2.1. Study Design

Due to the limited understanding of individuals’ experiences of being under W&W, a qualitative design was deemed appropriate. A “critical realist” epistemological stance was taken by the researchers. This stance recognises that a social reality exists but that individuals only access this reality through the lens of their own experiences and perceptions [21]. Data were collected through individual semistructured interviews conducted at two time points, six months apart.

2.2. Sample

The study invited individuals to participate if they (a) had received a diagnosis of a HC more than six months ago, (b) were assigned to the W&W pathway, (c) were aged 18 years or older, and (d) were able to give informed consent. Individuals were excluded if they had another primary cancer diagnosis for which they were receiving treatment, were not fluent in conversational English, or had a diagnosed memory impairment that would impede their ability to reflect on a six-month period.

All participants were recruited through advertisement on Facebook groups, using self-select sampling. Interested eligible individuals were provided with study documents. The study recruited 15 participants. Participants’ self-reported cancer diagnoses and treatment pathways were not formally verified.

2.3. Data Collection

All participants provided written consent prior to being interviewed. At the beginning of each interview, assurances of confidentiality and its limits were given. All interviews were conducted by the main researcher (KR), who had undertaken doctoral-level training in qualitative research. All interviews were recorded and took place remotely, either via video call (n = 9 at T1, n = 7 at T2) or telephone call (n = 6 at T1, n = 5 at T2), depending on participant preference. Participants were asked to complete the Hospital Anxiety and Depression Scale (HADS) [22] at both time points to give an indication of the psychological distress in the sample. To contextualise the data collected, demographic information was also gathered during the first interview.

The interview schedule at time one (T1) aimed to explore participants’ experiences of living under W&W, including what had been helpful and unhelpful in supporting their psychosocial wellbeing since diagnosis. The second interview (T2) followed a similar schedule, but with a focus on the previous six months. Interviews at T1 ranged from 35 minutes to 60 minutes (n = 15). Both interview schedules are available to view in the supplementary files (available here). Interviews at T2 ranged from 20 minutes to 70 minutes (n = 12). All interviews were transcribed verbatim in full and were pseudonymised to preserve confidentiality. Data were transcribed using the University of Nottingham’s Automatic Transcription Service (GDPR compliant) and the main researcher (KR) checked the accuracy of each transcription against the original audio recording. In line with the General Data Protection Regulation 2018 and the Data Protection Act 2018, anonymised interview transcripts and researcher notes were stored securely on an encrypted, password-protected USB drive.

2.4. Data Analysis

Thematic analysis (TA) following a reflexive guide [23] was applied to the data through both a semantic and latent approach. Initially, inductive analysis was adopted to generate themes of shared meaning directly from the data. The data at each time point were coded separately. A pattern-oriented longitudinal analysis (POLA) was then applied to the data [24], allowing for both within and between participant comparisons to be made across time points. Finally, a deductive codebook approach was also taken to consider how the data fitted with existing theory and literature relating to psychosocial needs, chronic illness, and knowledge of unmet needs in those with PCa under W&W. Consequently, the codebook included codes to denote the components of SDT [18], PACID model [7], and needs identified in individuals with PCa under W&W [16].

Qualitative trustworthiness guidance [25] was followed throughout the analytic process to ensure methodological quality. Accordingly, reflective notes and supervision were used to exercise transparency and recognise biases in analysis. The main researcher (KR) approached the study from the position of having worked in Psychology departments of physical health settings. The researcher was aware of how their beliefs around the impact of physical illness on psychological wellbeing may have influenced how they interacted with individuals in the study and, subsequently, how individuals responded to the researcher. Theme development was supported through discussions of coding and code grouping amongst the research team.

3.1. Sample Characteristics

A total of 15 participants were interviewed at T1 (12 females) and 12 at T2 (nine females). Out of three individuals who did not complete a second interview, a suitable time could not be found with two, and the third did not feel physically well enough. The mean average age of the sample was 62 years (standard deviation = 6.7 years), and the sample was predominantly White British. Table 1 details the demographic information of each participant, and Table 2 shows the average responses to the HADS [22] at each time point.

3.2. Inductive Analysis

Four related but distinct themes were constructed: “Understanding the impossible: cancer that does not require treatment;” “Importance of peer connection;” “Sense of abandonment under watch-and-wait;” and “Trying to live after COVID-19.” Some themes also contained subthemes. Across all, the overarching theme of “The psychological battle of watch and wait” was evident, with participants frequently using words such as “battle” and “fight” to describe their psychological experiences. The importance of peer connection and the process of moving forward through COVID-19 mirror findings in the wider literature [26, 27]. Therefore, the present paper focuses on the two more novel themes.

3.3. Deductive Analysis

Analysing the data using a deductive framework generated an understanding that people living with IHC have some similar and some unique needs compared to people living with PCa under W&W. As in the PCa review [16], unmet emotional needs were frequently reported, with participants desiring support to manage the psychological burden of living with cancer without requiring treatment. Similarly, many commented on receiving inadequate information. This relates to understanding their diagnosis, W&W, and receiving results from blood tests and scans. In contrast, only a minority shared that they found the information confusing or inaccurate. Those that did most commonly referred to viewing misinformation online rather than receiving confusing or inaccurate information from healthcare professionals.

In congruence with the inductive findings, information needs were mostly met through charities and peer connection. Peer needs were the fourth domain of need found in the PCa literature, and mapping onto the theme generated through inductive analysis, peer needs were found to be frequently reported in the present sample. This need was most commonly met when individuals were able to join online forums or attend support groups. Finally, unlike in the PCa review, exercise needs were infrequently identified in the present sample. Whilst several discussed making attempts to live healthier, such as making changes to their diet and increasing exercise, no reference to needing or desiring support with exercise was made, indicating a difference between HC and PCa patients under W&W.

All three basic needs of SDT [18] were found to map onto the data and inductive analysis. Represented in participants feeling abandoned by healthcare, autonomy appeared to be forced upon individuals through their need to self-monitor and self-manage. On the other hand, individuals shared experiences indicating they lacked autonomy, with decisions around treatment typically being made solely by healthcare professionals, leading to a sense of having no control over their future. The described experiences of autonomy were also found to fit particularly well with aspects of the “process” domain of the PACID model, such as managing the emotional impact of uncertainty and self-managing the physical symptoms of illness [7].

Individuals reported feeling forced to become experts in their own condition, and this was interpreted as a need to feel competent in understanding and monitoring the cancer. The extent to which individuals reported feeling competent varied across the sample, but rarely across time. Several individuals reported having medical backgrounds, and some also described having supported family members to live with HC. The impact of such contextual factors on how competent individuals may be is helpfully considered in the first domain “antecedents” of the PACID model [7]. Specifically, the space allowed for consideration of how prior knowledge (e.g., from prior medical occupation/familial experience of HC) may impact an individual’s perception of HC and their ability to comprehend and feel competent in monitoring their condition.

Finally, the need for “relatedness” was found across participants and consistently across time, mapping strongly onto the inductively constructed theme of needing peer connection. In contrast to peer connection needs, which were often met, individuals rarely reported feeling connected to their healthcare teams. The need for relatedness with peers was also amplified by friends and family struggling to understand their diagnoses. The “interpersonal” domain of the PACID model [7] was found to consider relatedness, and this was explicitly in terms of both peer connection and connection with friends and family, adding to its pertinence to both the data and SDT. However, the applicability of the PACID model would be enhanced further by an additional component that considers relatedness with one’s healthcare team.

4.1. Information and Communication Needs

The incomprehensibility of having cancer that does not require treatment was commonly discussed and remained prevalent across time points. The theme highlighted the lack of information participants reported receiving both at diagnosis and throughout the W&W process. This was exacerbated further by poor communication with healthcare teams and little opportunity to ask questions; a finding in line with previous research [28]. These unmet information and communication needs become particularly problematic when considered in the context of individuals who are self-monitoring under W&W. This is a responsibility that requires them to understand their condition and how cancer progression may present [29]. This need was considered as “competence,” as identified in the basic needs of SDT [16]. Increasing individuals competence in understanding and managing cancer has been found to reduce levels of anxiety and depression and decrease physical symptoms, such as fatigue [30]. In the wider health literature, increased health competence through intervention was associated with increased quality of life [31]. In line with these findings, individuals in the present sample who engaged with blood cancer charities, and particularly webinars, more commonly reported that their information needs were met.

Managing others’ expectations of what a cancer diagnosis means (i.e., having treatment/looking “ill”) was experienced as burdensome, and individuals expressed a desire for greater awareness in the general public. It is possible that increasing patients’ competence would also aid their confidence in explaining their diagnosis and its chronicity to others. However, further research is required to assess this or whether alternative strategies would best meet this need (e.g., through the development and distribution of information resources).

Unmet information and communication needs were also understood to underpin individuals feeling abandoned by their healthcare teams. Specifically, abandonment was perceived through individuals feeling forced to take responsibility for their own health and the belief that Haematology teams were concerned only with blood test results. This appeared to result in a sense that their wider wellbeing was neglected and resulted in feelings of anxiety and anger. Interpreting the sense of abandonment through the SDT perspective led to the notion that autonomy was forced upon some, and went unmet for others, with both outcomes relating to increased psychological distress and a reduced sense of control. Research has reported that good patient-clinician communication is vital for promoting patient autonomy, ensuring that decision-making processes are collaborative with individuals feeling well informed [32]. Such an experience was not reported by the sample, and therefore, this holds implications for how healthcare teams could adapt their communication to meet individuals’ needs in the future.

4.2. Emotional Needs

Across the sample, increased psychological distress and limited access to psychological support were described, findings in line with previous research [14, 16]. It is also notable that participants made very limited reference to the role of family members and friends in providing support, likely reflecting the limitations of informal support provided (with the exception of peer support). Unmet emotional needs were identified in desires to discuss the psychological impact of living under W&W through professional counselling. Individuals who had received formal psychological support (e.g., CBT) described having to seek this out for themselves rather than through signposting by their Haematology team, further demonstrating the burden of unmet informational needs.

Desires for emotional support should be considered in the context of IHCs being most frequently diagnosed in older adults (i.e., those aged over 65 years) [1]. Older adults’ mental health is suggested to be particularly at risk of being overlooked, with depressive symptoms being normalised and consequently not treated [33]. When coupled with the understanding that older adults are less likely to seek emotional support themselves due to barriers such as fearing stigma [34], it becomes clear that it is imperative for Haematology teams to follow routine procedures for assessing psychological wellbeing [35] and signposting to support as necessary. In addition, recent findings suggest that cancer care staff feel inadequately trained to support patients’ psychological wellbeing [36]. Future research could explore the impact of brief psychological interventions training for Haematology staff on patients’ emotional support needs.

4.3. Peer Needs

The benefits of peer connection and formal peer support have been well documented across psycho-oncology [37] and chronic health literature [38]. Further, peer connection features as fundamental in theories of human need, as demonstrated by the inclusion of “relatedness” in SDT [18] and “belonging” in Maslow’s hierarchy of needs [39]. Surprisingly, however, the finding has not previously been reported in the IHC literature. In contrast, Swash et al. [18] reported on the potentially problematic nature of peer connection in people with HC, given that it can highlight the graveness of one’s own diagnosis. However, in the current study, peer connection was found beneficial not only for meeting specific needs of feeling connected to peers but also for gaining information and emotional support from those in similar positions. Knowledge in this area would be advanced further through research specifically exploring the barriers and facilitators to effective peer support in the IHC population.

4.4. Implications, Limitations, and Future Research

Whilst it is not an aim of small-sample research to produce generalisable findings [24], the breadth of HC diagnoses covered through recruitment means that findings can be considered in the broad context of IHCs. This builds upon previous findings in diagnostically homogenous populations [28]. In addition, the longitudinal nature of the research allowed for exploration of how needs change over time. The finding that needs found to be unmet at T1 largely remained unmet at T2 contributes to understanding that, without specific psychological intervention, unmet needs, such as emotional and information needs may remain relatively stable over time in this population. This stability strengthens the argument for the development of interventions specifically targeting unmet needs to support patients’ psychological wellbeing.

Previous research has mostly used SDT [18] to explain motivation and health behaviour in people with chronic health conditions [40]. The present study found the theory’s posited basic needs map onto the needs reported by the sample, advancing theoretical understanding of how the model can be used to consider the unmet needs of individuals with IHC. In addition, the applicability of the PACID model [7] was explored. Whilst this model focuses on psychosocial adaption and not specifically psychosocial need, the domains covered were found to fit well with both the needs and experiences of people living with IHC. Taken together, the findings indicate that literature using SDT to improve the wellbeing of individuals living with chronic conditions may well be applicable to those living with IHC. This also holds clinical implications for healthcare professionals considering how service processes can be adapted to promote psychological wellbeing, with the SDT and wider chronic illness literature base being available to draw upon.

Several limitations are important to note. Firstly, all participants were recruited through social media support groups, and therefore, the study findings were likely skewed towards the views of those who valued and accessed peer connection. If recruitment had occurred through healthcare channels, it is possible that opposing experiences of unmet or undesired peer connection needs may have been heard. It is possible that wider recruitment may have also resulted in a more clinically distressed sample, since satisfied peer needs have been found to reduce distress in people with cancer [41].

Aside from diagnoses, the study recruited a relatively homogenous sample. Firstly, the recruited sample was predominantly women, despite IHCs being more commonly diagnosed in men [42]. This is particularly pertinent given that men with HC have been found to report significantly fewer unmet needs compared to women [43]. Similarly, the sample was relatively young compared to the average age of those diagnosed with an IHC, and this may also hold implications for biases in the types and frequency of needs reported here. Secondly, 14 out of 15 participants identified as White British. Whilst research indicates people from White backgrounds are at the highest risk of developing HC [44], racial discrimination has been found to have a significant negative impact on individuals’ health outcomes [45]. This holds implications for potential differences in levels of unmet physical health needs between individuals from “White” and “Black and Minority Ethnic” backgrounds. Future research should explore these differences further and consider any potential differences during intervention design.

Finally, the decision not to use a formal needs measure, such as the Holistic Needs Assessment [5], could be considered a limitation. Such a tool was not used to avoid influencing participants’ own perceptions of their needs. However, the completion of the tool after interviewing may have allowed for clearer comparisons to be made between the present findings and extant literature. Further, using a mixed-methods approach may have enabled examination of the applicability of such measures, which are most commonly developed in people with solid-tumour cancers [47], rather than people with HCs. Given the findings that people with IHC may have some unique needs, it may be beneficial for future research to examine the applicability of needs assessments further and work on developing a HC-specific measure if deemed necessary. Meanwhile, individuals with IHC may benefit from healthcare professionals taking a qualitative, person-centred approach to needs assessments, wherever possible, in addition to quantitative questionnaires.