Identified needs to enhance life for people with spinal cord injury: a part of the Swedish Needs Assessment Project

Johanna Wangdell; Emelie Axwalter; Gunilla Åhrén; Åsa Lundgren Nilsson; Katharina S Sunnerhagen; Jeanette Melin

doi:10.1080/09638288.2024.2406982

Identified needs to enhance life for people with spinal cord injury: a part of the Swedish Needs Assessment Project

Disabil Rehabil. 2024 Oct 2:1-12. doi: 10.1080/09638288.2024.2406982. Online ahead of print.

Authors

Johanna Wangdell^{1

2

3}, Emelie Axwalter¹, Gunilla Åhrén¹, Åsa Lundgren Nilsson^{1

4

5}, Katharina S Sunnerhagen^{1

4

5}, Jeanette Melin^{1

6

7}

Affiliations

¹ Gothenburg Competence Centre for Spinal Cord Injury, University of Gothenburg and Sahlgrenska University Hospital, Gothenburg, Sweden.
² Department of Hand Surgery, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
³ Centre for Advanced Reconstruction of Extremities, Sahlgrenska University Hospital/Mölndal, Gothenburg, Sweden.
⁴ Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
⁵ Department of Neurocare, Sahlgrenska University Hospital, Gothenburg, Sweden.
⁶ Department of Measurement Science and Technology, Division Safety and Transport, RISE Research Institutes of Sweden, Gothenburg, Sweden.
⁷ Department of Leadership and Demand & Control, Swedish Defence University, Karlstad, Sweden.

PMID: 39354857
DOI: 10.1080/09638288.2024.2406982

Abstract

Purpose: To identify factors that contribute to the enhanced life of people with spinal cord injury (SCI) in Sweden.

Materials and methods: This cross-sectional study combined workshops (n = 38) and survey data (n = 243) from people living with SCI and their relatives, health professionals, and personal care assistants working with people living with SCI. The data were first categorized using Bronfenbrenner's bioecological model, followed by a conventional content analysis.

Results: The factors that contribute to an enhanced life for people living with SCI are similar to those of the general population, including relationships, leisure activities, and occupation within the mesosystem. However, the unique components of the exosystem and macrosystem are specifically associated with people living with SCI. The exosystem, particularly in healthcare, plays a major role for medical reasons but also tends to obtrude and minimize the mesosystem. The macrosystem is essential, as it sets the rules that govern the actors in the other layers, creating prerequisites for meeting the needs of the mesosystem and exosystem.

Conclusions: The needs that contribute to an enhanced life are multifaceted and individualized. Therefore, these systems must be flexible throughout the lifespan of individuals with SCI.

Keywords: Bronfenbrenner’s bioecological model; Quality of life; lived experience; pre-requisites; spinal cord injury.

Plain language summary

This paper reports needs that contribute to an enhanced life for people living with spinal cord injury in Sweden.The factors that contribute to an enhanced life are multifaceted and individual, and these must be considered throughout the entire life span, including getting help if secondary complications arise, aging and other life events.Individuals’ willingness to take ownership is strong but requires support from the surrounding systems that can accommodate individual’s unique needs.The exosystem (ea health care) plays a major role but risk to obtrude and minimize the mesosystem (individual’s immediate relations).Positive attitudes toward oneself, from family members and loved ones, from health care professionals and authorities are crucial for an enhanced life.