170 research outputs found
Experiences of patients undergoing chemotherapy - A qualitative study of adults attending Uganda Cancer Institute
Background: Cancer is a global public health challenge and how patients in countries with poor healthcare infrastructure experience cancer treatment is largely unknown.
Purpose: The objective of this study was to describe adult Ugandan cancer patientsâ experiences of undergoing chemotherapy treatment.
Methodology: Using a qualitative descriptive design, seven in-patients with varying cancer diagnoses at the Uganda Cancer Institute were interviewed about their experiences of undergoing chemotherapy treatment; the interviews were transcribed and analysed thematically.
Results: The analysis resulted in nine subthemes, which were categorized under three main themes: âexperiences related to the bodyâ, with the subthemes dry and sensitive skin, changes in eating and bowel habits, fever and feelings of abnormal body sensation; âthoughts and feelingsâ, with four subthemes reflecting the psychosocial impact of chemotherapy; and âactively dealing with discomfortâ, with three subthemes describing how patients dealt with side effects, such as by sticking to a diet.
Conclusion: Receiving chemotherapy treatment is difficult, and the side effects negatively influenced patientsâ bodies and moods. Dealing actively with discomfort and accepting negative impacts in hope of a cure helped the participants manage the acute complications related to the treatment. We recommend the development of interventions to ease discomfort due to chemotherapy
Recommended from our members
Long-term survivors of childhood cancer report quality of life and health status in parity with a comparison group
Background: There is a need for more knowledge about how survivors of childhood cancer perceive their lives and what influence current health status has on their quality of life. The purpose was to describe this among a group of long-term survivors and among a comparison group.
Procedure: Telephone interviews were performed with a cohort of 246 long-term survivors and 296 randomly selected from the general population using the Schedule for the Evaluation of Individual Quality of Life- Direct Weighting (SEIQoL-DW). The participants nominated the areas they considered to be most important in life and rated the current status of each area on a seven-point category scale. An overall individual index score was calculated as a measure of quality of life. Self-reported health status was assessed using the Short Form Health Survey (SF-36).
Results: Long-term survivors rated their overall quality of life and self-reported health status almost in parity with the comparison group. In both groups, family life, relations to other people, work and career, interests and leisure activities were the areas most frequently reported to influence quality of life. The survivors only differed from the comparison group on one of eight SF-36 scales reflecting problems with daily activities owing to physical health.
Conclusions: Health status was not shown to have a major impact on overall quality of life, indicating that health and quality of life should be evaluated distinctively as different constructs. This should be taken in consideration in clinical care of children with childhood cancer and long-term survivors
Recommended from our members
Adolescents' and young adults' experiences of childhood cancer: descriptions of daily life 5 years after diagnosis
Background: Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has only been studied to a limited extent, and an increased understanding of this young group is needed to improve follow-up care.
Objective: The aim was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents' and young adults' views of what it is like living with this experience.
Methods: Fifty-nine people 11-22 years old were interviewed a median of five years after diagnosis (response rate 66%). Data was collected through telephone interviews and analysed with qualitative content analysis.
Results: Three groups of informants were identified according to their descriptions of influence on daily life: âFeeling like anyone elseâ (the informants who described that the cancer experience had almost no influence on current life) (49%), âFeeling almost like othersâ(those who described some influence) (44%) and âFeeling differentâ (those describing a great influence on current life) (7%).
Conclusions: Most of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. Implications for Practice: Necessary follow-up care that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer
Recommended from our members
Psychometric properties of a short version of the HIV stigma scale, adapted for children with HIV infection
Background: HIV is a stigmatizing medical condition. The concept of HIV stigma is multifaceted, with personalized stigma (perceived stigmatizing consequences of others knowing of their HIV status), disclosure concerns, negative self-image, and concerns with public attitudes described as core aspects of stigma for individuals with HIV infection. There is limited research on HIV stigma in children. The aim of this study was to test a short version of the 40-item HIV Stigma Scale (HSS-40), adapted for 8â18 years old children with HIV infection living in Sweden.
Methods: A Swedish version of the HSS-40 was adapted for children by an expert panel and evaluated by think aloud interviews. A preliminary short version with twelve items covering the four dimensions of stigma in the HSS-40 was tested. The psychometric evaluation included inspection of missing values, principal component analysis (PCA), internal consistency, and correlations with measures of health-related quality of life (HRQoL).
Results: Fifty-eight children, representing 71% of all children with HIV infection in Sweden meeting the inclusion criteria, completed the 12-item questionnaire. Four items concerning participantsâ experiences of othersâ reactions to their HIV had unacceptable rates of missing values and were therefore excluded. The remaining items constituted an 8-item scale, the HIV Stigma Scale for Children (HSSC-8), measuring HIV-related disclosure concerns, negative self-image, and concerns with public attitudes. Evidence for internal validity was supported by a PCA, suggesting a three factor solution with all items loading on the same subscales as in the original HSS-40. The scale demonstrated acceptable internal consistency, with exception for the disclosure concerns subscale. Evidence for external validity was supported in correlational analyses with measures of HRQoL, where higher levels of stigma correlated with poorer HRQoL.
Conclusion: The results suggest feasibility, reliability, as well as internal and external validity of the HSSC-8, an HIV stigma scale for children with HIV infection, measuring disclosure concerns, negative self-image, and concerns with public attitudes. The present study shows that different aspects of HIV stigma can be assessed among children with HIV in the age group 8â18
Experiences of patients undergoing chemotherapy - a qualitative study of adults attending Uganda Cancer Institute
Background: Cancer is a global public health challenge and how patients
in countries with poor healthcare infrastructure experience cancer
treatment is largely unknown. Purpose: The objective of this study was
to describe adult Ugandan cancer patients\u2019 experiences of
undergoing chemotherapy treatment. Methodology: Using a qualitative
descriptive design, seven in-patients with varying cancer diagnoses at
the Uganda Cancer Institute were interviewed about their experiences of
undergoing chemotherapy treatment; the interviews were transcribed and
analysed thematically. Results: The analysis resulted in nine
subthemes, which were categorized under three main themes:
\u2018experiences related to the body\u2019, with the subthemes dry
and sensitive skin, changes in eating and bowel habits, fever and
feelings of abnormal body sensation; \u2018thoughts and
feelings\u2019, with four subthemes reflecting the psychosocial impact
of chemotherapy; and \u2018actively dealing with discomfort\u2019,
with three subthemes describing how patients dealt with side effects,
such as by sticking to a diet. Conclusion: Receiving chemotherapy
treatment is difficult, and the side effects negatively influenced
patients\u2019 bodies and moods. Dealing actively with discomfort and
accepting negative impacts in hope of a cure helped the participants
manage the acute complications related to the treatment. We recommend
the development of interventions to ease discomfort due to
chemotherapy
Recommended from our members
Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts
PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds.
METHODS: Secondary data from cohorts, collected in South India (nâ=â250), Sweden (nâ=â193), and the US (nâ=â603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated.
RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort.
CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort
Recommended from our members
Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts
PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (nâ=â250), Sweden (nâ=â193), and the US (nâ=â603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort
Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study
ObjectiveThis cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes.MethodsParticipants (nĂą =Ăą 465, ages 15Ăą 39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2Ă years postĂą cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2Ă years postĂą diagnosis.ResultsFortyĂą nine percent of AYAs reported negative effects on sexual function at 1Ă year postĂą cancer diagnosis and 70% of those persisted in their negative perceptions 2Ă years after diagnosis. Those reporting a negative impact at 2Ă years were more likely to be 25Ă years or older (OR, 2.53; 95% CI, 1.44Ăą 4.42), currently not raising children (OR, 1.81; 95% CI, 1.06Ăą 3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975Ăą 0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97Ăą 4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function.ConclusionsMany AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2Ă years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright Ă© 2016 John Wiley & Sons, Ltd.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/138867/1/pon4181_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/138867/2/pon4181.pd
Individual quality of life: adaptive conjoint analysis as an alternative for direct weighting?
In the schedule for the evaluation of individual quality of life (SEIQoL) the weights for five individualized quality of life domains have been derived by judgment analysis and direct weighting (DW). We studied the feasibility and validity of adaptive conjoint analysis (ACA) as an alternative method to derive weights in 27 cancer patients and 20 patients with rheumatoid arthritis. Further, we assessed the convergence between direct weights and weights derived by ACA, and their correlation with global quality-of-life scores. All respondents finished the ACA task, but one in five respondents were upset about the ACA task. Further, the task was vulnerable to judgment âerrorsâ, such as inconsistent answers. The agreement between the two weights was low. Both weighted index scores were strongly correlated to the unweighted index score. The relationships between the index score and scores on a visual analogue scale for global individual quality of life and global quality of life were similar whether or not the index score was calculated with DW weights, with ACA weights, or without using weights. We conclude that, because weights did not improve the correlation between the index score and global quality of life scores, it seems sufficient to use the unweighted index score as a measure for global individual quality of life
Recommended from our members
Sexual dysfunction and fertility-related distress in young adults with cancer over 5âyears following diagnosis: study protocol of the Fex-Can Cohort study
BACKGROUND: There is a lack of firm knowledge regarding sexual problems and fertility-related distress in young adults following a diagnosis with cancer. Establishing such understanding is essential to identify patients in need of specific support and to develop cancer care accordingly. This study protocol describes the Fex-Can Cohort study, a population-based prospective cohort study investigating sexual dysfunction and fertility-related distress in young adults diagnosed with cancer in Sweden. The primary objective of the study is to determine the prevalence and predictors of sexual dysfunction and fertility-related distress following a cancer diagnosis in young adulthood compared to prevalence rates for the general population. Further aims are to investigate the trajectories of these issues over time, the co-existence between sexual dysfunction and fertility-related distress, and the relation between these issues and body image, anxiety and depression, health-related quality of life, self-efficacy related to sexuality and fertility, and fertility-related knowledge. METHODS: Participants in the Fex-Can Cohort will be identified via the Swedish National Quality Registries for Brain Tumors, Breast Cancer, Gynecological Oncology, Lymphoma, and Testicular Cancer. All patients diagnosed at the ages of 18-39, during a period of 18âmonths, will be invited to participate. Established instruments will be used to measure sexual function (PROMIS SexFS), fertility-related distress (RCAC), body image (BIS), anxiety and depression (HADS), and health-related quality of life (QLQ-C30); Self-efficacy and fertility-related knowledge will be assessed by study-specific measures. The survey will be administered to participants at baseline (approximately 1.5âyear after diagnosis) and at 3 and 5âyears post-diagnosis. Registry data will be used to collect clinical variables. A comparison group of 2000 young adults will be drawn from the Swedish population register (SPAR) and subsequently approached with the same measures as the cancer group. DISCUSSION: The study will determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young men and women with cancer. The findings will form a basis for developing interventions to alleviate sexual problems and fertility-related distress in young adults with cancer in the short and long term. TRIAL REGISTRATION: This is an observational cohort study and clinical trial registration was therefore not obtained
- âŠ