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.     

PS1-09: Comparing the Greatest Challenges of Long-Term Rectal Cancer Survivors with Anastomosis Versus Ostomy

Background Patients surgically treated for rectal cancer receive either an intestinal ostomy (externalization of the bowel to the abdominal wall) or, more frequently, an anastomosis (reconnection) of the rectum. While the challenges of intestinal ostomies have been previously described by this research team, much less is known about the long-term challenges of living with an anastomosis. Understanding the challenges of long-term rectal cancer survivors with both types of surgeries is important for informing and improving current practice. Methods We mailed our survey to 1000 long-term (at least 5 years post-diagnosis) rectal cancer survivors in KP Northern California and KP Northwest during 2010-2011. Our overall response rate was 57.7% (577/1000). The survey contained an open-ended question that asked respondents to write about the greatest challenge they experienced after their cancer surgery. Seventy-three percent of respondents provided a response to this "greatest challenge" question. Responses were analyzed qualitatively to compare the challenges reported by patients with anastomosis vs. ostomy. Results Challenges related to managing bowel function and output were found in both groups. Ostomy patients reported challenges to managing ostomy equipment that were unique to their condition-ostomy appliance failures, skin breakdown around the ostomy, and finding suitable places to empty, clean, and reconnect their appliance. Other notable differences in the greatest challenges among ostomy and anastomosis patients included: patients with an ostomy reported a range of psychosocial challenges relating to depression, shame, stigma, and post-operative psychological trauma about having an ostomy and such psychosocial impacts were notably absent among anastomosis patients; patients with ostomies reported regret about having an ostomy, but patients with anastomosis did not report regret about the surgery they received; and, anastomosis patients mentioned more challenges from radiation after effects, including pain, fistulae, and strictures. Discussion Our findings about rectal cancer survivors with ostomies mirror previously published reports. Even in the face of impaired bowel function, rectal cancer survivors with anastomoses express little psychological distress or regret about treatment choice. The lasting effects of radiation therapy, however, are of special concern to this group.     

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.     

Psychological distress of female cancer caregivers: effects of type of cancer and caregivers’ spirituality

Introduction This study examined the effects of the survivor’s cancer type (gender-specific vs nongender-specific) and the female caregiver’s spirituality and caregiving stress on the caregiver’s psychological distress. Cancer caregivers, who were nominated by cancer survivors, participated in a nationwide quality-of-life survey with 252 caregivers providing complete data for the variables. Patients and methods Breast and ovarian cancer were categorized as gender-specific types of cancer (GTC+), whereas kidney, lung, non-Hodgkin’s lymphoma (NHL), and skin melanoma cancers were GTC-. Spirituality, caregiving stress, and psychological distress were measured using the functional assessment of chronic illness therapy—spiritual well-being, stress overload subscale, and profile of mood states—short form, respectively. Results and discussion Hierarchical regression analyses revealed that female caregivers whose care recipient was diagnosed with a nongender specific type of cancer (GTC- group) reported higher psychological distress than did the GTC+ group. The GTC- group also reported lower spirituality and higher caregiving stress related to higher psychological distress than did the GTC+ group. In addition, the beneficial effect of spirituality on reducing psychological distress was more pronounced among the GTC- group or when caregiving stress increased. Conclusions Our findings suggest that female caregivers of survivors with a nongender-specific cancer may benefit from programs designed to reduce their psychological distress, and caregivers who are low in spirituality need help to derive faith and meaning in the context of cancer care.     

Female caregivers of stroke survivors: coping and adapting to a life that once was

Despite the prevalence of women caring for stroke survivors, relatively little research has focused specifically on the experience and needs of informal female caregivers of stroke survivors. Therefore, the purpose of this study was to describe the experience of female caregivers who care for an adult family member who has experienced a stroke within the previous year using a qualitative methodology. A sample of 46 female caregivers of stroke survivors completed a demographic form and responded to open-ended written questions exploring their experiences as caregivers and how they coped with changes in their lives during the first year after the stroke. Four concepts emerged from the data: losing the life that once was, coping with daily burdens, creating a new normal, and interacting with healthcare providers. Findings suggest that female caregivers of stroke survivors grieve the life that they once shared with the stroke survivor and struggle to cope with multiple family and work demands while trying their best to interact with healthcare providers to attain the best possible care for their loved ones. Recognizing the unique challenges of female caregivers of stroke survivors may help nurses provide better support and resources to meet their needs.     

Common peristomal skin problems and potential treatment options

Stomas are encountered by nurses in many different fields and may be newly formed or many years old. Caring for ostomists can be problematic, particularly if complications occur. One of the more common problems for ostomists is excoriated peristomal skin. Sore skin can occur for a number of reasons and the cause can be an indicator for the therapy required. At times the treatment can be simple but often the skills of a stoma specialist nurse are required. This article focuses on some of the more commonly encountered ostomy problems that nurses may be faced with. The potential problems are described and potential treatment options are offered.     

Cuidados y tratamiento del pioderma gangrenoso periestomal. A propósito de tres casos

Peristomal gangrenous pyoderma is an inflammatory skin disease with progression to painful ulcer, rare, and rarely associated with colorectal carcinoma.Its diagnosis is differential since it can be confused with skin infection, abscess, contact dermatitis, peristomal irritation or peristomal skin extension of an inflammatory bowel disease.We present three cases of patients operated for colorectal carcinoma with an intestinal stoma, who developed peristomal gangrenous pyoderma.A plan of local care and dressings was developed using the NANDA, NOC and NIC taxonomies.Stoma care and fitting of collecting devices were performed with saline solution, paste, ostomy powders and a two-piece bag.For the basic local treatment, physiological serum or washing solution was used for wound cleaning, aqueous eosin (2%), alginate in the exudative phase, and collagenase ointment in the presence of slough/necrosis.Specific local treatment (clobetasol propionate, tacrolimus, or triamcinolone acetonide infiltration) and systemic treatment (corticosteroid therapy) was given sequentially after the diagnosis of peristomal gangrenous pyoderma depending on the clinical response to each treatment.Case 1 resolved at six months with a good response to local triamcinolone infiltration. Case 2 resolved at 10 months after local infiltration with triamcinolone and oral prednisolone. Case 3 had no response to local treatments or systemic corticosteroid therapy, healing after tumour and metastatic excision with relocation of the stoma at nine months.     

Peristomal skin integrity

The primary goal of skin care for the person with a stoma is prevention of skin breakdown. The first step is careful maintenance of the skin from the time of surgery forward. The patient and family should be taught every step of protecting the skin and recognizing early signs and symptoms of potential breakdown. The loss of peristomal skin integrity affects the person's entire well-being. Pouches will not adhere as well and accidental leaks occur. The impact on psychologic well-being is difficult to measure, but can be assumed to be significant. A circular effect can begin in which the skin irritation leads to accidents, which further compromise the skin integrity. Time may be lost from work or school. Damaged skin is also painful. The cost of treating peristomal skin breakdown can be high. The products used in ostomy care are relatively expensive. A single skin barrier may range from $3 to $5. Frequent changes will be necessary to assess and treat the lesions adding to the cost. Prevention is in the realm of effective nursing care and will include assessment of the skin, selection and application of appropriate pouches and skin barriers, patient and family teaching programs, and follow-up evaluations after hospitalization.     

The ostomy skin tool: tracking peristomal skin changes

The Ostomy Skin Tool is a standardized measuring instrument for assessing the extent and severity of peristomal skin change in terms of discolouration (D), erosion (E), and tissue overgrowth (T) (DET). The reliability and validity of this tool has been determined in a previous study. The purpose of this article is to highlight the study's most important findings, and to demonstrate the usefulness of the DET score by evaluating three examples of peristomal skin changes. Additionally, a simplified categorical severity scale (defining 'mild', 'moderate', and 'severe' conditions) is introduced that may improve clinical interpretation of the DET score. It is reasonable to conclude that the DET score may empower the ostomy care nurse with an evidence-based platform to make qualified decisions on evaluation and treatment of peristomal skin disorders.     

Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge.

During the first few months after a stroke, family caregivers must quickly learn how to care for the stroke survivor in the home setting. Although there are some studies that addressed the needs and concerns of stroke caregivers during the early poststroke period, there are very few caregiver studies that reported strategies used by caregivers to deal with their needs and concerns, and studies are lacking that reported the advice that caregivers would offer to others. The purpose of this study was to determine the self-reported needs, concerns, strategies, and advice of family caregivers of stroke survivors during the first 6 months after hospital discharge. Using openended questions, we individually interviewed 14 female family caregivers of stroke survivors (8 African American, 6 white) to identify their needs and concerns, strategies they used to deal with stroke, and advice they would offer to other stroke caregivers. Findings revealed five major categories of caregiver needs and concerns: information, emotions and behaviors, physical care, instrumental care, and personal responses to caregiving. Based on the findings, an initial needs and concerns checklist was developed, along with a list of caregiver strategies and advice. Upon further testing, the needs and concerns checklist, as well as the list of strategies and advice, may help to identify relevant areas for caregiver intervention.     

54例肠造口刺激性皮炎患儿的护理

肠造口刺激性皮炎不仅引起患儿疼痛不适、周围皮肤感染,影响二期手术的进行,还会增加患儿或照顾者的心理压力。通过对54例患儿肠造口刺激性皮炎的原因进行分析,找出引起儿童肠造口周围皮炎的主要原因,根据具体原因选用适合的造口护理用品和粘贴方法,并根据皮炎的程度采取不同的处理方法,详细指导患儿家属造口护理知识与技能,定时门诊复查及追踪指导。所有患儿肠造口刺激性皮炎均在2～8d内愈合,未再发生刺激性皮炎。     

Peristomal skin care and the use of accessories to promote skin health

Stomas are frequently encountered by nurses. Common complications include problems with the peristomal skin-the skin around the stoma. It has been reported that up to 80% of people with a stoma, who are termed ostomates, are affected. The three main types of stomas are colostomy, ileostomy and urostomy; all these come with a risk of sore peristomal skin. These stomas pass faeces or urine, which are collected in a stoma appliance that adheres to the peristomal skin. It is essential to ensure that this skin is free from breaks or soreness as this might lead to appliance leakage. This article is aimed at ward nurses and will focus on some of the stoma accessories that are used to treat, protect or 'level' peristomal skin. Accessories, such as barrier creams or films, can be used to protect skin. Filler paste, seals and convex appliances, for example, can be used to resolve creases in the skin or to treat a retracted stoma. The situations in which stoma accessories might be useful in resolving peristomal skin problems or retaining its integrity are numerous.     

Influence of stroke survivor characteristics and family conflict surrounding recovery on caregivers' mental and physical health

BACKGROUND: Stroke recovery is a dynamic process for stroke survivors, and shorter lengths of stay in healthcare settings shift the care of the survivors to family caregivers. The physical and mental sequelae after stroke and the family's response to this catastrophic event may have deleterious effects on caregivers. OBJECTIVE: To examine the influence of stroke survivors' motor function, their memory and behavior changes, and the family conflict surrounding stroke recovery on the mental and physical health of caregivers during the subacute recovery period. METHODS: This cross-sectional, correlational study used baseline data from family caregivers (n = 132) and first-time stroke survivors enrolled in a larger multisite study. RESULTS: The caregivers were primarily White (71%), female (74%), college-educated (73%) spouses (80%) of survivors. Most of the caregivers (66%) reported family conflict. The caregivers from families with lower family functioning scores reported worse mental health.The caregivers reported lower mental health when they were caring for stroke survivors with a combination of high memory/behavior changes and low motor function (R =.30). Family conflict appears to exacerbate the impact of memory and behavior changes on caregiver mental health. Higher caregiver education and no major health problems were associated with better caregiver physical health (R =.36). Caregiver physical health was not associated with family functioning or stroke survivor memory and behavior changes. CONCLUSIONS: These results indicate that memory and behavior changes of stroke survivors and family conflict surrounding stroke recovery are important considerations for assessment during the poststroke recovery period.     

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.     

My experience with the Cancer Survival Toolbox

Nurses are instrumental in educating patients and their families about how to navigate the cancer experience. Patients often state that they would not know much about their disease and treatment if not for their nurse's teaching. The Cancer Survival Toolbox, a comprehensive set of audiotapes, is a free resource that helps people dealing with cancer develop and use key coping skills--communicating, finding information, making decisions, solving problems, negotiating, and standing up for their rights. Supplemental modules deal with issues facing the underinsured and uninsured, barriers to care for older cancer survivors, and concerns of caregivers. The Cancer Survival Toolbox Group Facilitator's Training Manual is a valuable resource for anyone working with cancer support groups. All healthcare professionals, cancer survivors, and lay caregivers can use the toolbox in a variety of ways. This article offers suggestions about how to ensure that cancer survivors and caregivers have the opportunity to use this unique resource.     

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

Purpose

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.

Methods

Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.

Results

Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.

Conclusions

Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.

Structured abstract

The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.     

The impact of providing symptom management assistance on caregiver reaction: results of a randomized trial

This research evaluates the impact of a randomized clinical trial for lowering family members' reactions and increasing their involvement in assisting cancer patients undergoing chemotherapy to better manage their symptoms. The cognitive behavioral intervention was directed toward both the patient and family caregivers. At 10 weeks, caregivers who received the experimental intervention had significantly lower total reactions to assisting with symptoms and assisted with significantly fewer symptoms (linked to patient improvement in symptom severity) than caregivers receiving conventional care alone. Female caregivers receiving the intervention reported significantly lower reaction per symptom where assistance was provided compared to female caregivers in the control group. Thus, the intervention did not increase caregiver involvement in symptom management, quite possibly due to reduced symptom severity among patients in the intervention group. This research offers a model for evaluating trials directed toward both members of a dyad.