Abstract
Some time and temporarily scholars suggest that separation is one of the most arduous of human experiences. Given what is often a long history of unpleasant relationship endings, the clients of therapy themselves may be particularly susceptible to painful ruptures. Informed by a qualitative approach, I describe and explain how 10 Canadian children living with cystic fibrosis and their caregivers felt at the end of a research-based counselling support programme. At the programmes’ end, the participants reluctantly but unquestioningly accepted the decision. However, they expressed their desire for ongoing and continuous therapeutic opportunities to help them manage weighty emotional issues, such as living with grief and loss. I theorize the findings using time and temporality scholarship. Although academics and clinicians regard them as separate pillars, I suggest that participants experience considerable overlap between “research” and practice”. Further, I propose that researchers and clinicians pay attention to therapeutic endings as an important issue in research. Finally, using a time and temporality lens, I use the findings to discuss how therapeutic work might better be regarded as occurring in the space of psychological time, rather than linear time. In so doing, it is evident that time and temporality are critical to how young people with CF and their families experience therapeutic endings.
Introduction
‘Separation is one of the most challenging human experiences’ (Schlesinger, 2005). In this study, I raise the question of whether terminating research-based counselling programmes for chronically ill patients is a quandary that researchers should devote further consideration to. Thus far, the termination and ending of counselling-based research relationships has received scant attention in the literature, if at all. Scholars suggest that loss is at the heart of all human relationships (Magione et al., 2007), and is an inevitable existential human dilemma. Furthermore, counselling by nature is a contrived and instrumental human relationship, rather than a naturally occurring and organic one (Pistole, 1991). Nevertheless, scholars suggest that the termination of counselling relationships can arouse powerful feelings of abandonment and betrayal for counsellors and the patients of therapy alike (Pistole, 1991). In the efficiency-based “society of progress” that characterizes contemporary life, we do not practice the same rituals and observances that helped us to make sense of endings in the past. Thus, we may lack a collective ethos that allows us to end relationships graciously (Magione et al., 2007) and be in need of new ways to re-imagine endings (Barth, 2011).
In this study, I discuss the termination of counselling-based research relationships among young people living with cystic fibrosis (CF) and their parents. CF is an ultimately fatal autosomal recessive genetic disease that affects 1/3500 youth. The average life expectancy in developed countries hovers around 45 years of age (CF Canada). After participating in an eight-week counselling programme at the Winnipeg Children’s Hospital in Canada, 10 of the participants engaged in a qualitative study about the counselling experience. To my great surprise, the participants were reluctant to end the study and expressed a desire to participate in ongoing therapeutic relationships. In chronicling the complex interconnection between research, counselling and termination using empirical data from young people living with CF and their parents, I draw attention to how ending these relationships might more importantly be considered by scholars as a current research quandary. Further, previous authors have documented that youth living with CF and those that care for them experience a sense of shortened or truncated time. Given the life limiting character of the disease – and the time consuming nature of treatment – these youth often report that they are “running out of time” (Moola et al., 2011; Moola and Norman, 2011). To cope with this sense of lost time, they often “do things now rather then later” as a strategy to experience their limited and precious lifetime to the fullest. In this regard, the temporal experience of young people with CF appears to support Charmaz’s seminal thesis that illness fundamentally alters the meaning of time (Charmaz, 1993). Thus, given the major temporal dilemmas that CF youth and caregivers face, it is all the more important to use caution and discretion before prematurely terminating a therapeutic programme that may of great psychological importance.
Conceptualizing endings: Review of the literature
There is an absence of literature on the termination of research relationships. Therefore, I drew on the contributions of scholars in the field of counselling psychology, psychotherapy and psychoanalysis to help me theorize the concept of ending therapeutic relationships in a research context.
The issue of terminating relationships of a psychological or psychotherapeutic nature has concerned psychologists for the better part of a century (Younggren and Gottlieb, 2008). Sigmund Freud – the prominent German psychoanalyst – first raised the issue of psychotherapeutic terminations in the 1930s. Although there is a lack of consensus on how and when counselling should be terminated (Younggren and Gottlieb, 2008), in general, the issue is regarded to be very complex. Termination is influenced by the theoretical framework that guides therapeutic work as well as clinical, ethical and practical factors (Davis and Younggren, 2009).
Intense emotional experiences
Scholars suggest that terminating counselling relationships may rouse powerful emotional experiences for patients and counsellors alike. Upon termination, for instance, patients may experience the full range of human emotions, such as anger, grief, sadness and mourning (Davis and Younggren, 2009; Pistole, 1991; Roe et al., 2006; Pinkerton & Rockwell, 1990). While it is not known why termination carries such emotional import, therapists may symbolically fulfil the role of a parent in the life of the patient. When therapists are parentified, patients and therapists may unwittingly replay a “parental metaphor” in the context of counselling. Further, the subjects of psychological inquiry are often those who have already encountered much grief and loss in their own lives (Magione et al., 2007). Therefore, terminating a relationship with a counsellor may result in a painful mirroring of previous life losses in which patients replay other experiences of abandonment, betrayal and unfulfilled dreams. Further to this, the emotional impact of termination is related to the depth of the attachment between the patient and counsellor. While some patients can terminate an attachment with relative ease, the process of ending a therapeutic relationship might be much more challenging for those patients who form deep and unshakable attachments (Schlesinger, 2005). Additionally, both patient and therapist may possess and replay the unconscious fantasy that a therapeutic relationship will never end. Such fantastical notions may similarly add to the emotional import of termination. Transference and counter-transference are other psychological processes that may magnify the emotional experience of terminating counselling. The emotional impact of a terminated counselling relationship may also be as powerful as that of death and loss (Wilcoxon and Gladding, 1985). While terminating psychotherapy is not always negative – and can be associated with positive affective experiences such as pride or a sense of accomplishment – the end of counselling is most often marked by painful and potent affective responses, such as abandonment, loss and mourning.
The passage of time
Further, most counsellors recognize that time – or temporality – significantly influences the process of terminating therapeutic relationships. Schlesinger (2005) explains that different temporal systems influence the termination process. For instance, chronological time – or physical time – is linear and irreversible. Chronological time marches forward and can never be re-lived. Although counselling is arranged according to such chronological, Newtonian time indicators as days, week, or months, the actual work of counselling occurs within the domain of psychological time (Schlesinger, 2005). Psychological time is non-linear, reversible and cyclical. This time system allows the patient to dwindle in time and replay significant events that have already happened. These two radically different time systems often clash with one another in therapeutic settings. The resulting effect is that often, patients have not “finished” their psychological work when therapy ends. In contrast, much therapeutic work continues long after the counselling relationship has been terminated (Pistole, 1991; Schlesinger, 2005). Ending counselling at an arbitrary chronological time indicator – such as a number of months – may result in leaving patients with much unresolved psychological work to process. ‘The physical termination of the counselling bond does not imply the end of the patients work… and does not cure life’ (Pistole, 1991: 388). Rather than viewing the end of counselling as a terminus, Schlesinger (2005) suggests that the therapeutic practice is perhaps better regarded as a life-long learning process that is akin to education. Further, temporal factors influence the termination of counselling relationships in other ways. Most often, counsellors control the temporal boundaries of a counselling relationship (Magione et al., 2007), determining when the therapeutic process will start and end (Davis and Younggren, 2009). Thus, while counsellors are encouraged to use realism and chronological time indicators to establish the temporal boundaries of a counselling relationship (Davis and Younggren, 2009), it is important to recognize that patients may not be ready for ending at these predetermined time points. Rather than terminating counselling after the physical passage of time in a unilateral and unnatural fashion, scholars suggest that it might be important to terminate counselling in a democratic and natural, organic fashion (Magione et al., 2007; Schlesinger, 2005). For instance, the ability to set and achieve goals, tolerate loss, assume multiple roles with flexibility, cope with symptoms, engage in open and honest communication, be less reliant on archaic defence mechanisms, and possess a high sense of security, are perhaps better indicators of patient readiness to terminate a therapeutic bond than a chronological time indicator (Goldberg, 1995; Schlesinger, 2005; Wilcoxon and Gladding, 1985). Time and its complex passage significantly influence the termination of counselling relationships.
Factors that impact termination
Scholars suggest that internal, external and systemic factors influence the termination of counselling-based relationships (Brabender & Fallon, 1996; Gross, 2004; Nelson & Politano, 1993). Internal factors might include a patient’s desire to terminate therapy. External factors might include the relocation of a patient or therapist, illness/death, dwindling insurance coverage, or a patients’ inability to pay for treatment any longer. The emphasis that health providers now place on brief and time limited psychotherapy in hospital environments is a broader, systemic factor that might lead to premature termination. In general, when therapy is terminated due to external or systemic factors that are beyond the patients’ control, patients experience greater distress and a sense that the termination was unnatural (Davis and Younggren, 2009; Vasquez et al., 2008).
A culture that is ill equipped to end
Magione et al. (2007) suggest that the broader North American cultural context may also impact poor termination outcomes. In our efficiency-based and progress oriented late capitalist society, we lack the traditional rituals and observances that were once invoked to aid in the process of ending and separation. Since we lack such rituals and observances, we often hasten endings and separations such that we cannot graciously bid farewell (Magione et al., 2007). A cultural acknowledgement of loss and ending – and ritualized observances to aid the termination of a relationship – might reduce the distress associated with terminating counselling.
Since there is an absence of literature on the termination of research relationships in a counselling context, I turned to the field of psychotherapy and counselling psychology to help me conceptualize the issue of ending counselling. By explaining how it is often an intense emotional experience that is influenced by internal, external and systemic factors, these scholars have greatly advanced our understanding of termination. These scholars have shown us how time and termination are intimately connected, and that “therapeutic work” is rarely complete when counselling ends. A lack of cultural observances to end in our society of progress is another factor that makes terminating hard. Despite the great contributions of these scholars, none have investigated nor theorized the termination of counselling-based research relationships. By investigating how 10 people living with CF and their parents felt at the end of a counselling-based clinical trial, in this article, I attempt to address the undertheorized nexus between counselling, ending and research.
Research design and methodology
The qualitative study that I report on here was part of a broader clinical trial at the Winnipeg Children’s Hospital in Manitoba, Canada. In this clinical trial, a team of researchers investigated the efficacy of physical activity counselling for pediatric patients with CF in Manitoba, Canada. These results have been reported elsewhere (Moola et al., 2016). At the end of the clinical trial, 10 pediatric patients and parents elected to participate in a qualitative study on the experience of psychological counselling. The desire for ongoing, continuous therapeutic relationships was a tangential and novel finding from the qualitative study that I discuss and interpret here.
Methodology
I adopted a thematic analytic methodological approach in this study (Braun and Clarke, 2006). While the matter is debated, some scholars suggest that thematic analysis is both a methodology and a method. Thematic analysis is informed by post positivism and social constructionism (Braun and Clarke, 2006). As such, thematic analysists tend to adopt a relativist position to thinking about reality, arguing that realty is socially and historically situated, rather than universally given. Interpretivism and social constructionism are other philosophical tenets that may flavour thematic analysis. Thus, the production of knowledge is thought to be co-produced between the researcher and participant. Further, knowledge is thought to be situated in time, place and history (Braun and Clarke, 2006). Thematic analysis is widely used across a variety of academic disciplines. Broadly, it is a way of reading, coding, explaining and interpreting a qualitative data set. Thematic analysts search for broader patterns of meaning in a data set, making attempts to theorize these relationships in the context of existing knowledge.
Method
I employed semi-structured in-depth interviews as the main methodological tool to collect data in this study (Mason, 2002). Based on the existing literature and my previous experiences working with the CF community, I developed an interview guide. The interviews ranged in duration from 35 to 90 minutes. I sought to strike a balance between structure and flexibility during the interview by ensuring that I pursued the spontaneous lines of inquiry that the participants raised (Mason, 2002). The interviews were held in a convenient location for the participants and were audiotaped and transcribed verbatim.
Participants
Ten young people with CF and their caregivers participated in this study, including four youth and six parent/caregivers. The child participants ranged in age from eight to 18 years and had previously been diagnosed with CF. All were receiving care as outpatients in the Winnipeg Children’s Hospital in Manitoba and were medically stable at the time of the study. Caregiver participants varied in terms of socio-economic status, occupation and family structure (married, single, cohabitating, divorced, separated). There was great variation in the participant base in terms of gender, race and culture.
Analysis
I engaged in the following analytic process. First, the data was read multiple times for the purpose of familiarizing myself with the data corpus. After the reading activity, I coded individual transcripts with the view to denoting any frequently occurring meaning units in the transcript (Braun and Clarke, 2006). Frequently occurring meaning units were denoted with a label/code. Secondly, I coded the entire data corpus, with the view to reading and coding across the entire data set. In the third level of coding, I grouped common codes across the data together, into categories. Therefore, codes that occurred frequently across the data corpus formed initial categories. Next, I engaged in analytical refinement by adjusting the codes and collapsing units with semantic affinity into broader themes. Using constant comparison, I refined and crystallized the final themes. In so doing, the thematic analysis captures participants’ experience of counselling (Braun and Clarke, 2006).
Trustworthiness
There is much variation in how qualitative researchers approach the topic of trustworthiness – or validity – in qualitative research (Spalding and Philips, 2007). In general, post-positivist researchers adopt a structured approach toward enhancing quality. In contrast, scholars that work from radical constructivist or postmodern sensibilities, purport that the notion of validity is an artifact of the quantitative paradigm that qualitative researchers often feel compelled to follow. To enhance the believability and authenticity of my account, I adopted some of Lincoln and Guba’s seminal trustworthiness measures. I maintained an audit trail to increase credibility by documenting the entire research process. I recorded field notes to corroborate the findings. While I did not member check, I did discuss how accurately I had represented the finding with a few participants (Spalding and Philips, 2007).
The results of the complete qualitative analysis have been reported elsewhere. Below, I discuss and interpret a single novel finding that was tangential to the study. Specifically, I discuss patients’ and parents’ feelings about the termination of counselling-based research relationship. Specifically, the purpose of this study was to explore how patients and parents living with CF feel about ending a counselling-based research relationship.
Findings
A desire for continuity
All participants reluctantly accepted the decision to terminate the counselling relationship at the end of the study. However, the participants expressed their keen interest to participate in a longer, enduring programme. Yup, they're gonna try and set something up that's a little more permanent at least until this business with my family gets a little more sorted and … I've done counselling and like therapy and stuff before but I've had some like bad experiences with therapists and you know, not being very pleasant … so I'll try again, I kinda need, someone to talk to that's a little more constant I guess. (Ilsa – youth participant)
Emi (parent of two youths with CF) expresses similar sentiments by stating that… ‘Um, I think it would help. If it was something that was more consistent. It would be beneficial in the long-term’.
Further, Ilsa (youth participant) believes that the counselling programme would be more effective if it was longer. The brevity of the CF Chatters programme is a weakness for Isla and others. She states that… ‘I kinda felt like it should be longer, like a couple weeks longer cause it was only three sessions right? Yeah, I think that's pretty much the only thing, is that I wish it was a little bit longer.’ The participants reluctantly accepted the decision to end the research programme, but explained their interest in enduring and continuous therapeutic relationships.
Just being there
While some participants expressed interest in formal psychological assessment and treatment, interestingly, most participants thought that an informal, ongoing programme would be an ideal counselling structure. Consistently, phrases such as ‘just being there when I need you’ or ‘just checking in to see if we are OK’ were articulated by the group. Thus, rather than a formal counselling process, a loose, as “as per needed” long-term counselling method was thought to be desirable. For example, Larkin illustrates the concept of “counselling as needed” by stating: I would say that it would be great to have a counsellor for her to be able to talk to or to keep in touch with when she needs it… I think a counsellor just in general might not be the worst idea there ever was. (parent of a youth with CF)
Emi supports these sentiments by explaining that… ‘like occupational therapy for instance – like we don't use them all the time but when we need them for part of the team, they're brought in’ (Emi, parent of two youth with CF).
In turn, Larkin explains that an informal, supportive and open therapeutic relationship might be particularly helpful over time. Because if you or anyone from your team came in every time Kaitlin had an appointment and said just said “hey how are you doing this time?” And there was that periodic call, like the physical activity call, like “how are things going? Things are going good? Okay.” I don’t know if she understands so much of the value of it (counselling) now, I think she just thinks its neat to have someone to color with but you never know, a year from now, things could be very different and if Giovana (counselor) was still popping her head in or still making phone calls, maybe that would afford Giovana the opportunity to be there for Kaitlin a year from now if something happens, you know what I mean? (parent of a youth with CF)
Thus, although some participants were interested in formal psychological assessment and treatment, most thought that a loosely structured and open therapeutic relationship over time would be the most helpful.
Why we don’t want to end
The participants were reluctant to terminate the counselling programme for a variety of complex reasons. The rationale for not wanting to end therapeutic relationships included several explanations, such as the need for ongoing anxiety management, support during end of life care, enhancing quality of life and reducing exposure to new, “strange” health providers.
For example, Ilana is a single mother to a highly anxious boy with CF. Since CF is a life threatening illness, Ilana feels that ongoing counselling is necessary to help her son better manage his clinical anxiety. They need counseling, because they are y' know dealing with a progressive, degenerative disease and so um like some people might need anxiety pills. I know Anton has to have anxiety medication since he was ten…I'm glad he's on medication like anti-anxiety which he's still on. (Ilana, parent of a youth with CF)
Further, participants felt that ongoing counselling was necessary to manage the burden of having a life shortening illness. Counselling-based support for this deeply challenging and emotional experience was thought to be important not only for the young person with CF, but for the network of family members who care for a dying child and who are left behind after a child passes on. When Ilana’s son learned of the ultimately fatal nature of CF at the tender age of ten, he experienced an emotional and psychological “breakdown” – or a fragmentation in the psyche. Because it may help her son to better manage weighty emotional issues such as death and dying, ongoing psychological support was thought to have merit: He'd be afraid of dying all the time and worrying would make him sick more, y' know? … Since ten years old, he became aware of what was happening – he had a real kinda break down, we had to put him into psychiatry…psychologist … well, it was hard for him because that's when he realized "my life is changing and I'm different, I don't know how to deal with this". (Ilana, parent of a youth with CF)
Emi’s commentary illustrates that ongoing psychological support to deal with issues such as death and dying should not be directed toward the child alone. Rather, her sentiments illustrate how ongoing counselling might be important for the family members who care for a dying child, and the network of people left behind in the wake of a child’s death. Emi is reluctant to be “cast aside” by the clinical team when her identical twin girls ultimately succumb to the illness. I definitely think it would be beneficial because just like – I have my husband, but sometimes, like I said, there the divorce or if a parent passes away or even if the, um – the child passes. Just having the grievance counselling at the end and knowing that that’s gonna be still there even when, y 'know, your child is no longer a part of the clinic – that you’re not just thrown to the side because you don't have that. (Emi, parent of two youth with CF)
Other participants thought that ongoing psychological support was necessary to bolster a child’s psychological wellbeing and quality of life. Thus, counselling was thought to contribute toward a child’s ability to thrive and experience total wellness…‘I don't think he would have a good quality of life… And um medication and clinical health with counselling really, really helps with him to keep a good quality of life’ (Ilana, parent of a youth with CF).
Don’t be a stranger
Lastly, the participants explained that they face a “revolving door” of health care professionals in the hospital. Because it prevented the development of long-lasting therapeutic relationships, they were frustrated with the high turnover rate in the CF clinic. Since it was thought to shield their child from exposure to new health care providers that are ‘strangers’, ongoing counselling was thought to be important. So, that way, the kids that feel they need it – or the parents that feel their kids need it – it’s there and it’s a comfortable transition, as opposed to asking for help from someone you don’t know. You know who the counsellor is. If you don’t know anything about CF Chatters, it’ll make you feel a little more hesitant, both from the parent’s side and from the children’s having to share. You (the counselor) would have that information to be more involved with the kids and it wouldn’t be just another stranger popping their head in and expecting them to want to open up. (Lyon, youth with CF)
Participants felt that ongoing counselling programmes were necessary for a variety of complex reasons. Managing anxiety, dealing with death and dying, enhancing quality of life and reducing exposure to novel and strange faces in a medical environment were some of the rationales as to why the participants were reluctant to terminate. The findings are discussed below, within the context of the research.
Discussion
In this article, I discuss a qualitative study in which the counselling experiences of 10 children and parents affected by CF were carefully studied. In doing so, I explored how the participants felt at the termination of the counselling programme. Since there is no preexisting literature on how the CF community feels about counselling and its end in the context of research, the knowledge from this study will make a novel contribution toward the literature. In doing so, I attempt to theorize the findings within the context of the literature on therapeutic endings.
The participants expressed reluctant acceptance at the end of the counselling programme. They wanted the programme to go on for a variety of complex reasons, such as anxiety management, quality of life enhancement, dealing with death and dying and having relationships of an ongoing and enduring nature. Unlike previous authors who report a high degree of remorse, emotional upset and anger by patients when counselling ends (Pistole, 1991; Younggren and Gottlieb, 2008), my participants seemed to reluctantly accept this decision without undue emotional upset. Rather then expressing sadness or remorse, they explained why they wished that the counselling would not end.
That participants reluctantly accepted the unilateral decision to end the counselling programme might reflect several hypotheses. For example, the brevity of the programme might have prevented the development of strong therapeutic relationships and alliances that could have resulted in emotional upset once severed. Alternatively, since patients and parents affected by CF are already familiar with a “revolving door” of researchers and health providers anyways, it is likely that they simply accepted the end of the programme without question. Indeed, exposure to “many strange faces” in the hospital might be a ubiquitous part of participants’ experiences in medical institutions, so much so that it is taken for granted and accepted as “just the way things are”. Thus, rather than expressing great emotional distress at the termination of the programme, the participants reluctantly accepted the decision while also explaining that a longer programme might be more effective.
Further, while democratic decision-making about termination is recommended in the literature (Magione et al., 2007; Schlesinger, 2005), the CF Chatters programme had a predetermined termination date. Thus, termination was a unilateral decision made by our research team. Although democratic decision-making about termination should feature in future counselling programmes with patients, research programmes are so often dictated by external timelines or funder’s decisions. This might complicate a more democratic decision making process about when to end.
Further, the participants suspected that they would have to face ongoing issues of a psychological nature well after the end of the programme, such as managing anxiety, dealing with death and dying, or maximizing quality of life. In doing so, they profoundly illustrated the central concept from the termination literature that psychological “work” is rarely ever complete at the termination of a therapeutic relationship. There appears to be a strong disconnect between when counselling ends and the work that participants still have to do. Thus, the participants drew attention to how psychological work might be better conceptualized as an ongoing process, rather than a destination point or arrival. They also illustrated the concept of “psychological, process” time rather than linear clock time (Schlesinger, 2005) in that their experience of the programme did not accord with fixed and quantifiable temporal points. In so doing, the results from my study strongly accord with the evidence that psychological work goes on well after the termination date and occurs in “psychological time structures” rather than linear ones (Schlesinger, 2005). Rather than a Newtonian and physical time structure, counselling appears to occur in the space of process time (Adams, 1990). Illnesses like CF also appear to alter the meaning of time (Charmaz, 1993).
Interestingly, while the participants regarded formal psychological assessment and treatment as important, they advocated for an ongoing, loosely structured and informal counselling relationship. Consistently, phrases such as “just dropping in to say hello” or “checking in” were used to describe their preference for an unorganized and loosely structured counselling scheme. It is unclear as to why patients prefer informal rather than formal ongoing counselling programmes. However, researchers and clinicians have consistently documented just how time consuming and burdensome treatment may be for young people living with CF. Further, since CF patients often feel that their time is severely compressed and shortened by the life-limiting nature of the illness, they tend to use their time wisely for what are regarded to be the “most important” pursuits. Given the time consuming quality of treatment and the life shortening nature of CF, patients and parents might prefer a loosely structured and open counselling format, in which they dictate the time and place. Again, this testifies to the fact that often, patients and families want to have input and choice in a more democratic decision making process about the duration and frequency of counselling (Magione et al., 2007; Schlesinger, 2005). Future researchers should continue to investigate different counselling time structures and arrangements. Efforts should be made to select counselling programmes that are most sensitive to the temporal burden that this population already faces.
Patients and parents desired ongoing counselling opportunities to help them manage issues such as anxiety, death and dying, and bereaving a child that has passed on. To manage these weighty emotional issues, they felt that ongoing counselling was needed not only for their child but also for themselves. Thus, the patients in my study expressed interest in long-term counselling as a means to manage ongoing mental health concerns and issues. The high prevalence of clinical and subclinical mental health issues among CF patients is well documented. For example, this population experiences a higher prevalence of depression, anxiety, post-traumatic stress, school related challenges and behavioural difficulties (Berge et al., 2007; Bluebond-Langener, 1978). To better manage the high prevalence of psychosocial morbidity in this population, future researchers and clinicians should consider integrating ongoing counselling services into routine clinical care. Further, our patients considered counselling to be important not only when a child is ill, but also in the wake of a child’s passing. Indeed, grief and bereavement experts have consistently reported that bereaved caregivers desire support both during the child’s life and after death (Coyne, 1997). Thus, CF centres should consider the importance of ongoing counselling during the entire illness journey, which includes the expanse of time that occurs after a child has passed away. It is imperative that the perspectives of central stakeholders – children with CF and those that love and care for them – be heard when comprehending the role and importance of therapeutic relationships. Indeed, these patients and caregivers call for ongoing therapeutic support throughout the entire process of life, death and the afterwards with CF.
Participants desired ongoing counselling in the CF clinic to reduce their exposure to the “revolving door” of health providers – or high turnover rate – that characterizes clinical practice today. Patients and families felt that they are often exposed to strange and novel faces in hospital environments. Further, they did not feel comfortable “opening up” and making themselves emotionally vulnerable to strangers. In contrast, establishing an ongoing relationship with a familiar counsellor was preferred and is consistent with the contemporary counselling termination literature (Davis and Younggren, 2009; Wilcoxon and Gladding, 1985). This is a novel finding that has not been reported elsewhere. The fiscal constraints in the Canadian health care system today might be leading to higher health provider turnover rates. Researchers and clinicians might consider studying how the evolving and ever changing nature of the health care system is impacting participants’ experiences.
Further, although the study reported here focused on a research-based counselling programme, it is evident that patients confounded and conflated the terms “research” and “clinical practice”. We so often discuss “research” and “practice” as though they are distinct and categorical terms. However, our participants supported the findings of other scholars by indicating that they often conflate and confuse research and practice (Darbyshire et al., 2005), and are not always able to distinguish between the two domains. Indeed, since patients and families already have extensive and prolonged medical experiences in hospital institutions, conflating research and practice is only logical. In addition to continuing to educate patients about the difference between research and practice, health providers and researchers should be aware that patients often conflate the two categories and that there is much overlap in the experience for participants.
Conclusion
Vasquez et al. (2008) state that… ‘although endings are a part of life, they are infrequently recognized and poorly mourned’. Loss – and the end of relationships – lurks in the background of all human interactions. The clients of therapy themselves are often those who have already experienced a tremendous amount of loss in their own lives (Pistole, 1991). Fragmented relationships, the loss of loved ones, or unfulfilled dreams often characterize the experiences of those patients who come to be involved in therapeutic encounters. In this study, I adopted a thematic analytic qualitative approach to investigate how young people living with CF and their parents in Manitoba, Canada felt at the end of a research-based counselling programme. At the programmes’ end, the participants passively accepted this decision, demonstrating no undue negative affect. However, the participants expressed a strong desire to experience enduring therapeutic relationships of an informal nature. Since they have to manage issues of heavy emotional import – such as facing death and dying, managing anxiety, or trying to acquire a good quality of life in the context of a chronic illness – they felt that ongoing and enduring therapeutic encounters would be particularly beneficial. Further, the participants wanted a relationship with a familiar counsellor on an ongoing basis, to prevent them from exposure to new and strange faces in a clinical environment. Based on my findings, researchers might also conceptualize the “end of research” as an issue that negatively affects the participants on whom research is conducted. Further, it is evident that there is more overlap and confluence between the pillars of “research” and “practice” for the participants that live these experiences. Although funding bodies and external deadlines invariably dictate when research starts and stops in the contemporary research climate, it is evident – at least from the perspective of young people with CF and those that care for them – that participants are reluctant to end the therapeutic relationships they have made, and express a strong desire to carry on.
Footnotes
Author's Note
Fiona Moola is now a research scientist at the Holland Bloorview Kids Rehabilitation Hospital and an Assistant Professor at the Dalla Lana School of Public Health, University of Toronto.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by Research Manitoba's operating grant program.