Walking a tightrope - as a next-of-kin to an adolescent or young adult with cancer facing eating difficulties.

PURPOSE: Eating difficulties cause reduced food intake and poor quality of life among adolescents and young adults (AYAs) with cancer. Therefore, next-of-kin eating support is crucial. The purpose of this study was to explore the lived experiences of being close to AYAs with cancer in the context of eating when they are at home between high-emetogenic chemotherapy (HEC) sessions. METHOD: In-depth interviews were conducted with 12 next-of-kin to AYAs (15-29 years old) with oncological or haematological diseases, treated with HEC. Van Manen's hermeneutic-phenomenological approach guided the design. RESULTS: The essential meaning of the next-of-kin experiences is reflected in the overarching theme "Utilizing meals as an action-opportunity" consisting of two subthemes: 'Being on constant alert' and "Walking a tightrope to maintain usual everyday life." CONCLUSIONS: Findings revealed that utilizing meals as an action-opportunity towards AYAs' food intake involved existential feelings including fear of losing their loved ones. Next-of-kin experienced that providing support through and with food was their only avenue of action. However, this sparked feelings of frustration and powerlessness.

Struggling to Eat to Survive Cancer-Lived Experiences of Eating Among Adolescents and Young Adults Undergoing High-Emetogenic Chemotherapy.

Purpose: The purpose of this study was to provide in-depth understanding of adolescents' and young adults' (AYAs') lived experiences of eating when they are at home between high-emetogenic chemotherapy sessions. Methods: The study was guided by van Manen's hermeneutic-phenomenological methodology. Eligible AYAs were 15-29 years old, diagnosed with either oncological or hematological cancer, treated with high-emetogenic chemotherapy, and Danish speaking. AYAs were recruited from three university hospital departments. Data were collected using semi-structured in-depth interviews. Results: Thirteen AYAs, aged 17-29 years, participated in the interviews via telephone or face-to-face in their homes. The essential meaning of the phenomenon of eating can be characterized by the overarching theme "Struggling to eat to survive" and unfolded through the following three themes: "Cooperating with a deceiving body", "Capturing moments of eating opportunities", and "Being loved and cared for at home". Conclusions: Struggling to eat was essential for survival and a fundamental existential challenge that required reflection and consciousness. AYAs experienced their deceiving bodies as a major concern, which challenged their ability to eat and forced them to develop strategies to capture moments of eating opportunities. AYAs kept hold of doing "something" themselves to maintain the slightest control of their own lives and thereby assist clinical outcomes and cure. However, AYAs had to struggle with food and start viewing food as a friend, not an enemy.

Love, joy and necessity - A phenomenological study of food and meals in adolescents and young adults with cancer receiving high-emetogenic chemotherapy.

PURPOSE: This study explored how the phenomenon of meals appeared in the interrelationship between adolescents and young adults (AYAs) receiving high-emetogenic chemotherapy, their next of kin and health professionals in the clinical setting. METHOD: Data were collected by 140 h of participant observation conducted to gain insights into the nature of how meals appeared in the interrelationship between 12 AYAs (age 15-29 years), their next-of-kin and health professionals. The AYAs were patients with oncological and haematological diseases recruited from three university hospital departments. Data analysis was guided by van Manen's hermeneutic-phenomenological approach. RESULTS: The essential meaning of the phenomenon may be characterized by the overarching theme; 'Seeking the joy of meals in the shadow of treatment' and the following three themes: 'Meals as a necessary evil' (AYAs); 'Meals as a matter of love' (next-of-kin); and 'Meals in the shadow of medical treatment' (health professionals). CONCLUSIONS: Meals is a multi-facetted and complex phenomenon that has different meanings to AYAs, next-of-kin and health professionals. To the AYAs, meals emerged as a necessary evil in connection with which urges to eat occurred as glimpses of desire. Prominent feelings of powerlessness and food as love were highlighted by the next-of-kin, whereas food and meals appeared secondary to treatment for health professionals, reflecting the traditional biomedical paradigm. The findings revealed that adopting a holistic approach to AYAs concerning meals can have the potential to increase their food intake.

Behavioural modes of adherence to inspiratory muscle training in people with chronic obstructive pulmonary disease: a grounded theory study.

PURPOSE: Our aim was to develop a theoretical account of the behavioural pattern of adherence to home-based inspiratory muscle training (IMT) in people with chronic obstructive pulmonary disease (COPD), performed as two daily sessions of 30 breaths with mechanical threshold loading. METHODS: This was a qualitative study based on the classic grounded theory method. We conducted interviews with people living with COPD recruited after completion of 6 weeks of outpatient pulmonary rehabilitation program in 2015. Concurrently, we generated data and performed analyses by means of constant comparative analysis and theoretical sampling that focused on the behavioural characteristics of adherence to IMT. RESULTS: We achieved theoretical saturation of substantive codes with 33 interviews, nine of which were with men. The participants' mean age and forced expired volume in the first second were 65 (SD 8) years and 59.1 (SD 13.9) percent of predicted, respectively. Seventeen participated in face-to-face interviews, and 16 participated in telephone interviews. The core category "Preserving Integrity" emerged as representative of the primary pattern of behaviour related to the inspiratory muscle-training regimen. Through this pattern, the participants resolved the main concern of losing integrity. Preserving Integrity involved three behavioural modes of adherence to home-based IMT: evading, misgiving, and involving modes. CONCLUSIONS: The participants' behavioural modes regarding adherence revealed patterns of both intended and unintended nonadherence. In particular, support offered by healthcare professionals should target people with unintended nonadherence and scepticism about the effects of IMT to maximise the possibility of adherence. Implications for rehabilitation When implementing inspiratory muscle training, healthcare professionals should be prepared to spend considerable time providing attention and support to participants who feel challenged during the execution of inspiratory muscle training. Support offered by healthcare professionals should target people with scepticism about the effects of inspiratory muscle training to maximise the possibility of adherence. Intended adherence to inspiratory muscle training appeared to be firmly rooted, which means that healthcare professionals can pay less attention to patients with strong intentions to ensure adherence.

Is there an effect of dietary intake on MS-related fatigue? - A systematic literature review.

BACKGROUND: Fatigue is considered the most common symptom of persons with multiple sclerosis MS (pwMS), occurring in up to 90% of the patients at some point with two-thirds of pwMS experience fatigue as their most disturbing symptom. Pharmacological treatment options for MS-related fatigue show only limited and contradicting results. Consequently, many pwMS search for alternative options to control the symptom. A considerable interest in dietary interventions as a means of MS symptom management has advanced in the MS community. Yet, the few empirical studies focussing on the effect of holistic dietary intake on fatigue have not been systematically examined. The aim of this review was to systematically review the effect of holistic dietary intake and the subjective perception of fatigue in adult pwMS. METHODS: Embase, Medline, Web of Science, CINAHL Complete, SPORTDiscus, PsycInfo, and Rehabilitation and Sports Medicine (Ebsco Host) databases were systematically searched to locate relevant literature. Intervention trials studying the effect of a holistic dietary regimen on the subjective perception of fatigue in a sample of adult pwMS were considered for inclusion. Risk of bias was assessed using a modified Downs and Black checklist. RESULTS: A total of four studies met the inclusion criteria: one single arm intervention pilot trial, one randomised controlled pilot trial, one double-blinded randomised trial, and one assessor-blinded randomised controlled trial. Interventions were low fat diets, a low fat, starchy plant food diet, and modified paleo diets and ranged from three to 12 months duration. Two studies supplying an adequate amount of folate and magnesium with the intervention diet reported relevant improvements in fatigue scores. CONCLUSION: Dietary intake holds the potential to lower MS-related fatigue, but solid conclusions are not possible based on the existing evidence. Sparse evidence points towards an effect of adequate magnesium and folate intake and a trend for decreased fatigue.

The intention to exercise and the execution of exercise among persons with multiple sclerosis--a qualitative metasynthesis.

PURPOSE: This review was designed as a qualitative metasynthesis aiming to identify factors influencing the intention to exercise and the execution of exercise among persons with multiple sclerosis (PwMS). METHOD: Based on principles laid out by Sandelowski and Barroso, this qualitative metasynthesis started with a systematic literature search for studies of PwMS's experiences relating to exercise in the following databases: CINAHL, Rehabilitation and Sports Medicine Source, PubMed, Web of Science and Psychology & Behavioral Science. The metasynthesis procedure also included critical appraisal using the Consolidated Criteria for Reporting Qualitative Research checklist, and integrating synthesis of the articles' findings. RESULTS: The metasynthesis included nine articles. Factors identified as influencing intention to exercise and the execution of exercise included social support, professional support and outcome expectations. Strong relationships between these three themes were detected for the intention to exercise, the execution of exercise or both among PwMS. CONCLUSIONS: The present metasynthesis offers a comprehensive understanding of factors influencing the intention to exercise and the execution of exercise among PwMS. Our findings reveal that health professionals influence the part of the process where PwMS enter the exercise setting, as well as the PwMS's intention to exercise. IMPLICATIONS FOR REHABILITATION: Social support, professional support and outcome expectations are potential facilitators and barriers for the intention to exercise and the execution of exercise among PwMS. Health professionals specializing in MS rehabilitation can influence the intention and the execution of physical exercise among PwMS when there exists a personal and supportive patient-professional relationship. Outcome expectations may impact the motivational and volitional phases of physical exercise.