Table 2.

Summary of synthesized mixed-methods and qualitative articles including study characteristics and key findings

Qualitative/Mixed-Methods Studies
Author/Date		Study Design	Sample	How was Fatigue Measured?	Biopsychosocial Model Domain(s)			Key Findings	Level and Quality
Author/Date		Study Design	Sample	How was Fatigue Measured?	Biological	Psychological	Social	Key Findings	Level and Quality
1	Ekman et al. (2002)	Descriptive Mixed-Methods	N= 158 Mean age: 81 Female: 41.8 % NYHA III/IV: 98%	Modified Fatigue Interview Schedule Qualitative Interview	√	√	√	• Categories participants identified as descriptive of their fatigue experience included: feebleness, listlessness, desire for rest, do not know, dyspnea, pain ◦ Most commonly reported were feebleness, listlessness, and desire for rest • Participant identified potential causes of fatigue included: illness, age, do not know, listlessness, strained, drugs, loneliness, pain, bad condition ◦ Most commonly reported were illness, age, do not know, and dyspnea • Men more often described their fatigue as “discomfort” than women • Categories participants identified that they would like to do if they had the strength included: everything, outdoor activities, do not know, hobbies, travelling, socialize, and nothing ◦ Most commonly reported activities were everything, outdoor activities, and do not know ◦ Significantly more men expressed uncertainty about what they would like to do if they had more strength than women • Participants described things that they do to try to relieve their fatigue which included: sleep and rest (most common), reading, watching TV, and other “distracting” activities • There was no significant difference in fatigue rating on the Fatigue Interview Schedule between men and women • Women expressed feelings of happiness but loneliness • Men expressed feelings of happiness and restlessness • Very few participants endorsed their mood as “bad”	III/B
2	Falk et al. (2007)	Qualitative Descriptive	N= 15 patients Female: 47% Mean age (patient): 76 NYHA II/III: not reported	Semi-structured Interview of participants and chat room conversations amongst anonymous patients (not the same sample as the interviews)		√	√	Fatigue is described as a circular process: • Fatigue experience → fatigue consequences → fatigue experience • This means that the fatigue experience leads to consequences of fatigue which then further influence the experience of fatigue Fatigue Experience • Lacking strength related to physical exertion and often related to other symptoms of heart failure such as shortness of breath, limb weakness, chest pain, and dizziness • Sudden, uncontrollable sleepiness • Overwhelming, whole body lack of energy • Leads to emotions such as sadness, anger, irritation, demoralization, intellectual deficiency, and embarrassment • Difficulty with short-term memory, learning new information, concentration, and lack of intellectual energy and creativity Sacrificing • Refraining from daily chores and exercise to prevent/mitigate fatigue • Denying oneself activities that they enjoy out of fear of failing to complete a valued task. Fear of disappointment. • Isolating themselves from others and feelings of a decreasing social life due to their fatigue. Restoring • Involuntary attentive activities: ◦ Activities without a specific purpose or the require conscious effort (e.g. Observing nature, mental experiences of happiness, curiosity, and satisfaction, fishing, gardening, daydreaming) • Socially interactive activities: ◦ Meeting with other people served as a distraction ◦ Social events were described as so valuable that they would be willing to suffer the consequences to go • Mental absorption activities: ◦ Helped participants forget about fatigue and improved feelings of loneliness and isolation. • Those that found new hobbies concordant with their abilities reported improved fatigue symptom experiences compared to those that did not and were primarily inactive	III/A
3	Hagglund et al. (2008)	Qualitative Descriptive	N=10 Mean age: 83 Female: 100% NYHA III/IV: 100%	Open-ended interview		√	√	2 themes and 5 subthemes emerged: • Living with the loss of physical energy ◦ Experiencing a substantial presence of feebleness and unfamiliar bodily sensations ◦ Experiencing unpredictable variations in physical ability ◦ Needing help from others in daily life • Striving for independence while being aware of deteriorating health ◦ Acknowledging one’s remaining abilities ◦ Being forced to adjust and struggle for independence	III/A
4	Jones et al. (2012)	Qualitative Descriptive	N=26 Median age: 61 Female: 30.8% NYHA III/IV: 57.6%	Semi-Structured Interview		√	√	Two themes emerged: • Symptom experience ◦ Knowing the symptom: recognizing the warning signs and anticipating the symptom, not necessarily related to activities but a general “feeling”, understanding the consequences of not heeding warning signs ◦ Physical experience of the symptom: physical burden of the symptom, the need to listen to their body, energy being “sapped”, mind and body disconnect, sleep making no difference, and ability to manage fatigue as part of the physical experience ◦ Time management and planning necessary to adapt to the symptom: knowing how to optimize their reality, protecting their time as a way of protecting their energy, and planning as a coping strategy to prevent “overdoing” • Meaning ◦ Existential meaning is the sense of vulnerability and mortality the patient feels as a result of experiencing fatigue ◦ Contextual meaning involves the way the patient’s perceived the symptom as influencing their daily life, and understanding that their world is made smaller by the fatigue experience	III/A
5	Walthall et al. (2019)	Qualitative Descriptive	N= 23 Mean age: 72.5 (9.5) Female: 43.5% NYHA III/IV: 100%	Semi-Structured Interview		√	√	Three themes emerged: • Fatigue as a physical barrier: ◦ Physical debilitation: fatigue affected participants ability to perform activities of daily living or other physical activities; participants described reduction in physical strength that they did not attribute to age ◦ Low energy levels: energy levels are much lower than they ever experienced; low energy is described as exhaustion rather than just not wanting to do something ◦ Sleepiness: participants reported having difficulty sleeping and finding no fatigue relief from sleep or rest; difficulty fighting falling asleep during the day • Psychological response to fatigue: ◦ Variations in mood: negative feelings about the impact of fatigue on their lives such as frustration, depression, helplessness, and lack of motivation; some described positive thinking strategies to try to cope with their fatigue ◦ Social Consequences: feelings of isolation as a consequence of fatigue; shrinking of social circles due to difficulty navigating life outside the home ◦ Worries for the future: panic over fatigue and other symptoms and what they mean for the future • Fatigue as a part of daily life: ◦ Learning how to live with fatigue: adaptation of daily life in response to fatigue ◦ Striving for resilience every day: not letting fatigue beat you; acceptance of their condition; attempts to minimize negative feelings regardless of their fatigue	III/A
6	Whitehead, L. (2017)	Qualitative Descriptive Secondary Analysis of Data	N= 22 patients 40 family members (62 total) Mean age (patient): 70 NYHA II/III (patient): 100%	Semi-structured Interview		√	√	Three themes emerged: • The unexpected severity of fatigue ◦ Family did not anticipate fatigue to be so severe ◦ Long periods of daytime sleeping ◦ Concern that fatigue was a proxy for underlying issues/worsening disease ◦ Concern that patient has died, vigilance and checking on the patient while sleeping • The impact of fatigue on everyday life ◦ Slowing down activity ◦ Need to scale back expectations of the patient ◦ Differences in sex: men reported impact of fatigue relating to being able to do less around the house, while women reported the impact as cognitive, emotional, and social ◦ Recognition of why the impact of fatigue was so severe ◦ Understanding the need to take over new roles in the house because of the patient’s fatigue • The invisibility of fatigue ◦ Described as one of the most difficult things to deal with relating to fatigue ◦ Family members who did not live the house more often described not feeling as supportive or understanding of the patient’s symptoms which lead to family tensions ◦ Other family members who understood the symptom and its impact felt hurt by other family members who did not understand and were not a supportive	III/A