Waves of family hope: narratives of families in the context of pediatric chronic illness

Objective: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. Method: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. Results: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. Conclusion: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.

that the family is a care unit, and that the family system is a part of a larger suprasystem and is composed of several subsystems. The family unit is greater than the sum of its parts -that is, its individual members.
When a family member is affected (with a diagnosis of a chronic illness, for example) its members are also affected to varying degrees (19) . Family organization and functioning are altered, and family members seek a balance between change and stability. The family balance is in the coexistence between change and stability in the different phases of the life cycle (19) .
Families studies that use this theory are able to explain individual and family functioning through observation and analysis of family interaction and how they use the resources available to achieve a family goal (19) . Because of the recognition and disseminated use of this theory both in practice and in research, this study uses Family Systems Nursing as the conceptual framework to explore how the family unit uses the resource of hope.

Method Type
This is a narrative research (20) which used family photoelicitation interviews (21) . Narrative research is a complex and dynamic method that provides an overview of research based on constructing and interpreting narratives as stories of experience. We chose Squire's (2013) experiencecentered narrative approach to explore the phenomena of this study. These types of narratives involve movements, successions, progressions, or sequences, usually temporal, and are connected with a significant fact, which is a changing point in the narrator's life -for example, a diagnosis of chronic illness (20) . In the present study, narratives were structured as follows: introduction, development and conclusion. They contained elements such as characters, time, space, environment and plot. The process of narrating introduced the representation of the I, because everything that was told had a meaning. Therefore, this method aimed to understand the experience of individuals through the reports of experienced events and the co-constructed narratives that were stories and statements constructed from dialogues between the participants (20) .

Scenario
A convenience sample of participants was recruited face-to-face in 2019, when the children or adolescents were hospitalized in the pediatric wards of a public university hospital, located in the interior of the state of São Paulo, Brazil.

Population
Children and adolescents diagnosed with complex chronic illness and their families were invited to participate in the research. In this study we considered "family members" as all people that children and adolescents described as such (19) . Considering the experience of the diagnosis, children and adolescents were excluded if they had been newly diagnosed (less than six months). Family members who did not actively participate in the care or daily routines of the child or adolescent were excluded, as were family members under eight years old.
To participate in this study, at least one family dyad was included. The number of family members interviewed varied according to their availability. The determination of the number of participants included in this study and the interruption of recruitment occurred when the data collected were sufficient to achieve the aim proposed (22) . This was possible because of the exhaustive data analysis conducted concurrently with data collection, which provided an in-depth analysis of the data of each participant and of the families, as well as the similarities and uniqueness of the experience among them.

Data collection
In the pediatric hospital in 2019, families were personally invited to participate in the study. In this first meeting, after explaining about the study and obtaining the written consent/assent, a female researcher built a genogram and ecomap of the family with the child or adolescent. The guiding question was: Tell me about who is your family? In the end of first meeting, the researcher invited the family to take photos about their perspective of hope, using their own smartphone cameras. The photos were used in the second meeting to perform a family photoelicitation interview (21) . This method of data collection elicited narratives and promoted reflection of the family experiences (21) . When necessary, questions (see Figure 1) were used to deepen data collection. Some family members preferred individual interviews, without using their own photos to elicit the narratives (Father, Family A and Aunt, Family B). At least two meetings with each family were held, each meeting lasting about an hour and a half. The detailed data collection process is illustrated in Figure 1.

Rigor
The rigor of this study was ensured by (25)(26) : • Credibility -rigorous data analysis developed by a research team, supported by the quotes that illustrate the findings and audit trail.
• Reliability -detailed description of the method, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) (27) . •

Confirmability -presentation of the limitations and
strengths of the study and by the researchers' reflexivity.

Results
This study included 10 participants from three families -Family A: Adolescent A, Mother and Father Leite ACAB, García-Vivar C, DeMontigny F, Nascimento LC. Family B: Child B, an 11-year-old girl diagnosed with osteosarcoma in her right knee. She indicated as her family members her healthy older brother, father, mother, mother's sister (aunt by consanguinity), and the wife of her maternal uncle, her aunt by marriage. She also highlighted the very strong bond she has with her dog, which she considers as a family member Family C: Child C, a 9-year-old boy diagnosed with cystic fibrosis. He considered his family members to be his two healthy older sisters, mother, aunt, maternal grandparents, mother's boyfriend, and aunt's boyfriend. His 7 friends, including his 5 male friends, a female friend, and his teacher were also considered part of the family, and he highlighted a very strong bond with them

Chronic Illness
The analytical theme is presented through a metaphor with ocean waves, which we entitled: Waves of Family Hope in the Context of Pediatric Chronic Illness At this moment, the family experiences uncertain hope.
The rise in family hope occurs over time. When the child reaches a stable clinical condition during treatment, the family experiences caring hope. Latent hope occurs when there is a worsening of the child's clinical condition, and the family feels that hope has been lost, even though it is still present without manifesting. Expectant hope is experienced by the family as they project a desired future, in which the only remaining resource is hope.
The waves always generate energy due to their driving movement. In our results, this energy represents a family member who is able to drive energy through wave movements to propel family hope. Wave formations and movements occur constantly. Due to this dynamic process, families experience at different times the different types of hope throughout the illness trajectory.

Figure 3 -Waves of Family Hope in the Context of Pediatric Chronic Illness
The types of hope identified in this study are described below. Figure 4 presents the similarities between the narratives of types of hope among the families. Figure   5 shows the unique experiences within the family related to the types of hope.
One of the families' lack of financial support was a factor that influenced the maintenance of latent hope. Families considered the hospital context to be a constant reminder of the child's health condition. During The feeling of uncertainty is usually present in the families of children and adolescents living with chronic illness. A study developed with parents in the context of pediatric palliative care showed that their experience of hope was based on uncertainty (30) . The uncertainty was related to the concern about the worsening of the child's health, and his death, leading to an abrupt loss of hope (30) . However, another study showed that hope was a resource used by parents in anticipatory grief, which is the feeling of grief that occurs before an imminent death. Even after the child's death, parental hope was present through the belief that the child would be in a better place, or that one day the parents would find them again (31) . Differently from the study mentioned before, family hope was promoted by avoiding thinking about the possibility of the child's death. Our results also demonstrated that uncertainty was the feeling that promoted uncertain hope and was mainly related to the moment of diagnosis.
Corroborating our results, hope is considered by parents of children and adolescents with chronic diseases as the first and last strategy for dealing with moments of crisis (30) . We highlighted that types of hope act as waves of family hope, changing in the face of different factors and unique family experiences.
Other studies also presented the perspective of different types of hope, highlighting this process as a constant metamorphosis (9,30) . The factors that influence hope change according to the context in which it is experienced (32) . Our study showed four factors that influenced family hope. Further research should investigate how these factors act in hope, highlighting those that can be protective.
The results of this study demonstrate that information can promote or decrease family hope.
Therefore, families need to receive information, and it is the responsibility of the healthcare team to inform Thoughts or comparisons that generate a negative perspectives are able to decrease family hope (15) .
With regard to support, the presence of this factor was able to promote or maintain family hope throughout In our results, families sought normality through activities that generated the feeling that the child would not be sick anymore. This search was related to the moments in the child's clinical condition -caring hopeor in the projection of the ideal future -expectant hope.
The lack of this feeling was exacerbated in uncertain hope and latent hope. Hope is an indispensable resource, and acts as the vital force for parents (30) . It anticipates that the future will bring better possibilities than the past and the present (9) . Among these mysterious possibilities is a sense of normality, which is usually linked to a cure, that can be associated with a miracle (39)  This study has strengths and limitations. We consider as its strengths: a) the inclusion of the family unit (21) ; b) the conducting of family photo-elicitation interviews which allowed for iterative data collection to obtain family members', children's, and adolescents' narratives (21) ; c) the rigor used in the development of of different types of hope and that its dynamics were influenced by four factors. Moreover, the movements of waves of family hope generated a driving energy that is able to promote family hope in times of crisis.
These results can help health team to plan family care considering hope as an essential and dynamic family resource.