Day-to-Day Decision Making by Adolescents and Young Adults with Cancer

2022 ◽  
pp. 275275302110687
Author(s):  
Kimberly A. Pyke-Grimm ◽  
Linda S. Franck ◽  
Bonnie Halpern-Felsher ◽  
Robert E. Goldsby ◽  
Roberta S. Rehm

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.

2021 ◽  
Vol 13 (12) ◽  
pp. 6581
Author(s):  
Jooyoung Hwang ◽  
Anita Eves ◽  
Jason L. Stienmetz

Travellers have high standards and regard restaurants as important travel attributes. In the tourism and hospitality industry, the use of developed tools (e.g., smartphones and location-based tablets) has been popularised as a way for travellers to easily search for information and to book venues. Qualitative research using semi-structured interviews based on the face-to-face approach was adopted for this study to examine how consumers’ restaurant selection processes are performed with the utilisation of social media on smartphones. Then, thematic analysis was adopted. The findings of this research show that the adoption of social media on smartphones is positively related with consumers’ gratification. More specifically, when consumers regard that process, content and social gratification are satisfied, their intention to adopt social media is fulfilled. It is suggested by this study that consumers’ restaurant decision-making process needs to be understood, as each stage of the decision-making process is not independent; all the stages of the restaurant selection process are organically connected and influence one another.


Healthcare ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 525
Author(s):  
Janneke de Vries ◽  
Jeanine Verbunt ◽  
Janine Stubbe ◽  
Bart Visser ◽  
Stephan Ramaekers ◽  
...  

The purpose of this study was to study the association between the presence of generalized joint hypermobility (GJH) and anxiety within a non-clinical high performing group of adolescents and young adults. Second, to study the impact of GJH and/or anxiety on physical and psychosocial functioning, 168 adolescents and young adults (mean (SD) age 20 (2.9)) were screened. Joint (hyper)mobility, anxiety, and physical and psychosocial functioning were measured. In 48.8% of all high performing adolescents and young adults, GJH was present, whereas 60% had symptoms of anxiety. Linear models controlled for confounders showed that adolescents and young adults with GJH and anxiety had decreased workload (ß (95%CI) −0.43 (−0.8 to −0.08), p-value 0.02), increased fatigue (ß (95%CI) 12.97 (6.3–19.5), p-value < 0.01), and a higher level of pain catastrophizing (ß (95%CI) 4.5 (0.5–8.6), p-value 0.03). Adolescents and young adults with only anxiety had increased fatigue (ß (95%CI) 11 (4.9–19.5). In adolescents and young adults with GJH alone, no impact on physical and psychosocial functioning was found. Adolescents and young adults with the combination of GJH and anxiety were significantly more impaired, showing decreased physical and psychosocial functioning with decreased workload, increased fatigue, and pain catastrophizing. Presence of GJH alone had no negative impact on physical and psychosocial functioning. This study confirms the association between GJH and anxiety, but especially emphasizes the disabling role of anxiety. Screening for anxiety is relevant in adolescents and young adults with GJH and might influence tailored interventions.


Author(s):  
Albert Farre ◽  
Sara Ryan ◽  
Abigail McNiven ◽  
Janet E. McDonagh

Abstract Introduction Young people’s transition into adulthood is intertwined with the worlds of education and work. Poor health in adolescence has been associated with poorer education and employment outcomes in adulthood. This paper explores the impact of arthritis on the educational and early work experiences of young people with arthritis. Methods We undertook a supplementary secondary analysis of a qualitative dataset comprising narrative and semi-structured interviews of 39 young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Results Our findings illustrate how young people living with arthritis are faced with a range of added disruptions and challenges in their educational/vocational lives. There is an important element of resilience associated with the process of making a career choice and acting upon personal aspirations. Appropriate support and flexibility in the workplace/educational setting can enable successful outcomes, but disclosure is not a straightforward process for young people living with arthritis. Conclusions It is paramount that health providers consistently and effectively address self-advocacy skills with the young person, particularly during educational and vocational transitions. Alongside this, there is the need to further strengthen the health-school/work interface to ensure that young people living with chronic illness can meet their full potential in adulthood.


Author(s):  
Amanda Drury ◽  
Sheila Payne ◽  
Anne-Marie Brady

Abstract Purpose This study aims to explore the prevalence of CRC survivorship issues and their impact on survivors’ quality of life (QoL). Methods This study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis (n = 304) were purposively recruited from three hospitals and twenty-one cancer support centres in Ireland. QoL was evaluated using the EuroQol and FACT-C questionnaires and results compared to population norms. 22 survey participants took part in semi-structured interviews exploring the impact of survivorship issues on their daily lives. Results While CRC survivors reported QoL outcomes comparable to or better than normative populations, 54% were dissatisfied with their QoL. The most common survivorship issues reported included negative body image (74%), fatigue (68%), sexual dysfunction (66%) and sleep disturbance (59%). Thematic analysis of the qualitative data illustrated survivors’ attempts to live with the impact of cancer and its treatment (loss, fear, impact) and striving to contextualise, reframe and understand the consequences of cancer and its treatment (control, vigilance, benefit). Within these themes, the cross-domain impact of less prevalent symptoms including bowel dysfunction (28–57%) and peripheral neuropathy (47%) were widely discussed. Conclusions Although cancer survivors report positive QoL outcomes, many experience distressing physical, psychological and social effects. The findings suggest less common and difficult to manage symptoms are the greatest source of distress and unmet need. Support and information must be tailored to address survivors’ individual needs and preferences for support, informed by holistic person-centred assessment.


2012 ◽  
Vol 17 (5) ◽  
pp. 797-808 ◽  
Author(s):  
Cynthia Fair ◽  
Lori Wiener ◽  
Sima Zadeh ◽  
Jamie Albright ◽  
Claude Ann Mellins ◽  
...  

2021 ◽  
Vol 28 (4) ◽  
pp. 3201-3213
Author(s):  
Kaitlyn Howden ◽  
Camille Glidden ◽  
Razvan G. Romanescu ◽  
Andrew Hatala ◽  
Ian Scott ◽  
...  

We aimed to describe the negative and positive impacts of changes in cancer care delivery due to COVID-19 pandemic for adolescents and young adults (AYAs) in Canada, as well as the correlates of negative impact and their perspectives on optimization of cancer care. We conducted an online, self-administered survey of AYAs with cancer living in Canada between January and February 2021. Multiple logistic regression was used to identify factors associated with a negative impact on cancer care. Of the 805 participants, 173 (21.5%) experienced a negative impact on their cancer care including delays in diagnostic tests (11.9%), cancer treatment (11.4%), and appointments (11.1%). A prior diagnosis of mental or chronic physical health condition, an annual income of <20,000 CAD, ongoing cancer treatment, and province of residence were independently associated with a negative cancer care impact (p-value < 0.05). The majority (n = 767, 95.2%) stated a positive impact of the changes to cancer care delivery, including the implementation of virtual healthcare visits (n = 601, 74.6%). Pandemic-related changes in cancer care delivery have unfavorably and favorably influenced AYAs with cancer. Interventions to support AYAs who are more vulnerable to the adverse effects of the pandemic, and the thoughtful integration of virtual care into cancer care delivery models is essential.


Author(s):  
Jane Wilcock ◽  
Jill Manthorpe ◽  
Jo Moriarty ◽  
Steve Iliffe

Little is known of the experiences of directly employed care workers communicating with healthcare providers about the situations of their employers. We report findings from 30 in-depth semi-structured interviews with directly employed care workers in England undertaken in 2018–19. Findings relate to role content, communication with healthcare professionals and their own well-being. Directly employed care workers need to be flexible about the tasks they perform and the changing needs of those whom they support. Having to take on health liaison roles can be problematic, and the impact of care work on directly employed workers’ own health and well-being needs further investigation.


2021 ◽  
Author(s):  
Gillian Parker ◽  
Monika Kastner ◽  
Karen Born ◽  
Nida Shahid ◽  
Whitney Berta

Abstract Background:Choosing Wisely (CW) is an international movement comprised of national campaigns in more than 20 countries to reduce low-value care (LVC). Hospitals and healthcare providers are examining existing practices and putting interventions in place to reduce practices that offer little to no benefit to patients or may cause them harm. De-implementation, the reduction or removal of a healthcare practice is an emerging field of research. Little is known about the factors which (i) sustain LVC; and (ii) the magnitude of the problem of LVC. In addition, little is known about the processes of de-implementation, and if and how these processes differ from implementation endeavours. The objective of this study was to explicate the myriad factors which impact the processes and outcomes of de-implementation initiatives that are designed to address national Choosing Wisely campaign recommendations.Methods:Semi-structured interviews were conducted with individuals implementing Choosing Wisely Canada recommendations in healthcare settings in four provinces. The interview guide was developed using concepts from the literature and the Implementation Process Model (IPM) as a framework. All interviews were conducted virtually, recorded, and transcribed verbatim. Data were analysed using thematic analysis.Results:Seventeen Choosing Wisely team members were interviewed. Participants identified numerous provider factors, most notably habit, which sustain LVC. Contrary to reporting in recent studies, the majority of LVC in the sample was not ‘patient facing’; therefore, patients were not a significant driver for the LVC, nor a barrier to reducing it. Participants detailed aspects of the magnitude of the problems of LVC, specifically the impact of harm and resources. Unique factors influencing the processes of de-implementation reported were: influence of Choosing Wisely campaigns, availability of data, lack of targets and hard-coded interventions.Conclusions: This study explicates factors ranging from those which impact the maintenance of LVC to factors that impact the success of de-implementation interventions intended to reduce them. The findings draw attention to the significance of unintentional factors, highlight the importance of understanding the impact of harm and resources to reduce LVC and illuminate the overstated impact of patients in de-implementation literature. These findings illustrate the complexities of de-implementation.


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