Experiences of facilitators and barriers for fulfilment of human needs when living with restless legs syndrome: a qualitative study

ABSTRACT

Purpose

Restless Legs Syndrome (RLS) is a widespread condition that affects sleep leading to daytime sleepiness, depression, and reduced quality of life. This study aims to determine and describe how patients with RLS experience their everyday life, with a focus on facilitators and barriers related to Maslow’s hierarchical theory of human needs.

Method

Semi-structured interviews were analysed with qualitative content analysis resulting in facilitators and barriers affecting the fulfilment of the five human needs.

Results

Addressing RLS symptoms through medications and a quiet sleep environment fulfils psychological needs. Control over RLS symptoms, engagement in activities, trust in treatments, and social support meet safety and security needs. Social inclusion, close relationships, and meaningful interactions fulfil a sense of belongingness and love needs despite RLS. Competence in managing RLS, effective self-care strategies, confident communication, and trust-building support esteem needs. Finally, comprehensive understanding through person-centred interventions and coping fulfils the self-actualization needs in managing RLS.

Conclusion

Holistic and person-centred interventions, including facilitators for the fulfilment of physiological, psychological, and social needs could help healthcare professionals to provide holistic care.

KEYWORDS:

• Human needs
• patient-centred
• qualitative content analysis
• restless legs syndrome
• Willis Ekbom disease
• Wittmaack Ekbom syndrome

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by the Forskningsrådet i Sydöstra Sverige [FORSS-969214]; Familjen Kampradsstiftelse [20223144].

Notes on contributors

Elzana Odzakovic

Elzana Odzakovic, RN, PhD, is an assistant professor in the Department of Nursing, School of Health and Welfare, Jönköping University, Sweden. Elzana is a district nurse and has a background in the neurological care at hospital. Her main research interests are concerned people living with chronic illness such as dementia and RLS, and their everyday life.

Monika Allgurin

Monika Allgurin, PhD is an associate professor in Welfare and Social Sciences, School of Health and Welfare, Jönköping University, Sweden. Her research focuses on the intersectional approaches to processes and practices of inequality (re)production within the context of the welfare state. In particular, she is interested in the agency-structure relationships within diverse contexts as well as the creation and use of various spaces at the individual, groups, organizational, and societal levels.

Lise-Lotte Jonasson

Lise-Lotte Jonasson, RN, PhD is an associate professor in the Department of Nursing, School of Health and Welfare, Jönköping University, Sweden. Her research focuses in health care, care of older persons, and leadership in home health care.

Sandra Öberg

Sandra Öberg, RN, PhD is an assistant professor in the Department of Nursing, School of Health and Welfare, Jönköping University, Sweden. Sandra is a specialist nurse in oncology. Her main research interest is insomnia, sleep health in older persons, and e-health interventions to treat insomnia in persons with cardiovascular disease.

Bengt Fridlund

Bengt Fridlund, RN is an emeritus professor in Centre for Interprofessional Collaboration within Emergency Care (CICE), Linnaeus University, Växjö, Sweden. His research focuses on acute and clinic conditions with a focus on the individual, caregivers and staff, theoretically anchored in the concepts of well-being, coping, social support and quality of life.

Martin Ulander

Martin Ulander, MD, PhD is senior physician, specialist in clinical neurophysiology at the Neurophysiological Clinic, Linköping University Hospital and Department of Biomedical and Clinical Sciences, Linköping University, Sweden. His research focuses on insomnia, CPAP treatment of obstructive sleep apnea and RLS.

Jonas Lind

Jonas Lind, MD, PhD is an associate professor at Department of Biomedical and Clinical Sciences, Division of Neurobiology, Linköping University, Sweden and a senior physician at Section of Neurology, Department of Internal Medicine, County Hospital Ryhov, Jönköping, Sweden. His research focuses on multiple sclerosis, brain tumors and RLS both from a patient and caregiver perspective.

Anders Broström

Anders Broström, RN is a professor at the Department of Nursing, School of Health and Welfare, Jönköping University, Sweden and holds positions at the Neurophysiological Clinic, Linköping University Hospital, Sweden. He also acts as guest professor at the Department of Health and Caring Sciences, Western Norway University of Applied Sciences, Bergen, Vestlandet, Norway. Anders is the project leader for the research project JU SLEEP WELL which focuses on RLS in everyday life. His research focuses also on nocturnal breathing disorders, such as obstructive sleep apnea, in individuals suffering from high blood pressure and heart failure.