Abstract
Background: An individual with SB needs to deal with long standing illnesses and is often viewed as having a disability that needs to be compensated for. This medical condition is an example of malfunction of the body, though congenital, and could be seen as an outside-perspective to the individual human being. It is important that the required medical treatment is offered to an individual with SB, but such medical treatment alone would not encompass the full health spectrum for an individual in this specific situation. A question to be raised is how this specific group of individuals experience health. Aim: To describe the experience of daily life for young adults with SB through a theoretical lens of health. Method: This qualitative study was conducted using a reflective lifeworld approach with an interpretive part. In the lifeworld theory it is understood that all our doings, feelings and thoughts are experienced through the lifeworld. The interview questions were open and non-standardised. Findings: The main theme was formulated as The contradictory path towards well-being in daily life, and was constructed on the sub-themes: Not understanding and taking responsibility for the lower body, Having people standing behind me—not being allowed to grow up myself, Compared to people like me, I usually do well, I thought it would work out by itself, and A lack of structure in daily life. Conclusion: The study indicates that young adults with SB have a diminished health and well-being and that they have a contradictory path to travel towards independency which is of great concern for this group of individuals. Differences in views of independence constitute a problem and it is important for health care providers to be aware of the individuals’ perspective on independence. This notion is something that needs to be taken into account when designing support programs for these individuals.
Highlights
The perception of health and its implications is profound in today’s society
Being born with a life-long health condition such as spina bifida (SB) raises questions relating to the perception of health in that specific situation
The fact that I spent a lot of time in hospital was a safety valve for me. —Health services are there [for me]
Summary
The perception of health and its implications is profound in today’s society. the concept of health as a state of complete physical, mental and social well-being and the absence of disease or injury, as formulated by WHO in 1948 [1], is not considered to help promote this understanding in society. Soe et al [16] suggest that young adults with SB reach developmental milestones years later than their “healthy” peers These individuals exhibit unhealthy behaviors, such as eating less healthy diets, exercising less and are prone to a more sedentary life style than age-matched adults (ibid.). An individual with SB needs to deal with long standing illnesses and is often viewed as having a disability that needs to be compensated for This medical condition is an example of malfunction of the body, though congenital, and could be seen as an outside-perspective to the individual human being. Differences in views of independence constitute a problem and it is important for health care providers to be aware of the individuals’ perspective on independence This notion is something that needs to be taken into account when designing support programs for these individuals
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