Learning to live well with chronic fatigue: the personal perspective

Wilson, Lynere; Whitehead, Lisa; Burrell, Beverley

doi:10.1111/j.1365-2648.2011.05666.x

Cited by 13 publications

(14 citation statements)

References 37 publications

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Section: Discussionmentioning

confidence: 98%

“…Furthermore, adapting at least one of their usual activities around HEF facilitated a sense of participation. Similarly, the wider literature also shows that people with long-term conditions often adjust daily activities to facilitate participation (26)(27)(28) . Support from family, friends and the public facilitated this journey to HEF adaptation and promoted participants' sense of acceptance and inclusion.…”

Section: Discussionmentioning

confidence: 98%

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The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer

Thomas

Sowerbutts

Burden

2019

J Human Nutrition Diet

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Background The number of people with head and neck cancer who are home enterally fed continues to grow each year. Insertion of a feeding tube is common place in these patients and is considered to have a detrimental effect on quality of life. The present study aimed to investigate the daily impact of home enteral feeding (HEF) from the perspective of people who have had a diagnosis of head and neck cancer. Methods The methodology aligned with interpretative phenomenology analysis. People who were home enterally fed, with head and neck cancer, and aged ≥18 years were recruited. Data were collected using semi‐structured interviews and analysis focused on what the daily impact of HEF meant for participants. Results Data saturation was achieved after interviewing 15 participants. Five cluster themes were identified. ‘Deviation from the norm’ encompassed change and loss of normality. ‘Regaining control leading to empowerment’ encompassed participant empowerment through development of new skills and adjusting the feeding regime. ‘Creating a new normal’ involved making adjustments to facilitate inclusion and participation. ‘External modifiers of the HEF experience’ and ‘internal modifiers of the HEF experience’ encompassed the identification of external and internal HEF factors that influenced HEF adaptation. Conclusions HEF was found to influence peoples’ daily lives substantially and required extensive adjustments for individuals to find a new normal. A greater level of interpretation was provided beyond the current evidence‐base for this group. Policymakers and clinicians should recognise the wider impact of HEF and ensure that this awareness is embedded in clinical practice.

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Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 98%

The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer

Thomas

Sowerbutts

Burden

2019

J Human Nutrition Diet

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“…as ‘a process of convoluted passage during which people redefine their sense of self and redevelop self‐agency in response to disruptive life events’ (, p.321) and has been explored in relation to a range of conditions (Kralik , Mengshoel , Baumgartner & David , Wilson et al . , Halding & Heggdal , Adili et al . ).…”

Section: Discussionmentioning

confidence: 99%

Starting where I am: a grounded theory exploration of mindfulness as a facilitator of transition in living with a long‐term condition

Long

Briggs

Long

et al. 2016

Journal of Advanced Nursing

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“…The majority of MS patients consider fatigue as one of their most severe symptoms, and chronic fatigue affects many daily activities and thus lowers their physical, mental, and social quality of life (Brassington and Marsh, 1998;Wilcon et al, 2011;Cehelyk et al, 2019). Previous research shows that fatigue may also be associated with depressive symptomatology and inactivity, which consequently leads to other negative psychological correlates (Mileic et al, 2011).…”

Section: Introductionmentioning

confidence: 99%

Fatigue and Suicidal Ideation in People With Multiple Sclerosis: The Role of Social Support

et al. 2020

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Fatigue and poor sleep quality are among the most common patient-reported problems associated with multiple sclerosis (MS). Social support, on the other hand, is often found to be positively associated with quality of life in patients with neurological diseases. Studies also show that suicidal ideation (SI) levels in MS are elevated compared to the general population. Thus, the aim of this study is to assess the associations between fatigue, social support, and SI in patients with MS. Out of 184 MS patients asked to participate in this cross-sectional study, 156 agreed (RR 69.8%; 75% female; mean age: 39.95 ± 9.97 years). Patients filled-in the Multidimensional Fatigue Inventory-20, the Pittsburgh Sleep Quality Index, the Multidimensional Scale of Perceived Social Support and the subscale of the General Health Questionnaire-28 focused on assessing SI. Models were controlled for age, gender, disease duration, functional disability, and sleep quality. Data were analyzed using multiple linear regressions. SI was positively associated with lower sleep quality and four types of fatigue: general, mental, reduced activity, and reduced motivation (p < 0.05). Physical fatigue was not significantly associated with SI. Social support was negatively associated with SI in all models. The final models under study explained from 24.3 to 29.7% of the total variance in SI. SI yielded associations with both sleep quality and fatigue, with the exception of physical fatigue. Information provided by physicians on sleep management, and a psychosocial intervention focused on people who provide support for patients with MS (family, friends, and significant others) may reduce levels of SI.

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Learning to live well with chronic fatigue: the personal perspective

Cited by 13 publications

References 37 publications

The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer

The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer

Starting where I am: a grounded theory exploration of mindfulness as a facilitator of transition in living with a long‐term condition

Fatigue and Suicidal Ideation in People With Multiple Sclerosis: The Role of Social Support

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