The impact of living with long‐term conditions in young adulthood on mental health and identity: What can help?

Abstract Background It has been suggested that the mental health impacts of living with long‐term conditions are greater in young adulthood compared to older adulthood, due to greater disruption to identity and routine life events. Objectives To explore the impact of living with long‐term conditions in young adulthood on mental health and identity, and what helps living well with these conditions. Methods Fifteen in‐depth interviews with young adults with various conditions were conducted and analysed thematically. Results Themes related to the impacts on mental health and identity include the following: negative mood and depression; anxiety and fear for the future; and identity as ‘ill’/abnormal compared to former self and ‘normal’ others. Themes related to suggestions for addressing negative impacts include the following: promotion of positive thinking; support reaching acceptance with altered identity and limitations (through stages of denial, anger, depression, then acceptance); and more professional mental health support. Discussion In order to promote mental health and a positive sense of self/identity, young adults with long‐term conditions should be offered advice and support on positive thinking; the long and difficult process of reconstructing identity; and reaching acceptance. This is particularly important for young adults for whom the identity reconstruction process is more complex and psychologically damaging than for older adults, as this life stage is associated with health/vitality and illness represents a shift from a perceived normal trajectory to one that appears and feels abnormal.

to be the healthiest time of life, comprising the peak years of life.
Expected milestones include obtaining independence, forming romantic relationships, establishing a career and starting a family. 4,5 However, young adults with LTCs may not reach, or be delayed in reaching, such milestones.
Whilst the likelihood of having LTCs increases with age, there is a significant proportion of young adults with LTCs (15% of adults aged 20-29 and 20% aged [30][31][32][33][34][35][36][37][38][39] 1 and their experiences and management strategies are under-researched compared to other age groups. There is growing consensus that age-related needs are more important than diagnosis in the promotion of self-management (eg Ref. 6 ) and that age-specific interventions are likely to be better received by young adults (eg Ref. 7 ). However, little is known about the experiences and needs of young adults with LTCs and there is a lack of age-specific self-management interventions. This paper reports a study which explores the experience of living with a LTC in young adulthood and what helps living well with LTCs at this age.

| Impact of living with LTCs
The impacts of living with LTCs have been identified predominantly through research with older populations. Research has revealed that kidney disease, 8 diabetes 9 and various conditions 10,11 are associated with depression, anxiety and fear for the future. One of the postulated reasons for these negative mental health impacts concerns the change in identity that results from LTCs. Individuals with LTCs can experience a loss of their former self (if not diagnosed at birth/infancy) leading to the creation of a new identity with new restrictions which they then need to come to terms with. This has been outlined by research with primarily older adults (eg Refs 9,[11][12][13] ).
The importance of acceptance for improved mental health has been described. Across studies with individuals of varying ages, acceptance has been described as being at peace with the limitations and losses associated with the condition, acceptance of the condition as part of your identity, and being able to appreciate and recognize the life lessons learnt. Acceptance has been described as a gradual and difficult on-going process requiring time and reflection, and has been emphasized as important for living well with LTCs. 11,[14][15][16][17] Acceptance has also been found to be associated with better emotional functioning amongst young adults specifically. 18,19

| Young adults with LTCs
A few studies have been conducted with young adults (with chosen age ranges of young adulthood varying between 14 and 45). Studies have found that cystic fibrosis, 14 congenital heart disease 20 and diabetes 21 are associated with anxiety, depression, fear and worry; and that young adults with various LTCs are statistically more likely to experience anxiety and/or depression than healthy participants (eg Ref. 22 ).
The aforementioned identity reconstruction process has been argued to be more complex and psychologically damaging for younger adults than for older adults. Hunter et al 23 found that young people with venous thromboembolism reported a greater impact on their life from the condition than older adults, including greater mental health difficulties. The authors attributed this to the significant challenges younger adults face in integrating their experience of the condition into their identity, which occurs out of developmental context. They also concluded that young adults are likely to experience more disruption to routine life events such as occupation, pregnancy, travel, planning for the future and engagement in sport.
Other studies exclusively with young adults have also touched on this topic. Studies have found that young adults with specific individual conditions have a sense of being different; struggle with a shift from an identity of healthy to sick; and feel that the challenges they face are not age-appropriate. [24][25][26][27] Relevant to the impact of LTCs on identity is the concept of biographical disruption. 28,29 For those with LTCs, there is a biographical disruption between the individual's definition of themselves with regard to the past, the present and the future. The concept of biographical work involves redefining one's identity through a process of discovering which aspects of the identity have been lost (leading to feelings of loss and grief), which aspects remain, and which new aspects have been added. 30,31 The biographical work also includes a process of coming to terms with the situation, with the illness becoming an integrated part of the identity. 32 This approach acknowledges that being diagnosed with a LTC in young adulthood forces rapid changes to personal identity, as this life stage is associated with health and vitality across cultures 33,34 and a LTC implies premature ageing that represents a shift from a 'normal' trajectory, to one that appears and feels abnormal. 28,35

| Aims and objectives
In summary, research has demonstrated a negative impact from LTCs on mental health and sense of self and identity; and these impacts are interrelated. Most of the research has been conducted with older adults and/or focusing on individual conditions (such as diabetes, for example). However, qualitative research is needed into the experiences of young adults across conditions in relation to their mental health and identity in order to inform age-appropriate (in addition to condition-specific) strategies/interventions for living well with LTCs. This is particularly important given the argument that identity reconstruction is particularly psychologically distressing for younger adults, and therefore, reaching acceptance can be a more gradual and difficult, yet integral, process. The aims of this study were to explore the experience of living with LTCs in young adulthood and what helps living well with LTCs. The current article focuses on experiences and suggestions for living well related to mental health and identity, whilst other papers will focus on social life and relationships.

| Design
In-depth semi-structured one-to-one interviews were conducted with young adults with a range of LTCs. Thematic analysis 36 was used to inductively identify themes about the experience of being a young adult with LTCs and suggestions for living well in this context.
The methods are reported adhering to the consolidated criteria for reporting qualitative studies. 37

| Participants
The eligibility criteria were ages 18-40, English speaking, and currently living with one or more LTCs for a minimum of six months.
Individuals were not eligible to participate if they had extensive cognitive impairment affecting their capacity to independently care for themselves. Participants comprised 10 females and five males, aged . The majority lived with more than one LTC (see Table 1). The mean time since diagnosis was 9.6 years, and age at diagnosis ranged from three to 35 (mean age of diagnosis: 18.7 years).

| Procedure
Ethical approval was obtained from the Anglia Ruskin University

| Data analysis
The data analysis was guided by Braun and Clarke's thematic analysis framework 36 to inductively identify themes and theories about the experience of being a young adult with one or more LTCs, and suggestions for living well in this context. Themes were drawn inductively from the data, and theoretical concepts have not been imposed on the data, only those that coincide with the data have been used. An inductive approach was chosen as this is an exploratory study looking at an emerging area (focusing on young adults with various LTCs) which aims to inform future self-management interventions and strategies. Data analysis was conducted primarily by the first author, who sequentially read through each of the transcripts, making notes about potential themes, the key experiences and suggestions of each participant, and personal reflections on how the data aligned with and differed from the researchers' own experiences of living with LTCs (see 'Reflexivity'). The first author then re-read each transcript, ensuring that key experiences and suggestions had not been missed. Initial codes were discussed with the second author, and then, codes were grouped into themes and sub-themes by the first author. A review of themes then took place by both authors, with the first author re-reading the transcripts once more, and the second author reading the transcripts to review the themes in order to ensure rigour. Once a consensus had been reached, themes were defined and labelled and agreed by both authors. Participant quotes were used to illustrate each theme.

| Reflexivity
Both authors have quantitative and qualitative psychology backgrounds, with the second author also training as a Clinical Psychologist. Both authors are themselves young adults living with LTCs. The authors engaged in reflexive practices such as keeping a reflexive journal and consulting with academic mentors through all stages of the research (see Appendix 2 for extracts from the first author's reflexive journal during the data collection phase).

| FINDING S
Six sub-themes were identified in relation to the impact of LTCs and five in relation to suggestions for living well with the conditions, related to the overarching theme of mental health and identity. The core sub-themes are described below and illustrated using quotes.
For details on the remaining sub-themes, please contact the authors.  ("Ella", 18 years since diagnosis)My doctor is fairly useless…you say, "I'm really struggling", and they go…"Well take some tablets". "That isn't what I came for…"…their quickest solution is to write out a prescription and send you on your way…not very help-ful…I would like to be listened to, rather than, "That's the only option".

| Anxiety and fear for the future
Eight of the young adults described experiencing anxiety (whether clinically diagnosed or self-reported) and fear for the future as a re- The notion of being 'abnormal' compared to 'normal' others was also described by eight participants. Some references were made to feeling 'abnormal' in comparison with others in general, for example: …I'm not normal and I'm not capable of normal things.
("Elizabeth", 2 years since diagnosis)You see everyone else…It's easy to assume everyone else is living a perfect life, that they're not worried about anything.

| Positive additions to self and identity
Despite everyone reporting some negative impact from their LTCs on their sense of self and identity, seven participants reported some ("Anna", 10 years since diagnosis) ("Samantha", 4 years since diagnosis)

| Accept yourself, who you are and your limitations
Nine participants mentioned that reaching a point of acceptance about the condition, about your limitations and about your changed identity and lifestyle is essential to living well with a LTC. This was described as a process that had to be learnt over time and participants described going through various stages before reaching acceptance (eg denial, anger, depression).
Sometimes I need a reminder and I'll get really cross with myself and say…"you need to do this, you need to do that", and I've learned the hard way that I need to…say "No, you've got your limitations and you just need to accept it".
("Elizabeth", 2 years since diagnosis)…something that I finally realised, it's just part of me. I think a huge part of people getting used to LTCs is you kind of just have to accept that it is a part of you…Until you've accepted yourself, and that it's a part of you, you're not going to move on and you're really going to struggle.

| More professional mental health support
More mental health support, such as counselling or therapy, was suggested by five participants, with emphasis on early intervention soon after diagnosis, for example: should get involved much earlier on.

| D ISCUSS I ON
The aims of this study were to explore the experience of living with LTCs in young adulthood, and what helps to live well with LTCs. The overall aim is to inform future strategies (that are not condition-specific) to help young adults live well with LTCs, with the aim of improving well-being, and promoting a positive sense of self and identity. important to note that this sub-theme is only applicable to young adults diagnosed from birth/infancy, perhaps excluding for example congenital illnesses such as cystic fibrosis, where there is no prior period of 'wellness' or perceived 'normality' 38 ). Over time individuals reconstructed their identity and described having brought themselves to a point of acceptance. This has been found with older adults with LTCs (eg Refs 11,12 ) and with young adults with specific conditions such as diabetes 24 and lupus. 26 Despite not having a prior period of wellness/'normality', the importance of acceptance has also been identified amongst young adults with cystic fibrosis. 14 The current study suggests that this is the case for young adults across a range of LTCs.
A particularly unique finding for young adults, as opposed to older adults, is that eight of those in the present study also made comparisons between 'normal' others and their 'abnormal' self. In some cases, their perceived abnormality was in relation to other people in general, but for many it was in comparison with other 'normal' young adults. 'Normal' for young adulthood was seen as meeting societal expectations for this life stage, such as being energetic and healthy and achieving milestones such as marriage, having children, establishing a career and gaining independence from parents.
This was also highlighted through comparisons to older adults for whom ill health was viewed as more expected/accepted. It has been postulated that this added challenge to identity reconstruction exacerbates the negative mental health implications from LTCs for young adults. 23,39. The present findings fit well with the concept of biographical disruption 28  One of the most dominant suggestions made for helping young adults live well with LTCs was to reach a point of acceptance. This was described as a process that had to be learnt over time and participants described going through various stages before reaching ac- and the feasibility of rolling-out such a service. In the meantime, this study has provided an essential first step in identifying the need for, and current lack of, sufficient professional mental health support for young adults with LTCs and what aspects this support should encompass.

CO N FLI C T O F I NTE R E S T
The authors declare that there is no conflict of interest. also not to compare ourselves to "well" others.

Ceri
A lot of what "Samantha" talked about was related to her being a mother, which I cannot yet relate to. It was very informative to hear from this perspective, and to consider the added challenges and benefits of having a young child whilst managing a LTC. I was particularly moved by the role that her daughter has played in helping her to "keep going" through her depression. I did relate to a number of other things that "Samantha"  "Luke" was very friendly but appeared quite shy and slightly apprehensive about the interview and asked a few questions before we began. I reassured him that he didn't have to answer any questions he did not wish to and explained the purpose of the research. I really admired Luke's positive attitude towards his LTC, which has not always been the case for me. Luke did not express as many "negatives" as some other participants and seems to have gained a very admirable attitude towards his condition. Perhaps this is partly due to being diagnosed at such a young age (age 3)? He attributes it to his parent's positive approach/attitude towards his condition that they instilled in him from a young age.