Fatigue After CriTical illness (FACT): Co-production of a self-management intervention to support people with fatigue after critical illness

Purpose: Fatigue is a common and debilitating problem in patients recovering from critical illness. To address a lack of evidence-based interventions for people with fatigue after critical illness, we co-produced a self-management intervention based on self-regulation theory. This article reports the development and initial user testing of the co-produced intervention. Methods: We conducted three workshops with people experiencing fatigue after critical illness, family members, and healthcare professionals to develop a first draft of the FACT intervention, designed in web and electronic document formats. User testing and interviews were conducted with four people with fatigue after critical illness. Modifications were made based on the findings. Results: Participants found FACT acceptable and easy to use, and the content provided useful strategies to manage fatigue. The final draft intervention includes four key topics: (1) about fatigue which discusses the common characteristics of fatigue after critical illness; (2) managing your energy with the 5 Ps (priorities, pacing, planning, permission, position); (3) strategies for everyday life (covering physical activity; home life; leisure and relationships; work, study, and finances; thoughts and feelings; sleep and eating); and (4) goal setting and making plans. All material is presented as written text, videos, and supplementary infographics. FACT includes calls with a facilitator but can also be used independently. Conclusions: FACT is a theory driven intervention co-produced by patient, carer and clinical stakeholders and is based on contemporary available evidence. Its development illustrates the benefits of stakeholder involvement to ensure interventions are informed by user needs. Further testing is needed to establish the feasibility and acceptability of FACT. Implications for clinical practice: The FACT intervention shows promise as a self-management tool for people with fatigue after critical illness. It has the potential to provide education and strategies to patients at the point of discharge and follow-up

'These Discussions Aren't Happening': Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals.

Background Inflammatory bowel disease [IBD] affects all aspects of life, yet little is known about the impact of the condition on intimacy and sexuality and if such concerns should be discussed with health care professionals. This hermeneutical phenomenological study aimed to explore the experiences of people living with inflammatory bowel disease and discussing their sexuality concerns with health care professionals. Methods Participants [n = 43] aged 17–64 years were recruited. Data were collected via in depth interviews and anonymous narrative accounts [Google Forms]. Thematic analysis was used to analyse the data. Results An overarching theme ‘These discussions aren’t happening’ with four main themes were generated. The main themes were: ‘I can’t image talking about sex’; ‘I am a person, not my IBD’; ‘We need to talk about sex’; and ‘Those who talked about sex, talked badly’. Participants described the lack of conversations with their health care professionals on sexual well-being issues, in spite of the importance they gave to the topic, and identified barriers to having such conversations. They made suggestions for future clinical practice that would better meet their needs. The few who had discussed sexual well-being issues with health care professionals reported negative experiences. Conclusions Patients’ needs and preferences, about addressing during clinical appointments concerns related to their sexual well-being, should be addressed routinely and competently by health care professionals. Understanding the implications of inflammatory bowel disease for intimate aspects of the lives of those living with the condition could improve the quality of the care provided

Grieving multiple losses: experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study

AIM: To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease. DESIGN: An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space. METHODS: Data were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms. RESULTS: Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged. CONCLUSIONS: A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief. IMPACT: First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study design

Systematic review: the impact of inflammatory bowel disease-related fatigue on health-related quality of life

Background: Fatigue is frequently reported in inflammatory bowel disease (IBD) and impacts on Health-Related Quality of Life (HRQoL). HRQoL has not been systematically reviewed in IBD fatigue. Aim: To investigate what impact IBD fatigue has on HRQoL in adults with IBD.Methods: Systematic searches (CINAHL, EMBASE, PsychInfo, Medline) were conducted 25.09.2018, restricted to ‘human’, ‘adult’, ‘primary research’ and ‘English language’. Search terms encompassed concepts of ‘Fatigue’, ‘IBD’ and ‘HRQoL’. A 5 year time limit (2013-2018) was set to include the most relevant publications. Publications were screened, data extracted, and quality appraised by two authors. A narrative synthesis was conducted.Results: Eleven studies were included, presenting data from 2823 participants. Fatigue experiences were significantly related to three HRQoL areas: symptom acceptance, psychosocial wellbeing, and physical activity. Patients reporting high fatigue levels had low symptom acceptance. Psychosocial factors were strongly associated with both, fatigue and HRQoL. Higher social support levels were associated with higher HRQoL. Physical activity was impaired by higher fatigue levels, lowering HRQoL, but it was also used as a means of reducing fatigue and improving HRQoL. Quality appraisal revealed methodological shortcomings in a number of studies. Notably use of multiple measures, comparison without statistical adjustment and fatigue and HRQoL assessment using the same tool

Interventions for fatigue in inflammatory bowel disease (Protocol)

This is the protocol for a review and there is no abstract. The objectives are as follows: The aim of this review is to assess the efficacy and safety of interventions for fatigue in IBD

Identification of research priorities for Inflammatory Bowel Disease nursing in Europe: a Nurses-European Crohn’s & Colitis Organisation Delphi survey

Background: Robust research evidence should inform clinical practice of inflammatory bowel disease (IBD) specialist nurses, but such research is currently very limited. With no current agreement on research priorities for IBD nursing, this survey aimed to establish topics to guide future IBD nursing research across Europe. Method: An online modified Delphi survey with nurse and allied health professional members of the Nurses European Crohn’s and Colitis Organisation (n=303) was conducted. In round one, participants proposed topics for research. In round two, research topics were rated on a 1-9 scale and subsequently synthesised to create composite research questions. In round, three participants selected their top five research questions, rating these on a 1-5 scale. Results: Eighty-eight, 90, and 58 non-medical professionals, predominantly nurses, responded to rounds one, two and three respectively, representing 13 European countries. In round one, 173 potential research topics were suggested. In rounds two and three, responders voted for and prioritised 125 and 44 questions respectively. Round three votes were weighted (rank of 1 = score of 5), reflecting rank order. The top five research priorities were: interventions to improve self-management of IBD; interventions for symptoms of frequency, urgency and incontinence; the role of the IBD nurse in improving patient outcomes and quality of life; interventions to improve IBD fatigue; and care pathways to optimise clinical outcomes and patient satisfaction. Conclusion: The prioritised list of topics gives clear direction for future IBD nursing research. Conducting this research has potential to improve clinical practice and patient-reported outcomes

Prevalence and experience of fatigue in survivors of critical illness: a mixed-methods systematic review

We conducted a mixed methods systematic review to investigate the prevalence, experience and management of fatigue in survivors of critical illness. We identified 76 studies investigating fatigue or vitality in adults discharged from an intensive care unit and split the data we extracted into three datasets: vitality scores from the Short Form Health Survey-36 (n = 54); other quantitative data (n = 19); and qualitative data (n = 9). We assessed methodological quality using critical appraisal skills programme tools. We adopted a segregated approach to mixed-methods synthesis. In a final step, we attributed combined results to one of four qualitative themes: prevalence and severity; contributing factors; impacts on quality of life; and assessment and management. Prevalence of fatigue ranged from 13.8 to 80.9%. Short Form Health Survey-36 vitality scores were commonly used as a marker of fatigue. Vitality scores reached a nadir approximately 1 month following ICU discharge (mean (SD) 56.44 (32.30); 95%CI 52.92–59.97). They improved over time, but seldom reached reference population scores. Associated biological, disease-related and psychological factors included age, poor pre-morbid status, sleep and psychological disturbance. Qualitative data highlight the profound negative impact of fatigue on survivors’ quality of life. Survivors seldom had any information provided on the potential impact of fatigue. No fatigue assessment tools specific to critical illness or evidence-based interventions were reported. Fatigue is highly prevalent in survivors of critical illness, and negatively impacts recovery. Further research on developing fatigue assessment tools specifically for critically ill patients and evaluating the impact of pharmacological and non-pharmacology interventions is needed