems exist in the literature on self-management of type 1 diabetes in children and adolescents. There is no uniform terminology and there is no uniform definition of the concept. Also, there is no differentiation in the literature between self-management of diabetes in children and adults. METHODS: Ninety-nine references were reviewed and analysed in the disciplines of nursing, medicine, and psychology. After separate analyses revealed no significant differences across disciplines, the analyses were combined to describe the attributes, antecedents, consequences, and surrogate and related concepts. RESULTS: The three essential attributes of the concept were identified as process, activities, and goals. Self-management of type 1 diabetes in children and adolescents is an active and proactive process; it is daily, lifelong, and flexible, and it involves shifting and shared responsibility for diabetes care tasks and decision-making between child and parent. It is a process that involves collaboration with health care providers. Self-management of type 1 diabetes in children and adolescents also consists of varied and many activities related to giving insulin, monitoring metabolic control, regulating diet and exercise, to name just a few. The concept also involves goals, which may differ from one parent/child dyad to another. A working definition of the concept is suggested. CONCLUSIONS: It is hoped that a more uniform definition of the concept will enable researchers to continue investigating antecedents and consequences of the concept in a way that allows for aggregating results.

A review of measures of self-management of type 1 diabetes by youth and their parents.

PURPOSE: The purpose of this paper was to identify and critique relevant existing instruments designed to measure self-management of type 1 diabetes in children and adolescents. METHODS: Literature on the self-management of type 1 diabetes in children and adolescents was systematically searched to identify instruments measuring self-management. After eliminating instruments that measured only one aspect of self-management, those published prior to DCCT findings, and those for which little information was available, 6 instruments were identified for review. Each instrument is discussed in terms of history and description of the instrument, definitions, psychometrics, findings from studies using the instrument, availability of the instrument, and evaluation. RESULTS: All of the instruments measure some of the activities of self-management; 1 expressly measures self-management; 1 measures the frequency of various self-care activities, and 4 measure adherence to prescribed diabetes regimens. Only 1 instrument comprehensively assesses the process of self-management. None measure the goals of self-management. CONCLUSIONS: Instrument development has been hindered by the lack of clarity concerning the concept of self-management of type 1 diabetes in children and adolescents. Existing measures need to be further developed and new measures need to be designed.