1 Background

When a child is diagnosed with cancer, parents face numerous existential, emotional, social, and physical challenges that can substantially impact their psychological well-being and intimate relationship. Couples with seriously or chronically ill children have a higher risk of experiencing marital distress, dissatisfaction, lower dyadic adjustment, and insecure-avoidant attachment (Da Silva et al. 2010; Katz et al. 2018; Silva-Rodrigues et al. 2016; Yeh 2002; Cusinato et al. 2017). In a study by Wiener et al. (2017), 40% of parents of children with cancer reported that their relationship had deteriorated. Another study found that 20% of parents of children with acute lymphoblastic leukaemia experienced marital distress (Burns et al. 2018). Parents often find hospital care and relapse to be the most stressful stages of their child's illness trajectory on their intimate relationship (Wiener et al. 2017). In a qualitative study by Arruda-Colli et al. (2018), parents mentioned that mutual strategies, supportive behaviour, and compassionate interaction strengthened their relationship, while emotional and physical distance posed challenges.

Previous studies have shown that parents of ill children are aware of their marital challenges and the need for support. According to a prospective, longitudinal study by Kukkola et al. (2017), nearly all (99%) parents of children with cancer expressed a desire for more support from their spouses. In another cross-sectional, multicenter study by Wiener et al. (2017), most parents of seriously ill children expressed interest in intimate relationship counselling. Despite this, couple interventions for parents of children with cancer are not routinely offered, but they have been shown to be necessary for development and evaluation in previous longitudinal qualitative studies (Arruda-Colli et al. 2018), surveys (Burns et al. 2017), integrative reviews (Da Silva et al. 2010; Shields et al. 2012), and a randomised intervention study (Porter et al. 2019).

Emotionally Focused Therapy (EFT) is a well-documented couple therapy approach based on attachment theory (Johnson and Williams-Keeler 1998; Wiebe and Johnson 2016). In a randomised control trial assessing the efficacy of EFT in reducing marital distress in the parents of a chronically ill child, the couples showed substantial relationship improvements post-treatment and at a 5-month follow-up (Walker et al. 1996). Longitudinal studies have indicated that the results achieved with EFT are relatively consistent (Cloutier et al. 2002; Wiebe et al. 2017). More recently, the basic interventions of EFT have been modified into a brief group format called the Hold Me Tight (HMT) programme, which aims to help couples regulate and share their attachment emotions in a safe way (Johnson 2008, 2010). The programme has been found to produce positive changes in relationship satisfaction, trust, attachment safety, and family functioning, as well as decrease marital distress. Previous studies regarding the HMT programme are summarised in Table 1. Despite the promising results of the programme, there is no previous research on its feasibility with the parents of a seriously ill child.

The purpose of this study was to qualitatively explore the experiences of both parents who participated in a 3-day HMT group intervention aimed at enhancing the intimate relationship of parents with a child who has cancer. Previous research has primarily focused on long-term, emotionally focused interventions for this demographic. This study makes a unique contribution by empirically examining a brief group format intervention. Focus group discussions were conducted immediately after the courses and analysed using IPA. This study delves into the experiences of both parents, as no such qualitative research has been conducted previously. The findings of this study will aid in developing and implementing appropriate interventions for parents of seriously ill children.

1.1 Research Questions

The primary research question of this study was:

• How do parents of children with cancer experience the emotionally focused relationship enhancement group intervention (Hold Me Tight/HMT)?

2 Materials and Methods

2.1 Participants and Their Recruitment for the Study

The study group consisted of 12 heterosexual couples who took part in a 3-day HMT course designed for parents of children with cancer. The course was conducted three times, in April 2016, 2017, and 2018, in Kuopio and Siilinjärvi, with four couples participating in each course. The courses were arranged by an organisation that supports families of children with cancer (Sylva ry) and have been held in Finland since 2013 for parents of children with cancer. The planning and adaptation of the courses were overseen by couple psychotherapist Hanna Pinomaa, who is a supervisor and certified trainer for emotionally focused couple therapy. One facilitator of the course was psychologist and family therapist Krista Koivula, and the other facilitator was psychiatric nurse and sexual counsellor Janne Puranen. Both had training in emotionally focused couple therapy and prior experience with HMT courses.

The participants were 12 fathers and mothers between the ages of 25 and 48 years. The inclusion criteria for the study were having a child diagnosed with cancer, being in an intimate relationship with the child's other parent, attending the course, being able to understand Finnish, participating in interviews without an interpreter, and providing voluntary written consent. The exclusion criterion was being under 18 years old. The participants' children ranged in age between 2 and 19 years and had been diagnosed with various types of cancer: acute lymphoblastic leukaemia (6 children), medulloblastoma (2 children), lymphoma (1 child), retinoblastoma (1 child), rhabdomyosarcoma (1 child), and Wilms' tumour (1 child).

Approval for the study protocol was granted by the Research Ethics Committee of the Northern Savo Hospital District, Kuopio, Finland (February 9, 2016; no. 68/2016). The study had institutional approval. Participants were recruited by the first author during the HMT courses. They were provided with both oral and written information about the study, given time to consider participation, and then asked to provide written informed consent for participation in the study and video-recorded interviews. Participation in the research was voluntary, and declining to participate did not impact the parents' programme or treatment. Parents also had the right to withdraw from the study at any time without needing to provide a reason. All 24 parents who were approached agreed to participate, and none withdrew their consent.

2.2 Intervention

The Hold Me Tight relationship education programme aims to help couples improve the process of regulating and sharing attachment-related emotions and needs in ways that foster a safe connection between partners. The HMT course consisted of eight 1.5-h sessions and the eight topics of the course were as follows:

1. Understanding love and affection in an intimate relationship
2. Identification of negative cycles
3. Finding raw spots
4. Revisiting a difficult moment
5. The meaning of the past
6. Sharing needs
7. Bonding through sex and touch
8. Keeping love alive

In this study, the course had been modified to suit the parents of ill children, and the impact of the child's illness was addressed with each topic. The topics were approached through an educative presentation, discussion, and couple exercises, with course facilitators supporting each couple during the exercises.

The HMT group intervention facilitated couples' understanding of adult attachment, love, and affection, and helped them identify negative interaction patterns (negative cycles) (topics 1 and 2). Participants were encouraged to explore and discuss emotional and behavioural triggers (raw spots), vulnerabilities, insecurities, intimacy needs, and primary emotions, as well as the ways in which these may be concealed by secondary reactions such as anger or frustration (topics 3 and 4). Subsequently, couples reflected on the influence of past relationships and emotional injuries on their current intimate bond. They were supported in sharing these experiences empathically and offering comfort to one another, thereby enhancing emotional connection (topics 5 and 6). Finally, the intervention addressed the relationship between emotional intimacy and sexual connection and promoted the maintenance of emotional closeness in everyday life through shared routines and rituals (topics 7 and 8).

2.3 Interview Procedure

On the last day of each course, parents participated in a focus group conversation discussing their experiences related to the course and explored how it influenced their ability to handle challenges in their relationship. One course facilitator led the conversations while the spouses and another facilitator listened. The semi-structured conversations followed IPA guidelines suggested by Smith (1995). The interviews were video-recorded and transcribed verbatim for analysis. Conversations lasted 77 min with mothers and 88 min with fathers.

2.4 Interpretative Phenomenological Analysis

IPA was chosen as the analysis method to explore the parents' lived experiences during the course, and the meaning they derived from those experiences. IPA aims to understand the individual wishes, aspirations, feelings, motivations, belief systems, and how these manifest in behaviour and function (Smith et al. 2012). This approach is both empathetic and explorative, focusing on cognitions, emotion, speech, and expression in interviews.

In this study, transcribed data was analysed using thematic analysis techniques derived from IPA (McCambridge et al. 2014). The IPA analysis involves a set of general processes flexibly applied in analytical terms. The six steps of IPA applied in this research are as follows (see the Appendix for stage descriptions):

• Stage 1: Transcribing, reading, and re-reading.
• Stage 2: Making preliminary notes.
• Stage 3: Developing emergent themes.
• Stage 4: Exploring connections between emergent themes.
• Stage 5: Reviewing the emergent themes and connections across cases.
• Stage 6: Developing models based on the cases.

Juho Kalapudas (M. A., Psych.), who was familiar with the data and IPA, thoroughly reviewed the analysis process and provided written feedback on the themes and interpretations. This feedback was used to enhance the analysis and ensure the quality of the final product. Any differences in themes, connections, and interpretations were resolved through discussion and compromise. The themes were also discussed with the co-facilitator (Janne Puranen).

3 Results

3.1 IPA Analysis: Main and Subthemes

During the focus group conversation on the HMT course, parents shared the individual, couple, and family-related meanings they experienced during the course. The main and subthemes of the analysis, along with related data extracts, are listed in Table 2.

3.1.1 Individual-Related Meanings

The individual-related meanings included increasing self-understanding (19 parents), improving personal well-being and resilience (9 parents), identifying the need for self-exploration (6 parents), and enabling a new kind of self-observation (6 parents). Throughout the course, parents realised the importance of exploring themselves to understand their deeper emotions, needs, and the root causes of their behaviour in relationships. They acknowledged the impact of past relationships on their current behaviour and reactions in intimate relationships and parenting. Despite the challenge, parents found it possible to recognise the emotions underlying their interactions with the supportive environment of the course. Through self-observation, they began to understand their roles in difficult situations and enhance their behaviour and responses. Parents noted an increase in personal well-being and resilience as they processed their thoughts and gained understanding. They found it easier to forgive themselves by identifying negative patterns and noticed an increase in flexibility, optimism, and future planning.

3.1.2 Couple-Related Meanings

The couple-related meanings focused on understanding relationship interactions (19 parents), facilitating prevention and dealing with challenging situations in the relationship (19 parents), strengthening the mutual emotional connection (16 parents), and the possibility to identify and process the couple relationship dynamics (9 parents).

Parents felt that the course helped them identify crucial relationship issues that were often overlooked in the busyness of daily life. Understanding interactions in relationships involved recognising negative patterns, understanding the emotions behind behaviour, acknowledging the impact of past relationships, and addressing the effects of a child's illness on the relationship. Identifying and sharing real feelings and needs improved communication and decreased blame. Parents found it enlightening to recognise repetitive patterns in their relationship. Understanding the common causes of negative cycles reduced feelings of inadequacy and empowered them to change their behaviour. They were able to discuss difficult topics that had been avoided due to the child's illness, leading to increased safety and flexibility in conflict situations.

Identifying the partner's needs for attention and affection was perceived as meaningful, and throughout the course, the couples discussed the importance of directly expressing their needs and feelings. Parents shared, identified, and addressed their partner's strengths and reasons for satisfaction in their relationship. They also felt that the course helped them openly discuss their warm feelings for each other, making their love and care visible. The parents found that the course strengthened their relationship by increasing positive interaction, a sense of togetherness, and confidence in coping together. However, some parents were unsure about applying what they learned in everyday life due to increased stress and lack of emotional support. Overall, the parents believed the course enhanced their understanding of the importance of nurturing their relationship.

3.1.3 Family-Related Meanings

Parents felt that the course increased their understanding not only of their mutual relationship but also of the interactions within the whole family (5 parents). Throughout the course, they recognised the importance of how they treat their children and the impact it will have on their future. They also considered ways to enhance their parenting skills and interactions with their children. Parents believed that the course would not only enhance their well-being but also that of the whole family. They thought that reducing negative cycles would have a positive effect on the atmosphere at home and the well-being of the children.

4 Discussion

The present study explored the experiences of a HMT group intervention for the parents of children with cancer, as limited research has been done on couple interventions for these parents. The HMT course helped parents understand relationship dynamics and strengthened their belief in their ability to influence it. Parents connected the meanings of the HMT course to themselves, their relationship, and their family life. Specifically, they found the couple-related meanings to be diverse and powerful, despite the short duration of the 3-day intervention.

Parents felt that of the course, the peer group, and the professional support provided a safe space to process difficult issues and emotions related to their child's illness. It is significant that such brief intervention was able to create a sense of security that allowed for the exploration of challenging topics. For instance, it facilitated identification and sharing of primary emotions and needs between partners, rather than just addressing negative cycles on a cognitive level. A weekend course may be more feasible for parents of ill children compared to weekly sessions. The group settings enable parents to receive peer support and focus on their relationship intensively for a weekend, which can be challenging to do in the midst of a busy family life with a sick child.

4.1 Strengths and Limitations

Data gathering may have had one limitation, specifically the focus group conversation conducted immediately after the course, where the positive impact of the course may have been highlighted. The Hawthorne effect (McCambridge et al. 2014) can't be ruled out: in feedback situations, led by course facilitators and involving spouses, there may be an overemphasis on positive experiences and impacts. Therefore, a follow-up study would be necessary to determine if the intervention actually leads to changes in parents' relationships and family life. Additionally, the results could also be enhanced by collecting written client feedback to provide another perspective on participants' experiences.

One significant contribution of this study is the empirical investigation of the experiences of parents with a seriously ill child who participated in a brief group intervention. The rich, detailed, densely described, and well-saturated data allowed for the identification of strong themes in the analysis. The IPA method facilitated a nuanced examination of the experience, shedding light on various aspects of the phenomenon being studied. The findings offer a deeper and more nuanced understanding of the parents' experience compared to quantitative impact studies. Despite the study's limitations, these qualitative results support the development and implementation of emotionally focused interventions for this target group, and they provide a basis for further research.

4.2 Clinical Implications

Previous research on the parents of seriously ill children has shown the significance of dyadic emotion regulation in their coping and the challenges of giving and receiving emotional support together (Koivula et al. 2019). Interventions that enhance dyadic emotion regulation need to be created, implemented, and evaluated for their effectiveness. Previous studies have indicated that EFT not only reduces relationship distress but also addresses individual co-morbidities, with positive lasting effects (Johnson 2019). The impact of emotionally focused interventions on the personal well-being and coping of parents was evident in this qualitative brief intervention study. Based on the findings, parents found the HMT-course beneficial for their personal well-being, as well as for their relationships with their partners and families.

According to the IPA analysis, recognising and normalising emotions and reactions triggered by the child's illness was viewed as important and comforting. Couples also found value in acknowledging the significance of the past and understanding how to maintain emotional connection. These aspects should be considered when designing couple interventions for parents of seriously ill children. Parents felt that the course had a profound impact on their thoughts and interactions, but some questioned if they could apply what they learned in their daily lives. A follow-up discussion or an advanced course could help sustain the results.

According to this study, parenting a seriously ill child appears to be a unique contextual factor that influences parents' experiences of the HMT course. Long-term and varied burdens resulting from a child's serious illness may have heightened the parents' need for support during the course. Parents also mentioned that they had delayed addressing issues in their relationship as a result of their child's illness, leading to intense emotions surfacing during the course. These factors should be taken into consideration when designing interventions in this context, especially when determining the number of participants and resources needed for the courses. Sufficient staff should be allocated to run courses for parents of seriously ill children, as certain topics, such as past difficult experiences, the significance of the past and negative cycles can evoke strong emotions and require significant support. Additionally, careful planning of the timing and content of these heavy themes will be crucial when working with parents overwhelmed by their child's illness.

In the future, it will be important to gather more research data on the effects of HMT brief interventions, as it may be feasible for parents in challenging family situations to participate in them rather than in treatments requiring long-term commitment. Qualitative methods can be utilised to explore potential mechanisms of change and experiences of multifaceted interventions (Bonell et al. 2012). A qualitative analysis can capture the complexity of intervention components and contextual factors, which are characteristic of complex interventions (Skivington et al. 2021). Emotionally focused interventions aim to impact the sense of safety and mutual emotional connection. These highly empirical research topics may be better suited for qualitative rather than quantitative research methods. However, current research methods allow for the evaluation of intervention effectiveness by measuring sympathetic nervous system synchrony between couples (Karvonen et al. 2016). In the future, it will also be important to examine the lasting effects through longitudinal studies.

Appendix: The Steps of Interpretative Phenomenological Analysis

Stage 1: Transcribing, Reading, and Re-Reading

In IPA the process of entering the participant's world begins with repeated reading of transcribed data. The researcher enters and immerses her/himself in the data to read it ‘from within’ (McLeod 2001). In this study, access to the data began in the feedback discussion and transcribing phases. After this, all transcripts were read three times to actively engage with the data and become familiar with the content of the interview. The first author (Krista Koivula) also watched the videotapes of the discussions to recall the interview situation and the emotional content of the data. While watching the videotapes, she paid special attention to the interviewees' nonverbal communication, such as positions, gestures, facial expressions, gaze, and tone of voice to notice the multi-dimensional features of the interaction and communication. The author wrote down her own recollections of interview experiences and her initial observations to ensure that the participant became the focus of the analysis.

Stage 2: Making Preliminary Notes

IPA continues by drawing upon the close, line-by-line analysis of the experiences of each participant. This step examines semantic content and language use on a very close and exploratory level. The first author worked with each transcript, initially writing descriptive comments, then returning to the top and recapturing the transcript, focusing on language use. Finally, the author added conceptual comments to the transcript, aiming to bring the analysis to a more general, conceptual level.

The purpose of this step is to first create a descriptive core of comments with a clear phenomenological focus that stays close to the participant's explicit meaning. Phenomenological research emphasises data orientation compared to the researcher's existing assumptions. The goal of phenomenological reduction is to achieve the direct experience of the subject by bracketing presuppositions. The key objects of concern and the meaning of those things to the participant were described. Descriptive comments were noted in the text file and the related expressions were underlined in the original transcripts. The author wrote down her own perceptions and understandings to uncover the meaning of core events and processes from participants.

In the second reading, the author added linguistic comments to the file with the purpose of examining language use in the interview. Linguistic comments were indented and italicised in the same text file with descriptive comments. At this stage, the author focused on how the transcript reflected the ways in which the content and meaning were presented. For example, the author paid particular attention to pronoun use, pauses, laughter, smile, functional aspects of language, repetition, tone, and degree of fluency (Smith et al. 2012).

The purpose of the third reading is to shift the focus towards the participant's overarching understanding of the matters they were discussing and to produce conceptual comments with the aim of lifting the analysis to a more interpretational level. As the author read the transcript, she commented on similarities, differences, echoes, amplifications, and contradictions in the discussion. These comments represented the beginning of the conceptualisation process.

Stage 3: Developing Emergent Themes

The next step of IPA is to identify emergent themes by analysing the exploratory comments (Smith et al. 2012; Smith and Rhodes 2015). The author simultaneously attempted to reduce the volume of detail whilst maintaining complexity, mapping the interrelationships, connections, and patterns between exploratory notes. At this step, the author primarily worked with the initial notes rather than the transcript itself. However, the work was still closely tied to the original transcript, and the roots of emerging themes were checked regularly.

The analysis of exploratory comments to find emergent themes focused on discrete sections of the transcript while maintaining an awareness of the whole initial noting process. In turning notes into themes, the author aimed to produce a concise and meaningful statement of what was important in the various comments attached to a section of the transcript. Themes were expressed as phrases that captured the psychological essence of the piece, with enough specificity to be grounded and enough abstraction to be conceptual. Themes were written down below the comments and examined side by side with the transcript to ensure they were derived from the original data. Any themes that were not adequately grounded in the transcript were dropped.

Stage 4: Exploring Connections Between Emergent Themes

In the fourth step of IPA, the author searched for connections across emergent themes. This involved developing of a map of how the author thought the themes fit together. The preliminary themes were clustered into groups of related themes based on common features in terms of meaning. The main themes were validated by cross-checking with the original transcript. Identification of these main themes required a greater degree of interpretation of data. ‘The constant comparative method’, or testing provisional hypotheses against other cases, is also recommended in grounded theory to increase the validity of findings (Corbin and Strauss 2008).

Stage 5: Reviewing the Emergent Themes and Connections Across Cases

The identification of emergent themes was first implemented for single cases, then across multiple cases and focus groups. The above process was repeated for each transcript to identify patterns across cases. Considering the idiographic commitment of IPA, the author handled each case on its own terms, allowing new themes to emerge. The author then summarised the emergent themes and produced a structure that allowed her to highlight all the most important aspects of the participants' accounts. The preliminary analyses were then combined into a consolidated summary of the main themes for the group.

Stage 6: Developing Models Based on the Cases

Measuring the frequencies within the cases is appropriate, especially with large sample sizes (Smith et al. 2012). Numeration can be one way of indicating the relative importance of emergent themes, and the authors examined the frequency with which themes were supported in different transcripts. The aim was to achieve the dual quality of IPA: pointing out ways in which participants represent unique idiosyncratic instances, but also shared higher-order qualities. The author developed a full narrative, supported by a detailed commentary on data extracts, which guides the reader through the interpretation and reflection of the authors perceptions, conceptions, and processes during the analysis. Juho Kalapudas, the author familiar with the data and IPA, reviewed the research process throughout the analysis and provided written feedback on the themes and interpretations to enhance and strengthen the analysis and ensure the quality of the final product.