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1.
Article in English | MEDLINE | ID: mdl-39008423

ABSTRACT

Purpose: A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives. Methods: Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation. Results: Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19-29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face "my cancer" in my way, and (3) I feel that I would be okay with "my cancer." Conclusions: AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs' experiences to appropriately support them to successfully proceed further.

2.
Support Care Cancer ; 32(2): 112, 2024 Jan 18.
Article in English | MEDLINE | ID: mdl-38236480

ABSTRACT

PURPOSE: Nigeria has the highest burden of breast cancer (BC) in Africa. While the survival rates for BC are over 90% in many high-income countries; low-and middle-income countries like Nigeria have 40% BC survival rates. Prior studies show that the burden and poor BC survival rates are exacerbated by both health system and individual level factors, yet there is a paucity of literature on the experiences of BC survivors in Nigeria. Hence, this study explored the divergent and convergent experiences of BC survivors in accessing, navigating, and coping with treatment. METHODS: Participants (N = 24, aged 35 to 73 years) were recruited and engaged in focus group discussions (group 1, n = 11; group 2, n = 13 participants). Transcripts were transcribed verbatim and analyzed with inductive thematic analysis. RESULTS: Four themes were identified: "I am carrying this [breast cancer] alone," "Living my life," "'God' helped me," and "A very painful journey." Participants described how they concealed their BC diagnosis from family and significant others while accessing and navigating BC treatment. Also, they adopted spiritual beliefs as a coping mechanism while sticking to their treatment and acknowledging the burden of BC on their well-being. CONCLUSIONS: Our findings explored the emotional burden of BC diagnosis and treatment and the willingness of the BC survivors to find meaning in their diagnosis. Treatment for BC survivors should integrate supportive care and innovative BC access tools to reduce pain and mitigate the burdens of BC. IMPLICATIONS FOR CANCER SURVIVORS: The integration of innovative technologies for venous access and other treatment needs of BC is crucial and will improve survivorship. Non-disclosure of BC diagnosis is personal and complicated; hence, BC survivors need to be supported at various levels of care and treatment to make meaningful decisions. To improve survivorship, patient engagement is crucial in shared decision-making, collaboration, and active participation in care.


Subject(s)
Breast Neoplasms , Cancer Survivors , Humans , Female , Breast Neoplasms/therapy , Spouses , Survivors , Survivorship , Pain
3.
Radiography (Lond) ; 29 Suppl 1: S81-S86, 2023 05.
Article in English | MEDLINE | ID: mdl-36828748

ABSTRACT

INTRODUCTION: The healthcare support needs of the lesbian, gay, bisexual (LGB) and transgender community are becoming an emerging area of healthcare research. Providing person-centred care is World Health Organisation policy and as such it is important that Radiography services can demonstrate areas in which they are working with people to design, develop and feedback on the services that they receive. This research aimed to establish how cancer treatment impacted on the identities of LGB people, their experiences of care, and their engagement with developing a practitioner guide. METHODS: This cooperative inquiry is underpinned by person-centred philosophy and participatory research principles. Participants were nine lesbian, gay, and bisexual people affected by cancer. Each engaged in two facilitated, audio-recorded conversations to explore their experiences of cancer care. An analytical framework based on Mezirow's Transformational Theory was used to organise the data, followed by detailed content analysis to develop themes. RESULTS: Participants included men and women, aged 45-68, who had experienced different cancers. They explored how cancer treatment had impacted on them, and worked with the researcher and stakeholders to establish a seven-recommendation practitioner guide aimed at improving LGB people's care experiences. Their accounts revealed a broad range of issues that both corroborate and build on existing evidence. Themes highlighted expectations and experiences of both assumptions and prejudice in healthcare interactions. These experiences, along with misinterpretation of relationships with significant others, led to feelings of discomfort and reserve about self-expression. Findings of the research are presented in the following key areas: Dilemmas of attending oncology appointments; Inclusive experiences of care; and Formulation of the practitioner guide. CONCLUSION: The research findings enabled development of a national practitioner guide with the participants and key stakeholders to raise awareness of the needs of LGB persons affected by cancer and support better care. IMPLICATIONS FOR PRACTICE: By providing real-life accounts this research adds to understanding of how LGB persons interact with services, developing evidence to support cultural competence within the profession of Radiography and oncology services more broadly.


Subject(s)
Homosexuality, Female , Neoplasms , Sexual and Gender Minorities , Male , Humans , Female , Bisexuality , Delivery of Health Care , Neoplasms/therapy
4.
Palliat Support Care ; 21(3): 465-476, 2023 06.
Article in English | MEDLINE | ID: mdl-36285508

ABSTRACT

OBJECTIVE: Enhancing cancer patients' sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients' perceived control over key personal priorities within their cancer experience. METHODS: VOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515). RESULTS: A 21-item measure was developed that captures cancer patients' sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67-0.89) and adequate to strong convergent and discriminatory validity. SIGNIFICANCE OF RESULTS: VOICE measures cancer patients' perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.


Subject(s)
Neoplasms , Social Support , Humans , Surveys and Questionnaires , Reproducibility of Results , Psychological Well-Being , Psychometrics/methods , Neoplasms/complications
5.
Article in English | WPRIM (Western Pacific) | ID: wpr-998795

ABSTRACT

@#Introduction: Breast cancer is now one of the leading causes of death and morbidity worldwide, including in Indonesia. Every health care professional and community member should pay close attention to these issues. Women diagnosed with breast cancer will experience physical, psychological, and social issues. Methods: This study looked into breast cancer patients’ experiences with holistic nursing care. The complexity of the difficulties confronting breast cancer patients will influence their experiences and perceptions, necessitating a holistic approach to nursing services. A qualitative exploratory, descriptive method was adopted in the investigation. During data collection, fifteen participants were recruited and interviewed. Focus Group Discussion (FGD) was utilized to collect data. Result: The study’s findings provide five significant themes: (1) knowledge and understanding of breast cancer; (2) experiences felt at the beginning of breast cancer complaints; (3) non-health breast cancer treatment; (4) perception of nursing services received by breast cancer patients; (5) facts and holistic needs during and beyond treatment; and (6) patients’ expectations of nursing services to help their needs. Conclusion: The findings provide information on how breast cancer patients understand the examination procedure, accept a diagnosis, and proceed to treatments.

6.
JMIR Cancer ; 8(4): e35310, 2022 Oct 06.
Article in English | MEDLINE | ID: mdl-36201388

ABSTRACT

BACKGROUND: Prior studies, generally conducted at single centers with small sample sizes, found that individuals with cancer experience more severe outcomes due to COVID-19, caused by SARS-CoV-2 infection. Although early examinations revealed greater risk of severe outcomes for patients with cancer, the magnitude of the increased risk remains unclear. Furthermore, prior studies were not typically performed using population-level data, especially those in the United States. Given robust prevention measures (eg, vaccines) are available for populations, examining the increased risk of patients with cancer due to SARS-CoV-2 infection using robust population-level analyses of electronic medical records is warranted. OBJECTIVE: The aim of this paper is to evaluate the association between SARS-CoV-2 infection and all-cause mortality among recently diagnosed adults with cancer. METHODS: We conducted a retrospective cohort study of newly diagnosed adults with cancer between January 1, 2019, and December 31, 2020, using electronic health records linked to a statewide SARS-CoV-2 testing database. The primary outcome was all-cause mortality. We used the Kaplan-Meier estimator to estimate survival during the COVID-19 period (January 15, 2020, to December 31, 2020). We further modeled SARS-CoV-2 infection as a time-dependent exposure (immortal time bias) in a multivariable Cox proportional hazards model adjusting for clinical and demographic variables to estimate the hazard ratios (HRs) among newly diagnosed adults with cancer. Sensitivity analyses were conducted using the above methods among individuals with cancer-staging information. RESULTS: During the study period, 41,924 adults were identified with newly diagnosed cancer, of which 2894 (6.9%) tested positive for SARS-CoV-2. The population consisted of White (n=32,867, 78.4%), Black (n=2671, 6.4%), Hispanic (n=832, 2.0%), and other (n=5554, 13.2%) racial backgrounds, with both male (n=21,354, 50.9%) and female (n=20,570, 49.1%) individuals. In the COVID-19 period analysis, after adjusting for age, sex, race or ethnicity, comorbidities, cancer type, and region, the risk of death increased by 91% (adjusted HR 1.91; 95% CI 1.76-2.09) compared to the pre-COVID-19 period (January 1, 2019, to January 14, 2020) after adjusting for other covariates. In the adjusted time-dependent analysis, SARS-CoV-2 infection was associated with an increase in all-cause mortality (adjusted HR 6.91; 95% CI 6.06-7.89). Mortality increased 2.5 times among adults aged 65 years and older (adjusted HR 2.74; 95% CI 2.26-3.31) compared to adults 18-44 years old, among male (adjusted HR 1.23; 95% CI 1.14-1.32) compared to female individuals, and those with ≥2 chronic conditions (adjusted HR 2.12; 95% CI 1.94-2.31) compared to those with no comorbidities. Risk of mortality was 9% higher in the rural population (adjusted HR 1.09; 95% CI 1.01-1.18) compared to adult urban residents. CONCLUSIONS: The findings highlight increased risk of death is associated with SARS-CoV-2 infection among patients with a recent diagnosis of cancer. Elevated risk underscores the importance of adhering to social distancing, mask adherence, vaccination, and regular testing among the adult cancer population.

7.
Article in English | MEDLINE | ID: mdl-35886137

ABSTRACT

BACKGROUND: Cancer patients' experiences of the healthcare system, care, and treatment are increasingly viewed as important in order to inform and improve quality of care, patient safety, and treatment efficacy. Understanding patient experience is a key step in moving toward patient-centred care. The aims of this study were to determine the experience of cancer patients in Central and Eastern European countries and to identify the needs and perspectives of oncological patients during the cancer treatment. In this paper, results from Croatia are presented. METHODS: A sixty-nine item online survey was translated by native-language participating countries. Only registered members (subjects with confirmed cancer diagnosis) of the national patient oncology associations in each participating country were allowed to access and complete the online questionnaire (n = 16,458). Data were collected between October 2018 to February 2019. The Croatian Coalition of Health Associations enabled the authors of this paper to use the collected data from a sample of the Croatian participants (n = 2460) for the purposes of publication. RESULTS: Two-thirds (67.3%) of the respondents reported satisfaction with the length of time needed for getting tests done. Bad news was delivered sensitively to 52.97% of the participants, and 52.76% received a cancer treatment plan. During the hospitalisation, 45.93% responded that they did not find someone from the hospital staff whom they could talk to about their worries and fears, and 57.48% were not given any contact information in case of concerns about their condition or treatment following the discharge. Regarding the patients' preferences, needs, and values, 60.81% of the respondents felt that the greatest improvement would be to perform all services in one place, and 55.28% felt that improvement would be achieved through a multidisciplinary team coordinated by one person. CONCLUSIONS: The study reveals domains that need to be addressed in the overall Croatian healthcare system for oncology patients. Based on the obtained data, we can conclude that there is a large need for improvement in patient experience on the oncology pathway.


Subject(s)
Language , Neoplasms , Croatia , Humans , Neoplasms/therapy , Patient Outcome Assessment , Patient Satisfaction , Surveys and Questionnaires
8.
Psychooncology ; 31(3): 442-449, 2022 03.
Article in English | MEDLINE | ID: mdl-34549858

ABSTRACT

OBJECTIVES: Cancer information avoidance (CIA) serves as a barrier to preventive efforts. To learn how to combat this barrier, we aim to examine predictors of CIA in populations with and without cancer experience in the family, which are addressed differently in cancer prevention, according to specific informational barriers. METHODS: A subsample of people with and without cancer in the family (n = 2,757) of an online survey with a sample stratified for the German population by age, gender, education, and region was conducted via an online access panel. The survey instrument was adapted from the Health Information National Trends Survey. Separate stepwise regression analyses were conducted. RESULTS: Only a comparatively small proportion of the variance in CIA was explained by the predictors, ranging from R2  = .148 for people without cancer experience to R2  = .180 for participants with cancer experience in their family. Across the groups, the findings showed that people who were fatalistic about the risk of cancer, less health literate, who perceived less social pressure to be informed, and were less trusting in information sources more often avoided cancer information. CONCLUSIONS: Our findings identify relevant target groups to be addressed and barriers to be removed for cancer communication efforts. Adequate information provision can be supported by programs for fostering health literacy and social network diffusion strategies.


Subject(s)
Health Literacy , Neoplasms , Adaptation, Physiological , Humans , Information Avoidance , Surveys and Questionnaires
9.
Int J Qual Stud Health Well-being ; 16(1): 1971597, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34455941

ABSTRACT

Purpose: War metaphors are omnipresent in public and medical discourse on cancer . If some studies suggest that cancer patients may view their experiences as afight, few studies focus on the metaphors that patients create from their subjective experiences. The aim was to better understand the experience of four women with incurabale metastatic breast cancer from the metaphors they used in personal cancer blogs.Methods: An interpretive phenomenological analysis (IPA) was used to analyze these women's experience and metaphors of cancer.Results: Two metaphors carried the meaning of metastatic breast cancer experience: the fight and the unveiling. The results show that the war metaphor had a unique meaning for the bloggers who lived with incurable breast cancer: they revealed the difficulty of fighting cancer and eventually collapsing in battle, although a renewed look at life had developed in parallel to their struggle. The bloggers thus tried to lift the veil on this complex experience.Conclusion: The results highlight the need for women with metastatic breast cancer to be able to tell and share their experience in a supportive context and to reinvest the war metaphor in order to express themselves in a more authentic way.


Subject(s)
Breast Neoplasms , Metaphor , Blogging , Female , Humans
11.
Health Place ; 70: 102582, 2021 07.
Article in English | MEDLINE | ID: mdl-34000604

ABSTRACT

Liminality captures the passing stages in transitioning from one sociocultural status to another. As its spatial dimension remains under-examined, we analyse this in experiences of people affected by cancer. We review liminality in cancer-related literature and juxtapose this with empirical material. Analysing interview data (with eight patients) and participant-made photos highlights why places may be experienced differently throughout a period of illness and how places of diagnosis and care 'stretch' across locations. We conclude that exploring liminality's spatial dimension has implications for people 'living beyond' cancer, advances sociological understandings of (cancer) illness, and may inform healthcare facility design.


Subject(s)
Neoplasms , Humans , Neoplasms/therapy
12.
J Patient Exp ; 7(5): 645-647, 2020 Oct.
Article in English | MEDLINE | ID: mdl-33294592

ABSTRACT

The purpose of preparing this Feature Article was to explore and share my lived experience of living with multiple layers of chronic pain, with a diagnosis of advanced, aggressive and metastasized prostate cancer, and COVID-19. My exploration begins with the manifestations of chronic pain from a bicycling accident, psoriatic arthritis, with cancer treatments and the pain it creates during a panademic has added to the challenges of social distancing, isolation, and medical treatments. As with many patient experiences, we the person as patient outside of health care sometimes struggle to find the right words, the proper sentence structure and as Tamas writes about the expectation of others to provide, "Clean and reasonable scholarship about messy, unreasonable experiences is an exercise in alienation." I write this while living with extreme chronic pain, continue cancer treatments while the threat and additional anxiety of COVID-19 looms over me. This is my story.

13.
J Cancer Surviv ; 13(1): 148-159, 2019 02.
Article in English | MEDLINE | ID: mdl-30685822

ABSTRACT

PURPOSE: To identify the qualitative evidence on the experience of cancer and comorbid illness from the perspective of patients, carers and health care professionals to identify psycho-social support needs, experience of health care, and to highlight areas where more research is needed. METHODS: A qualitative systematic review following PRISMA guidance. Relevant research databases were searched using an exhaustive list of search terms. Two reviewers independently screened titles and abstracts and discussed variations. Included articles were subject to quality appraisal before data extraction of article characteristics and findings. Thomas and Harden's thematic synthesis of extracted findings was undertaken. RESULTS: Thirty-one articles were included in the review, covering a range of cancer types and comorbid conditions; with varying time since cancer diagnosis and apparent severity of disease for both cancer and other conditions. The majority of studies were published after 2010 and in high income countries. Few studies focused exclusively on the experience of living with comorbid conditions alongside cancer; such that evidence was limited. Key themes identified included the interaction between cancer and comorbid conditions, symptom experience, illness identities and ageing, self-management and the role of primary and secondary care. CONCLUSIONS: In addition to a better understanding of the complex experience of cancer and comorbidity, the review will combine with research prioritisation work with consumers to inform an interview study with the defined patient group. IMPLICATIONS FOR CANCER SURVIVORS: Expanding this evidence base will help to illuminate developing models of cancer patient-centred follow-up care for the large proportion of patients with comorbid conditions.


Subject(s)
Activities of Daily Living , Cancer Survivors , Neoplasms/epidemiology , Neoplasms/therapy , Social Support , Activities of Daily Living/psychology , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Caregivers/psychology , Caregivers/statistics & numerical data , Comorbidity , Delivery of Health Care/standards , Health Personnel , Health Services Needs and Demand/standards , Health Services Needs and Demand/statistics & numerical data , Humans , Needs Assessment/standards , Neoplasms/complications , Neoplasms/psychology , Patient-Centered Care/methods , Qualitative Research
14.
Scand J Public Health ; 47(5): 497-503, 2019 Jul.
Article in English | MEDLINE | ID: mdl-28673193

ABSTRACT

Aims: Negative cancer beliefs have been associated with late stage at cancer diagnosis. High levels of negative cancer beliefs have been found among individuals with low socioeconomic position and ethnic minority women, but the impact of cancer experience on cancer beliefs is unexamined. The aim of this study was to examine whether cancer beliefs are associated with cancer experience. Methods: This was a cross-sectional population-based study. Telephone interviews of 2992 Danish residents (30+) were carried out using the Awareness and Beliefs about Cancer Measure (ABC). Respondents reported whether they or someone close had been diagnosed with cancer and whether they agreed/disagreed with three positively and three negatively framed cancer beliefs. Results: Respondents with someone close diagnosed was reference group. Compared with these, respondents with no cancer experience (RRadj=0.91, 95% CI=0.84-0.98) or who had had cancer themselves (RRadj=0.87, 0.77-0.98) were less likely to believe that cancer treatment is worse than the cancer itself, and respondents with no cancer experience were less likely to believe that a diagnosis of cancer is a death sentence (RRadj=0.83, 0.70-0.98), but more likely to report that they did not want to know if they had cancer (RRadj=1.31, 1.01-1.71). Conclusions: The results suggest that cancer beliefs are sensitive to cancer experience. This is an important addition to previous results focusing on the association between cancer beliefs and static factors such as socioeconomic position and ethnicity. Since cancer beliefs may determine health-related behaviour, it is important that negative cancer beliefs are addressed and possibly reframed in population-based interventions.


Subject(s)
Cancer Survivors/psychology , Family/psychology , Health Knowledge, Attitudes, Practice , Neoplasms/psychology , Adult , Aged , Aged, 80 and over , Cancer Survivors/statistics & numerical data , Cross-Sectional Studies , Denmark/epidemiology , Female , Humans , Male , Middle Aged , Neoplasms/epidemiology
15.
J Womens Health (Larchmt) ; 27(11): 1335-1341, 2018 11.
Article in English | MEDLINE | ID: mdl-30095327

ABSTRACT

OBJECTIVE: Routine ovarian cancer screening is ineffective; therefore, no professional organization recommends this screening in asymptomatic patients. However, many physicians have recommended screening, exposing patients to unnecessary risk. Little research exists on how nonprofessional experience with cancer influences physicians' screening practices. This study examines the association between physicians' nonprofessional experience with cancer and reported adherence to ovarian cancer screening guidelines. MATERIALS AND METHODS: A mail questionnaire with an annual examination vignette and questions about cancer screening recommendations was sent to a random sample of 3,200 U.S. family physicians, general internists, and obstetrician-gynecologists. This analysis included 497 physicians who received a vignette of a woman at average ovarian cancer risk and weighted results to represent these physician groups nationally. The outcome measure was adherence to ovarian cancer screening guidelines. Stepwise multivariate logistic regression estimated adjusted risk ratios for guideline adherence. RESULTS: In unadjusted analyses, 86.0% of physicians without nonprofessional cancer experience reported adherence to ovarian cancer screening guidelines compared with 69.2% of physicians with their own history of cancer, or a family member or close friend/coworker with cancer (p = 0.0045). In adjusted analyses, physicians with cancer themselves or in a family member or close friend/coworker were 0.82 times less likely (CI: 0.73-0.92) to report adhering to ovarian cancer screening recommendations than those without nonprofessional cancer experience. CONCLUSIONS: Despite recommendations to the contrary, many physicians reported recommending ovarian cancer screening in low-risk women. Physicians with nonprofessional cancer experience were more likely to report offering or ordering nonrecommended screening than physicians without this experience.


Subject(s)
Early Detection of Cancer , Ovarian Neoplasms , Physicians, Primary Care , Attitude of Health Personnel , Clinical Competence , Cross-Sectional Studies , Early Detection of Cancer/adverse effects , Early Detection of Cancer/methods , Early Detection of Cancer/standards , Female , Guideline Adherence/statistics & numerical data , Humans , Male , Middle Aged , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/pathology , Physicians, Primary Care/standards , Physicians, Primary Care/statistics & numerical data , Practice Patterns, Physicians' , Surveys and Questionnaires , United States , Unnecessary Procedures
16.
J Geriatr Oncol ; 9(1): 47-52, 2018 01.
Article in English | MEDLINE | ID: mdl-28830737

ABSTRACT

PURPOSE: Little is known about the perspectives of older adults (OAs) with newly-diagnosed cancer on their experiences with cancer treatment decision-making. The objective of this study was to explore the factors that were important for accepting or refusing cancer treatment by older adults undergoing chemotherapy and/or radiation therapy. PATIENTS AND METHODS: A qualitative study using semi-structured interviews with 20 OAs aged ≥65years with newly diagnosed cancer (<6months) receiving either curative or palliative chemotherapy and/or radiation or who had declined therapy. The COREQ reporting guideline was utilized. RESULTS: The majority of patients accepted the recommended cancer treatment. Most OAs followed their oncologist's recommendation, but spoke of making their own decisions and felt confident about their decisions. Second opinions were not commonly sought. Themes emerged can be divided into two categories: 1) pertaining to cancer treatment decision-making, which includes: "Trust in oncologist", "prolong life", "expected outcomes of treatment", "other people's experience", skeptical about going online" and "assertion of independence", and 2) pertaining to oncologist-patient interactions, which includes "communication". CONCLUSION: Older patients largely followed their cancer specialists' treatment recommendations. Most patients were satisfied with their treatment decision and were confident in their decisions. Seeking of second opinions was rare. More needs to be done to address the communication gaps and support needs of this population.


Subject(s)
Decision Making , Neoplasms/psychology , Aged , Female , Humans , Interviews as Topic , Male , Medical Oncology/methods , Neoplasms/drug therapy , Neoplasms/radiotherapy , Physician-Patient Relations , Qualitative Research , Trust
17.
J Cancer Educ ; 32(2): 374-381, 2017 Jun.
Article in English | MEDLINE | ID: mdl-26621507

ABSTRACT

In the USA, cancer is the leading cause of death for Asian Americans and Pacific Islanders (AAPIs), but little is known about the unmet needs of AAPI cancer survivors, especially from a national perspective. Using a community-based participatory research approach, we partnered with the Asian and Pacific Islander National Cancer Survivors Network and the Asian American Cancer Support Network to design and conduct a cross-sectional survey to understand the unmet needs of a national sample of AAPI cancer survivors. We assessed unmet needs in 10 domains: day-to-day activities, financial expenses, emotional concerns, medical treatment, cancer information, home care, nutrition, physical concerns, family relationships, and spirituality. We also assessed self-reported measures related to quality of life. This national sample of AAPI cancer survivors included people from 14 states and two territories who had been diagnosed with a broad range of cancers, including cancer of the breast, ovary/uterus/cervix, prostate, blood, and other sites. Over 80 % reported at least one unmet need. Participants reported an average of 8.4 unmet needs, spanning an average of 3.9 domains. Most commonly reported were unmet needs pertaining to physical concerns (66 %), day-to-day activities (52 %), and emotional concerns (52 %). This is the first report of unmet needs in a national sample of AAPI cancer survivors with a range of different cancer types. It describes the areas of greatest need and points to the importance of devoting more resources to identifying and addressing unmet needs for the underserved population of AAPI cancer survivors.


Subject(s)
Asian/statistics & numerical data , Cancer Survivors/statistics & numerical data , Native Hawaiian or Other Pacific Islander/statistics & numerical data , Needs Assessment , Community-Based Participatory Research , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Quality of Life , Social Support
18.
Oncol Nurs Forum ; 43(6): E226-E232, 2016 11 01.
Article in English | MEDLINE | ID: mdl-27768142

ABSTRACT

PURPOSE/OBJECTIVES: To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. DESIGN: Descriptive comparative study.
. SETTING: Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. SAMPLE: A convenience sample of 34 family members of dying patients receiving palliative sedation. 
. METHODS: A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
. MAIN RESEARCH VARIABLES: Experiences of family members and time.
. FINDINGS: Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
. CONCLUSIONS: Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
. IMPLICATIONS FOR NURSING: Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a part of the core nursing curriculum. Nursing administrators in areas that use palliative sedation should enforce good nursing clinical practice as recommended by international practice guidelines, such as those of the European Association for Palliative Care.


Subject(s)
Attitude to Health , Deep Sedation/psychology , Family/psychology , Neoplasms/drug therapy , Pain/drug therapy , Palliative Care/psychology , Terminal Care/psychology , Adult , Aged , Aged, 80 and over , Female , Humans , Israel , Male , Middle Aged , Oncology Nursing/methods , Palliative Care/methods , Surveys and Questionnaires , Terminal Care/methods , Time Factors
19.
Support Care Cancer ; 24(3): 1373-86, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26341520

ABSTRACT

PURPOSE: Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. METHODS: Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. RESULTS: Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden. CONCLUSION: Multiple symptoms have a profound impact on patients' autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.


Subject(s)
Neoplasms/psychology , Palliative Care/psychology , Aged , Female , Humans , Male , Self Care
20.
Eur J Oncol Nurs ; 18(4): 355-61, 2014 Aug.
Article in English | MEDLINE | ID: mdl-24785793

ABSTRACT

AIM: The aim of this study was to further explore expressions of existential experiences by patients diagnosed with malignant melanoma (MM). METHOD: Semi-structured interviews were performed consecutively after diagnosis among 30 patients with MM. The methodological approach was inspired by Gadamer's hermeneutic philosophy. RESULTS: The analysis of expressions of existential experiences after having been diagnosed with malignant melanoma revealed that it is an existential process that people go through, beginning with feelings of suddenly becoming groundless at the time of the diagnosis, including being empty and in a vacuum, being in chaos and uncertainty and being confronted with one's own death. Next theme searching for solid ground included striving to understand what lies ahead, striving to find a balance in life - fighting, hoping, going on living and striving to prioritize family. The last theme creating islands of solid ground when living with cancer included understanding what is meaningful in life, living in the moment - seizing the day and keeping watch on the body. CONCLUSION: On being diagnosed with malignant melanoma, people go through a process where many questions emerge, including an existential turmoil, which health professionals should be aware of to provide these patients with sufficient support.


Subject(s)
Attitude to Death , Emotions , Existentialism , Melanoma/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Attitude to Health , Female , Humans , Male , Middle Aged , Social Support , Sweden , Young Adult
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