The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children’s perspectives

Children living with a parent who has a life-threatening illness express having difficulty communicating with their parent about their own thoughts and feelings [1]. Children are also known to show psychological distress, years after loss, if communication between the family and health care professionals and illness-related information is poor during the illness and after death [2, 3]. Many parents express a need for support from health care professionals concerning when and how to talk to their children about the illness, but such support is often absent [4‐7].

Illness-related information and family communication can be improved by involving the entire family in an intervention [8], but few approaches are based on family systems theory despite the need for them in palliative care contexts [9]. Reviews [5, 10, 11] show that there are few evaluated psychosocial interventions for families with minor children living with a parent with a life-threatening illness. Even fewer of these take a family-centered approach, and many available interventions target children and parents separately, in groups assembled from several families. This, even though family-centered interventions have been suggested to be effective in supporting all family members [8] by improving self-understanding, facilitating the development of new perspectives, and fostering a shared understanding of the illness situation [12‐15].

One family-centered intervention that has shown good results for both parents and children is the Family Talk Intervention (FTI) [15‐19]. The main goals of FTI are to increase illness-related knowledge and communication within the family, support parenting and improve coping. FTI consists of six key concepts: Sharing a history together (to create a common understanding of the illness that includes every family member’s voice and memories); Bringing knowledge about illness (to learn about biological causes, diagnosis and treatment); Addressing the needs of the children (to draw the children into the process, asking about strengths, skills, interests and relations, and about their knowledge and understanding of the illness); Planning how to talk to the children (the parents agree on what and what not to tell the children, and to elicit their questions, worries e.g.); Breaking the silence together as a family (to reduce feelings of guilt, fear and shame, and increase knowledge by focusing on the strengths within the family); and Continuing the family dialogue, moving on and facing the future (by beginning to understanding the world of others, the family gains a new closeness; this is not easy and requires repeated family meetings and communication) [20]. These concepts are based on different theoretical approaches [13, 14, 20]; psychoeducation increases knowledge about the illness, and through a narrative approach the family members share their stories with each other and create a joint family history. A dialogical approach allows the family to hear each member’s unique perspective and helps maintain a focus on the children’s needs and experiences.

Although most studies have evaluated the effects of FTI in the context of psychiatric care [15‐19], the use of FTI has also proven feasible in palliative care, from both children’s and parents’ perspectives (Eklund R, Jalmsell L, Kreicbergs U, Alvariza A and Lövgren M: Children’s experiences of the family talk intervention when a parent is cared for in palliative home care – a feasibility study. under review; Jalmsell L, Eklund R, Kreicbergs U, Lövgren M and Alvariza A: The family talk intervention in palliative home care when a parent with minor children is suffering from life-threatening illness - parents’ perspectives. under review). Children reported that they appreciated the structure and content of FTI and that they felt seen, heard and acknowledged by the interventionists, which established trust and safety (Eklund R, Jalmsell L, Kreicbergs U, Alvariza A and Lövgren M: Children’s experiences of the family talk intervention when a parent is cared for in palliative home care – a feasibility study. under review). Niemelä et al. [21] found that parents with a somatic illness had decreased psychological symptoms after participating in FTI. One study, performed in the context of somatic care, however not in palliative care, have shown that FTI had several benefits for the children, e.g. improved knowledge about the illness, and a perception that the family could talk more openly after participation [22].

FTI has shown promising results in both psychiatric and somatic care: increased illness-related knowledge and improved communication within the family, which are two important areas in palliative care. However, no study using FTI in palliative care has evaluated the potential effects of its use in families with minor children, despite the urgent need for this type of family-centered intervention. Therefore, the aim of this pilot study was to explore the potential effects of FTI, from the perspectives of minor children, when a parent is cared for in palliative care.

To our knowledge, this is the first study reporting the potential effects of FTI with minor children who have a parent with a life-threatening illness, one being cared for in specialized palliative home care. After participating in FTI, the children reported increased knowledge about their parent’s illness and the younger children felt that it became easier to talk to their parents. However, most of the children reported no change in their communication with siblings. Through their participation in FTI, children received help from the interventionists with situations at school and to establish professional counselling. Furthermore, FTI facilitated the beginning of communication between children and their families, helped them to prepare for future illness-related situations, other future events, and to maintain everyday life and minimize conflicts. All of this was appreciated by the children and described as strengthening and helpful.

The interviews revealed that learning more about the parent’s illness gave children better control over and a greater understanding of the situation, which they described as a relief. These results are in line with previous studies, where children from other care contexts have described similar experiences after participating in FTI [15, 17, 18, 22, 27]. Even though one main goal of FTI is to increase the transfer of illness-related information and provide specific knowledge about the illness, not all of the children reported these outcomes. The present study showed that the information given was not always appropriately age-adapted. Bugge et al. [22] and Forrest et al. [28] stress the importance of informing children appropriately and then checking to see that they have understood correctly, as misunderstandings can increase fear and anxiety at the time, and even lead to psychological distress later in life [3].

This study found that FTI helped the children to put their thoughts and feelings into words, think positively in difficult times, and gather strength from life outside of the family. Previous research on resilience has stressed the importance of having friends, a life outside the family, knowledge about the illness, communication within the family, and self-understanding [29, 30]. In this study, FTI increased participants’ awareness of these factors, which can be interpreted as supporting the family to identify strengths and resources, such as building and facilitating resilience, a main goal of FTI [20]. The findings of this study also showed improved communication with the parents, mainly for the younger children, which they described as helpful. This is also in line with one of the goals with FTI [20] and the results of previous FTI studies, which have shown good effects in opening up family communication [15, 22, 27]. However, the present study showed no change in communication between siblings after participating in FTI. Although the intervention is neither intended nor structured to promote communication between siblings (but rather between parents and children or between the parents only, in meeting 1–2, 4), improved sibling communication would have been desirable since children’s relation to each other is also important for the family as a system [8]. However, siblings’ relations to each other have not been studied as much as the adult–child relationship.

No category in this study could be related to the key concept “sharing a history together”. One reason for that might be that this is described as a gradually developing understanding, which evolves over time, and the main source of information related to that key concept focuses on the first two sessions where only the parents participate [20]. In addition, the interviews in this study were performed fairly soon after FTI was completed, and the children may not yet have had time to be able to see or reflect on what the family members different stories could mean for them. On the other hand, the structure of FTI gives parents more space to share their history and it might therefore be unrealistic to expect that the children will experience that they are sharing a family history after FTI. The only formal opportunity for children to share their history with the rest of the family is during the family meeting (meeting 5). However, the family meeting mainly focused on other things, such as the parent’s impending death (Eklund R, Kreicbergs U, Alvariza A, Lövgren M: Childrens views are not taken into account in accordance with article 12 of the United Nations convention on the rights of the child in the family talk intervention when a parent is cared for in palliative care. under review). Another potential reason that the children did not report that they “shared their history” in this study might be that during FTI, it is not the children, but the parents, who describe to the interventionists what they believe the children’s situation is like, and what the children need (meeting 1–2). It might therefore be difficult for the interventionists to leave the parents’ perspective of the child behind, to really listen to the children’s own voices and to assume their perspectives during the meeting with the child (meeting 3) and to maintain that perspective at the subsequent family meeting (meeting 5). In other words, FTI primarily involves a child perspective, which means an adult’s external perspective on the children’s experiences and actions, with focus on what adults’ think is best for the child, rather than the child’s own perspective, where the children’s voices are really being listened to (Eklund R, Kreicbergs U, Alvariza A, Lövgren M: Childrens views are not taken into account in accordance with article 12 of the United Nations convention on the rights of the child in the family talk intervention when a parent is cared for in palliative care. under review, [31]).

Children in the present study felt they became better prepared in several contexts after participation in FTI, e.g. the funeral. A previous study with 622 teenagers who lost a parent, shows that 98% wanted to be told when the parent’s death was imminent [32]. Other studies [2, 3], show that children who believed until three days before the death of a parent that the illness was curable, who distrusted the care given to the dying parent, or whose families lacked cohesion, were more likely to suffer long-term psychological distress, years after the loss. Beardslee [20] stresses that by increasing children’s knowledge, breaking the silence and starting communication within the family, and giving children possibilities for moving on and facing the future, the children could be freed from guilt and fear. This may lead to the children remaining strong and doing well in the long run, despite having lived through difficult life situations.

To our knowledge, this pilot study is the first FTI conducted in a palliative care setting that employs mixed methods, which are preferable when evaluating complex interventions [33]. Nonetheless, it has weaknesses. For example, it involves only Swedish-speaking families and has no comparison group. On the other hand, the children’s own assessments were used rather than parental proxy, as the intention was to capture the children’s own experiences. This study shows that FTI was of value to the participating children, and thus may indicate that FTI could be useful to other children. But before these results can be generalized, FTI should be further evaluated in a larger study involving families with minor children and with a family member in palliative care.

Children living with a parent who had a life-threatening illness and who participated in FTI reported the intervention as strengthening and helpful, with potential effects in terms of better information related to the illness and better family communication. They also reported that FTI facilitated their preparation for the future, decreased family conflicts, and started to build resilience. The results of this study show that FTI is promising for these children. However, FTI would benefit from including children’s perspective to a greater extent in order to achieve all of the goals of FTI. Moreover, the relationship between siblings needs to be given more attention.