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Processes in HNC survivors’ attempts to integrate self-management into daily life following primary treatment
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Background
Self-management may help cancer survivors to better deal with challenges to their physical, functional, social and psychological well-being presented by cancer and its treatment. Nonetheless, little is known about how people integrate cancer self-management practices into their daily lives. The aim of this study was to describe and chara...
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Introduction
Understanding the impact of cancer and its treatment on people’s everyday lives will help prepare people for what to expect, enable health professionals to predict likely recovery trajectories and shape care management according to needs. HORIZONS will recruit people awaiting treatment and follow them up at regular intervals to assess...
Citations
... While the incidence of this cancer has risen rapidly due to the association of the Human Papillomavirus (HPV) with oropharyngeal carcinoma, it is highly responsive to therapy, resulting in improved survival outcomes [3]. Progress continues to be made in detecting, diagnosing, and treating HNC, with a higher number of cancer survivors living longer with the associated cancer and treatmentrelated consequences [4]. ...
... A person with HNL will often experience skin tightness, heaviness and mobility issues in the jaw, face and neck [12,13]. HNC patients must often accept that the effects of lymphoedema may limit their daily living activities through restrictions in functional status and altered appearance [4,14]. There are extensive consequences of HNL but cosmetic sequelae is still regarded as the most common among HNC survivors, with 84% reporting appearance issues in a recent review [15]. ...
... Previous studies have demonstrated that HNC survivors with HNL have shown benefits when self-administering treatment in their homes after sufficient training [21]. The role of self-management would appear to be an essential component of HNL management to enable detrimental consequences of lymphoedema to be controlled [4,22]. ...
Introduction/Background
Patients living with and after head and neck cancer often experience treatment-related consequences. Head and neck lymphoedema can be described as a common chronic side effect of head and neck cancer and recognised as a contributing factor to impairment of functional status, symptom burden and health-related quality of life. The effects of head and neck lymphoedema can limit patients’ involvement in daily activities and alter their appearance, increasing symptom burden and negatively affecting health-related quality of life.
Objective
The protocol outlines the rationale and aims for the systematic review. The main aim of the systematic review is to identify and systematically synthesise the literature on the effectiveness of head and neck lymphoedema management strategies, on both function status and health-related quality of life for head and neck cancer patients.
Methods and analysis
This protocol will be conducted according to the PRISMA-P guidelines. Electronic databases will be systematically searched using MEDLINE via Ovid and PubMed, CINAHL, Cochrane Central Register of Controlled Trials and Scopus. Inclusion criteria will involve intervention studies for head and neck lymphoedema management, English language, and adult human participants following head and neck cancer. The software Covidence will be used to export, manage, and screen results. Risk of bias and quality will be assessed in included studies using the Cochrane Handbook of Systematic Reviews of Intervention risk of bias and GRADE tools. A meta-analysis will be performed if there are sufficient homogenous studies. Alternatively, a narrative synthesis will be completed on study findings.
Ethics and dissemination
No ethical approval is required as the study does not involve patient and public involvement. The findings of the review will be disseminated in conferences and submitted for approval to be published in a peer-reviewed journal.
Prospero registration number
CRD42022378417. (S1 Appendix).
... The 22 articles included were published from 2013 to 2022 and were conducted in the United States (n = 4), 21,34,37,38 the United Kingdom (n = 3), 14,25,39 Ireland (n = 3), 24,27,29 China (n = 2), 22,33 Germany (n = 2), 15,26 Australia (n = 2), 1,23 Switzerland (n = 1), 36 Canada (n = 1), 31 Hong Kong (n = 1), 28 South Korea (n = 1), 30 Taiwan (n = 1), 32 and Iran (n = 1). 35 There were 16 studies that were qualitative in nature, 5 quantitative studies with cross-sectional surveys, and 1 study with a sequential exploratory mixed-methods design. ...
... 35 There were 16 studies that were qualitative in nature, 5 quantitative studies with cross-sectional surveys, and 1 study with a sequential exploratory mixed-methods design. 39 Eight studies included mixed cancer types, 14,15,25,28,31,[37][38][39] whereas the remaining studies focused on a single cancer type, including breast cancer (n = 5), 21,22,30,33,36 colorectal cancer (n = 4), 23,26,32,35 head and neck cancer (n = 4), 24,27,29,34 and endometrial cancer (n = 1). 1 The sample sizes of the included studies ranged from 10 to 2337. The mean age of cancer survivors ranged from 50.34 to 73.8 years. ...
... Twelve studies reported that survivors practiced emotional management to respond to various psychological problems, including anxiety, depression, fear of recurrence, loss, and loneliness. 14,21,22,[25][26][27][30][31][32][33]35,38 The vast majority relied on themselves to regulate their emotions using specific strategies, including engagement in recreational activities and entertainment, 35 cognitive coping (eg, letting go, acceptance, and focusing on the present moment), 22,24,28 distraction (eg, focusing on work), 29 and behavioral self-monitoring. 24 ...
Background
Despite numerous systematic reviews on self-management interventions for cancer survivors, little is known about survivors’ daily self-management practices and the influencing factors.
Objective
To identify self-management behaviors and related factors among cancer survivors.
Methods
Six databases were searched for primary quantitative, qualitative, and mixed-methods studies on self-management behaviors in cancer survivors that were published in English-language, peer-reviewed journals between 2012 and July 2022. The methodological quality of the included studies was evaluated using the Mixed Methods Appraisal Tool. The data extracted using a predetermined form were analyzed using qualitative content analysis.
Results
A total of 22 articles were included in the review; the majority were qualitative research, and half had moderate to high quality of evidence. Nine domains of self-management behaviors were identified, namely, physical activity/exercise, diet, emotional management, complementary and alternative medicine, symptom management, religiosity/spirituality, attending regular follow-ups, adjustment of other lifestyles, and medication management. Four categories of factors were associated with self-management behaviors in cancer survivors: (1) personal factors (demographic and psychological), (2) health status, (3) family factors, and (4) healthcare system. However, the relationships between self-management behaviors and these factors were mainly identified from qualitative studies or addressed in single studies.
Conclusions
Self-management behaviors in cancer survivors are multifaceted. There is an urgent need for quantitative exploration of factors associated with self-management in cancer survivors.
Implications for practice
This review provides nurses with a comprehensive basis for designing self-management support interventions for cancer survivors.
... Head and neck cancer (HNC) is the 6th most common cancer globally, with more than 930,000 new cases diagnosed annually [1,2]. Significant developments are continuing to be made in detecting, diagnosing, and treating HNC, with ever increasing numbers of individuals living longer with the associated cancer and treatment-related consequences [3,4]. ...
... This is possibly due to the lack of clarity surrounding conceptualising of self-management within cancer care [40]. Nonetheless, recently, Dunne et al. [4] noted that there was evidence to suggest that self-management may be optimised within the context of an individualised approach. This individualised approach is supported by other researchers, who comment that an individual response to cancer-related treatment effects is necessary to aid adjustments to daily life following treatment for HNC [41,42]. ...
... There was evidence to suggest that issues surrounding adherence were associated with participants experiencing difficulties with compression devices, reporting they were too complex and caused discomfort [14,20]. This association between poor adherence and compression is resultant from the unique head and neck anatomy and discomfort experienced by HNC patients [4]. Other factors contributing to poor adherence within this current systematic review are patient burden due to time-related barriers and frequency of contact for dose delivery of the intervention [12,14]. ...
Purpose
Patients living with head and neck lymphoedema (HNL) after completion of head and neck cancer (HNC) often can experience long-term functional challenges and overall poorer health-related quality of life (HRQOL). This systematic review aims to explore components of effective HNL interventions through identification and synthesising literature on existing HNL management interventions.
Methods
Five electronic databases (MEDLINE via Ovid and PubMed, CINAHL, CENTRAL, and Scopus) were systematically searched using Medical Subject Headings and free text, as well as citation tracking and Google Scholar for grey literature.
Results
A total of 1910 studies were screened, with 12 studies meeting the inclusion criteria. Findings indicated vast heterogeneity within HNL interventions. Patients’ adherence to intervention strategies was reported as low and partially adhered to, particularly at home. This impacted on function domains and overall HRQOL during the post-treatment HNC phase, as well as further increasing the demands placed on healthcare professionals.
Conclusions
Synthesis of the research findings highlighted a need to provide and educate patients with individualised HNL self-management intervention strategies. Promoting adherence was reported as being essential, with self-efficacy and behaviour change techniques being emphasised as a critical element to enhance motivation and therefore effective intervention delivery. Further work is important to address barriers to adherence and promote both motivation and behaviour change, to develop individualised self-management interventions for this cancer population.
Implications for Cancer Survivors
The findings from this systematic review will provide guidance in the development and delivery of individualised self-management HNL interventions for patients who have completed HNC treatment.
... Second, standardized self-management for cancer survivors should be enhanced, which should be incorporated into guidelines on routine survivorship care and survival care plans. Patient self-management capabilities should be assessed in detail and should be incorporated in stages step by step; these capabilities can be capitalized on in different models of care and care scenarios (52). The standardization of self-management should be improved through patient education, standardized training, and the development of mobile applications (53). ...
Cancer is currently a major public health issue faced by countries around the world. With the progress of medical science and technology, the survival rate of cancer patients has increased significantly and the survival time has been effectively prolonged. How to provide quality and efficient care for the increasingly large group of cancer survivors with limited medical resources will be a key concern in the field of global public health in the future. Compared to developed countries, China's theoretical research and practical experience in care for cancer survivors are relatively limited and cannot meet the multi-faceted and diverse care needs of cancer patients. Based on the existing models of care worldwide, the current work reviews care for cancer survivors in China, it proposes considerations and suggestions for the creation of models of cancer care with Chinese characteristics in terms of optimizing top-level system design, enhancing institutional mechanisms, accelerating human resource development, and enhancing self-management and social support for patients.
... Allow patients to help determine their own priorities. The presence of allied healthcare professionals emphasizes the importance of addressing both the patient's psychological and physical needs, particularly the patient's fear of recurrence [7,[47][48][49][50][51][52]. ...
Although surgery, radiotherapy, chemotherapy, or combined treatment often elicits an initial satisfactory
response, relapses are frequently observed within two years. Current surveillance methods, including clinical
exams and imaging evaluations, have not unambiguously demonstrated a survival benefit, most probably due to
a lack of sensitivity in detecting very early recurrence. Current guidelines advise post-treatment surveillance of
head and neck cancer (HNC) patients should involve scheduled appointments with a variety of practitioners. The
benefits of prolonged routine follow-up on survival have not been proven. Increasing numbers of HNC survivors
raise the burden to provide efficient and effective care.
... The main reason could be that the relationship and interaction between neighbors are closer in rural Chinese patients, they usually have a relatively simple living environment, and many suggestions of daily eating-related modifications are also from the surroundings. Moreover, inpatients had higher modification behavior, which was different from another qualitative study 68 that showed that cancer survivors exhibit highly individualized approaches to self-management integration. The probable reason could be that inpatients often undergo chemotherapy, so the eating problems caused by side effects are obvious and severe, and patients tend to actively be motivated to do something to modify the type and amounts of food. ...
Side effects from chemotherapy may disturb healthy eating. There are many food taboos among Chinese patients with cancer treated with chemotherapy; they may be conservative in food intake and seek help from traditional Chinese medicine to adjust to healthy eating. Differences in eating cultures may lead Chinese patients with cancer to generate different knowledge, attitudes, and behaviors toward healthy eating. This systematic review explored the knowledge, attitudes, and behaviors toward healthy eating and summarized influencing factors among Chinese patients with cancer treated with chemotherapy. Two English and three Chinese databases were searched since 2007. The eligibility criteria were quantitative descriptive studies, participants who were adult Chinese patients with cancer who received chemotherapy, and primary outcomes that included knowledge, attitudes, or behaviors toward healthy eating. A total of 12 studies were identified. The 11-item tool from the Agency for Healthcare Research and Quality was used to assess quality. All studies were of moderate quality. Narrative qualitative analysis was considered to summarize the findings, and the results were reported by scores or percentages. Four studies measured knowledge, and the information about what to eat and how much to eat was contradictory and confused patients, with little known about Chinese food therapy. Ten studies involved attitudes, and patients were aware of the importance and willingness for eating guidance before, during, and after chemotherapy. Strategies to relieve vomiting and nausea, engage in healthy food choices, and seek food therapy were the main behaviors. The influencing factors were found only in behaviors, including demographic and psychological factors. Knowledge, attitudes, and behaviors toward healthy eating are not satisfactory and need to be improved. More high-quality studies should regard health behavior as a distal outcome and explore the influences of knowledge and attitudes on behaviors.
... Findings from a qualitative interview study (Bjorklund et al. 2008) reported HNC participants felt more in control and empowered when using health promotion and self-management activities to balance their physical, mental and emotional health. However, these strategies needed to be tailored to improve long term compliance and reduce the likelihood of feelings of abandonment (Dunne et al. 2019). Supported self-management can help reduce the burden on cancer services, by supporting individuals to take control of their health and lifestyles, whilst redirecting resources to those most in need (Davies and Batehup 2011). ...
Purpose
Head and neck cancer patients can face debilitating treatment related side-effects, resulting in requirement for support and negatively impacting on care outcomes. This study aimed to develop a digital recovery support package and assess its acceptability with head and neck cancer patients to support their information needs and assist with their self-management. It provided additional support through development of a WebXR platform ‘recovery’ package, which allowed patients to live a ‘virtual reality’ experience, entering and moving inside a ‘virtual room’, accessing targeted resources and specific learning materials related to their cancer.
Method
A qualitative intervention development study consisting of three phases. This study followed the COREQ checklist for qualitative research. Phase 1- Focus groups with seven head and neck cancer patients and six healthcare professionals. Phase 2- Development of ‘recovery’ package based on the focus group data which informed the content and design of the WebXR recovery platform. Phase 3- Technology acceptance study. Once developed, the platform's acceptability of the experience lived inside the virtual room was assessed via qualitative interviews with six different patient participants.
Results
Most participants felt comfortable using the virtual reality platform, finding it a realistic and useful support for identifying resources and signposting to relevant materials. Participants agreed the WebXR platform was a feasible tool for the head and neck cancer setting and helped reduce anxiety.
Conclusions
Head and neck cancer patients welcome specific targeted, information and advice to support their ability to self-manage their rehabilitation and thus focus their nursing care. The platform was implemented during the Covid-19 pandemic, demonstrating its versatility and accessibility in providing complementary support to head and neck cancer patients, to empower them to adjust to their ‘new’ normal as part of their ongoing cancer journeys.
... Patients may find PIFU empowering (Moore et al., 2021), as suggested by some interviewees. Self-management is valued and advocated by patients with endometrial cancer (Beaver et al., 2020;Kumarakulasingam et al., 2019) and has benefits in HNC (Dunne et al., 2019a), although it is hampered by the challenges patients face during follow-up (Dunne et al., 2019b). Interventions need to support patients to develop self-management (Dunne et al., 2019b) and health literacy skills (Clarke et al., 2021), perhaps using holistic needs assessments, common in UK HNC follow-up (Wells, Semple, & Lane, 2015). ...
... Self-management is valued and advocated by patients with endometrial cancer (Beaver et al., 2020;Kumarakulasingam et al., 2019) and has benefits in HNC (Dunne et al., 2019a), although it is hampered by the challenges patients face during follow-up (Dunne et al., 2019b). Interventions need to support patients to develop self-management (Dunne et al., 2019b) and health literacy skills (Clarke et al., 2021), perhaps using holistic needs assessments, common in UK HNC follow-up (Wells, Semple, & Lane, 2015). ...
Objective:
The objective of this work was to explore head and neck cancer (HNC) patients' and their family members' views on acceptability and feasibility of patient-initiated follow-up (PIFU), including concerns and anticipated benefits.
Methods:
Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n = 144) and/or qualitative interview (n = 30), three with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics.
Results:
Preference for follow-up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate health care resources and encourage self-management. Patients' main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental well-being needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support.
Conclusion:
PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental well-being, provides quick, reliable and direct clinician access and information on "red flag" symptoms, and ensures patients and their caregivers feel supported.
... Indeed, self-management journeys have been described as difficult (Dunne et al., 2019). Such journeys evolve across levels of patient engagement and development (Larsen et al., 2021;Saeidzadeh et al., 2021;Vinette & Bilodeau, 2021). ...
For many cancer survivors, post-treatment challenges are predominantly related to their personal and social lives. These challenges are part of an experiential learning process linked to a survivor’s identity, their desire to preserve independence, their social roles, and responsibilities along with a return to their normal lives. We used interpretive description to describe the experiential learning process of cancer survivors as they recover post-treatment. Data from five group discussions with 27 participants were combined with data from 9 in-depth individual interviews that examined post-treatment challenges. Through an iterative qualitative analysis, we uncovered 3 experiential learning pathways. Narrative vignettes are used to portray and highlight learning involved in accepting loss, asking for help, and rebuilding authentic social networks. Experiential learning shares recognizable features among individuals identified as milestones. These lead to a greater understanding of how cancer survivors acquire a new sense of self and recover their lives post-treatment.
... All participants highlighted the need for ongoing support at this stage to help with their transition home and coping with the life-long adjustment to having a TL. This finding is supported by other qualitative work (Dunne et al., 2019;Nund et al., 2014) which highlighted the need for structured, individualized support from professionals, including emotional and psychosocial support in addition to support with physical changes. Participants in Nund's (2014) study talked about ongoing support coming from their own support networks of family and friends; whilst also raising the need for more specialist clinical support in the long-term to help with their adjustment to life posttreatment. ...
Background
Total laryngectomy (TL) results in permanent functional changes requiring rapid development of complex new skills. A significant portion of this learning happens in the acute post-surgical stage. There is increasing interest in enhanced recovery after surgery (ERAS) protocols in TL; however implementation has been difficult. COVID-19 has placed significant pressures on acute services, requiring rapid service changes for TL patients.
Aims
This study aimed to understand the acute patient experience of having a TL both before and during COVID-19.
Methods & Procedures
Semi-structured interviews using a pre-designed topic guide were conducted with ten people who had undergone a TL within the last two years. Participants were recruited by their Speech & Language Therapists using purposive sampling. Braun & Clarke’s iterative approach to data collection and thematic analysis was used to generate key themes from the data.
Outcomes & Results
Thematic analysis identified four main themes: 1) pre-operative information giving “it was just words”; (2) decision-making influences: “I just wanted them to get it all out and get it over with”; (3) coping with adjustment to the new normal “this is part of me now”; and (4) the importance of relationship building "when you've had something like this, you need some care and understanding".
Conclusions & Implications
The need for an individualised approach to TL intervention which incorporates medical and psycho-social approaches from pre-treatment to acute discharge is vital. ERAS models should be reviewed to shift beyond the medical model alone. Rapid service changes due to COVID-19 did not contribute any major changes to the acute patient-reported experience.
