‘I really feel like I am ageing early’: an interpretative phenomenological analysis of the lived experience of young adults with life-limiting conditions (YALLC)

Patient and public involvement

The initial research question and objectives were inspired by interactions with YALLC. However, no patients were directly involved in the conception, design, data collection or analysis of this research. During data analysis and manuscript writing, CT, an independent collaborator representing a member of the public, with training and experience in public health, communications and journalism, contributed insights for interpreting and translating study findings into policy and practice. To uphold patient privacy and confidentiality, CT was provided anonymised version of the transcripts to analyse and discuss findings.

Living with limitations and in limbo

Participants referred to living a ‘suspended’ life, characterised by many unwilling compromises and feeling ‘stagnated’ within a state of flux. They described barriers while pursuing interests or when fulfilling normative expectations of adulthood (eg, finishing school, finding employment, getting married, having children, etc.). A major obstacle was a prevailing sense of ‘fatigue’ or ‘tiredness’ commonly ascribed to their physical limitations:

P1: Sometimes, like, my heart wants to do this, do that… but my body cannot lah.

P3: I love to watch people play sports… But, then, I cannot [participate] because it’s gonna exert a lot of energy for me, right? So, I only can watch.

As such, their lives seemed plagued by constant ambiguity and self-doubt as many reflected on what might have been while simultaneously anticipating further losses in function, opportunities and time due to underlying or advanced disease. They also reported needing to make several personal and professional sacrifices:

P7: [W]hen I was interning, I felt physically, quite hard lah, like, ten minutes of paperwork takes me one hour to file. And, yet, I don't want to trouble my colleagues because they are all busy lah… [So] I just moved on to doing a job… to taking on whatever job the people recommended me.

Experiencing identity crises, confronting existential concerns and chasing the elusive goal of enduring connection

Participants shared difficulties building and maintaining an individual or public identity as medical vulnerabilities limited their range of lived experiences. This impacted their self-concept and self-esteem adversely which meant several struggled to experience true joy or perceive tangible value, meaning, or purpose in their existence.

P2: I know I should be doing it but it’s just… feels like pancit [imagery of a ‘flat or punctured tire’ in local slang to mean ‘feeling lazy’ or ‘lacking motivation’] like that.

P6: I feel like [pauses]… I really hate my existence actually since I was born.

They often felt lonely, isolated and misunderstood. Past or perceived hurts and disappointments were prevalent, precipitated by unresolved trauma from adverse social encounters. Social withdrawal and self-isolation surfaced as preferred maladaptive coping or defence measures, interestingly, for the two female respondents:

P3: I [am] scared to offend people somehow… I also don’t dare to make new friends.

P6: I also don’t mix with people anymore because of their ill intentions towards me… if they are, like, toxic for me, then I cut [them] off.

Constrained by physical limitations, P7 expressed sadness and resignation over his perceived failure to establish and cultivate meaningful, reciprocal connections with his abled peers:

P7: [A]t some point, I really felt very close to them, I thought they are my friends lah… [but there was] one incident that hurt me a lot… one of my friends made the statement [that] he don't [sic] treat me as friend but it’s, like, he [sees himself as] my [domestic] helper lah…

Respondents faced similar disappointment and difficulties relating to forming intimate or romantic connections, as their social circles seemed hesitant or uncomfortable to broach such topics with them. For respondents such as P7, he observed that others appeared to feel awkward or would shy away from discussing the prospect of persons with LLC and/or disabilities being involved in romantic or sexual relationships (this is further evidenced by his use of the third-person narrative to describe persons with LLC and/or disabilities):

P7: Like, I think social relationships, sexually [sexuality] and all this—I think that people feel that it is okay not to talk about it. Yeah. Or, they feel like… maybe because they [YALLC] have a disability so do [they] even think about this and all that?

P3 also perceived her sister made friends more easily. She felt her illness prevented her from engaging in social activities or assuming social ‘roles’ typically associated with her similar-age but healthier siblings and peers:

P3: “Maybe because… she [P3’s sister] will usually go out with her friends; [by contrast] I don’t usually go out… During secondary school, I usually go out with my friends but, then… once I have to start using the oxygen [concentrator] 24 hours, right, I stopped going out with my friends.”

Keen awareness of their limitations often made them reluctant to discuss future plans as doing so seemed to engender greater frustration and feelings of inadequacy. Difficulty in fulfilling developmental milestones associated with normative maturation and pathways also led some to question their place in society and purpose in life:

P5: [S]ometimes, I wonder since I'm getting older… I will think, ‘err… is this what I want?'… it’s, like, ‘is this all?’

P7: [A]ctually, I really feel like I am ageing early lah… because of the condition and the issues where [sic] we encounter [are] very much related to getting older lah, like, a mid-life crisis… you don't know what to do… I [am] still lacking the maturity; so, I think, that experience I'm lacking lah…

Striving for autonomy while tolerating codependence/interdependence

Respondents struggled to balance personal desires for adult independence against a longing to break the cycle of dependence. Some adopted a posture of pragmatism or submission as they felt constrained not only by their illness but, also, by their caregivers’ attitudes towards relinquishing control over medical matters:

P4: Ever since young, they [P4’s parents] would do it [medication management] for me… I tried to ask my parents to let me handle my medication timing but they refused to do so.

YALLC proved themselves to be highly adept at deploying various technologies to support their autonomy. Medical technologies such as life support and physical aids were essential for restoring or retaining their functional independence either partially or fully. However, participants also perceived these specialised tools and machines as double-edged or imperfect:

P3: I keep on depending on the oxygen [concentrator], right, 24 hours so… it’s already 'fixed' on me… [but] if it’s not because of oxygen [concentrator], my energy also is not really up to speed so I tend to get tired easily so I don’t go out very often.

P4: [Using a wheelchair] is more comfortable [but] it’s more harder [sic] to travel around because… it needs to be put inside the [family] vehicle… so it’s more troublesome ah.

A number of respondents turned to communication technologies to stay connected with family and friends. Online video games, chatrooms and social media effectively encouraged greater social participation and inclusion even as physical decline became inevitable. Not only did these serve as valuable tools and platforms for YALLC to stay socially active, they also provided an avenue for one participant, that is, P6, to secure employment as a social media marketer:

P1: I actually have a number of online friends… I just talk to them… from playing video games.

P6: My [social media] account got viral ‘cause I share about a lot of bad things, about relatable [things]. So, that’s where they find my account got big [sic]… I am not sure if they knew if I am unemployed, so they tried to give me a job like ‘Can you promote for me these things?’…

Codependence and interdependence were noted in a few instances, with variable outcomes. A couple of participants assumed the caregiver role to their loved ones and even pets:

P6: … That’s why I started telling her [P6’s mother] to take care of herself also, like, what if one day I die? She must [be able] to take care of herself what… because my Mum every day depending on me also.

P7: I mean, it [P7’s pet dog] feels like my kid already lah… Yeah, that’s why I feel… in the past, I want[ed]… if I have a family [I would have] someone to look after then… Now, actually, I think [that] part, I also feel more [accomplished] because I also have, like, a 'kid' to look after lah!

At the other end of the spectrum, P3 admitted to lacking readiness in transitioning to adulthood, with attendant responsibilities that came along:

P3: I always ask my mother or my siblings – they know better. All the adulthood things, like, bills all… I don’t know what to do. Even my delivery—like, food delivery—I ask my siblings, I don’t know how to do all that.

Accepting and appreciating (as opposed to avoiding) ‘new normal’ way of life as positive and integral to one’s existence

Despite inherent challenges and notable disappointments, majority of respondents expressed gratitude for many ‘blessings in disguise,’ reframing their lived experience in positive ways and redefining expectations of and for themselves. Others sought consolation in knowing that others ‘have it worse’ than them:

P5: … [T]here are people out there having it worse than us… I mean, for us, we have weakening muscles but there are some people who are born into this world, they just have conditions that are far worse…

A couple also attributed happy outcomes like stronger family bonds and, strangely, better self-restraint to their special predicament:

P5: I’m fortunate to have a loving family because my relatives… probably because of my condition… maybe it brought them all together because they… are very loving… so, I didn’t really experience loss… I gained [and, instead, was] given more, I guess… it’s like a blessing in disguise.

P7: … I’m a very impulsive person lah… but it [P7’s LLC] stopped me from being, like, so openly impulsive lah… even my friends will always joke that [I] will end up in jail if [I] don’t have this [life-limiting] condition!

Spirituality, religion and social support from family, friends and the community appeared to play a significant role in enhancing YALLC’s acceptance and adaptation to living with LLC:

P6: I feel, like, even if I was blessed with this kind of condition, I still have, like, God give [sic] me a good brain [laughs] which is the most precious thing ever, y’know?… God blessed me with things that are good enough, like, for what am I asking for more?

Many also realised that wanting to be seen as ‘normal’ was self-defeating and futile:

P5: There were times when I wish that I could be like an ordinary person. Sometimes, I do think about that. But… after that, I think… ‘what’s the point of us comparing [ourselves] with others?’ I mean, your making comparison may make yourself feel worse.

To cope with the uncertainty of living with LLC, almost everyone adopted a ‘carpe diem’ approach by living in and for the moment:

P2: Just do lor, just live today, I guess, like, don’t think too much about… like, really, the very far future. Just, like, do… things now.

P5: … I haven't really thought much about it [i.e., P5’s future]… [b]ecause sometimes, you also don't know what’s going to, like, happen in the future…

For P7, finding common ground between the ‘haves’ (i.e., those living with LLC) and the ‘have-nots’ (i.e., those living without LLC) was his way of coping. He derived meaning and purpose through book writing; one project involved his personal journey of searching for romantic love—an experience he perceived as relatable to both groups:

P7: … I wanted to write a book to talk about my life and things [that] people may not know [of]… that we [YALLC] are actually quite normal… I want to share with people that I can also find love…

Discussion

Study findings spotlighted several ‘hallmark’ experiences among YALLC given a new lease of life. Living in limbo and losing control over inconvenient and, in many instances, cruel circumstances stymied their hopes, aspirations and life itself. Due to bodily limitations, their extended existence involved several uneasy and unwilling compromises to personal identity and a purposeful existence. Many tried to keep individual motivation and morale afloat, caught in a continuous struggle between striving for a ‘normalised’ or ideal state of being while adjusting expectations to align more realistically with their actual abilities and limitations. This often led to YALLC pursuing developmentally appropriate pathways, but ‘negotiated’ with several ‘caveats’ arising from or associated with their ongoing and evolving conditions (and constraints).

Figure 1 summarises these different factors and associated outcomes observed to influence or define participants’ lived experience. Our findings highlight how participants experienced varying degrees of grief, distress, demoralisation and dysphoria owing to irreversible, progressive decline and uncertain life trajectories.11 They frequently oscillated within a spectrum of contradictory states of being, ‘juggling’ normative or age-expected aspirations against a perpetual need to confront associated stressors arising from or exacerbated by clinical limitations during such pursuits.

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Figure 1

Described challenges and stressors of young adults with life-limiting conditions (YALLC pursuing normative life goals and pathways

While respondents’ understanding of adulthood and autonomy varied, their perceptions of ‘normal’ adulthood were (predominantly) influenced by prevailing societal norms and public attitudes including views held by key opinion leaders, family members, friends, educators, etc. They faced similar challenges as their peers to attain age-expected, normative milestones but must confront additional obstacles and stressors at various levels. Pervasive uncertainty surrounding their LLC, whether disease progression or prognosis, added to their frustration and disappointment. This often led to feelings of dissonance, disempowerment and despair observed among participants. We postulate that a self-defeating cycle resulted, where confidence and motivation waned, autonomy and conviction weakened, particularly, as appropriate provider support was not always offered or timely rendered.

Additionally, our findings demonstrate that YALLC faced difficulties related to their social identity and self-worth, similar to observations from other research.11 Authentic connections remain vital to these youths; therefore, curated opportunities for YALLC to meet and interact with peers (whether developmentally typical or other YALLC) are indispensable for promoting sustainable, whole-person well-being. However, YALLC shared challenges in finding peers who understood and/or were willing to accommodate their exceptional circumstances and needs, leading them to withdraw socially.

Technology played a moderating role with regard to this. While progressive physical decline imposed various restrictions on YALLC’s preferred extent and type of social participation, medical technologies such as mobility aids and portable oxygen concentrators offered some relief by restoring or retaining personal autonomy, although temporarily. Furthermore, these technologies presented as a double-edged sword: while they might facilitate partial or full mobility, they posed other challenges such as high transportation costs and social stigmatisation due to their high visibility. As a result, YALLC who relied on them often opted for self-isolation to mitigate psychosocial burdens associated with not being seen as ‘normal’.12

Some YALLC negotiated these limitations by supplementing real-life interactions through online means. Communication technologies including social media platforms accorded YALLC a valuable means of maintaining social ties and fostering identity development, particularly, in the face of progressive physical decline. For some, technology was also exploited as a means of escapism, through living vicariously or creating an alternative self-image.

While the COVID-19 pandemic highlighted several systemic shortcomings in serving the needs of various vulnerable, underserved populations including YALLC,13 it opened up new avenues for remote or ‘hybrid’ work arrangements and unconventional types of recreation. This digital shift appears to offer YALLC greater freedom and flexibility to pursue their passions and interests; correspondingly, such opportunities also raise concerns about cyber security and digital wellness that warrant further study, enhanced awareness and caution.

On a related note, an area worth deeper exploration is YALLC’s experience relating to intimacy and sexuality. Two male participants who felt they had ‘nothing to lose’ because of their LLC disclosed interesting insights: one openly shared his personal journey in finding love (like other similar-age youths) while another said he was initially reluctant but decided to ‘try’ adopting an alternate gender identity through cosplay when he learnt about the possibility and perks of dressing up as a female anime character from other like-minded cosplayers within online and offline communities. One particular male patient also revealed he did not think it wise nor fair to become a ‘burden’ to his prospective partner due to his progressive medical condition, hence, he promptly dismissed any prospect of an intimate relationship.

These young people were evidently overwhelmed by their LLC and bleak future which over time bred anhedonia, habitual disinterest and apathy towards social participation and following through on personal timelines, projects and interests. Interventions to address specific psychoemotional-social-spiritual needs—beyond biomedical and physiological ones—may help prevent any unhealthy internalisation or worse, cynical normalisation of the ‘I am a victim of (my) disease’ narrative.14

In spite of the challenges, with appropriate individualised patient-centric/family-centric support being stepped up and rendered on a timely basis, YALLC can be empowered to reach a (more) stable ‘equilibrium’ and live a validated and valued life as they embark on alternative pathways to achieve clinically and developmentally appropriate milestones failing which their experience of adulthood may end up tumultuous and traumatic.15

The results suggest an urgent need for public health and palliative care professionals to work more closely in addressing YALLC’s total suffering, focusing beyond biomedical concerns to include existential needs and solutions. Against prevailing arguments in favour of a social rather than medical model,12 findings from this study affirm the adverse consequences of leaving YALLC’s unrealised existential needs and aspirational goals unaddressed in the process of transition planning within healthcare.

To help YALLC better adapt to living with LLC, support from external stakeholders need to be more proactive and inclusive. Therefore, we propose an ‘ecological system’ style of support as essential for ‘buffering’ the extent and intensity of possible negative effects or suboptimal outcomes that may potentially plague or befall YALLC (figure 2). Such a system ideally comprises multitemporal, multisectoral and mutistakeholder interactions and interventions, driven by the aim of enabling YALLC to pursue developmentally appropriate goals.16

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Figure 2

Broadened life experience of young adults with life-limiting conditions (YALLC pursuing developmentally appropriate life goals and pathways with customised interventions

By embracing normality on YALLC’s terms, timelines and helping them find meaning through experiential appreciation, they can encounter enhanced self-worth, personal control and independence.17 Implementation of strong support systems adapted to their circumstances is, thus, imperative. For example, specialised career counselling or guidance by ‘job-skills integrators’ that acknowledge their developmental and aspirational needs can be organised. Interventions such as dedicated wellness programmes and customised service platforms, tailored to YALLC’s personal preferences—whether through in-person social interactions or online mediated means—can help foster relationship-building and conflict management skills, increase psychoemotional resilience, and encourage social participation and community engagement not limited to condition-specific and/or recreation-specific interest groups among YALLC.

Given the myriad of challenges, creating supportive and safe spaces while providing ample opportunities for promoting YALLC’s independent living and learning, work and leisure within ‘compassionate communities’ become undeniably crucial.3 18 To augment ongoing efforts in effecting a whole-of-society mindset shift towards a more positive and inclusive society, such a system should comprise dedicated resources, competent and compassionate19 professionals and individuals at various ‘touchpoints’ across multiple levels, sectors and disciplines to engage and support YALLC and their families. Importantly, they need to be well-equipped to accommodate and align developmentally realistic pathways and measures of success with YALLC’s actual abilities and preferred priorities. To address YALLC’s psychosocial needs more effectively, there needs to be more sustainable interdisciplinary collaboration involving proactive partnerships across and within various health and psychosocial disciplines, including clinicians, therapists, social workers and spiritual counsellors. Furthermore, strategic long-term planning is necessary to ensure continuity of palliative and supportive care as YALLC age while their primary caregivers become less able or available to care for them.

By virtue of their extraordinary circumstances, YALLC inadvertently fall between gaps of the system during illness and developmental transitions. Therefore, in addition to clinical and professional intervention, changes in societal attitudes and clinical culture in favour of more progressive perspectives on acceptance, authenticity, autonomy and what is considered ‘normal’—with focus on YALLC’s actual abilities, strengths, values and preferences—should yield more developmentally appropriate aspirational life goals. These can be supported by more ‘humane’ health and psychosocial service responses19 including more proactive and sustainable community involvement and initiatives that routinely engage (rather than exclude) YALLC and their caregivers.

Strengths and limitations

By focusing on YALLC’s day-to-day lived experience, the IPA approach provided contextualised insights to how these youths prioritised, related to expectations and managed individual circumstances (and constraints). Nuances and complexities of phenomena uncovered this way are posited to optimise clinical impact as interventions incorporating psychoemotional-social-spiritual components are conceived. The close collaboration between investigators with diverse professional expertise and experience ensured richness in data interpretation. This was on top of rigorous adherence to study protocol (eg, regular research meetings held to audit, align and address differences in data interpretation) from participant recruitment, interview conduct to data analysis, thus, minimising bias and enhancing trustworthiness of study findings.

While our study aims to amplify YALLC’s voices and advocate for their (unmet) needs, research findings should be considered in light of its limitations. First, the use of IPA potentially narrows wide generalisability of results due to its focus on deeply subjective experiences in a small sample within a specific sociocultural context. The analytical process of IPA was necessarily influenced by researchers’ perspectives, although reflexive practices were employed to mitigate this. Notably, none of our respondents transitioned to independent living facilities, an experience that may be more common in other contexts. Additionally, we had omitted paediatric cancer survivors transitioning into adulthood to (specifically) address a literature gap on less-studied, non-oncological LLC. Finally, only two female patients were interviewed. However, there were no observable gender-based differences in the data, suggesting that within the scope of this research, experiences transcended gender lines. Despite these limitations, our proposed conceptual framework corroborates with existing literature, indicating intrinsic validity.

With this early understanding, future research can identify determinants that influence the holistic YALLC experience and reveal factors that may be associated with enhanced coping and superior outcomes. Due to small numbers and considerations around culture and context mentioned above, a multicentre, cross-sectional study using survey methodology is ideal. Lastly, if an intervention is designed based on these new findings, an evaluation to determine its efficacy in the real-world setting would be indicated.