A population-based study of the quality of life of cancer survivors and their family caregivers

Although survival rates for all cancers continue to increase, few studies have examined the quality of life of both cancer survivors and family caregivers during the survivorship period after treatment has ended. Information is lacking on the stressors, resources, meaning, and quality of life reported by survivors and family caregivers and the interrelationship between survivors' and family caregivers' quality of life. A stratified, random sample of 123 cancer survivors and 123 family caregivers (N = 246) were interviewed in an exploratory, cross-sectional design 1-6 years after cancer treatment had ended. Approximately half (N = 62) of the dyads were white and half (N = 61) were African American. Results indicated that cancer survivors reported significantly higher quality of life, less fear of cancer recurrence, and more support than their family caregivers. The strongest predictors for cancer survivors' quality of life were family stressors, social support, meaning of the illness, and employment status, whereas the strongest predictors for family caregivers' quality of life were fear of recurrence and social support. Both the survivor's and family caregiver's quality of life independently contributed to the other's quality of life. Findings from this study suggest the importance of including both survivors and family caregivers in programs of care.     

Life after cervical cancer: quality of life among Chinese women

This study explored the meaning of "quality of life" among Chinese survivors of cervical cancer and the impact of cervical cancer survivorship on these women's quality of life. Written responses were used as the means of data collection. The qualitative data were analyzed by using a qualitative content analysis. The meaning of "quality of life", as perceived by 35 Chinese survivors of cervical cancer, included being free of disease, having a good standard of living, having a harmonious family atmosphere, and having a harmonious sex life. The impact of cervical cancer on the Chinese women's quality of life included physical and psychological sequelae, family distress, financial burden, and disruptions to their social functioning and sexual life. Nevertheless, there were positive gains that were reported by these survivors, including changes in their outlook on life, treasuring their life, and better family relationships. This study revealed that the Chinese survivors of cervical cancer identified their sexual life as one of the essential indicators of quality of life. It is necessary to raise nurses' awareness so that women's sexuality-related concerns are addressed. Health professionals also should provide relevant supportive care in order to address this target population's physical and psychosocial needs across the survivorship continuum.     

The psychosocial impact of recurrence on cancer survivors and family members: a narrative review

Title.  The psychosocial impact of recurrence on cancer survivors and family members: a narrative review.
Aim.  This paper is a report of a review undertaken to identify, critically analyse and synthesize the psychosocial experience of cancer recurrence for survivors and family members.
Background.  Recurrence of cancer is an event after which life changes for families. Individuals move from being short- or long-term survivors of cancer to being patients once more. Families move from a state of fear of recurrence to one of uncertainty and distress as a result of the new crisis.
Data sources.  MEDLINE, CINAHL and CancerLit databases were searched for the period January 1980–2007. Reference lists of papers were conducted for relevant studies. The search terms recurrence, recurrent cancer, experience, survivor and family were searched for separately and in combination.
Review methods.  A narrative review was conducted. Data were categorized in terms of issues during survivorship and concerns after recurrence.
Results.  Three main categories were identified that explained survivors' and families' experiences of recurrent cancer: (1) fear of recurrence during survivorship, (2) when cancer recurs: families facing new challenges and (3) distress because of recurrence.
Conclusion.  Recurrence is a distressing experience for survivors and families because they have to face again psychosocial effects of cancer, such as uncertainty, distress and concerns about death. Care should not be addressed simply to survivors, but should include the general well-being of families beyond their survivorship and support to manage better psychosocial issues occurring when a member has a recurrence of cancer.     

Breast cancer survivors’ supportive care needs 2–10 years after diagnosis

GOALS OF THE WORK: A significant proportion of breast cancer patients experience psychosocial morbidity after treatment, although their longer-term outcomes and supportive care service needs have not been comprehensively documented. The aim of this study was to identify longer-term outcomes and supportive care needs in disease-free breast cancer survivors. MATERIALS AND METHODS: One hundred seventeen patients who had been diagnosed with breast cancer 2-10 years earlier completed questionnaires to assess psychosocial outcomes including supportive care needs, psychological distress, and quality of life (QoL). MAIN RESULTS: QoL and depression scores were consistent with community rates although anxiety scores were higher. Approximately two thirds of survivors reported at least one unmet need, most frequently concerning existential survivorship issues, thereby highlighting the unique needs of survivors. Years since diagnosis was not correlated with need levels. Survivors classified as clinically anxious reported over three times as many unmet needs and survivors classified as depressed reported over two and a half times as many unmet needs. Positive outcomes were frequently reported. CONCLUSIONS: The findings have direct clinical relevance: irrespective of years since diagnosis, comprehensive and extended supportive care services are required to identify breast cancer survivors in need of supportive care interventions and remediate high levels of anxiety.     

Well-being in informal caregivers of survivors of acute respiratory distress syndrome

OBJECTIVE: With limited community services, the complex rehabilitation period after critical illness is often the responsibility of family members who, as a result, may experience negative health outcomes. The objectives of this research were to a) identify aspects of the caregiving situation that are associated with caregivers' experiences of emotional distress and psychological well-being; and b) compare health-related quality of life of informal caregivers to survivors of acute respiratory distress syndrome (ARDS) with age- and gender-matched population values. DESIGN: Cross-sectional survey of informal caregivers to ARDS survivors. SETTING: Toronto, Ontario, Canada. PATIENTS: Informal caregivers were individuals who were primarily responsible for providing and/or coordinating ARDS survivors' posthospital care and were not paid to do so. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The dependent variables were emotional distress, psychological well-being, and health-related quality of life. They were evaluated by the Center for Epidemiologic Studies Depression Scale, the Positive Affect Scale, and Medical Outcomes Study Short Form 36, respectively. Independent variables included severity of illness indicators, patient depression (Beck Depression Inventory II), aspects of the caregiving experience (care provided, lifestyle interference, personal gain), and psychosocial resources (mastery and social support). Caregivers experienced more emotional distress when they experienced more lifestyle interference, had lower levels of mastery, and were caring for ARDS survivors with more depressive symptoms (F3,42 = 15.69, p < .001, adjusted R = .50). In contrast, caregiver psychological well-being was associated with personal gains as a result of providing care and having more mastery and social support (F4,41 = 9.40, p < .001, adjusted R = .43). Caregivers reported poorer health-related quality of life across all domains of the Medical Outcomes Study Short Form 36 compared with age- and gender-matched population values. CONCLUSIONS: Informal caregivers experience negative health outcomes that persist almost 2 yrs after ARDS. New approaches, such as family-centered rehabilitation, caregiver education, improved respite, and home care, may benefit informal caregivers.     

Family survivorship and quality of life following a cancer diagnosis.

The objectives of this study were: (a) to examine the quality of life of the family as a unit during the long-term survivor phase of illness and (b) to test a family model of factors that may influence family quality of life. The family survivorship model, which includes illness survival stressors (family stressors, fear of recurrence, and patient somatic concerns), resources (family hardiness and family social support), appraisal (family meaning of the illness), and the outcome, family quality of life, was used to guide this exploratory cross-sectional study. A random, stratified sample of 123 families (N = 246 individuals) was interviewed 1-5 years after treatment ended. The model explained 63% of the variance in family quality of life, with the strongest predictors being concurrent family stressors, family social support, family member fear of recurrence, family meaning of the illness, and patient employment status. The study findings suggest the importance of addressing cancer-related stressors, family resources, and family meaning as key factors related to family quality of life.     

The quality of life of African American women with breast cancer

The objectives of this study were to describe the quality of life of African American women with breast cancer and test a model of factors that may affect their quality of life. A stress-coping framework that included person (demographics, current concerns, and optimism), social resources (family functioning), and illness-related factors (symptom distress, medical characteristics), as well as appraisal of illness and quality of life, was used to guide this exploratory, cross-sectional study. Participants included 98 African American women who were approximately 4 years postdiagnosis. The women reported a fairly high quality of life, were generally optimistic, and had effective family functioning. Although symptom distress was generally low, a sizable number of women reported problems with energy loss, sleep disturbances, and pain. The model explained 75% of the variance in quality of life, with appraisal, family functioning, symptom distress, and recurrence status each explaining a significant amount of the variance. Current concerns had an indirect effect on quality of life that was mediated by appraisal. These findings underscore the importance of helping women foster a positive appraisal of their illness, manage current concerns, maintain family functioning, and reduce symptom distress, because each of these factors indirectly or directly affects their quality of life.     

Comparison of health‐related quality of life and emotional distress among Chinese cancer survivors

The purpose of this study is to compare health‐related quality of life (HRQoL) and emotional distress among diverse cancer survivors who had completed all treatment within the previous year. A convenience sample of 353 cancers survivors (lung, head and neck, breast and prostate cancers) were recruited to complete a survey, which consisted of (i) Hospital Anxiety and Depression Scales; (ii) Chinese version of the Functional Assessment of Cancer Therapy—General version; and (iii) demographic and clinical data. The HRQoL scores were similar among the four types of survivors. Mild anxiety and depression levels were reported, but no significant difference was noted. Younger females with financial burdens and uncertain prognosis were particularly associated with HRQoL and emotional distress. Further studies are essential to identify specific problems that cancer patients experience after cancer diagnosis that might lead to the early detection of those most at risk of ongoing problems.     

An advocate's perspective on cancer survivorship

OBJECTIVE: To illustrate the scope of advocacy in cancer survivorship and to emphasize the critical role that health care providers play to help improve the quality of life of cancer survivors. DATA SOURCES: Published articles, government reports, and books. CONCLUSIONS: The delivery of quality cancer care requires not only an understanding of cancer survivorship issues but also a strategy for advocacy efforts for cancer survivors and their families. IMPLICATIONS FOR NURSING PRACTICE: Advocacy efforts involve individual interventions and family-focused support, public and professional education, and programs and policies that enhance cancer care and quality of life.     

Experience of stigmatization by relatives of patients with obsessive compulsive disorder

Patients with mental illness and their relatives experience discrimination and stigmatization in their everyday lives. The stigma of mental illness has been investigated in numerous studies. However, the subjective experiences of patients with OCD and their relatives have not been reported up until now. Narrative interviews with 22 family members of patients with obsessive-compulsive disorder were performed as part of a study on the burden and distress among the families of those with mental illness. Stigma experiences were analyzed using a grounded theory approach. Different areas of life could be described, where stigmatization is anticipated or concretely experienced by relatives of patients with OCD. Concealing is an important coping strategy for the family members interviewed. Stigmatization can be reduced by handling the illness and the co-operation of patients, their relatives, and the professionals in an unbiased manner.     

The long-term experience of family life after stroke

Stroke is a life-threatening and disabling illness known to have a significant impact on families. The purpose of this study was to illuminate the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital and parent-child relationships. Thirty-seven narrative interviews were conducted with stroke survivors and their spouses and adult children who were minors at onset of the illness. A qualitative approach inspired by Gadamer's hermeneutic and van Manen's phenomenological understanding of lived experience was used. The analysis revealed four themes: the family as a lifebuoy, absent presence, broken foundations, and finding a new marital path. Lack of communication and altered roles and relationships endangered marital equilibrium and parent-child relationships after stroke. This study highlighted the need for professional family support as families were unprepared for the life changes that occurred. Nurses and other healthcare workers should examine family relationships and communication patterns and view the family as a unit composed of unique persons with different needs. Further research on the experiences of stroke survivors' children seems urgent.     

Insomnia in adult survivors of childhood cancer: a report from project REACH

Purpose

Insomnia is a common problem affecting cancer survivors even years after completion of therapy. Childhood cancer survivors may be at particular risk due to vulnerability to the effects of treatment and medical late effects which impact normal sleep development. Using an indicator of clinically significant insomnia (sleep efficiency), we examined a group of adult survivors of childhood cancer to (1) describe clinical insomnia rates, (2) identify physical and psychological correlates of insomnia, and (3) investigate the frequency with which sleep issues were evaluated during a cancer survivorship medical visit.

Methods

A total of 122 adult survivors of childhood cancer completed standard measures of sleep, psychological distress, and health-related quality of life. Medical records of the 75 survivors with a survivorship medical visit on the day of self-report measure completion were reviewed for documentation of sleep-related issues.

Results

Twenty-eight percent of participants endorsed sleep efficiency below 85 %, indicating clinically significant insomnia. Insomnia was associated with poor physical health and anxiety but not with demographic or cancer treatment variables. Medical providers failed to document sleep in visit notes for 67 % of patients with self-reported insomnia.

Conclusions

A significant proportion of adult survivors of childhood cancer report insomnia, which is associated with physical and psychological health. Few survivors with insomnia discuss this issue with oncology providers during survivorship care. There is a clear need to screen for insomnia in this population. Patients and providers should take greater responsibility for discussing sleep issues and seeking out proper treatment referrals when it is identified.     

Caring for children with life-threatening illnesses: impact on white, african american, and latino families

We describe the racial and ethnic variation in family impact resulting from caring for a child with a life-threatening illness. Parents of children aged 2-21 years diagnosed with a potentially life-threatening illness and enrolled in Florida's Medicaid and Children's Medical Services Network programs were surveyed. Two hundred sixty-six telephone surveys were conducted in English and Spanish between November 2007 and April 2008. In adjusted models, compared with Whites, Latinos reported that their child's illness resulted in a greater negative impact on the family. Continued study of this group of parents is critical to developing culturally appropriate interventions to reduce strain and burden and improve the quality of life for families.     

Psychological distress in survivors of Hodgkin's disease

The object of this study was to reveal the psychological distress among survivors of Hodgkin's disease. Between 1985 and 1993, 55 patients were treated for Hodgkin's disease at our small oncological unit. In December 1994 all 49 survivors were mailed a questionnaire consisting of the Impact-of-Event Scale and a visual-analogue scale measuring quality of life, to which 42 patients responded (86%). Half of the patients reported moderate to high levels of psychological distress. Scores predicting significant stress response syndrome were revealed in 19% of the patients. Women reported statistically significant lower psychological distress on the intrusion (P=0.025) and avoidance scale (P=0.047) and a higher quality of life (P=0.032). In order to improve patients' care and support, cases at risk should be identified. Among patients with Hodgkin's disease, men seems to be at highest risk. This study should be helpful for developing supportive interventions for survivors of Hodgkin's disease.     

Family affairs

It's no secret that your job is stressful, forcing you to deal with tragedy and death on a regular basis. You've become good at what you do because you pay attention to details and care about people. Most of the EMS providers I've known dedicate untold hours to their work, usually in addition to the regular jobs they hold. Their communities need them to be ready at a moment's notice when the pager sounds. Someone is in crisis. A life may hang in the balance-a life they may save. But what about the family that's left behind as you run out the door-yet again? How do your spouse/significant other and kids cope with whatever emotional state you're in when you return home? While your stress may be evident, their distress may be overlooked. What price do they pay to live with you? These questions were addressed during several workshops my colleagues and I conducted for EMS providers and their families. Many of the problems and frustrations identified in this article were shared by EMTs' family members who attended.     

Quality of life of cancer patients receiving inpatient and home-based palliative care

AIMS: This paper reports a comparative study of the symptom experience, physical and psychological health, perceived control of the effects of cancer and quality of life of terminally ill cancer patients receiving inpatient and home-based palliative care, and the factors that predict quality of life. BACKGROUND: Quality of life is a major goal in the care of patients with terminal cancer. In addition to symptom management, psychological care and provision of support, being cared for at home is considered an important determinant of patient well-being. A more comprehensive understanding of the impact of cancer on patients and their families will inform the delivery of palliative care services. METHODS: Fifty-eight patients with terminal cancer (32 inpatients, 26 home-based) were recruited from major palliative care centres in Australia in 1999. A structured questionnaire designed to obtain sociodemographic information, medical details and standard measures of symptoms, physical and psychological health, personal control and quality of life was administered by personal interview. RESULTS: The two groups were similar on most demographic measures, although more home-care patients were married, of Australian descent and had private health insurance cover. The most prevalent symptoms reported were weakness, fatigue, sleeping during the day and pain. Patients receiving home-based services had statistically significantly less symptom severity and distress, lower depression scores, and better physical health and quality of life than those receiving inpatient care. Home-care patients also reported statistically significantly more control over the effects of their illness, medical care and treatment received, and the course of the disease. Multiple regression analyses showed that better global physical health, greater control over the effects of cancer and lower depression scores were statistically significant predictors of higher quality of life. CONCLUSIONS: The main issues arising from the findings for nurses are the early detection and management of both physical and psychological symptoms, particularly fatigue, pain, anxiety and depression, and the need to use strategies that will empower patients to have a greater sense of control over their illness and treatment. Research is needed to identify other factors that may impact on quality of life, and to establish the extent to which inpatient and home-based care meets the needs of both the patient with terminal cancer and their family.