Experiences of partners of prostate cancer survivors: A qualitative study

Prostate cancer, Australia's leading cancer, has treatment side effects that reduce the quality of life for both survivors and partners. Limited partner research exists. This study aimed to address this gap in the literature by gathering data directly from partners to obtain a deeper understanding of their experiences of prostate cancer survivorship that helps inform healthcare service providers. A qualitative approach was taken to explore participant views (N = 16) through three focus groups and two in-depth interviews. Five themes emerged relating to caregiver burden, knowledge deficit, isolation, changes of sexual relations, and unmet needs. Possible implications for practice may include the need for specific partner-related information and interventions to assist couples to cope with the emotional distress caused by treatment side effects.     

Threatened fertility: A longitudinal study exploring experiences of fertility and having children after cancer treatment

Infertility is a recognised potential sequel of cancer treatment which impacts negatively on the quality of survival. The aim of this study was to explore how men and women experience the threat of infertility by cancer treatment and individuals’ thoughts about having children after cancer during the first 2 years following diagnosis. Nine women and seven men (aged 24–41) participated in two interviews in this longitudinal interview study, after the initiation of cancer treatment and 2 years thereafter. The interviews focused on participants’ thoughts and feelings about threatened fertility and having children. The interviews were analysed with qualitative content analysis with a particular focus on identifying experiences over time. The Traits–Desires–Intentions model was used to reflect upon the study findings. The analysis resulted in the identification of four themes: Continue calmly on chosen path, Abandoning plans for children, Avoiding the subject of fertility and Struggling towards life goals. The results emphasise the need to offer individualised fertility‐related treatment communication and counselling, both at the time of cancer diagnosis and also in connection with follow‐up care. Appropriate fertility‐related communication should be included in young cancer patients’ survivor care plans.     

Breast cancer patients’ narrative experiences about communication during the oncology care process: a qualitative study

To analyse the perception about the information and communication received to evaluate oncologic care of breast cancer patients in Spain. Qualitative study based on conducting in‐depth interviews. An inductive thematic analysis of the illness narratives was performed. Intentional theoretical sampling of 41 people diagnosed with breast cancer. The information provided during care process is assessed as appropriate, as it includes personalised skills focused on communication and considers organisational and contextual issues. In some cases, the information was considered partial, heterogeneous and at times contradictory, which revealed a lack of continuity. To provide and adequately cover information needs from the patient perspective, it is necessary to ensure access, both in its physical (material) and intellectual (comprehension) dimension, keeping in mind elements of social capital (social networks) and cultural capital (values, beliefs, non‐verbal language) that facilitate or hinder access. The current state of transition to a horizontal model in the doctor–patient relationship, could account for the difficulties, deficits and contradictions in communication and information that breast cancer patients perceive in many contexts.     

Fear of cancer recurrence in lymphoma survivors: A descriptive study

Abstract

Objectives: Fear of cancer recurrence (FCR) is a common experience among cancer survivors and often persists after the termination of cancer treatments. The purpose of this paper was to evaluate FCR in survivors of Hodgkin’s and diffuse large B-cell lymphomas, given a high rate of survivorship in this patient population.

Research Approach: The parent study was a multi-site, cluster-randomized trial to assess a communication skills intervention: survivorship planning consultation (versus a time-attention control - wellness rehabilitation intervention) to promote transition to survivorship.

Participants & Methodological Approach: 199 patients enrolled in the study and completed a survivorship (or control) consultation one-month after receiving the news of their survivorship status; 141 of those patients (n?=?92 experimental arm, n?=?49 control arm) completed an interview at their 6-month follow-up consultation. In the interview, participants described frequency of FCR, causes of FCR, coping mechanisms, and specific things oncologists said to reduce FCR. Both qualitative and quantitative methods were utilized for analyzing participant responses.

Findings: The majority (88%) of participants reported experiencing FCR, with a higher number of participants in the experimental arm significantly more likely to endorse FCR compared to the control group participants. The main causes of FCR were having medical appointments and concerns about potential relapse and secondary cancers. Participants endorsed utilizing self-sufficient coping mechanisms. As well, participants reported that oncologists most frequently cited specific cure rates of lymphoma to reduce patients’ FCR.

Interpretation & Implications for Psychosocial Providers: Communication skills training programs should emphasize FCR in survivorship consultations.     

Impact of physical appearance changes reported by adolescent and young adult cancer survivors: A qualitative analysis

Poor body image may be one driver of distress for adolescent and young adults (AYAs) after cancer. We explored physical appearance changes reported by AYA cancer survivors to understand impacts on body image, distress, lifestyle and health behaviours. We recruited AYAs (15–25 years) who had completed cancer treatment. Using semi‐structured interviews, we asked participants about appearance changes resulting from their cancer. We used iterative thematic analyses to explain experiences. Forty‐three participants (51% male, mean age = 21 years) completed an interview. Two key themes emerged. Participants discussed physical appearance changes and psychosocial impacts including appraisal of their changed appearance. Thirty‐eight participants (n = 38/43) reported that their cancer and/or treatment changed their appearance (most commonly: alopecia [n = 15/43], scarring [n = 14/43] and weight gain [n = 11/43]). Ten participants (n = 10/43) acknowledged body dissatisfaction. Other impacts included feeling a loss of identity, not being recognised by peers and feeling helpless to change. Our results have translational significance for AYA care. Body image concerns should be considered a potential barrier to successful reintegration post‐treatment. AYAs may benefit from familial and peer support, healthy lifestyle interventions and clinical environments catering to appearance‐related sensitivities.     

A qualitative study of work and work return in cancer survivors

Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.     

Impact of insurance type on survivor-focused and general preventive health care utilization in adult survivors of childhood cancer: the Childhood Cancer Survivor Study (CCSS)

BACKGROUND:

Lack of health insurance is a key barrier to accessing care for chronic conditions and cancer screening. The influence of insurance type (private, public, none) on survivor‐focused and general preventive health care in adult survivors of childhood cancer was examined.

METHODS:

The Childhood Cancer Survivor Study is a retrospective cohort study of childhood cancer survivors diagnosed between 1970 and 1986. Among 8425 adult survivors, the relative risk (RR) and 95% confidence interval (CI) of receiving survivor‐focused and general preventive health care were estimated for uninsured (n = 1390) and publicly insured (n = 640), compared with for the privately insured (n = 6395)

RESULTS:

Uninsured survivors were less likely than those privately insured to report a cancer‐related visit (adjusted RR, 0.83; 95% CI, 0.75‐0.91) or a cancer center visit (adjusted RR, 0.83; 95% CI, 0.71‐0.98). Uninsured survivors had lower levels of utilization in all measures of care in comparison with privately insured. In contrast, publicly insured survivors were more likely to report a cancer‐related visit (adjusted RR, 1.22; 95% CI, 1.11‐1.35) or a cancer center visit (adjusted RR, 1.41; 95% CI, 1.18‐1.70) than were privately insured survivors. Although publicly insured survivors had similar utilization of general health examinations, they were less likely to report a Papanicolaou test or a dental examinations

CONCLUSIONS:

Among this large, socioeconomically diverse cohort, publicly insured survivors utilize survivor‐focused health care at rates at least as high as survivors with private insurance. Uninsured survivors have lower utilization of both survivor‐focused and general preventive health care. Cancer 2011. © 2010 American Cancer Society.     

Qualitative evaluation of care plans for Canadian breast and head-and-neck cancer survivors

Background

Survivorship care plans (scps) have been recommended as a way to ease the transition from active cancer treatment to follow-up care, to reduce uncertainty for survivors in the management of their ongoing health, and to improve continuity of care. The objective of the demonstration project reported here was to assess the value of scps for cancer survivors in western Canada.

Methods

The Alberta CancerBridges team developed, implemented, and evaluated scps for 36 breast and 21 head-and-neck cancer survivors. For the evaluation, we interviewed 12 of the survivors, 9 nurses who delivered the scps, and 3 family physicians who received the scps (n = 24 in total). We asked about satisfaction, usefulness, emotional impact, and communication value. We collected written feedback from the three groups about positive aspects of the scps and possible improvements (n = 85). We analyzed the combined data using qualitative thematic analysis.

Results

Survivors, nurses, and family physicians agreed that scps could ease the transition to survivorship partly by enhancing communication between survivors and care providers. Survivors appreciated the individualized attention and the comprehensiveness of the plans. They described positive emotional impacts, but wanted a way to ensure that their physicians received the scps. Nurses and physicians responded positively, but expressed concern about the time required to implement the plans. Suggestions for streamlining the process included providing survivors with scp templates in advance, auto-populating the templates for the nurses, and creating summary pages for physicians.

Conclusions

The results suggest ways in which scps could help to improve the transition to cancer survivorship and provide starting points for larger feasibility studies.     

Hospital-based home care for children with cancer: a qualitative exploration of family members' experiences in Denmark

The study aims to describe the experiences of a hospital-based home care programme in the families of children with cancer. Fourteen parents, representing 10 families, were interviewed about their experiences of a hospital-based home care programme during a 4-month period in 2009 at a university hospital in Denmark. Five children participated in all or part of the interview. The interviews were transcribed verbatim and analysed using qualitative content analysis. The findings indicate that hospital-based home care enabled the families to remain intact throughout the course of treatment, as it decreased the strain on the family and the ill child, maintained normality and an ordinary everyday life and fulfilled the need for safety and security. According to family members of children with cancer, hospital-based home care support enhanced their quality of life during the child's cancer trajectory. Our study highlights the importance of providing hospital-based home care with consideration for the family members' need for the sense of security achieved by home care by experienced paediatric oncology nurses and regular contact with the doctor. In future studies, interviews with children and siblings could be an important source of information for planning and delivering care suited to the families' perceived needs.