Resilience among patients across the cancer continuum: diverse perspectives.

Each phase of the cancer experience profoundly affects patients' lives. Much of the literature has focused on negative consequences of cancer; however, the study of resilience may enable providers to promote more positive psychosocial outcomes before, during, and after the cancer experience. The current review describes the ways in which elements of resilience have been defined and studied at each phase of the cancer continuum. Extensive literature searches were conducted to find studies assessing resilience during one or more stages of the adult cancer continuum. For all phases of the cancer continuum, resilience descriptions included preexisting or baseline characteristics, such as demographics and personal attributes (e.g., optimism, social support), mechanisms of adaptation, such as coping and medical experiences (e.g., positive provider communication), as well as psychosocial outcomes, such as growth and quality of life. Promoting resilience is a critical element of patient psychosocial care. Nurses may enable resilience by recognizing and promoting certain baseline characteristics and optimizing mechanisms of adaptation.

Affiliation

School of Medicine at the Seattle Children's Hospital, at the Fred Hutchinson Cancer Research Center, University of Washington.

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Each phase of the cancer experience profoundly affects patients' lives. Much of the literature has focused on negative consequences of cancer; however, the study of resilience may enable providers to promote more positive psychosocial outcomes before, during, and after the cancer experience. The current review describes the ways in which elements of resilience have been defined and studied at each phase of the cancer continuum. Extensive literature searches were conducted to find studies assessing resilience during one or more stages of the adult cancer continuum. For all phases of the cancer continuum, resilience descriptions included preexisting or baseline characteristics, such as demographics and personal attributes (e.g., optimism, social support), mechanisms of adaptation, such as coping and medical experiences (e.g., positive provider communication), as well as psychosocial outcomes, such as growth and quality of life. Promoting resilience is a critical element of patient psychosocial care. Nurses may enable resilience by recognizing and promoting certain baseline characteristics and optimizing mechanisms of adaptation.

Over the past decade, research has documented the positive consequences individuals attribute to the experience of traumatic, life-threatening events, including enhanced life appreciation, improved social relationships, and a deepened sense of self and meaning. Despite evidence that individuals with cancer frequently perceive growth as a result of their experience, personal growth in the context of advanced cancer has received markedly less attention. In light of the unique challenges accompanying the experience of advanced cancer, the phenomenon of perceiving positive consequences and making meaning of the cancer experience (i.e., personal growth) may be distinct in patients with life-limiting disease as compared with more commonly studied early-stage cancer survivor samples. The purpose of this article was to review studies examining personal growth in adults diagnosed with advanced cancer to encourage medical professionals to consider and respond to their concerns around meaning within palliative care. We conducted a systematic review of the PubMed and PsycINFO electronic databases for studies examining personal growth in patients with advanced cancer published between January 1960 and January 2013. Of the 197 studies reviewed, 12 quantitative studies and 10 qualitative studies met criteria for inclusion. The review revealed that many patients with advanced cancer both cite finding meaning at the end of life as important and perceive positive consequences as a result of their experience. In comparison to early-stage cancer or benign disease, advanced cancer may serve to prompt higher levels of personal growth. However, these findings are mixed and may indicate a complex, nonlinear relationship between cancer prognosis and personal growth. The most promising candidates for promoting personal growth during advanced disease include younger adult age, spirituality, and psychosocial resources (optimism, marriage, and social support from close others and health care providers). Importantly, a co-occurrence of personal growth with both distress and well-being in advanced cancer suggests that personal growth in this unique context is characterized by perceived positive consequences in the face of considerable demands, which may be reflected by greater negative and positive markers of adjustment. Understanding and awareness of personal growth in individuals with advanced cancer may facilitate health care providers' ability to consider and respond to concerns around meaning and personal growth within palliative care, given the growing literature on psychosocial interventions for patients with advanced cancer. Integration of the existing research base with intervention development is an opportunity for future research.

2009Oct
Ont Health Technol Assess Ser
Ont Health Technol Assess Ser 2009 1;9(21):1-45. Epub 2009 Oct 1.

In June 2008, the Medical Advisory Secretariat began work on the Diabetes Strategy Evidence Project, an evidence-based review of the literature surrounding strategies for successful management and treatment of diabetes. This project came about when the Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the Ministry's newly released Diabetes Strategy.After an initial review of the strategy and consultation with experts, the secretariat identified five key areas in which evidence was needed. Evidence-based analyses have been prepared for each of these five areas: insulin pumps, behavioural interventions, bariatric surgery, home telemonitoring, and community based care. For each area, an economic analysis was completed where appropriate and is described in a separate report.To review these titles within the Diabetes Strategy Evidence series, please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html,DIABETES STRATEGY EVIDENCE PLATFORM: Summary of Evidence-Based AnalysesContinuous Subcutaneous Insulin Infusion Pumps for Type 1 and Type 2 Adult Diabetics: An Evidence-Based Analysis Behavioural Interventions for Type 2 Diabetes: An Evidence-Based Analysis BARIATRIC SURGERY FOR PEOPLE WITH DIABETES AND MORBID OBESITY: An Evidence-Based Summary Community-Based Care for the Management of Type 2 Diabetes: An Evidence-Based Analysis Home Telemonitoring for Type 2 Diabetes: An Evidence-Based Analysis Application of the Ontario Diabetes Economic Model (ODEM) to Determine the Cost-effectiveness and Budget Impact of Selected Type 2 Diabetes Interventions in Ontario
The objective of this report is to determine whether behavioural interventions are effective in improving glycemic control in adults with type 2 diabetes.
Diabetes is a serious chronic condition affecting millions of people worldwide and is the sixth leading cause of death in Canada. In 2005, an estimated 8.8% of Ontario's population had diabetes, representing more than 816,000 Ontarians. The direct health care cost of diabetes was $1.76 billion in the year 2000 and is projected to rise to a total cost of $3.14 billion by 2016. Much of this cost arises from the serious long-term complications associated with the disease including: coronary heart disease, stroke, adult blindness, limb amputations and kidney disease. Type 2 diabetes accounts for 90-95% of diabetes and while type 2 diabetes is more prevalent in people aged 40 years and older, prevalence in younger populations is increasing due to a rise in obesity and physical inactivity in children. Data from the United Kingdom Prospective Diabetes Study (UKPDS) has shown that tight glycemic control can significantly reduce the risk of developing serious complications in type 2 diabetics. Despite physicians' and patients' knowledge of the importance of glycemic control, Canadian data has shown that only 38% of patients with diabetes have HbA1C levels in the optimal range of 7% or less. This statistic highlights the complexities involved in the management of diabetes, which is characterized by extensive patient involvement in addition to the support provided by physicians. An enormous demand is, therefore, placed on patients to self-manage the physical, emotional and psychological aspects of living with a chronic illness. Despite differences in individual needs to cope with diabetes, there is general agreement for the necessity of supportive programs for patient self-management. While traditional programs were didactic models with the goal of improving patients' knowledge of their disease, current models focus on behavioural approaches aimed at providing patients with the skills and strategies required to promote and change their behaviour. Several meta-analyses and systematic reviews have demonstrated improved health outcomes with self-management support programs in type 2 diabetics. They have all, however, either looked at a specific component of self-management support programs (i.e. self-management education) or have been conducted in specific populations. Most reviews are also qualitative and do not clearly define the interventions of interest, making findings difficult to interpret. Moreover, heterogeneity in the interventions has led to conflicting evidence on the components of effective programs. There is thus much uncertainty regarding the optimal design and delivery of these programs by policymakers. EVIDENCE-BASED ANALYSIS OF EFFECTIVENESS:
Are behavioural interventions effective in improving glycemic control in adults with type 2 diabetes?Is the effectiveness of the intervention impacted by intervention characteristics (e.g. delivery of intervention, length of intervention, mode of instruction, interventionist etc.)?
English Language Published between January 1996 to August 2008 Type 2 diabetic adult population (>18 years)Randomized controlled trials (RCTs)Systematic reviews, or meta-analyses Describing a multi-faceted self-management support intervention as defined by the 2007 Self-Management Mapping Guide (1)Reporting outcomes of glycemic control (HbA1c) with extractable data Studies with a minimum of 6-month follow up
Studies with a control group other than usual care Studies with a sample size <30 Studies without a clearly defined intervention

glycemic control (HbA1c)
systolic blood pressure (SBP) control, lipid control, change in smoking status, weight change, quality of life, knowledge, self-efficacy, managing psychosocial aspects of diabetes, assessing dissatisfaction and readiness to change, and setting and achieving diabetes goals.
A search was performed in OVID MEDLINE, MEDLINE In-Process and Other Non-Indexed Citations, EMBASE, the Cumulative Index to Nursing & Allied Health Literature (CINAHL), The Cochrane Library, and the International Agency for Health Technology Assessment (INAHTA) for studies published between January 1996 and August 2008. Abstracts were reviewed by a single author and studies meeting the inclusion criteria outlined above were obtained. Data on population characteristics, glycemic control outcomes, and study design were extracted. Reference lists were also checked for relevant studies. The quality of the evidence was assessed as being either high, moderate, low, or very low according to the GRADE methodology.
The search identified 638 citations published between 1996 and August 2008, of which 12 met the inclusion criteria and one was a meta-analysis (Gary et al. 2003). The remaining 11 studies were RCTs (9 were used in the meta-analysis) and only one was defined as small (total sample size N=47). SUMMARY OF PARTICIPANT DEMOGRAPHICS ACROSS STUDIES: A total of 2,549 participants were included in the 11 identified studies. The mean age of participants reported was approximately 58 years and the mean duration of diabetes was approximately 6 years. Most studies reported gender with a mean percentage of females of approximately 67%. Of the eleven studies, two focused only on women and four included only Hispanic individuals. All studies evaluated type 2 diabetes patients exclusively. STUDY CHARACTERISTICS: The studies were conducted between 2002 and 2008. Approximately six of 11 studies were carried out within the USA, with the remaining studies conducted in the UK, Sweden, and Israel (sample size ranged from 47 to 824 participants). The quality of the studies ranged from moderate to low with four of the studies being of moderate quality and the remaining seven of low quality (based on the Consort Checklist). Differences in quality were mainly due to methodological issues such as inadequate description of randomization, sample size calculation allocation concealment, blinding and uncertainty of the use of intention-to-treat (ITT) analysis. Patients were recruited from several settings: six studies from primary or general medical practices, three studies from the community (e.g. via advertisements), and two from outpatient diabetes clinics. A usual care control group was reported in nine of 11 of the studies and two studies reported some type of minimal diabetes care in addition to usual care for the control group. INTERVENTION CHARACTERISTICS: All of the interventions examined in the studies were mapped to the 2007 Self-management Mapping Guide. The interventions most often focused on problem solving, goal setting and encouraging participants to engage in activities that protect and promote health (e.g. modifying behaviour, change in diet, and increase physical activity). All of the studies examined comprehensive interventions targeted at least two self-care topics (e.g. diet, physical activity, blood glucose monitoring, foot care, etc.). Despite the homogeneity in the aims of the interventions, there was substantial clinical heterogeneity in other intervention characteristics such as duration, intensity, setting, mode of delivery (group vs. individual), interventionist, and outcomes of interest (discussed below). DURATION, INTENSITY AND MODE OF DELIVERY: Intervention durations ranged from 2 days to 1 year, with many falling into the range of 6 to 10 weeks. The rest of the interventions fell into categories of ≤ 2 weeks (2 studies), 6 months (2 studies), or 1 year (3 studies). Intensity of the interventions varied widely from 6 hours over 2 days, to 52 hours over 1 year; however, the majority consisted of interventions of 6 to 15 hours. Both individual and group sessions were used to deliver interventions. Group counselling was used in five studies as a mode of instruction, three studies used both individual and group sessions, and one study used individual sessions as its sole mode of instruction. (ABSTRACT TRUNCATED)

2003Jun
Pediatrics
Pediatrics 2003 Jun;111(6 Pt 2):1541-71

WHY A TASK FORCE ON THE FAMILY? The practice of pediatrics is unique among medical specialties in many ways, among which is the nearly certain presence of a parent when health care services are provided for the patient. Regardless of whether parents or other family members are physically present, their influence is pervasive. Families are the most central and enduring influence in children's lives. Parents are also central in pediatric care. The health and well-being of children are inextricably linked to their parents' physical, emotional and social health, social circumstances, and child-rearing practices. The rising incidence of behavior problems among children attests to some families' inability to cope with the increasing stresses they are experiencing and their need for assistance. When a family's distress finds its voice in a child's symptoms, pediatricians are often parents' first source for help. There is enormous diversity among families-diversity in the composition of families, in their ethnic and racial heritage, in their religious and spiritual orientation, in how they communicate, in the time they spend together, in their commitment to individual family members, in their connections to their community, in their experiences, and in their ability to adapt to stress. Within families, individuals are different from one another as well. Pediatricians are especially sensitive to differences among children-in their temperaments and personalities, in their innate and learned abilities, and in how they view themselves and respond to the world around them. It is remarkable and a testament to the effort of parents and to the resilience of children that most families function well and most children succeed in life. Family life in the United States has been subjected to extensive scrutiny and frequent commentary, yet even when those activities have been informed by research, they tend to be influenced by personal experience within families and by individual and cultural beliefs about how society and family life ought to be. The process of formulating recommendations for pediatric practice, public policy, professional education, and research requires reaching consensus on some core values and principles about family life and family functioning as they affect children, knowing that some philosophic disagreements will remain unresolved. The growing multicultural character of the country will likely heighten awareness of our diversity. Many characteristics of families have changed during the past 3 to 5 decades. Families without children younger than 18 years have increased substantially, and they are now the majority. The average age at marriage has increased, and a greater proportion of births is occurring to women older than 30 years. Between 1970 and 2000, the proportion of children in 2-parent families decreased from 85% to 69%, and more than one quarter (26%) of all children live with a single parent, usually their mother. Most of this change reflects a dramatic increase in the rate of births to unmarried women that went from 5.3% in 1960 to 33.2% in 2000. Another factor in this change is a slowly decreasing but still high divorce rate that is roughly double what it was in the mid-1950s. Family income is strongly related to children's health, and the financial resources that families have available are closely tied to changes in family structure. Family income in real dollars has trended up for many decades, but the benefits have not been shared equally. For example, the median income of families with married parents has increased by 146% since 1970, but female-headed households have experienced a growth of 131%. More striking is that in 2000, the median income of female-headed households was only 47% of that of married-couple families and only 65% of that of families with 2 married parents in which the wife was not employed. Not surprising, the proportion of children who live in poverty is approximately 5 times greater for female-headed families than for married-couple families. The comped families than for married-couple families. The composition of children's families and the time parents have for their children affect child rearing. Consequent to the increase in female-headed households, rising economic and personal need, and increased opportunities for women, the proportion of mothers who are in the workforce has climbed steadily over the past several decades. Currently, approximately two thirds of all mothers with children younger than 18 years are employed. Most families with young children depend on child care, and most child care is not of good quality. Reliance on child care involves longer days for children and families, the stress imposed by schedules and created by transitions, exposure to infections, and considerable cost. An increasing number and proportion of parents are also devoting time previously available to their children to the care of their own parents. The so-called "sandwich generation" of parents is being pulled in multiple directions. The amount and use of family time also has changed with a lengthening workday, including the amount of commuting time necessary to travel between work and home, and with the intrusion of television and computers into family life. In public opinion polls, most parents report that they believe it is more difficult to be a parent now than it used to be; people seem to feel more isolated, social and media pressures on and enticements of their children seem greater, and the world seems to be a more dangerous place. Social and public policy has not kept up with these changes, leaving families stretched for time and stressed to cope and meet their responsibilities. What can and what should pediatrics do to help families raise healthy and well-adjusted children? How can individual pediatricians better support families? FAMILY PEDIATRICS: The American Academy of Pediatrics (AAP) Board of Directors appointed the Task Force on the Family to help guide the development of public policy and recommend how to assist pediatricians to promote well-functioning families (see Appendix). The magnitude of the assigned work required task force members to learn a great deal from research and researchers in the fields of social and behavioral sciences. A review of some critical literature was completed by a consultant to the task force and accompanies this report. That review identified a convergence of pediatrics and research on families by other disciplines. The task force found that a great deal is known about family functioning and family circumstances that affect children. With this knowledge, it is possible to provide pediatric care in a way that promotes successful families and good outcomes for children. The task force refers to that type of care as "family-oriented care" or "family pediatrics" and strongly endorses policies and practices that promote the adoption of this 2-generational approach as a hallmark of pediatrics. During the past decade, family advocates have successfully promoted family-centered care, "the philosophies, principles and practices that put the family at the heart or center of services; the family as the driving force." Most pediatricians report that they involve families in the decision making regarding the health care of their child and make an effort to understand the needs of the family as well as the child. Family pediatrics, like family-centered care, requires an active, productive partnership between the pediatrician and the family. But family pediatrics extends the responsibilities of the pediatrician to include screening, assessment, and referral of parents for physical, emotional, or social problems or health risk behaviors that can adversely affect the health and emotional or social well-being of their child. FAMILY CONTEXT OF CHILD HEALTH: The power and importance of families to children arises out of the extended duration for which children are dependent on adults to meet their basic needs. Children's needs for which only a family can provide include social support, socialization, and coping and life skills. Their self-esteem grows from being cared for, loved, and valued and feeling that they are part of a social unit that shares values, communicates openly, and provides companionship. Families transmit and interpret values to their children and often serve as children's connection to the larger world, especially during the early years of life. Although schools provide formal education, families teach children how to get along in the world. Often, efforts to discuss families and make recommendations regarding practice or policy stumble over disagreements about the definition of a family. The task force recognized the diversity of families and chose not to operate from the position of a fixed definition. Rather, the task force, which was to address pediatrics, decided to frame its deliberations and recommendations around the functions of families and how various aspects of the family context influence child rearing and child health. One model of family functioning that implicitly guided the task force is the family stress model (Fig 1). Stress of various sorts (eg, financial or health problems, lack of social support, unhappiness at work, unfortunate life events) can cause parents emotional distress and cause couples conflict and difficulty with their relationship. These responses to stress then disrupt parenting and the interactions between parent and child and can lead to short-term or lasting poor outcomes. The earlier these events transpire and the longer that the disruption lasts, the worse the outcomes for children. The task force favors efforts to encourage and support marriage yet recognizes that every family constellation can produce good outcomes for children and that none is certain to yield bad ones. (ABSTRACT TRUNCATED)

Decline in psychosocial functioning seems to be a core feature in schizophrenia across various phases of the disorder. Little is known about the relationship between psychosocial functioning and protective factors or psychopathologies in individuals in the prodrome phase of psychosis. We aimed to investigate whether psychosocial functioning is impaired in individuals in the putative prodromal phase of schizophrenia, and, if so, to identify factors associated with compromised psychosocial functioning.
Sixty participants at ultra-high risk (UHR) for psychosis and 47 healthy controls were recruited. All subjects were assessed in terms of psychosocial functioning using the Quality of Life Scale. A clinical assessment of psychopathology and protective factors, including resilience and coping style, was also conducted.
Psychosocial functioning in UHR participants was found to be compromised; this dysfunction was associated with negative symptoms, adaptive coping, and resilience. In addition, baseline resilience was lower among those in the UHR group who converted to frank psychosis than among those who did not.
These findings imply that treatment strategies for individuals at UHR for psychosis should be comprehensive, promoting resilience as well as targeting the reduction of positive and negative symptoms to foster social reintegration and recovery.


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Affiliation Details

  • School of Medicine at the Seattle Children's Hospital, at the Fred Hutchinson Cancer Research Center, University of Washington.
  • School of Medicine at the Seattle Children's Hospital
Affiliation School of Medicine at the Seattle Children's Hospital, at the Fred Hutchinson Cancer Research Center, University of Washington.