Factors That May Continue to Impact a Mother’s Emotional Well-Being Once Her Child’s Treatment for Cancer Has Completed and Their Implications for Ongoing Support

Method

After gaining permission, five participants (P1–P5) were recruited by advertising on The Joshua Tree’s website (a children’s cancer charity; www.thejoshuatree.org.uk), together with their Facebook and Twitter pages. Only five responded to the adverts. There was deliberately no time restriction regarding how many years the child had reached posttreatment as we wanted to explore how varied this was in relation to the respondents. We did not include bereaved mothers. At the time of study, the child needed to be well (i.e., not on active cancer treatment or on treatment for relapse) and posttreatment. An information sheet was provided. Interview questions were given in advance of the session taking place. A consent form was signed by each participant. Participants had an opportunity, if they wished, to member-check their transcripts. Everyone was offered a debrief session postinterview to ensure they had the opportunity to talk through anything that may have been stirred up for them during the interview process. The questions included are as follows:

Tell me about how you felt leading up to your child’s treatment completion.

The semistructured interviews were recorded, transcribed verbatim, and analyzed using Interpretative Phenomenological Analysis (Smith et al., 2009). This method is concerned with personal perception rather than with the formation of objective statements and seeks an insider perspective. A small sample size was used to enable an in-depth understanding of the phenomena. The findings add the voices of the participants, giving the data a rich texture.

Findings

The data from the five participant interviews are presented under the following superordinate and subordinate themes (see Table 1).

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Table 1.

Superordinate and Subordinate Themes.

Superordinate theme	1	Contextual data
Subordinate themes		1.1	Type of childhood cancer
		1.2	Age of child at diagnosis
		1.3	Length of treatment
		1.4	Amount of time since completion of treatment
Superordinate theme	2	Feelings leading up to treatment completion
Subordinate themes		2.1	Mixed feelings
		2.2	Importance of end date
		2.3	Fear of relapse
Superordinate theme	3	Feelings since finishing treatment
Subordinate themes		3.1	Changed self
			3.1.1	Philosophical self
			3.1.2	Emotional self
		3.2	Longing for normality
		3.3	Sense of abandonment/limbo
			3.3.1	Of self
			3.3.2	From hospital
			3.3.3	From friends
		3.4	Underlying continued fear
		3.5	Effect on siblings
		3.6	Side effects of treatment
		3.7	Hope
Superordinate theme	4	Support
Subordinate themes		4.1	Recognition should really access support
		4.2	Wanting to help others

Superordinate Theme 1: Contextual Data

Superordinate Theme 2: Feelings Leading Up to Treatment Completion

Superordinate Theme 3: Feelings Since Finishing Treatment

Superordinate Theme 4: Support

Participant two explained that her support came from her family and that seemed to be enough. She did acknowledge, however, that counseling would probably help.

We have had such a good network of family and friends that have just been our savior really and have been there for us. (P2)

Discussion

It is clear from both the literature (e.g., Ljungman et al., 2018; Wakefield et al., 2011) and the data that transitioning from treatment to after-care, particularly for mothers, despite the expectation of initial relief, is also accompanied by very mixed feelings (P1, P2, P3, and P5). There are elements of both elation and fear. However, the end date is still an important milestone, that, whether celebrated or not, remains a clear memory for mothers (P3 and P4). Fear already appears to be present before treatment has completed (Rodriguez et al., 2012). These feelings link very closely with concern about the disease returning (P1, P2, P3, and P5).

Joy doesn’t appear to be an instant and natural feeling once the cancer drugs are stopped. It takes time to feel safe after such intensive and life-threatening procedures (Vrijmoet-Wiersma et al., 2008). In-fact, only one participant talked about it being behind them now (P2). Instead, the data encompassed the notion of a changed-self. Participants spoke positively about not worrying about trivial things in life (P5) or having strengthened relationships as a result of their experience (P2). There is also a focus on wanting to help others (P1 and P3). This concurs with Barakat et al.’s (2006) notion of posttraumatic growth and with Hone’s (2017) exploration of resilience. Getting back to a sense of normality was also intimated. However, this doesn’t always happen straight away (P2). The data also concur with Earle et al.’s (2007) findings that families accept a different normal, with a changed perception of what is now classed as normal. The data here, however, also show an element of grief for a previous life that has now gone forever (P1 and P4). There also appears to be an expectation from the wider community that once treatment has finished, everything can now go back to normal, and this causes frustration (P1 and P4).

The element of experiencing joy does seem to be overshadowed by a frequent and overwhelming sense of fear and distress (P1, P3, P4, and P5). The disruption to the whole family group when a child is going through treatment for cancer is clearly extensive (Zheng et al. 2018). Often, children’s physical and emotional symptoms of distress continue far after active treatment has completed (Li et al., 2010), and this affects a mother’s own emotional well-being. Their strong emotions can continue posttreatment and can often be debilitating (P1 and P4). There is also a real sense of abandonment, both from the hospital (P1, P2, P4, and P5) and from friends, which causes distress (P1, P4, and P5). The marked decrease in the number of medical visits as the hospital routine changes, results in the move away from the security blanket of the hospital setting when posttreatment status is reached. Instead of having the expert medical team on tap, Kazak et al. (1997) explain the associated parental fear when their child comes down with a cold or displays symptoms that were closely linked to diagnosis (e.g., paleness) leading to their need for reassurance (P2). In relation to friendships, there was a lack of understanding by their support network and caused significant distress (P1, P4, and P5). This concurs with Norberg and Green’s (2007) research. Instead, it was explained that different friendship groups tended to form after diagnosis (P1, P3, and P5). Support was often gained by families who were experiencing similar difficulties and this became mutually beneficial. Strong emotions were also associated with abandonment, not of others this time, but from the mothers themselves, in relation to caring for siblings (P3, P4, and P5). Alderfer and Kazak (2014) recognize that siblings are often affected by a childhood cancer diagnosis. This clearly resonates within this study. Feelings of guilt and sadness (P3) and a sense of abandonment (P3 and P4) have been mentioned, together with noticeable changes in sibling behavior (P5). As side effects of treatment are common, new medical concerns continue to be a big focus posttreatment (P1, P3, P4, and P5). The data show that after overcoming one hurdle, four of the five children were faced with new difficulties. This is clearly shown to have an impact on the mothers’ emotional well-being. Cancer was frequently seen as secondary (P1, P4, and P5). The recognition of changed lives was very evident (P1, P3, P4, and P5), and all possessed an underlying sense of sadness that can readily be identified with strong feelings of loss and sorrow. Continued fear posttreatment seems to link with an avoidance or blocking of feelings but also a feeling of hypervigilance (P1, P3, and P5). Bruce (2005) explores this in relation to posttraumatic stress symptoms. Uncertainty of what the future will bring seems also to link with their feelings of being in limbo (P1 and P5). Ljungman et al. (2018) focus on emotional avoidance. There is a sense that this is a necessary coping mechanism during the treatment phase. However, if this behavior continues posttreatment, there is a possibility of maladaption. Blocking out pain was a recurrent method of coping (P1, P3, and P5).

It was clear that four of the five participants would definitely benefit from further support to process their issues. There was a recognition from all participants that they could probably benefit from talking to someone. However, they all put their children’s needs before themselves. As support was not readily available or easily accessible posttreatment, there was a tendency to believe that they just had to keep on pedaling (P4). Stuber et al. (1996), in recognizing the debilitating effect of posttraumatic stress symptoms, conclude that giving parents an opportunity to discuss psychological concerns may help to reduce levels of anxiety and distress. Wakefield et al. (2011) clearly acknowledge the importance of psychosocial interventions to help alleviate fear of recurrence, physical and emotional fatigue, loneliness, social isolation, and parenting issues (all evident in this study). However, they later note that it is not easy asking for help (Wakefield et al. 2013). The data demonstrate that making counseling support available in this way so that mothers don’t have to search for help would be extremely valuable, not just during the transitioning to after-care services, but also at any time posttreatment, without stipulating a time limit. Although Wakefield et al. (2015) and Wikman et al. (2018) show that the need is there, the exact type of support is underresearched. Young (2018) does explore counseling strategies for parents during their child’s treatment, but there appears to be a gap exploring the effect of counseling posttreatment. The data indicate that it is not necessarily about length of time posttreatment that is the key to understanding a mother’s emotional well-being, as four of the five participants showed strong emotion and talked about the need to block their feelings in order to cope. It is more about being able to have access to a safe and accepting space, in the form of counseling, to be able to, when they feel ready, unblock what they have buried and begin to face their emotions in order to release all the pain and hurt that has been absorbed while caring for their child through cancer. Although common themes thread throughout all participants’ stories, it was noticeable that each mother focused on her own unique journey. Rather than attempting to fit a mother’s experience into a particular level of distress and associated intervention, a person-centered approach would probably enable mothers to have the necessary space to begin a process of coming to terms with all that they have experienced during their child’s cancer journey and to look to the future through a different lens.

Conclusion

The study is small-scale, consisting of only five participants. It is clearly not appropriate to generalize the results too universally. However, we get a flavor of a handful of mothers’ views and experiences so that further discussion and reflections can ensue. As a cancer diagnosis is so complex, made up of different treatment regimens to cover the numerous different diagnoses, it is also not easy to compare participants’ experiences like for like. Furthermore, as a specific time that participants had to have reached posttreatment was not stipulated (due to not wanting to exclude someone who may be struggling years following treatment completion), the range was quite broad (2 months to 5½ years).

The primary nature of the research has allowed for an in-depth encounter into five mothers’ lives, where they reflected upon an incredibly painful time in their lives and how their experiences continue to affect them. This research clearly demonstrates that childhood cancer has changed all participants in different ways. Regardless of how long posttreatment their child was, in relation to their cancer journey, strong emotions are still present in four of the five participants. The further the length of time mothers were, from treatment completion, did not necessarily mean that they were more grounded in their emotional well-being. Blocking of strong feelings was spoken about frequently as a coping mechanism. All participants reflected that counseling posttreatment would have probably been beneficial for them. There was an uncertainty, however, as to how to access this type of support posttreatment. It was suggested, too, that having to return to the hospital environment where strong emotions were experienced did not feel comfortable after a time. Offering person-centered counseling as a matter of course for mothers, once they have had time to start getting back into a routine that does not include regular medical appointments and aggressive treatment regimens, and which is away from the hospital setting, will help them process their emotions in a way that will strengthen their coping for the future. Giving voice to these mothers was very important for them, for other professionals and for the parents of children with cancer and others who are parts of their networks.