“Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences

Recruitment and Sampling

We recruited from two SCD clinics in Ghana. Participants were eligible for participation if they were aged 12 to 17 years, had no other comorbidities or were not pregnant (to ensure that the data generated related to SCD because fatigue is known to be associated with many illnesses and pregnancy), and could communicate effectively in the English or Twi languages, the most common spoken languages in Ghana, both of which Brenda Poku is fluent in. Clinicians at the clinics introduced the study to eligible adolescents and their parents. Those who expressed interest in the study were introduced to Brenda Poku, who provided them with detailed information about the research and what their involvement would entail. Each had the opportunity to ask questions before deciding to participate, and those who expressed interest were given 2 days after the initial contact with the researcher to reflect on the study and consider taking part. After the 48 hours, the researcher phoned them to find out about their decision and answer any further questions they may have. At this point, verbal assent and consent were taken from both the adolescent and a parent, respectively, and the place and time for an interview was negotiated with them.

Initially, participants were purposively sampled to ensure maximum variation in relation to gender, age, place of residence, ethnicity, educational level, and family socioeconomic background. As the study progressed, theoretical sampling, based on the categories emerging from data analysis, was incorporated to seek out data for conceptual and theoretical development of the analysis (Charmaz, 2014). Theoretical sampling did not lead to seeking out participants of specific characteristics, but instead, guided the issues to pursue in later interviews. Sample characteristics are reported in Supplemental Table 1. All the adolescents were clinically stable; none of them had additional health-related conditions or was pregnant.

Data Collection

We intended to let the adolescents convey their thoughts as capable social actors (Kellett & Ding, 2004). Consequently, we adopted a range of methods. We used traditional interviews, drawings, photography, and picture-elicitation. Multi-method and art-based designs have been shown to be particularly effective in research with adolescents, empowering them and making participation in research more interesting by providing them greater flexibility in how they choose to represent their experiences, as well as allowing for different, but complementary insights into the meaning they make of their worlds (Poku et al., 2019). Thus, we allowed adolescents to decide the extent of their participation and how and what they used to communicate their experiences. By giving the adolescents the opportunity to produce images that spoke to their own experiences in combination with in-depth interviewing, we aimed to enable them construct narratives about their fatigue experiences. Fifteen adolescents participated in the traditional interviews, and nine participated in the picture-elicitation interviews.

The traditional interviews lasted on average 1 hour, whereas in the picture-elicitation interviews, the images elicited more extended conversations, lasting an average of 2 hours. Because the picture-elicitation interviews required prior-reflection, which initiated a degree of self-interpretations of experiences by the adolescents prior to the interviews, they generated richer narratives. In addition, the discussions of the images created deeper insights, resulting in rich data that were only accessible through the images, as well as helping to make sense of some of the data generated from the traditional interviews (Poku et al., 2019).

Just before a scheduled interview began, which took place either at participant’s home, school, clinic, or parent’s workplace, depending on their preferences, the researcher discussed again the purpose of the research and what was involved and whether they still wished to take part. At this point, written assent from the adolescents and consent from a parent were taken before the interview was conducted. All interviews were conducted privately with the adolescents, except two where parents insisted on observing the interaction. The interviews were conducted as flexible, semi-structured conversations between November 2016 and June 2017. They were guided by an interview guide, as well as participant-produced images in the picture-elicitation interviews. The interview guide consisted of a series of prompts related to topics such as definition/description of fatigue, consequences of fatigue, and management of fatigue, and this was revised as new ideas emerged from the interviews. As the study progressed, the guide evolved into an aide-memoire list of four main topic areas: the representation of fatigue; the sociocultural issues significant to fatigue experiences; the interaction between fatigue and daily functioning, identity, and social relationships; and the interactions between fatigue, identity, and self-management decisions/choices. Interviews were conducted in English and/or Twi, the two commonest languages spoken in Ghana. With permission, the interviews were audio-recorded, fully transcribed, and translated into English where necessary by Brenda Poku. Consent was sought to use the interview excerpts and images anonymously during the research dissemination.

Data Analysis

Interview transcripts and images were anonymized, using pseudonyms chosen by the adolescents, and imported into NVivo 11 Pro to organize and manage the data. Using the grounded theory approach, data were analyzed iteratively through line-by-line, focused and theoretical coding, and constant comparison to identify analytical categories (Charmaz, 2014). Attention was paid to concepts that explicated how the adolescents responded to their fatigue, the meaning they held toward those actions and their fatigue, and how those actions and meanings interacted and evolved (Charmaz, 2014). Informal memos were written, and diagrams were drawn to develop ideas about the data and visualize connections between the categories. Sampling continued until all the dimensions of the theoretical categories were adequately developed, and no new insights were apparent. The authors met regularly during data collection and analysis to discuss the codes, categories, relationships, and interpretations being made to ensure the authenticity of the findings generated. Data were analyzed in the English language.

Rigor

The principles of grounded theory by Charmaz (2014) highlighted above were applied to ensure rigor in the conduct of the study and the interpretation of the outcomes. We employed (a) multimethod data collection approaches and recruited from two settings to ensure comprehensiveness and credibility of the data generated; (b) purposive and theoretical sampling to ensure variation in the sample and data; (c) line-by-line coding, constant comparison, searching for deviant cases, and memo-writing to maintain the trustworthiness and authenticity of the data generated; and (d) theoretical sensitivity to stimulate reflection on the data. These critical approaches allowed us to construct from the data a theory that fulfill the criteria for high-quality grounded theory research set by Charmaz (2014): originality, credibility, resonance, and usefulness. We acknowledged that data and analysis are co-constructed by the researchers and participants, who bring their ideas, experiences, views, and interactions to shape the research process and outcomes (Charmaz, 2014). In view of this, we took a reflexive stance by thinking critically about our experiences and assumptions, which include both clinical and nonclinical expertise and knowledge and how these might have shaped the research (Markham, 2017).

Ethical Issues

Three ethical review committees granted ethical approval for the study (16435, CHRPWE/AP/462/16, and KBTH/MD/G3/17). In Ghana, parents have the absolute power to make decisions on behalf of their children up to 18 years. To conform to this cultural requirement while acknowledging the international legislation on children’s rights, informed consent was considered a family decision. Only participants who willingly assented and whose parents provided consent were interviewed. They were guaranteed of their right to withdraw from the study at any time, as well as withdraw their images. Attention was paid to participants’ behaviors during the interviews to remain sensitive about their voluntary participation. Arrangements were made with the clinics to provide post-interview emotional support to participants who became acutely distressed, and to manage any disclosures of harm. Power differential was managed by using visual methods to give the adolescents an active role in the research (Poku et al., 2019), adopting a less adult-centric appearance (Epstein, 1998), giving participants’ choice over the interview schedule and control of interview recording (Moore et al., 2008), and adopting relationality and reciprocity (Hall & Callery, 2001).

“Body as a Machine”: Meaning and Construction of Fatigue

All the participants conceptualized their fatigue as a bodily experience. All perceived the body as a machine, and fatigue was tied to its energy and performance capacity. For instance, one participant exemplified fatigue as depletion or loss of a car’s energy:

It’s (tiredness) like a car with no petrol. Nothing will make it move. (Adolescent male, 14 years)

The “body as a machine” analogy was used by the adolescents to comprehend, shape their understanding of, and communicate their fatigue experiences. The participants conceptualized their own bodies (which some participants explicitly described as the “SCD body”) as machines with limited energy capacity, which it loses quickly, and defined the fatigue they experienced as a state of energy loss or depletion. One young person highlighted this conception by linking the SCD body capacity to a USB drive with a limited storage capacity:

My body is like a 64MB drive. I mean it has a very little energy capacity due to sickle cell; therefore, the energy drains very fast. I never have enough for the things I want and need to do. (Adolescent male, 16 years)

Fatigue was perceived as a dysfunction of the SCD body. This perception identified fatigue as an embodied experience, something lived and experienced in the body, and not merely a medical symptom. Fatigue as a dysfunction of the biological body also heightened the adolescents’ awareness of their own embodiment by separating the self and the body. However, this awareness did not suggest a dualistic view of the self and the body, but instead made the adolescents aware of a connection and interdependency between the self and the body. In explaining this interdependency, one adolescent likened the body to an electricity meter (Figure 2A), which used energy credit on a prepaid card (Figure 2B) to power electrical gadgets/self. She explained how when there is energy depletion/fatigue, the meter/body is unable to support the function of the gadgets/self:

The pre-paid meter stands for my body, the pre-paid card represents my energy storehouse, and the credit represents the energy available to use. If there’s no credit or it gets used up, there won’t be any electricity to power the lights, ceiling fan and TV. Everything becomes useless, me and the body. (Adolescent female, 17 years)

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Figure 2.

(A) Electricity meter and (B) a prepaid card (adolescent female, 17 years).

Although the SCD body was likened to a machine, it was not perceived by the adolescents as passive, but rather as an active and a reactive entity due to its limitations. The SCD body was perceived to monitor energy usage by setting limits and boundaries and restricting activities to avoid fatigue. One adolescent described a dialogical relationship between the self and the SCD body. He explained how the SCD body used physical symptoms such as increased heart and breathing rates, light-headedness, and pains to communicate signals of energy consumption and imminent energy depletion to the self. It was important for the self to hear, comprehend, and give attention to these signs. According him, it was important for him to “listen” to and stay “in tune” with his body:

I know when I’m about to get tired. I start panting small small and my breathing increases. When that happens, I stop playing. That way, I don’t get too weak. (Adolescent male, aged 13)

Fatigue appeared to result when this dialogical body–self relationship is not maintained. The SCD body was described to be unyielding and relentless in the relationship, having greater control and influence over the self. It could not be controlled and bent to the wishes of the self; rather, it constrained the self. Its reduced biological capacity impinged on the self and acted as a limiting factor on the adolescents’ daily functioning:

When I’m playing with my friends or when I’m walking, and I start feeling my heart beating fast, and I’m breathing quickly, it means I’m gradually using petrol in the car. If I continue, my heart pounds faster, breathing become faster and I start to feel some pains, it means my body is telling me that my energy is about to get finished, so I need to do something fast. If I don’t stop and rest but continue, I’ll start feeling dizzy, and the pains become very severe, which forces me to stop. (Adolescent male, 14 years)

From the adolescents’ narratives, the body–self relationship, in the context of fatigue, appeared to be complex and changing. Sometimes there was a dialogical or reciprocal relationship (when the young people listened to the body and acknowledged its power), and sometimes there is a sense that they were in conflict or opposition (when the young people overlooked or ignore the body and its power).

“Losing the Energy”: Contributory Factors and Consequences of Fatigue

The adolescents’ understandings of a socially acceptable adolescent body and their desire to conform to this disrupted the body–self relationship and led to fatigue. The adolescents believed that being physically active, demonstrating immense energy and performance capacity, and having high levels of endurance and tolerance were the “normal” characteristics of adolescence/youthfulness. These bodily expectations created a reality as well as a reference point or an image of what a “normal” adolescent body was for them. From their perspectives, these bodily attributes were of a high symbolic value culturally and constituted inflexible social expectations that accompanied every activity congruent to their gender, that they undertook. Thus, any adolescent body lacking these attributes, like the SCD body, was disapproved of and perceived as inferior and of lower symbolic value, hence running the risk of being stigmatized. This was an understanding they have acquired through their socialization. This perceived image of a “normal” adolescent body influenced how the participants related to their bodies and consequently, how they experienced fatigue. It made it difficult for them to stay in tune with the SCD body, by forcing them regularly to push it beyond its capacity, which disrupted the body–self relationship and led to frequent experience of extreme fatigue. One adolescent narrated how he pushed himself regularly when engaged in any activity to meet these social expectations:

You know, everyone expects you to be strong and not get tired easily as a young person. This makes me ignore my body and force myself to do things, causing painful tiredness. (Adolescent male, aged 14 years)

The incapacities of the SCD body were invisible to others until the adolescents became fatigued. According to one female participant and one male participant, their fatigue was discredited and construed as incompetence, laziness, and weakness within their social domains due to their age and normative appearance. The negative social reactions to their fatigue were gendered. The young male was labeled as being weak and the young female as being lazy. This gendered labeling was influenced by the culturally defined characteristics of masculinity (i.e., virility, power, strength, and athleticism) and femininity (i.e., domestic industriousness) in the Ghanaian society (Salm & Falola, 2002). The perceived need to perform activities to the socially expected level congruent with their age and gender to avoid social stigma made them constantly conscious of their social performances, and determined and regulated how they wished to use and present their bodies:

When I get tired, they ridicule me that I’m lazy. They see you as normal, you know, you’re not disabled so why should you get tired easily or why can’t you do this or that. When someone meets you, they can’t tell you get tired easily, so they expect you to be normal. So, I tend to force myself even when I’m tired. As you know, when you push yourself, you shut down eventually. (Adolescent female, 13 years)

It makes me feel bad because he [friend] tease me that I’m weak, incompetent and there’s no fun in playing sporty games with me because I’m always complaining that I’m tired, so, I keep pushing myself. (Adolescent male, 14 years)

The “body as a machine” image as well as the internalized perception about youthfulness helped the adolescents to interpret the social reactions to their bodies and fatigue. The adolescents appeared to have developed and constructed the image through their social relations, stemming from shared sociocultural conception and interpersonal ideas about youthfulness within their social domains. The image and its associated social expectations also enabled the participants to link the diminished capacity of the SCD body to the concepts of self and identity. The participants based their perceived self-esteem, self-worth, self-identity, and sense of “normality” on the ability to perform activities in line with the cultural expectations. Consequently, there was an active pursuit to separate fatigue (which represents the biological deficiency of the SCD body) from their sense of normalcy. Presenting the SCD body as an efficient machine was crucial for the presentation of the self as “normal” in the adolescents’ everyday lives. Indeed, one young person expressed a sense of pride in keeping up with activities at all cost despite the consequences on his health:

Being able to push myself to do things as a young person makes me happy even when I end up with severe painful tiredness. It makes me feel like everyone else and relevant. (Adolescent male, 16 years)

Paradoxically, however, keeping up with activities at all cost sometimes undermined attempts to present the self as “normal” due to the limits imposed by the SCD body as this data extract illustrates:

One time at school, I overexerted myself and had a blackout. When I woke up, everyone was around me, having a look like there’s something abnormal about me, like epilepsy or something. I couldn’t stand that they may be thinking that way because no one in school knows that I’ve sickle cell. They saw me as normal until that time. I felt embarrassed. (Adolescent female, 14 years)

The control and influence the SCD body had over the self led most of the adolescents to accept their bodies as inferior through an active, intentional process of surrendering to it. This acceptance influenced their perceived self-identity, self-labeling themselves as the boy who gets tired easily and always, the guy who doesn’t have enough energy to do the things he wants, the weak guy, and the lazy girl. This resignation motivated them to develop self-management strategies to enable them to stay in tune with the SCD body to balance the body–self relationship to control fatigue.

“Managing the Energy”: Self-Management of Fatigue to Construct a Socially Acceptable Identity

The adolescents’ fatigue self-management was aimed at managing the SCD body’s limited energy to prevent its incapacities from being discerned and stigmatized to present a “normal” self. The “body as a machine” perception created the ideal image, which guided the management strategies. The strategies employed were based on actively managing limited energy resources to ensure the SCD body worked as efficiently as possible. Energy management was conceptualized as a mechanical process, with strategies based on energy restoration, conservation, and diversion.

Energy restoration was aimed at maintaining the SCD body’s energy daily. The participants perceived the body to require fuel in the form of food to function. Using phrases such as fill the tank before activities and top up during activities, one participant conveyed that eating healthily and regularly was a way of maintaining the SCD body’s energy stores. This was done to ensure constant availability of energy to maintain performance capacity to ward off fatigue, to present the SCD body as an efficient machine, and consequently present the self as “normal”:

Before the ceremony, I ate a heavy meal so I’ll have enough energy for the procession. I had a full tank. I constantly drank glucose water during the procession to top up my energy. This helped me to take part in the procession for long before feeling tired. (Adolescent female, 13 years)

Energy restoration also involved measures to replenish the SCD body’s energy when drained by an activity. Rest and hydration were the commonest and most successful measures employed. All the adolescents explained how these strategies enabled them to rejuvenate their energy:

The water I drink and the rest is like buying some credit onto the pre-paid card to run the meter. So, it’s like me replenishing my energy storehouse to run my body. (Adolescent female, 17 years)

The adolescents made daily efforts to rest in isolation in an attempt to hide the SCD body’s performance incapacities, which become visible when fatigued, to pass as “normal” and maintain their preferred social identity. The fatigued SCD body was removed to hide it from suspicions of incompetence, laziness, and weakness. One young person’s perspective was typical:

It’s very important that you’ve somewhere to go to when you’re tired, be on your own and shut off everybody and everything to deal with it (tiredness). People treat you bad when they see you tired. So, when I’m tired, I’m in a hurry to get to my room. (Adolescent male, 13 years) (Figure 3)

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Figure 3.

An adolescent male aged 13 years bedroom.

One participant explained how she developed plausible explanations for removing herself from social situations to reduce the risk of revealing the fatigued SCD body to avoid being stigmatized. Such attempts at impression management appeared to be her way of concealing the SCD body and its limited capacity to pass as “normal” to maintain a desired social identity:

To avoid the hurtful words, when I get tired, I don’t tell them [friends]. I make an excuse and leave for the house to rest. I tell them I have to run some errands for my mum or go and check on my little siblings. (Adolescent female, 14 years)

The second strategy, energy conservation, was a common energy management strategy the adolescents used to stay in tune with the SCD body on a daily basis. They conserved their limited energy through activity pacing, either by avoiding or reducing activities that they felt contributed to their fatigue. While these conservation measures enabled them to maintain a stable body–self relationship, they encouraged social isolation and withdrawal and failed to support the adolescents’ desire to present a socially acceptable self. To avoid this, selectively prioritizing certain social activities and investing the limited energy into them was how some of the participants attempted to present themselves as “normal” at certain times and within certain social spaces as they paced themselves daily. Some participants “played to their strengths” by assigning higher priority to nonphysical activities over physically demanding activities to efficiently preserve their limited energy and construct a positive social image. One adolescent explained how he prioritized and engaged in activities in which he excelled:

I sit and draw instead of play games and run during PE. That way I don’t use so much energy so I won’t get tired. When my friends are playing, instead of joining them, I just sit and draw them; and I show it to them afterwards. My friends like me for my drawings. I’m popular because of that. (Adolescent male, 12 years)

As the adolescent’s account indicates, this approach resulted in a downward shift in identity for the male adolescents, as they had to relinquish athleticism associated with the masculine identity. Nonetheless, when the benefits of relinquishing physical activities exceeded the relative costs, they appeared to be content with giving up “valued” identities:

I’m very good at drawing, and I’m popular because of it, but it’s not like being physically active and fit. But I’m ok with it because it saves me from getting very tired and ending up with pains and missing school. (Adolescent male, 12 years)

Other participants also tried to project a “normal” self by prioritizing and bracketing their social engagements to times such as school trips and football tournaments when significant people they wished to present themselves to as “normal” were present:

But when I know an activity like a football competition is very crucial for me to show them that I’m normal and not weak, I push myself and engage in it till the point I can’t anymore. By then I’ll have shown myself as strong and capable. Afterwards, I’ll deal with the overwhelming tiredness privately. (Adolescent male, 16 years)

Finally, energy diversion was a strategy employed by some participants to reduce or evade the perceived inflexible social expectations of the adolescent body that pressurized them into depleting their energy to present a “normal” identity. It involved them diverting their limited energy into intellectual pursuits, which they perceived as highly regarded in their social domains. They perceived intellectual work to require and demand less energy and to be a socially acceptable alternative to physical activeness. The adolescents made this intellectual investment at the expense of their social interactions and relationships. From one young person’s accounts, this approach to energy management not only helped him to reduce people’s expectations of him, regarding the acceptable bodily performance, but it also enabled him to create a credible self and present a socially valued identity:

Because I know academic work is not as hard as those physical activities, I focus my energy on them so I can avoid tiredness. My granny and teachers are happy when they see me learning instead of playing football or roaming about with my friends. Focusing on my studies is helping me prove that I’m not weak or lazy or incompetent, so I divert all my little energy and strength to my academics. I use every opportunity to study. As you know, doing well in school is even more important than all those physical strengths because, in the future, being intellectual will make you more prominent than the physical prowess. (Adolescent male, 15 years)

As the young person’s account indicates, contrary to the notion of linking normality in adolescence to the perceived bodily attributes of a youthful body, they connected normality in adulthood to career and family successes. This notwithstanding, the young person referred to the potential of fatigue to upset their ability to assume positive identities. Thinking in terms of risk forced him to seek to shape and stabilize his future toward his desired outcome. Therefore, deciding to invest the limited energy into intellectual pursuit was a present-oriented fatigue management strategy connected and geared toward the future. The adolescents who employed this strategy were consequently “living for the future,” believing their fatigue-centered self-management strategies in the present will, at the very least, have a bearing on who they become in the future. This energy management strategy, compared with the others, was the single strategy that enabled the adolescents who employed it to use their limited energy efficiently, present a socially acceptable identity, develop a sense of self-worth, and have a positive future outlook. However, it encouraged social isolation and withdrawal.

Limitations

The study has some limitations. First, the findings must be considered in light of their being from a sample recruited from two sickle cell centers in Ghana from 2016 to 2017. The views reported are therefore solely from adolescents who were registered and actively accessed care at these centers. Moreover, recruitment of participants to the study was under the direct control of the health professionals at the research settings, which may have introduced intentional or unintentional selection bias. Furthermore, although efforts were made to ensure no meaning was lost in translating interviews conducted in Twi to English, this could still be a limitation for this research. Finally, the research findings are based on the analysis and interpretations of adolescents’ accounts that were generated by the researchers. The views, ideas, knowledge, interactions, backgrounds, and assumptions of the researchers (a mixture of clinical and nonclinical expertise, with knowledge of methods and clinical research in the chronic illness field and researching with children) therefore partly shaped the research process and subsequently the research outcomes (Charmaz, 2014; Mason, 2017).