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1
Wenger, Lisa M., John L. Oliffe, and Joan L. Bottorff. "Psychosocial Oncology Supports for Men." American Journal of Men's Health 10, no. 1 (November 11, 2014): 39–58. http://dx.doi.org/10.1177/1557988314555361.
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Although men’s cancer experiences have received limited attention within the field of psychosocial oncology, increasing attention is being devoted to the development and evaluation of men-centered programs. This scoping review describes this emergent body of literature, detailing the focus, participation, and impact of interventions designed to help men with cancer build illness-specific knowledge, adapt to illness, manage side effects, distress, and uncertainty, sustain relationships, and more. Striving to build on existing knowledge, research gaps and opportunities are discussed, including a need for stronger methodologies, more tailored and targeted supports, attention to the experiences of men with nonprostate cancers, and the explicit integration of gender analyses in the research process.
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Feraco, Angela Marie, Sarah R. McCarthy, P. Jeet Das, Anna Revette, James A. Tulsky, and Joanne Wolfe. "Pediatric cancer care professionals’ experiences with an interprofessional communication intervention." Journal of Clinical Oncology 36, no. 34_suppl (December 1, 2018): 53. http://dx.doi.org/10.1200/jco.2018.36.34_suppl.53.
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53 Background: The National Academy of Medicine recommends interprofessional collaboration to promote optimal patient- and family-centered care. We sought to understand whether medical and psychosocial professionals who participated in an interprofessional communication intervention perceived it as distinct from usual clinical care. Methods: Our intervention targeted “medical” (physicians, nurse practitioners) and “psychosocial” (social workers, psychologists) professionals. It consisted of an interprofessional family conference, using a structured conversation guide, conducted during the first 6 months of a child’s cancer care. Conferences aimed to enable families to share hopes and worries and ask questions about their child’s care. Clinicians received a 60-minute training focused on communication skills, such as eliciting families’ hopes and worries, and suggested approaches to collaborating during conferences. Clinicians participated in debriefing interviews after each conference (range 1-3). Three of us conducted thematic analysis of interview data. Results: Twenty-two professionals (6 attending MDs, 4 fellow MDs, 8 NPs, and 8 psychosocial clinicians) gave 34 interviews. Medical and psychosocial professionals described interprofessional family conferences as distinct from usual practice patterns, largely due to their interprofessional colleagues’ presence. This co-presence contributed to “being on the same page.” Conferences sometimes bred a new understanding of a family’s needs and consequent care changes. However, both medical and psychosocial professionals noted that psychosocial professionals often were not vocal contributors to the conference. Some psychosocial clinicians reported being unsure of “the rules.” Conclusions: An interprofessional communication intervention promoted shared understanding between interprofessional colleagues. However, medical professionals were described as more vocal, perhaps due to insufficient role clarity or medical dominance.
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Fernandez, A. S. "Exploring the Post-Treatment Experiences of Childhood Cancer Survivors." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 119s. http://dx.doi.org/10.1200/jgo.18.44700.
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Background: One of the great successes in medicine is the treatment of childhood cancer. Due to the overall increase in the survival rate of individuals with cancer, the disease is now considered a chronic condition (Meeske, Patel, Palmer, Nelson, & Parow, 2007) rather than a terminal illness, drawing tremendous amount of attention toward examining the subjective well-being among cancer patients and survivors. In the Philippines, there is a growing number of childhood cancer survivors, however, they face posttreatment challenges that are given less attention in research in the country. Aim: The study sought to understand the experiences of Filipino childhood cancer survivors, focusing on the challenges, triumphs, and experiences related to postcancer treatment. An awareness and a better understanding of these will likely help psychosocial oncology professionals improve survivors´ level of functioning and quality of life in the posttreatment period. Methods: Using a qualitative design, six focus group discussions were conducted with 21 survivors of childhood cancer. Two of the FGDs were with survivors ages 13-18 years old and four FGDs were with 19-25 years old. The discussions were recorded and then transcribed for data storage, management, and analysis. Results: The results consisted of information grouped into two broad categories as positive and negative experiences. Survivors of childhood cancer reported positive experiences during the post-treatment period. They experienced improvement in their physical condition (healthy lifestyle, better health), in psychosocial wellness (gratefulness, determination), and in sustained religious engagement (prayerfulness, involvement in religious activities). On the other hand, the survivors also reported negative posttreatment experiences. Their negative experiences were thematically clustered according to the broad areas of cognitive (inefficient memory retrieval), physical (limitations on physical activities, pain, body issues), and socio-emotional (worry about cancer in the family, fear of relapse, fear of rejection, irritability) aspects. Conclusion: The experiences of the survivors in the posttreatment have both positive and negative dimensions. However, the reported negative experiences seem to weigh heavily on the survivors, with numerous cognitive, physical and socio-emotional concerns. There is an increasing urgency to understand the posttreatment psychological needs of the growing population of childhood cancer survivors, and develop follow-up psychosocial interventions for them. These psychosocial interventions can equip survivors with strategies to effectively manage and overcome their chronic worries, instill confidence and a sense of security and be able to plan for their future more positively.
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Ang, Sin Hui, Serena Siew Lin Koh, Xiu Hua @. Hideka Tamamura Lee, and Shefaly Shorey. "Experiences of adolescents living with cancer: A descriptive qualitative study." Journal of Child Health Care 22, no. 4 (March 15, 2018): 532–44. http://dx.doi.org/10.1177/1367493518763109.
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This study aimed to explore the experiences of adolescents from Singapore, aged 10–18 years old, living with cancer and their perceptions on how their psychosocial outcomes can be improved. A descriptive qualitative study design was used. Convenience sampling was used to recruit 10 participants from a pediatric oncology ward in a Singapore hospital. Individual semi-structured interviews were conducted. Thematic analysis was used to analyze the data. Five major themes emerged: (1) experience of physical symptoms, (2) emotional response to their condition, (3) changes in social dynamics, and (4) falling behind in academics. The psychosocial outcomes of Singaporean adolescents with cancer could be improved by thorough pain assessments and creating a more conducive hospital environment.
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Duggleby, Wendy, Dan Cooper, Cheryl Nekolaichuk, Laura Cottrell, Jenny Swindle, and Kelsi Barkway. "The psychosocial experiences of older palliative patients while participating in a Living with Hope Program." Palliative and Supportive Care 14, no. 6 (April 8, 2016): 672–79. http://dx.doi.org/10.1017/s1478951516000183.
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AbstractObjective:Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing levels of hope in palliative care patients. The experience of palliative patients while participating in these interventions is unknown. Understanding these experiences would provide a rich understanding of how the interventions work to foster hope. The purpose of the present study was to describe the psychosocial processes that participants with advanced cancer receiving palliative care experienced when taking part in a Living with Hope Program (LWHP).Method:In the context of a study evaluating the LWHP, data were collected from 13 dyads (persons with advanced cancer and their caregivers) at two timepoints (one week apart). A thematic qualitative analysis of 52 open-ended audiotaped interviews was conducted that focused on the psychosocial processes that occurred during the LWHP.Results:The average age of palliative participants was 67 (SD = 6.6) and of their family caregivers 61 years of age (SD = 13.9). A thematic analysis suggested that the participants experienced the following psychosocial processes while participating in the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivational processes. These processes are the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and improving quality of life. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction, which is an outcome of motivational processes.Significance of the results:The findings from our study underscore the importance of uncovering the psychosocial processes through which the LWHP works to foster hope. They will assist in making revisions to the intervention that will increase its effectiveness, as well as providing a better understanding of hope in persons with advanced cancer.
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Nedjat-Haiem, Frances R., Iraida V. Carrion, Karl A. Lorenz, Kathleen Ell, and Lawrence Palinkas. "Psychosocial Concerns among Latinas with Life-Limiting Advanced Cancers." OMEGA - Journal of Death and Dying 67, no. 1-2 (August 2013): 167–74. http://dx.doi.org/10.2190/om.67.1-2.t.
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Research has demonstrated that limited dialogue in end-of-life (EOL) care can negatively impact decision-making and place of death. Furthermore, when vulnerable populations are faced with EOL cancer care, they experience issues resulting from previous gaps in services attributed to sociocultural and economic issues that influence EOL care. These conditions place an additional burden on disadvantaged populations which can cause distress, especially as disparate conditions continue to persist. Little is known about Latinos' psychosocial concerns that lead to distress in EOL care. The objective of this study is to explore Latinas' experiences with life-limiting cancer conditions to identify the EOL care concerns that impact their dying experience. This study used a phenomenological approach to explore the EOL care concerns of 24 Latinas receiving treatment for metastatic cancers in a public sector healthcare system in Los Angeles, California. In-depth interviews were recorded and transcribed, and qualitative analysis was performed using Atlas.ti software.
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Boles, Jessika, and Sarah Daniels. "Researching the Experiences of Children with Cancer: Considerations for Practice." Children 6, no. 8 (August 16, 2019): 93. http://dx.doi.org/10.3390/children6080093.
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Children and adolescents with cancer often participate in medical and psychosocial research throughout their diagnosis and treatment. Furthermore, this involvement frequently extends into the survivorship period. Sometimes referred to as “doubly vulnerable” research participants, children and adolescents with cancer are not only minors, but also minors facing significant medical, developmental, and psychosocial stressors associated with chronic illness. Thus, it is important to exercise care in designing and conducting research with this population; however, these considerations have not been adequately addressed in pediatric healthcare literature. Therefore, the purpose of this review is to describe the research preferences and experiences of children and adolescents with cancer to identify techniques for supporting this population as research participants. By incorporating developmentally appropriate, context-specific, and child-centered adjustments, researchers can help children and adolescents with cancer effectively and meaningfully describe their illness experiences while also developing a positive outlook on future research participation.
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Wenger, Lisa M., and John L. Oliffe. "Moving Beyond the Prostate." American Journal of Men's Health 7, no. 2 (October 17, 2012): 138–41. http://dx.doi.org/10.1177/1557988312463420.
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As researchers recognize the value in considering gender dynamics within the cancer experience, a majority of the masculinities work has centered on men with prostate cancer. This focus has positioned prostate cancer as the flagship of men’s cancer (and perhaps men’s health). There is value in this research. However, as 78% of men experience cancers of a different type, a narrow focus on prostate cancer does not necessarily account for broader intersections of cancer and masculinity. Argued here are the benefits to expanding the focus of research on men’s cancer experiences. As researchers consider patterns and diversities among men managing an array of cancers, there is opportunity to broaden understanding of the challenges “cancer” can present for men, disrupt assumptions that the study of men’s gendered experience of cancer must be tethered to male sex–specific biology, and enhance the relevance and impact of psychosocial interventions for men living with cancer.
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Bomar, Kaitlin, Elizabeth Willingham, Terra Dillard, Chad M. Dingman, Crystal Humphries, Stacey Kindall, Patricia D. Hegedus, James D. Bearden, and Hal E. Crosswell. "Bridging the gap in psychosocial care in cancer survivorship: A pilot project evaluating psychosocial interventions through telemedicine." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 215. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.215.
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215 Background: Psychosocial distress is a well‐recognized consequence of cancer therapy, but psychosocial care for cancer survivors remains fragmented. Through the use of telemedicine, establishing an integrated, information technology‐based infrastructure between community‐based cancer programs may enhance coordination of survivorship care and increase psychosocial distress screening and intervention. We describe a one year pilot program intended to bridge institutional and geographic gaps in psychosocial intervention for cancer survivors through the use of telemedicine. Methods: There are 17 Commission on Cancer-accredited sites in South Carolina-only 31% of sites routinely conduct distress screening. This SC Cancer Alliance-supported pilot was designed as a quality care improvement project between two community-based cancer programs. The development and execution of the telemedicine project will be described. A survey-based, qualitative assessment of patient satisfaction with psychosocial intervention with between both physical and virtual counselling was performed and scored. Results: All patients seen in survivorship clinics at both institutions received psychosocial distress screening. By the end of the pilot project, 9 cancer survivors from the Spartanburg area were identified as having significant psychosocial distress, participated in counselling and reported on their experiences. Patients were seen either via face-to-face and/or virtual encounters. Counselling sessions performed via telemedicine were well accepted and that there was no difference in patient satisfaction as compared to face-to-face sessions. Anecdotal experiences and comments will be highlighted. Conclusions: Our pilot project demonstrates that psychosocial screening and intervention via telemedicine is feasible and may be effective at reducing psychosocial distress in cancer survivors. Psychosocial intervention via telemedicine may serve as a viable method of providing counselling services to resource poor areas, but significant barriers exist, including reimbursement, institutional variations in screening and care and information technology.
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Bonsu, Adwoa Bemah, Lydia Aziato, and Joe Nat A. Clegg-Lamptey. "Living with Advanced Breast Cancer among Ghanaian Women: Emotional and Psychosocial Experiences." International Journal of Palliative Care 2014 (June 25, 2014): 1–9. http://dx.doi.org/10.1155/2014/403473.
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The purpose of this study was to explore the emotional and psychosocial experiences of Ghanaian women living with advanced breast cancer in the Kumasi metropolis. The study employed a qualitative exploratory descriptive design. Purposive sampling approach was used and data was saturated with 10 participants aged between 32 and 65 years. All interviews were audio-taped and transcribed. Data was analyzed concurrently based on the techniques of content analysis. Anonymity and confidentiality were ensured. Women experienced emotional reactions such as sadness, fear, and anxiety. Pain was severe and led to suicidal ideations. Women experienced lost hopes regarding their marriage, parenting, and work. They received support from their families, spouses, colleagues, health professionals, and spiritual leaders. Women coped by accepting the disease and surrendering to God and having the will to live. Five major themes described were emotional reactions, pain, lost hope, support, and coping. It was recommended that health care providers involved in breast cancer management should be trained to enhance effective and holistic care of women and their families. Also, patients with advanced disease should be given effective pain management and a multidisciplinary palliative care team should be instituted to care for the women.
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Rose, Shiho, Christine Paul, Allison Boyes, Brian Kelly, and Della Roach. "Stigma-related experiences in non-communicable respiratory diseases: A systematic review." Chronic Respiratory Disease 14, no. 3 (January 23, 2017): 199–216. http://dx.doi.org/10.1177/1479972316680847.
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The stigma of non-communicable respiratory diseases (NCRDs), whether perceived or otherwise, can be an important element of a patient’s experience of his/her illness and a contributing factor to poor psychosocial, treatment and clinical outcomes. This systematic review examines the evidence regarding the associations between stigma-related experiences and patient outcomes, comparing findings across a range of common NCRDs. Electronic databases and manual searches were conducted to identify original quantitative research published to December 2015. Articles focussing on adult patient samples diagnosed with asthma, chronic obstructive pulmonary disease (COPD), cystic fibrosis, lung cancer or mesothelioma, and included a measurement of stigma-related experience (i.e. perceived stigma, shame, blame or guilt), were eligible for inclusion. Included articles were described for study characteristics, outcome scores, correlates between stigma-related experiences and patient outcomes and methodological rigor. Twenty-five articles were eligible for this review, with most ( n = 20) related to lung cancer. No articles for cystic fibrosis were identified. Twenty unique scales were used, with low to moderate stigma-related experiences reported overall. The stigma-related experiences significantly correlated with all six patient-related domains explored (psychosocial, quality of life, behavioral, physical, treatment and work), which were investigated more widely in COPD and lung cancer samples. No studies adequately met all criteria for methodological rigor. The inter-connectedness of stigma-related experiences to other aspects of patient experiences highlight that an integrated approach is needed to address this important issue. Future studies should adopt more rigorous methodology, including streamlining measures, to provide robust evidence.
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Bessell, Ann G. "Children Surviving Cancer: Psychosocial Adjustment, Quality of Life, and School Experiences." Exceptional Children 67, no. 3 (July 2001): 345–59. http://dx.doi.org/10.1177/001440290106700304.
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Tan, Beron Wei Zhong, Alexis Clarke, Lois Ling’en Teo, Jasper Weng Kong Tong, and Mei-Yoke Chan. "The parental experiences of caring for children with childhood cancers in Singapore: a pilot focus group study." Proceedings of Singapore Healthcare 29, no. 3 (June 24, 2020): 183–89. http://dx.doi.org/10.1177/2010105820935915.
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Background: Research on the parental experiences of caring for children diagnosed with cancer in Singapore are limited and not well understood. Objectives: We conducted a pilot focus group to understand the experiences of Singaporean parents whose child had survived cancer. Methods: Using convenience sampling, five parents were invited to participate in a focus group discussion regarding the psychosocial needs at the time of cancer diagnosis and into survivorship. The discussion was transcribed verbatim and analysed using Braun and Clarke’s 6-step approach to thematic analysis. Results: The analysis revealed three major themes of intrapersonal impact, interpersonal connectedness and financial implications. Conclusions: The identified themes indicated some universal and unique caregiving experiences among Singaporean parents and those reported in western and other Asian cultures. In particular, the findings provided an update on the parental experiences of caring for children with cancer in Singapore and highlighted the need for ongoing research and the development of early and holistic psychosocial support services for these parents.
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Sibulwa, Sharleen, Tamara Chansa-Kabali, and Given Hapunda. "“Every part of me has changed”—shared lived experiences of adolescents living with cancer in Zambia." Health Psychology Open 6, no. 1 (January 2019): 205510291983353. http://dx.doi.org/10.1177/2055102919833537.
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This study explored experiences of adolescents living with cancer, focusing on physical and psychosocial problems. Semi-structured interviews were carried out on 18 adolescents aged between 12 and 18 years. Transcripts were analyzed using thematic analysis. Results showed that the adolescents faced a lot of physical, psychological, and social problems due to cancer diagnosis, treatment, and care. In order to improve their well-being and quality of life, psychosocial interventions should be incorporated in biomedical interventions that adolescents with cancer receive. This study proposes cost-effective interventions that can be implemented in resource-restricted sub-Saharan countries like Zambia.
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Midorikawa, Sanae, Koichi Tanigawa, Satoru Suzuki, and Akira Ohtsuru. "Psychosocial Issues Related to Thyroid Examination After a Radiation Disaster." Asia Pacific Journal of Public Health 29, no. 2_suppl (March 2017): 63S—73S. http://dx.doi.org/10.1177/1010539516686164.
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A thyroid ultrasound examination program has been conducted in the aftermath of the Fukushima Daiichi Nuclear Power Plant accident to address concerns about the increased risk of thyroid cancer similar to those experienced by local residents after the 1986 Chernobyl accident. This is the second-largest thyroid cancer screening in younger age ever, following only that conducted after Chernobyl. As the natural history of thyroid cancer in younger populations is not well characterized, large-scale screening using thyroid ultrasound could result in overdiagnosis, even with careful planning, as has been experienced in South Korea. Awareness regarding the thyroid gland is generally low among residents, who tend to directly associate examination results with radiation exposure and are likely to develop newfound anxiety and feelings of self-condemnation and guilt. We reviewed the dilemma surrounding cancer screening and particularly underscored the need to address psychosocial issues associated with possible overdiagnosis. We modified our approach to address individual and social anxiety induced by results of screening conducted after the Fukushima accident. These findings and our experiences regarding the psychosocial issues related to thyroid examination should assist residents in their lifelong decision making and help them prepare for future disasters.
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Olasehinde, Olalekan, Olujide Arije, Funmilola Olanike Wuraola, Marguerite Samson, Olawumi Olajide, Timothy Alabi, Olukayode Arowolo, Carla Boutin-Foster, Olusegun Isaac Alatise, and Thomas Peter Kingham. "Life Without a Breast: Exploring the Experiences of Young Nigerian Women After Mastectomy for Breast Cancer." Journal of Global Oncology, no. 5 (December 2019): 1–6. http://dx.doi.org/10.1200/jgo.18.00248.
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PURPOSE The majority of women managed for breast cancer in Nigeria are relatively young, many in their forties. Mastectomy, the most common surgical treatment, raises psychosocial concerns. Understanding these concerns may help address the fears of women who refuse treatment and aid in the care of those who have had mastectomy. METHODS Using qualitative methods, we purposively sampled women 45 years of age and younger who underwent mastectomy for breast cancer at a Nigerian teaching hospital. One-on-one in-depth interviews were conducted using an unstructured interview guide. Data were transcribed verbatim and analyzed to identify themes and subthemes. RESULTS The study identified six major themes on the impact of mastectomy on psychosocial lives of women, namely decision for mastectomy, postmastectomy transition, body image changes, relationship with husband and sexual life, coping with life postmastectomy, and social support. CONCLUSION Our findings highlight the importance of addressing individual patient’s psychosocial needs and preferences when discussing breast cancer treatment with young women. The experiences of women described in this study reveal several useful themes for planning treatment protocols and postmastectomy care.
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Ure, Cathy, Anna Mary Cooper-Ryan, Jenna Condie, and Adam Galpin. "Exploring Strategies for Using Social Media to Self-Manage Health Care When Living With and Beyond Breast Cancer: In-Depth Qualitative Study." Journal of Medical Internet Research 22, no. 5 (May 25, 2020): e16902. http://dx.doi.org/10.2196/16902.
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Background As breast cancer survival rates improve and structural health resources are increasingly being stretched, health providers require people living with and beyond breast cancer (LwBBC) to self-manage aspects of their care. Objective This study aimed to explore how women use and experience social media to self-manage their psychosocial needs and support self-management across the breast cancer continuum. Methods The experiences of 21 women (age range 27-64 years) were explored using an in-depth qualitative approach. The women varied in the duration of their experiences of LwBBC, which facilitated insights into how they evolve and change their self-management strategies over time. Semistructured interviews were analyzed inductively using a thematic analysis, a polytextual analysis, and voice-centered relational methods. Results The use of multiple social media platforms, such as YouTube, Facebook, WhatsApp, and Twitter, enabled women to self-manage aspects of their care by satisfying needs for timely, relevant, and appropriate support, by navigating identities disrupted by diagnosis and treatment and by allowing them to (re)gain a sense of control. Women described extending their everyday use of multiple platforms to self-manage their care. However, women experienced social media as both empowering and dislocating, as their engagement was impacted by their everyday experiences of LwBBC. Conclusions Health care professionals (HCPs) need to be more aware, and open to the possibilities, of women using multiple social media resources as self-management tools. It is important for HCPs to initiate value-free discussions and create the space necessary for women to share how social media resources support a tailored and timely self-managed approach to their unique psychosocial needs.
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Johnson, Nicole, and Janice Pascal. "Relational Distressed and Maternal Absence: Young Women's Lived Experience of Familial Breast Cancer." Illness, Crisis & Loss 26, no. 3 (July 15, 2016): 200–222. http://dx.doi.org/10.1177/1054137316659419.
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Young women growing up within the context of familial breast cancer are faced with significant psychosocial challenges. The most profound of these are the temporary absence, and permanent loss, of their mothers. Eighteen young women (aged 18–34) from rural Victoria (Australia), with family histories of breast cancer, were interviewed for this study. The data were analyzed using hermeneutic Heideggerian phenomenology to explore their lived experiences. Our findings reveal the long term and pervasive consequences of relational distress associated with the temporary and permanent loss of mothers. This distress is experienced through disruptions to developmental attachment and embodied and biographical identity. We highlight how familial breast cancer extends beyond genetic inheritance to encompass the relational distress of loss and grief. We conclude by highlighting the importance of considering the ways in which temporality, self-identity, and daughters' ways of seeing themselves are significantly altered by their mothers' cancer experience.
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Daniels, Sarah R., Chia-Chen Yang, Samantha J. Toohey, and Victoria W. Willard. "Perspectives on Social Media from Adolescents and Young Adults with Cancer." Journal of Pediatric Oncology Nursing 38, no. 4 (March 17, 2021): 225–32. http://dx.doi.org/10.1177/1043454221992319.
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Background: Adolescents and young adults (AYAs) with cancer use social media in unique ways throughout treatment. The purpose of this article is to describe the social media experiences of AYAs with cancer as a means of exploring the potential impact of social media on AYA psychosocial development after diagnosis and throughout cancer treatment. Methods: Seven AYAs treated for cancer, aged 15–20 years, completed a semi-structured interview regarding their social media preferences and habits. Each interview was transcribed verbatim and de-identified. Data were coded and themes were identified via latent thematic analysis. Results: Four themes emerged regarding social media experiences for AYAs with cancer: (1) changes in audience and feedback after diagnosis; (2) attitudes about body image and peer support; (3) control over personal, familial, and societal messages about illness; and (4) maintaining normalcy despite hospital stressors. Discussion: Social media appear especially useful for promoting social and identity development as AYAs undergo cancer treatment. Specifically, social media provide spaces to negotiate body image and sense of self, to manage peer relationships, to reclaim control and independence, and to maintain normalcy. Understanding these experiences will prepare healthcare providers and caregivers to assess ongoing psychosocial development and adjustment throughout cancer treatment.
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Kebede, Wassie, and Konjit Kebede. "Psychosocial experiences and needs of women diagnosed with cervical cancer in Ethiopia." International Social Work 60, no. 6 (February 26, 2016): 1632–46. http://dx.doi.org/10.1177/0020872815617993.
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Urquhart, R., and E. K. Drake. "Understanding Cancer Survivors' Employment Experiences When Returning to Work After Primary Treatment: A Longitudinal Qualitative Study." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 119s. http://dx.doi.org/10.1200/jgo.18.62000.
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Background: Worldwide, the number of people surviving cancer long-term is growing. This is due to an increase in incidence rates, coupled with earlier detection and improved treatments. Among the difficulties many cancer survivors face are the unique challenges associated with reintegrating back into the work environment after an absence for primary treatment. Aim: To explore cancer survivors' perspectives on and experiences with employment during their return to work (RTW) following primary cancer treatment. Methods: Guided by an interpretive phenomenological approach, this prospective qualitative longitudinal study used in-depth telephone interviews (three interviews/survivor) to develop a rich understanding of how 13 cancer survivors experienced the RTW process. Interviews occurred following primary treatment, and 3 and 9 months later. Data were analyzed using a thematic analysis approach. Results: Preliminary findings indicate that (1) survivors feel they lack information on the RTW process, including logistical information from insurance companies, applicable government agencies (e.g., disability benefits), and employers. Survivors reported that (2) support from colleagues dwindles throughout their cancer treatment and RTW process and (3) pressure to return to work adds to the physiologic and psychosocial side effects they are left to manage during the survivorship period. Finally, survivors felt that having (4) an experienced person to navigate the process with them would be beneficial to easing what they experienced as a difficult transition. Conclusion: Preliminary results suggest survivors have unmet informational and navigational needs around the RTW process after primary cancer treatment. Improved psychosocial support that includes and extends beyond the initial RTW period could help survivors more successfully reintegrate into the work environment.
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Patterson, Pandora, Kimberley R. Allison, Helen Bibby, Kate Thompson, Jeremy Lewin, Taia Briggs, Rick Walker, et al. "The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care." Cancers 13, no. 11 (May 28, 2021): 2675. http://dx.doi.org/10.3390/cancers13112675.
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Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.
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Christodoulidou, S. "The Case of Cyprus: The Psychosocial Needs of Women Living With MBC." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 98s. http://dx.doi.org/10.1200/jgo.18.48600.
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Background: According to international research, it has been found that women with metastatic breast cancer (MBC) have different needs and live different realities than other women. It has been our observation that this is also the case within the Cypriot community, where these realities are often overlooked and rarely discussed, as ignorance, stigma and cultural taboos make women with MBC hide in the shadows. Even though the Republic of Cyprus offers a high standard of medical services for cancer patients, it has been identified that there is more focus on primary breast cancer. Despite the high level of knowledge and advocacy in Cyprus the number of women living with MBC has not been recorded in the National Cancer Registry, therefore the general incidence of MBC in Cyprus remains unknown. Aim: The project recognizes the research gap in understanding the needs of women with MBC in Cyprus, and therefore aims to raise awareness and voice their experiences. The objective is to generate a databank of the experiences and needs of women with MBC that may be a stepping stone in ensuring that MBC is embedded in national cancer strategies. Also, the project aims to improve accessibility to information on MBC and contribute in the prevention, early detection and treatment of breast cancer in Cyprus. The knowledge obtained from this initiative aims to empower patients and advocacy groups. Methods: The project is based on a collaboration between researchers from Europa Donna Cyprus, the Bank of Cyprus Oncology Centre, and the University of Nicosia. This project will recruit MBC patients from all over Cyprus and will use a mixed methods approach. Initially, researchers will assess the quality of life of MBC patients using the SF-36 Measuring Quality of Life Questionnaire. Data analysis will be performed using IBM SPSS. In the second phase, patients will be invited to take part in a qualitative study based on individual interviews regarding their experience of living with MBC. The data obtained will be analyzed using the interpretive phenomenological analysis method. Results: We are currently in the process of data collection and we expect to obtain results by summer 2018. Conclusion: It is expected that the data analysis will offer insight into the lived experiences of women with MBC, identify any challenges that they might face, and what coping strategies women use to overcome them. This knowledge can then be translated and implemented into awareness campaigns, conferences, electronic and printed information materials, but more importantly used as leverage in advocating and influencing decision makers to take actions and adjust national strategies in relation to MBC. Finally, we expect that this project will motivate other researchers to engage into further research of the experience of MBC in Cyprus. Disclosure: Dr. S. Christodoulidou received grant/research sponsorship for this project by SPARC UICC/PFIZER.
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Wallace, I., C. Macgregor, P. Turnbull, A. Allan, L. Howells, and A. Anderson. "Engaging Men in Psychosocial Cancer Support." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 109s. http://dx.doi.org/10.1200/jgo.18.56100.
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Background: Despite increasing rates of cancer survivorship, there is still evidence to suggest men are less likely to access information services, health services and cancer screening. Men may be more reticent to express their emotions in relation to health and specifically in relation to cancer; and so it is important to ensure that services offer different routes to inclusion. Maggie´s ( www.maggiescentres.org ) is an innovative, multidisciplinary, health professional led model of holistic supportive cancer care, widely regarded as an exemplar of best practice in cancer rehabilitation and supported self-management. In 2017 Maggie´s received 249,247 visits across their network of twenty-three centres in the UK, Hong Kong and Tokyo. One of the key challenges for Maggie´s and others is to develop sustainable, innovative and equitable approaches to supportive care. Aim: To explore whether male-specific facilitated support groups provide a constructive environment within which men can engage with health professional led holistic cancer services. Methods: Men (n=39) with a range of cancers (including curative and noncurative) from varied socioeconomic backgrounds, attending male-specific facilitated support groups at eight Maggie's Centres in the UK completed questionnaires to give feedback on the social, emotional, practical and informational support the groups aim to provide. A smaller subset of group members (n=12) participated in focus group discussions to capture themes about why men attend the groups. The group facilitators were interviewed to provide observations about the impact of the groups on both the participants and themselves. Results: Men in the facilitated support groups report high levels of satisfaction in relation to practical (94.8%), emotional (95.2%) and social (90.47%) and informational support (92.50%). Thematic analysis of the smaller subset of focus group data suggest reasons why men attend male-specific support groups including “reducing isolation and developing a sense of belonging”, “creating shared experience and understanding”, “safely expressing emotion”, “protecting loved ones from distress” and “use of male specific language and humor”. Conclusion: Globally, the supportive care needs of men affected by cancer are changing but the Maggie´s model of care offers valuable lessons that can be generalized across varied support settings to meet these emerging needs. The current study underlines the importance of engaging and supporting men throughout the cancer experience through the use of professionally facilitated support groups that discuss themes tailored to the challenges the men face and maximize the opportunity for acceptable social support. Further controlled longitudinal research is required to build on these findings.
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Gibson, Chandrika, Moira O’Connor, Rohen White, Melanie Jackson, Siddhartha Baxi, and Georgia K. B. Halkett. "‘I Didn’t Even Recognise Myself’: Survivors’ Experiences of Altered Appearance and Body Image Distress during and after Treatment for Head and Neck Cancer." Cancers 13, no. 15 (August 2, 2021): 3893. http://dx.doi.org/10.3390/cancers13153893.
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Purpose: Preparation for head and neck cancer treatment is focused on practicalities of treatment. Little or no time is spent prior to treatment discussing aesthetic results of treatment or the psychosocial impact of living with an altered appearance after treatment. The objective of this study was to explore the experiences of survivors of head and neck cancers, with a focus on the psychosocial impact of altered appearance. Methods: A qualitative research approach based on social constructionist theory was used. Twenty-one semi-structured interviews were conducted with survivors of head and neck cancer who had been diagnosed in the previous six years. Thematic analysis was used to identify themes. Results: People diagnosed with HNC reported feeling rushed into treatment, with adequate procedural preparation but little or no preparation related to appearance. The main themes included: Preparation (sub-themes: Decision-making; and Preparation for Altered Appearance); Altered Appearance (sub-themes: Weight Loss; Face, Skin and Hair Changes; and Reconstructive Surgery); and Consequences (sub-themes Reactions from Others; Adapting to Altered Appearance). Conclusions: Body image distress related to altered appearance, contributed to psychosocial issues for many people diagnosed with head and neck cancer. Current practice provides information pre-treatment about many aspects of coping; however, the subject of appearance is not routinely addressed. Communication skills training for health professionals that improves their comfort and sensitivity in discussing and conveying compassion around issues of altered appearance, body image, and trauma, is needed to decrease suffering for survivors, support healthy adaptation to living with altered appearance, and increase their satisfaction with health care.
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Aldaz, Bruno E., Gareth J. Treharne, Robert G. Knight, Tamlin S. Conner, and David Perez. "Oncology healthcare professionals’ perspectives on the psychosocial support needs of cancer patients during oncology treatment." Journal of Health Psychology 22, no. 10 (February 1, 2016): 1332–44. http://dx.doi.org/10.1177/1359105315626999.
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This study explored oncology healthcare professionals’ perspectives on the psychosocial support needs of diverse cancer patients during oncology treatment. Six themes were identified using thematic analysis. Healthcare professionals highlighted the importance of their sensitivity, respect and emotional tact during appointments in order to effectively identify and meet the needs of oncology patients. Participants also emphasised the importance of building rapport that recognises patients as people. Patients’ acceptance of treatment-related distress and uncertainty was described as required for uptake of available psychosocial supportive services. We offer some practical implications that may help improve cancer patients’ experiences during oncology treatment.
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Seaman, Aaron, Seyedehtanaz Saeidzadeh, Nicholas Kendell, Alan Christensen, Timothy Thomsen, Heather Reisinger, and Nitin Pagedar. "Investigating Head and Neck Cancer Survivors’ Experience of Survivorship Care." Innovation in Aging 4, Supplement_1 (December 1, 2020): 430–31. http://dx.doi.org/10.1093/geroni/igaa057.1391.
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Abstract Head and neck cancer (HNC) accounts for 4% of all cancers diagnosed in the US, with 75% in adults over 55 years of age. HNC survivors must deal with the long-term consequences of the cancer and its treatments, which can have significant long-term physical, psychosocial, and financial consequences, dramatically impacting survivors’ lives. While research has identified the unmet needs of HNC survivors, there has been little examination of HNC survivors’ experiences living with a cancer history and engaging in survivorship care. To explore survivors’ experiences and their attitudes toward their survivorship care, we conducted in-depth, semi-structured interviews with 22 HNC survivors whose survivorship care was managed within the HNC program of an academic tertiary care institution. Participants’ mean age was 65 years old, ranging from 33 to 86. The majority of the participants were male (68%), white (96%), married (81%), and had some college education or a higher degree (81%). One third of participants (n=7) had rural residence, as defined by the Rural-Urban Continuum Codes. Participants reported a wide range of experiences based on multiple factors: cancer site, staging, and treatment; their expectations prior to treatment; and personal and social context. They varied in their approaches toward understanding and incorporating the impacts of their cancer experience, from physical side effects of treatment to social impacts. They described the importance of survivorship care both in physical and social terms. We discuss the implications of these results for future interventions to improve HNC survivorship care delivery.
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Ledderer, Loni, and Nina Nissen. "Translating Patient Experiences into Clinical Practice: An Example of ‘Patient involvement’ from Psychosocial Cancer Rehabilitation in Denmark." Conjunctions. Transdisciplinary Journal of Cultural Participation 2, no. 2 (February 11, 2016): 137. http://dx.doi.org/10.7146/tjcp.v2i2.22924.
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In this article we examine meanings and uses of the concept of patient involvement, using a psychosocial cancer rehabilitation intervention in Denmark as an example. Drawing on Scandinavian sociological institutional- ism, we analyse the translation process of the concept and how it is understood, shaped and practised in four interrelated contexts: patients’ experience of cancer care; a call for research bids to improve cancer care; a research project of psychosocial cancer rehabilitation; and the implementation of the project’s intervention in clinical practice. Our analysis reveals distinct understandings and practices of patient involvement informed by the various actors’ perspectives and the structures of the healthcare system. The meaning of patient involvement changed from patients seeking to engage in healthcare on their terms, to patients being expected by researchers and healthcare professionals to be ‘active patients’ in particular ways. Our analysis highlights the importance of critically examining the phenomenon of patient involvement in local contexts.
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Madsen, Rikke, Regner Birkelund, and Lisbeth Uhrenfeldt. "Patients experience major changes in life and significant others struggle with caregiving during the course of incurable cancer: a systematic review and meta-synthesis." European Journal for Person Centered Healthcare 6, no. 1 (April 30, 2018): 88. http://dx.doi.org/10.5750/ejpch.v6i1.1414.
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Aim: The aim of this review was to explore experiences of patients and significant others concerning existential, psychosocial and organisational transitions during the course of incurable cancer.Methods: The search was based on 5 databases (PubMed, CINAHL, Scopus, PsycInfo and Embase) and 50 studies were finally included and critically appraised. The review was inspired by the methods of Joanna Briggs Institute, Kvale and Brinkmann and illustrated with effect size, inspired by Sandelowski and Barroso.Results: Based on experiences from 496 patients and 320 significant others, 3 main themes with 3 subthemes each were identified and, from these, a meta-synthesis was developed. Patients experience major changes in life and significant others struggle with caregiving during the course of incurable cancer. Main themes: 1. Patients living with incurable cancer experience major changes in life; 2. Patients’ experiences of both living and dying; 3. Significant others living and loosing. Relating findings to the theory of Irvin D. Yalom revealed that patients and significant others experience transitioning into living most of life in an ontological mode of existence.Conclusion: This review underlines the complexity within planning individualised palliative care and contributes with evidence-based knowledge relevant to healthcare professionals in palliative cancer care.
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Thomas, Roanne, Tricia Morrison, Stephanie Saunders, Mary Pfaff, Wendy Gifford, Josee Boulanger, Brianna Hammond, and Chad Hammond. "Situating our selves: using mixed media to convey experiences of psychosocial cancer research." Arts & Health 12, no. 2 (August 1, 2018): 116–38. http://dx.doi.org/10.1080/17533015.2018.1494453.
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Girgis, Afaf, JanelleV Levesque, and Martha Gerges. "Psychosocial Experiences, Challenges, And Coping Strategies Of Chinese–Australian Women With Breast Cancer." Asia-Pacific Journal of Oncology Nursing 7, no. 2 (2020): 141. http://dx.doi.org/10.4103/apjon.apjon_53_19.
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Henderson, Fiona ME, Ainslea J. Cross, and Amy R. Baraniak. "‘A new normal with chemobrain’: Experiences of the impact of chemotherapy-related cognitive deficits in long-term breast cancer survivors." Health Psychology Open 6, no. 1 (January 2019): 205510291983223. http://dx.doi.org/10.1177/2055102919832234.
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Chemobrain is one of the most commonly reported side-effects of cancer treatment. However, there is limited research into its psychosocial concomitants. This study aimed to explore the long-term lived experience of chemobrain. Interpretative phenomenological analysis allowed an in-depth investigation of 12 breast cancer survivors suffering from perceived cognitive deficits at least 1-year post-treatment. Themes were organised around the illness representations framework. Commonly reported cognitive deficits related to memory, language and processing speed, which affected participants’ sense of identity and their interactions with others. Individual experiences were mediated by health beliefs regarding controllability, validation and impairment trajectory.
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Reed, Sarah C., Janice Bell, Robin L. Whitney, Andra Davis, Rebecca Salisbury Lash, Katherine Kim, David Copenhaver, Richard J. Bold, and Jill G. Joseph. "Psychosocial outcomes in active treatment through survivorship." Journal of Clinical Oncology 32, no. 31_suppl (November 1, 2014): 241. http://dx.doi.org/10.1200/jco.2014.32.31_suppl.241.
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241 Background: An estimated 13.7 million cancer survivors live in the United States, a population projected to reach 18 million in 2022. Late- and long-term psychological and emotional effects of cancer can be severe and unfortunately, often go unrecognized and untreated. Few population based data exist that capture psychosocial outcomes across the cancer continuum, from active treatment through survivorship. Methods: We analyzed the Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement (n=1,592) to examine psychosocial outcomes among active treatment and survivorship patients across the post-treatment trajectory. Survey-weighted regression models were used to determine the risk of depression (PHQ-2), psychological distress (K-6) and cancer-specific worry related to recurrence. The primary independent variable was post-treatment survivorship status, categorized in years (1-2; 3-4; 5-9; 10-20; >21years) compared to active treatment as the reference group. All models were adjusted for plausible confounding variables (age, sex, race/ethnicity, marital status, employment, income, education, health insurance and health status). Estimates are generalizable to US non-institutionalized populations. Results: No significant difference in the risk of depression (PHQ-2) or psychological distress (K-6) was evident between those in active treatment and cancer survivors at any time post-treatment and those in active treatment. In contrast, cancer-specific worry was significantly higher among those respondents in active treatment (OR 4.3; 95% CI: 2.8, 6.6) compared to those post-treatment. Within the post-treatment survivorship categories, cancer-specific worry generally declined with time post-treatment; however these associations were only significant among those whose treatment was more than 20 years ago (OR= 0.12; 95% CI: 0.04, 0.36) relative to those in active treatment. Conclusions: Psychosocial concerns are pervasive among cancer survivors and are similar to concerns among individuals undergoing active treatment. These findings highlight unmet psychosocial needs among cancer survivors and demonstrate the importance of targeted interventions across the survivorship continuum.
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Boden, J., and S. Willis. "The psychosocial issues of women with cancer of the vulva." Journal of Radiotherapy in Practice 18, no. 1 (September 17, 2018): 93–97. http://dx.doi.org/10.1017/s1460396918000420.
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AbstractBackgroundCancer of the vulva is rare, it is a disease commonly diagnosed in elderly women, however, the incidence in younger women is rising. Many patients diagnosed and treated for vulval cancer face physical, social, sexual and psychological challenges. It is essential that therapy radiographers and members of the wider multidisciplinary team understand such challenges in order to provide patient centred care.AimThis review aims to highlight the key psycho-social issues experienced by patients with cancer of the vulva, identifying implications for practice in order to improve the holistic care for this patient group.MethodA search of English literature was performed using Medline, Pubmed, CINAHL and PsycINFO. Search terms included, vulva or vulval cancer, psychosocial, psychosexual impact and quality of life. Articles were excluded if they focussed on cancers other than gynaecological and vulval cancers.Results and ConclusionsAlthough there are numerous reports on the psychological and psychosocial problems faced by gynaecological cancer patients; there was a paucity of literature pertaining to patients with cancer of the vulva, this is consistent with previous research. Studies show a significant negative, psychosocial impact experienced by these women. Common themes being isolation, loneliness, stigmatisation and lack of information for patients and their carers, themes spanning over three decades. Nevertheless, it is important to be aware of the findings from recent studies consistent with patient’s needs, highlighting that listening to women’s narratives on living with cancer of the vulva is essential if we are to help with the psychosocial issues experienced by these women. They underline a necessity to raise awareness among healthcare professionals and the general public, to improve holistic support for this particular group of women. This is particularly important in the radiotherapy setting as many of these women undergo lengthy courses of treatment and the appropriately trained therapeutic radiographer can play a vital role in addressing the physical and psychosocial problems.
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Cheung, Christabel K., Thuli Katerere-Virima, Laura E. Helbling, Bria N. Thomas, and Reginald Tucker-Seeley. "Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework." Journal of Clinical Oncology 38, no. 29_suppl (October 10, 2020): 163. http://dx.doi.org/10.1200/jco.2020.38.29_suppl.163.
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163 Background: Cancer can be a setback for young active-duty military patients, with potential implications for their financial well-being, early career paths, and young families. Despite the assumption of sufficient material support for military patients, cancer and its treatments still result in substantial out-of-pocket expenses and lost-opportunity costs that can lead to financial hardship. Although prior cancer survivorship studies have put forth a material, psychosocial, and behavioral conceptual framework for describing financial hardship following a cancer diagnosis, it is unknown whether this framework adequately depicts the experience of financial hardship among military adolescent and young adult (AYA) patients. The primary aim of the current study was to extend this conceptual model of financial hardship following a cancer diagnosis for application among military AYA patients. Methods: Using Gale and colleagues’ Framework Method for qualitative multi-disciplinary health research, the investigator team conducted focus groups and key informant interviews (n=24) with active-duty AYA cancer patients, cancer care providers, and commanding officers at both a military medical center and a military post in Hawaii. Subsequently, content analysis and thematic abstraction produced results that were sorted to characterize the material, psychosocial, and behavioral domains of financial hardship. Finally, investigators employed health behavioral change theories to construct a conceptual framework. Results: Data analysis revealed that young active-duty military patients’ experiences of financial hardship following a cancer diagnosis occur within material, psychosocial, and behavioral domains that are uniquely situated within the environments of AYA development and military culture. Hence, we elaborated upon an existing conceptual framework of the financial hardship of cancer, by extending it to capture two meso-level contexts that emerged from our findings: (1) life course development and (2) occupational culture. Conclusions: Differentiating individual experiences of financial hardship within the contexts of life course development and occupational culture, may enable the development of interventions that are informed by the aspect of financial hardship most impacted by cancer care for this special population. Future research should further explicate the meso-level contexts in our study, and investigate the associations among and between factors within these social and environmental contexts.
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D’Urso, Anita, Kiki Mastroyannopoulou, and Angela Kirby. "Experiences of posttraumatic growth in siblings of children with cancer." Clinical Child Psychology and Psychiatry 22, no. 2 (August 4, 2016): 301–17. http://dx.doi.org/10.1177/1359104516660749.
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As survival rates continue to improve for children diagnosed with cancer, strides in achieving better psychosocial outcomes for both children with cancer and their families have been accentuated. The current study aimed to explore the experiences of siblings of children diagnosed with cancer and attempted to overcome some of the limitations described in previous research. Primarily, the study considered the theoretical framework of posttraumatic growth (PTG) in the project design and analysis. Semi-structured interviews were completed with six siblings. Thematic analysis was employed to identify themes within the data set as a whole. The data revealed that siblings experienced a range of difficult emotions throughout the cancer trajectory as well as experiencing remarkable changes in their lives. This included both positive and negative changes. These changes included increased empathy and resilience, improved family relationships, disrupted routine, increased responsibility and perceived changes in the ill child. Siblings described factors which they found helpful and unhelpful in adjusting to these changes. The report ends with a discussion of the themes and their clinical and theoretical implications. The report also highlights the research limitations and areas for future investigation.
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Aldaz, Bruno E., Gareth J. Treharne, Robert G. Knight, Tamlin S. Conner, and David Perez. "‘It gets into your head as well as your body’: The experiences of patients with cancer during oncology treatment with curative intent." Journal of Health Psychology 23, no. 1 (October 5, 2016): 3–16. http://dx.doi.org/10.1177/1359105316671185.
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This study explored the psychosocial experiences of patients with cancer during the course of oncology treatment with curative intent. Our aim was to gather in-depth insights into the shared elements of oncology treatment across a range of cancer types. A total of 10 individuals undergoing oncology treatment participated in semi-structured interviews. Six themes were identified using interpretative phenomenological analysis: diminished well-being, perceived role changes in intimate relationships, heightened awareness of limited time, a new order of priorities, taking things as they come and development of trust in health professionals. These themes indicate relevant areas of patients’ well-being, which might be enhanced through psychosocial support services.
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Jones, Jennifer M., Margaret Fitch, Jared Bongard, Manjula Maganti, Abha Gupta, Norma D’Agostino, and Chana Korenblum. "The Needs and Experiences of Post-Treatment Adolescent and Young Adult Cancer Survivors." Journal of Clinical Medicine 9, no. 5 (May 13, 2020): 1444. http://dx.doi.org/10.3390/jcm9051444.
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(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (≥18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18–34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1–3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0–9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0–6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0–5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.
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Arving, Cecilia, and Inger Holmström. "Creating a new profession in cancer nursing? Experiences of working as a psychosocial nurse in cancer care." Journal of Clinical Nursing 20, no. 19-20 (March 1, 2011): 2939–47. http://dx.doi.org/10.1111/j.1365-2702.2011.03709.x.
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Finizia, Caterina A., Mia Johansson, and Anna Rydeé. "S184 – Communication Experiences and QOL after Laryngeal Cancer." Otolaryngology–Head and Neck Surgery 139, no. 2_suppl (August 2008): P137—P138. http://dx.doi.org/10.1016/j.otohns.2008.05.358.
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Objectives 1) To investigate the sensitivity to change of the Swedish Self-Evaluation of Communication Experiences after Laryngeal Cancer questionnaire (S-SECEL), addressing communication dysfunction in patients treated for laryngeal cancer. 2) To evaluate longitudinal score changes in relation to established and validated quality of life instruments. Methods 100 patients with Tis-T4 laryngeal cancer were included prior to treatment onset. Patients answered 4 questionnaires at 6 occasions during 1 year; the S-SECEL, the EORTC Quality of Life Questionnaire, the EORTC Head and Neck cancer module, and Hospital Anxiety and Depression (HAD) scale. In addition, performance status was assessed. Differences within groups were tested with the Wilcoxon paired signed ranks test and between-group analyses were carried out using the Mann-Whitney U test. Magnitude of group differences was analyzed by means of effect sizes. Results S-SECEL was well accepted with a response rate of 76%. Communication dysfunction increased at 1 month, followed by a continuous decrease throughout the year. Changes were statistically significant at most measurement (p < 0.001), demonstrating the sensitivity of the S-SECEL to changes in communication over time. The S-SECEL was more sensitive than EORTC regarding communication dysfunction. Conclusions The questionnaire was responsive to change and showed convergent results when compared to established HRQL questionnaires. As a routine screening instrument, the S-SECEL could be a valuable tool for identifying patients at risk for psychosocial problems, to help plan rehabilitation and in-depth counselling. It is therefore recommended for clinical use in evaluation of communication dysfunction for all patients with laryngeal cancer, irrespective of treatment.
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Guo, Ping, Sawsan Alajarmeh, Ghadeer Alarja, Waleed Alrjoub, Ayman Al-Essa, Lana Abusalem, Asem Mansour, Richard Sullivan, Omar Shamieh, and Richard Harding. "Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer." Palliative Medicine 35, no. 5 (March 26, 2021): 916–26. http://dx.doi.org/10.1177/02692163211000236.
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Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.
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Hamilton, Jada G., Jessica M. Long, Amanda C. Brandt, Jamie Brower, Heather Symecko, Erin E. Salo-Mullen, Stephanie N. Christian, et al. "Patients’ Medical and Psychosocial Experiences After Detection of a CDH1 Variant With Multigene Panel Testing." JCO Precision Oncology, no. 3 (December 2019): 1–14. http://dx.doi.org/10.1200/po.18.00300.
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PURPOSE Germline CDH1 pathogenic variants (PV) are associated with hereditary diffuse gastric cancer and lobular breast cancer. Although prevalence of CDH1 PV is low in the general population, detection of these variants is increasing with the growing use of multigene panel testing. Little is known about the experiences of individuals tested for CDH1 variants in the multigene panel testing era. METHODS Participants recruited from the Prospective Registry of Multiplex Testing completed a cross-sectional self-report survey regarding CDH1 genetic testing experiences, medical management, and psychosocial adaptation. RESULTS Discordance existed in interpretations of CDH1 results; 13.3% of cases had disagreements in variant classifications among commercial laboratories, and 21.4% had disagreements between participant self-report and ClinVar classification. Survey data were available from 57 individuals reporting either PV (n = 16) or variants of uncertain significance (VUS; n = 41). Those with PV were more likely than those with VUS to report receiving a recommendation for prophylactic gastrectomy, although only 40.0% of those with PV received this recommendation. Participants with VUS were less satisfied with their health care providers’ knowledge and reported less CDH1 knowledge, distress, and worry about discrimination. Participants with PV perceived greater breast cancer risks, but similar gastric cancer risks, as those with VUS. CONCLUSION Few individuals with CDH1 PV report receiving recommendations for prophylactic gastrectomy, and no differences in perceived gastric cancer risk were observed based on participants’ CDH1 results, suggesting serious unmet informational needs.
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Valente, Marco, Ilaria Chirico, Giovanni Ottoboni, and Rabih Chattat. "Relationship Dynamics among Couples Dealing with Breast Cancer: A Systematic Review." International Journal of Environmental Research and Public Health 18, no. 14 (July 7, 2021): 7288. http://dx.doi.org/10.3390/ijerph18147288.
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Most studies have been concerned with the experiences and needs of women with breast cancer and spouses/partners separately. In this review, the relationship dynamics that characterize the couple’s experience of breast cancer treatment were investigated. Findings will inform both researchers and professionals in the area of oncology. A systematic literature search was performed in CINAHL, PsychINFO, MEDLINE, Scopus and Web of Science. A checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Seventeen studies were included, and the synthesis of the literature revealed five domains that characterized the dyadic process: dyadic coping strategies, psychosocial support, communication, the couple’s sexual life and spirituality. The included studies provide the basis for knowledge and awareness about the experience of couples with cancer, the specific dimensions enacted during the breast cancer treatment path and the type of responses that are associated with a positive couple’s adjustment to the disease.
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Campbell-Enns, Heather J., and Roberta L. Woodgate. "The psychosocial experiences of women with breast cancer across the lifespan: a systematic review." Psycho-Oncology 26, no. 11 (October 4, 2016): 1711–21. http://dx.doi.org/10.1002/pon.4281.
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Long Roche, Kara, Ana M. Angarita, Angelica Cristello, Melissa Lippitt, Adil H. Haider, Janice V. Bowie, Amanda N. Fader, and Ana I. Tergas. "“Little Big Things”: A Qualitative Study of Ovarian Cancer Survivors and Their Experiences With the Health Care System." Journal of Oncology Practice 12, no. 12 (December 2016): e974-e980. http://dx.doi.org/10.1200/jop.2015.007492.
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Purpose: Navigation of a complex and ever-changing health care system can be stressful and detrimental to psychosocial well-being for patients with serious illness. This study explored women’s experiences with navigating the health care system during treatment for ovarian cancer. Methods: Focus groups moderated by trained investigators were conducted with ovarian cancer survivors at an academic cancer center. Personal experiences with cancer treatment, provider relationships, barriers to care, and the health care system were explored. Sessions were audiotaped, transcribed, and coded by using grounded theory. Subsequently, one-on-one interviews were conducted to further evaluate common themes. Results: Sixteen ovarian cancer survivors with a median age of 59 years participated in the focus group study. Provider consistency, personal touch, and patient advocacy positively affected the care experience. Treatment with a known provider who was well acquainted with the individual’s medical history was deemed an invaluable aspect of care. Negative experiences that burdened patients, referred to as the “little big things,” included systems-based challenges, which were scheduling, wait times, pharmacy, transportation, parking, financial, insurance, and discharge. Consistency, a care team approach, effective communication, and efficient connection to resources were suggested as ways to improve patients’ experiences. Conclusion: Systems-based challenges were perceived as burdens to ovarian cancer survivors at our institution. The role of a consistent, accessible care team and efficient delivery of resources in the care of women with ovarian cancer should be explored further.
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Van Schoors, Marieke, Jan De Mol, Natacha Laeremans, Lesley L. Verhofstadt, Liesbet Goubert, and Hanna Van Parys. "Siblings’ Experiences of Everyday Life in a Family Where One Child Is Diagnosed With Blood Cancer: A Qualitative Study." Journal of Pediatric Oncology Nursing 36, no. 2 (December 12, 2018): 131–42. http://dx.doi.org/10.1177/1043454218818067.
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Background: Childhood cancer not only presents challenges to the life of the child with cancer but also to the siblings’ daily family life. The aim of the current study was to gain a better understanding of siblings’ experiences of living in a family where one child has been diagnosed with blood cancer. Method: Ten siblings of children with leukemia or non-Hodgkin lymphoma completed a semistructured interview about their everyday family life experiences postdiagnosis. The verbatim transcripts of the interviews served as the data for an interpretative phenomenological analysis. Results: The results showed that overall the siblings experienced a continuity in many aspects of their family life: they still experienced their family as an important source of support and information/communication, as warm and loving and as a safe harbor where family members aim to protect each other. However, at the same time, the participating siblings also expressed that some things felt unmistakably different postdiagnosis: They felt that their family as a whole had been ripped apart, with a greater focus on the diagnosed child and changing responsibilities for each family member. Conclusion: This study informs parents and clinicians about the daily family life experiences from the siblings’ perspective, a perspective that is often overlooked. A focus on challenges as well as continuities within family life, the wish for connection expressed by the siblings, and the uniqueness of every sibling’s experiences is what can be taken away from this study by psychosocial workers in the field.
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Ashurst, Kerri L., Jason D. Hans, Donna R. Smith, and Kenneth R. Jones. "Positive Youth Development in the Midst of Coping with Parental Cancer: Implications for Youth Development Research and Practice." Journal of Youth Development 5, no. 3 (September 1, 2010): 43–54. http://dx.doi.org/10.5195/jyd.2010.208.
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Four implications for youth development research and practice resulted from a qualitative study on psychosocial developmental experiences of late adolescents coping with parental cancer during late adolescence. The study employed a developmental systems framework and grounded theory methods. Results suggest three primary psychosocial developmental influences, including multilevel influences (individual, familial, and extrafamilial risk and protective factors), coping strategies to maintain control, and responses to uncertainty and anticipatory grief. The particular combination of risk and protective factors present in participants’ lives resulted in positive outcomes; resilience was the central unifying concept that characterized the primary psychosocial developmental outcomes of each participant. This finding illuminates the need to expand our focus in youth development research and practice to include positive developmental outcomes that can result from coping with life crises during adolescence.
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Saunders, Stephanie, Chad Hammond, and Roanne Thomas. "Exploring Gender-Related Experiences of Cancer Survivors Through Creative Arts: A Scoping Review." Qualitative Health Research 29, no. 1 (May 7, 2018): 135–48. http://dx.doi.org/10.1177/1049732318771870.
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Negative health consequences of cancer and its treatments are multifaceted. Research suggests numerous psychosocial benefits may be gained by cancer survivors who engage in arts-based practices. To grasp the breadth of this literature, we undertook a scoping review exploring the intersection between arts-based practices, gender, and cancer. Three databases were searched according to the following criteria: (a) participants older than 18 years, (b) use of arts-based practices, (c) explore cancer survivorship, and (d) gender-based analysis component. A total of 1,109 studies were identified and 11 met inclusion criteria. Themes extracted illustrate four transformative moments related to gender identities postcancer diagnosis: (a) fostering reflection after a cancer diagnosis, (b) constructing new narratives of gender postcancer, (c) navigating gender norms in search of support for new identities, and (d) interrogation of perceived gender norms. Findings demonstrate potential contributions of arts-based practices in shaping cancer-related gender identities. Future research should investigate these experiences across a wider population.
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Malone, Colin, Jasmin A. Tiro, Diana SM Buist, Tara Beatty, John Lin, Kilian Kimbel, Hongyuan Gao, Chris Thayer, Diana L. Miglioretti, and Rachel L. Winer. "Reactions of women underscreened for cervical cancer who received unsolicited human papillomavirus self-sampling kits." Journal of Medical Screening 27, no. 3 (November 20, 2019): 146–56. http://dx.doi.org/10.1177/0969141319885994.
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Objectives To evaluate experiences and reactions after receiving a mailed, unsolicited human papillomavirus self-sampling kit and identify psychosocial correlates of using kits. Methods Survey participants were underscreened women aged 30–64 who were mailed human papillomavirus kits as part of a pragmatic trial at Kaiser Permanente Washington, a United States integrated health care system. Six months after the mailing, we invited kit returners and non-returners to complete a web survey that measured psychosocial factors (e.g. cervical cancer/human papillomavirus knowledge, attitudes toward screening), experiences, and reactions to kits. We compared responses between kit returners and non-returners. Results Comparing 116 kit returners (272 invited) and 119 non-returners (1083 invited), we found no clinically significant differences in psychosocial factors. Overall, survey respondents showed knowledge gaps in human papillomavirus natural history (82% did not know human papillomavirus infection can clear on its own) and interpreting human papillomavirus test results (37% did not know a human papillomavirus-negative result indicates low cancer risk). Kit returners found kits convenient and easy to use (>90%). The most common reason for non-return was low confidence in ability to correctly use a kit, although many non-returners (49%) indicated that they would consider future use. Women reported low trust in human papillomavirus testing to identify women at high risk for cervical cancer (52% in returners, 42% in non-returners). Conclusions Screening programs could improve uptake and acceptability of human papillomavirus self-sampling through outreach materials that emphasize the high efficacy of human papillomavirus testing for cervical cancer screening and educate patients about how to interpret results.
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Warren, Narelle, Deirdre M. Melrose, Joanne E. Brooker, and Sue Burney. "Psychosocial distress in women diagnosed with gynecological cancer." Journal of Health Psychology 23, no. 7 (March 31, 2016): 893–904. http://dx.doi.org/10.1177/1359105316640061.
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Many women with gynecological cancer report psychosocial distress, and clarification of the risks, vulnerabilities, and protective factors is required. The aim of this study was to investigate the lived experience of gynecological cancer patients and to understand the factors that underlie psychosocial distress. Semi-structured interviews with seven women diagnosed with gynecological cancer revealed the role of social support, or its absence, selective withholding of information, and existential loneliness in women’s experience of distress. Social support provided a buffer against distress, while feelings of alienation and being alone exacerbated distress. Interventions to address these concerns may lead to improved quality of life for this patient group.