Factors that promote and threaten Hope in caregivers of children with chronic conditions

Objective: to identify the factors that promote and threaten Hope in family caregivers of 2- to 3-year-old children with chronic conditions. Method: qualitative study with 46 family caregivers of children between 2 and 3 years old with a chronic condition, discharged from two Neonatal Intensive Care Units. Data was collected through semi-structured interviews guided by the Model for Intervention in Mutual Help Promoter of Hope. Data were submitted to deductive thematic analysis. Results: the following were identified as factors that promote Hope: The experience shared with members of the social support network; The relationship with the child; Clinical improvement of the child; Spirituality; Positive guidance for the future. The following were identified as factors that threaten Hope: Conflictual relationships and discredit of the child by close people; Uncertainties about the future; Insecurities about the ability to care for the child. Conclusion: the threatening factors of Hope generated suffering, pain, anguish, anxiety, and loneliness in caregivers. The promoting factors of Hope generated comfort, motivation, strength and joy. The findings allow Nurses to recognize the strengths and weaknesses of caregivers and adopt behaviors that promote Hope in caregivers of children with chronic conditions.

a few studies explore factors that promote Hope in caregivers of CCC (18)(19) , but none address the factors that threaten it.
This investigation is based on the assumption that actions aimed at promoting Hope contribute to the care of CCC, considering the challenges imposed by the management of the chronic condition in childhood (18) .
It is understood that when health professionals do not incorporate the concept of Hope in their practices, the care offered to children and their families may be compromised.
Thus, the possibilities of identifying factors that promote and threaten Hope among family caregivers of CCC are reduced; the identification of these factors is fundamental to develop individualized interventions that strengthen individuals' internal and external coping resources and, consequently, reduce human suffering (16,(19)(20) .
Given the existing gap in scientific literature on factors that promote or threaten parent's Hope, and considering Hope as a protective factor for mental health, which can support caregivers of CCC, the relevance of this study is justified. That said, the research question was: What are the factors that promote and threaten the Hope of family caregivers of CCC? To answer this question, the study aims to identify the factors that promote and threaten Hope in family caregivers of 2-to 3-year-old children with chronic conditions.

Method Study design
Qualitative, descriptive, exploratory study, following the recommendations of the Consolidated Criteria for Reporting Qualitative Research (COREQ) (21) .

Participants
The study included 46 family caregivers of CCC between 2 and 3 years old, who were discharged from two Neonatal Intensive Care Units (NICU) in Belo Horizonte, in a federal hospital and in a philanthropic hospital, selected for being references in the care of women, children and infants in the state of Minas Gerais.

Inclusion criteria
The inclusion criteria were: being the child's family caregiver, residing in the same household as the child, being over 18 years old. The family caregiver was the family member who had the main responsibility for the daily care of the child (5) . The exclusion criteria were having a deficit in communication and psychological and/or psychiatric alterations that compromised the understanding of the investigative procedures.

Data collection
The caregivers of CCC were identified through the analysis of all the medical records of children who were discharged from the NICU from December 2016 to December 2017. This period was determined to enable the identification of children aged between 2 and 3 years.
The age group was defined considering that changes in neurological, psychological and motor development are more noticeable in this age group (22) . Subsequently, from October 2019 to May 2020, the caregivers of all identified children were contacted by telephone and the Questionnaire for Identifying Children with Chronic Conditions -Revised (QuICCC -R) (23) was applied to confirm the chronic condition.
A total of 1115 caregivers were identified through the analysis of medical records. Of these, 829 could not be reached, as the telephone number registered did not exist or no longer belonged to the family member.
A total of 286 caregivers were contacted. It was found that 5 children had died, 218 did not have chronic conditions according to the QuICCC-R, and 63 met the conditions established by the QuICCC -R (23) . Of these 63 children, 8 caregivers refused to participate and 9 did not meet the inclusion criteria. Thus, 46 family caregivers of CCC participated in the study.

Study setting
The participants were interviewed individually in a place of their choice, which was usually the family's home, where five interviews were carried out, or a previously scheduled telephone contact, with 41 interviews in this modality. The recruitment of caregivers and the interviews were carried out by a researcher with experience in this technique and in the theme of care of CCC, who had no prior link with the participants or with the institutions where the medical records were collected.

Instruments used for data collection
Data was collected through the application of a questionnaire for socio-demographic characterization of the families, followed by a semi-structured interview based on the Model for Intervention in Mutual Help Promoter of Hope (MIAMPE) (11) . The script has six questions, described in Figure 1. 1) Tell me a story about a special moment when you felt Hope when dealing with your child's illness.
2) What factors do you consider responsible for the increase of Hope when you feel faith, optimism and inner strength?
3) What factors do you consider responsible for the decrease of your Hope? 4) Currently, is there anyone or anything that gives you Hope when caring for your child? 5) Currently, is there anyone or anything that threatens your Hope when caring for your child? 6) How have your past experiences of Hope (when you felt full of inner strength) helped to cope with your child's illness? Source: Adapted from MIAMPE (11)

Data processing and analysis
The interviews lasted an average of 49 minutes, ranging from 30 minutes to 1 hour and 43 minutes.
They were audio-recorded and later transcribed.
The text was reviewed for accuracy, comparing it with the audio. The anonymity of the participants was ensured by replacing their names with alphanumeric codes using the letters M, F, G and C to indicate mother, father, great-aunt and child, respectively, followed by the number corresponding to the order of the interview (e.g.: M4, F3, G1, C20).
Data were submitted to deductive thematic analysis (24) .
MaxQDA software version 2020 (25) was used for data management and storage. The codes initially used were those recommended in the MIAMPE (11) , a model based on the Hope experiences of parents of CCC, which points out factors that promote and threaten Hope as intervention resources in the field of Nursing. These codes were applied simultaneously and independently by two researchers to code www.eerp.usp.br/rlae Rev. Latino-Am. Enfermagem 2023;31:e3897. the interviews. Discrepancies in coding were resolved and discussed with a third researcher. After coding 10 interviews and verifying the agreement between the researchers (Kappa = 0.83), the other codings were performed by one researcher. The fragments used to compose each of the themes were analyzed to verify the internal homogeneity and heterogeneity between the themes. Finally, two themes and 9 subthemes were identified.

Ethical aspects
The research complied with resolution 466/2012 of the Brazilian National Health Council (CNS) (26) and was approved by the Research Ethics Committee under opinion CAAE: 12288919.0.0000.5149. Participants who were interviewed in person read the Informed Consent Form (TCLE) and then signed it in two copies, one offered to the participant and the other filed by the researcher. In the telephone interviews, the TCLE was read and the consent to participate in the research was recorded and filed in secure media, as provided for in Resolutions 466/12 (26) and 510/2016 (27) of the CNS, which allows oral consent and its recording.
The mean age of the interviewees was 34 years, with a minimum of 19 and maximum of 54 years. The mean age of the children was 2 years and 8 months. The mean gestational age at birth was 34 weeks, with a minimum of 24 and a maximum of 41 weeks. The majority (67.39%) of the children were male. Most participants were married (52.17%), self-identified as "pardos" (63.04%), had a religion (89.13%), had a family income of up to 2 minimum wages (67.39%), lived outside the capital of Minas Gerais (50%), and had a level of education of 9 years or more (86.95%).
Of the total number of participants, 54.34% reported they were currently not working, and 60% of those were women, mothers, who were homemakers.
Among the mothers who participated, 11 (23.91%) reported having other children with some condition, and 2 (4.34%) confirmed a history of death of a child younger

Promoting and threatening factors of Hope
Data analysis was oriented towards the identification of factors that promote and threaten Hope, which formed the two thematic categories. The first had as sub-themes

Health professionals who guide and follow the child
The guidelines provided by health professionals give Hope, they always explain everything in detail (M46).

Relationship with the child: caregivers recognize the child as a source of Hope
The child motivates the family My daughter is the one who always gives me Hope, joy and love (M11).

Individual characteristics of the child such as joy and excitement
Even though she has her condition, she is a happy child, she wants to jump, she wants to play, and that gives me a lot of Hope (F41).

Child's ability to cope with adversity
In fact, he is a life lesson, we say he is a warrior. Hope is in being with him 24 hours a day (M36). Guidance for life and for the future: recognizing the possibilities in life, finding paths that lead to desired goals, and being motivated to follow these paths

Continuing care
The hope I have is that she will walk, you know? So I take her to physical therapy and I always encourage her, stimulate her (M16).
Acquisition of autonomy by the child I have hope that they will have a life as close to normal as possible, that they will be independent, that they will be able to work (M15).

Development of children
The fact that he knows us, he understands what we say, he wants to talk. These things give me hope, make me believe in his improvement, you know? (M4). to achieve these goals: She undergoes physiotherapy, and as a mother, I follow this evolution, which gives more strength to seek her treatment and to believe that she will walk one day (M20).

Factors that threaten Hope
It is observed that family caregivers who had no other children with high-risk conditions mentioned factors that threaten Hope more frequently than participants who already had children in this condition.
A similar trend was found in the speeches of caregivers whose children had delayed growth and development, used technological devices, or were on continuous medication. The information of the subtopics is shown below in Figure 4.

Subtopic and Definition Identification of empirical data
Conflictual close relationships: relationships that generate negative feelings such as pain, anguish, loneliness, anxiety and sadness

Derogatory remarks about the child from family members My mother-in-law and my sister-in-law treat my son as if he were incapable; they say things that hurt me a lot (M16).
Disbelief in the child: third partied disbelief in the child's potential or the evolution of their clinical condition

Family members
My mother says he will be debilitated. She has this pessimistic view. She says he will never play soccer (M7).

Health professionals who disbelieved in the survival and development of the children They told us that she wouldn't walk, she wouldn't talk (F33).
Uncertainties about the future: undesirable events that can compromise the child's health condition and the families' condition to maintain care

New adversities related to child health
For me, the only threat is the disease, I'm afraid it will keep progressing, even with the treatment (M45).

Uncertainties about their lives Fear! (Mother cries). I'm very afraid of losing her, I'm afraid she won't live long (M24).
Doubts regarding self-potential and self-efficacy: family's insecurities and perceptions about inability to help and lack of confidence to provide care

Required care
He was so tiny to need oxygen. He even had to come home with the oxygen. And it was extremely difficult for me (M10).

Discussion
This study allowed identifying factors that promote and threaten Hope in caregivers of CCC. In addition, it confirmed the assumption that Hope is an essential dimension of care, enhanced in times of crisis, such as in the context of a chronic condition in childhood. Therefore, Hope appears in the path of care of CCC and is seen by family caregivers as a factor that helps maintain a positive perspective and that can be stimulated or compromised considering the context and the encounters.
In its investigation of Hope, the present study found that family caregivers were predominantly female.
Other studies also indicate that the burden of chronic disease constantly falls on the mother, who is usually the main caregiver (5,28) . In addition, in this study, most mothers dedicated themselves exclusively to home and child care, which is in line with findings in the literature that indicate that women stop working to stay at home due to the demands of the child (5,28) .
Henriques NL, Silva JB, Charepe ZB, Braga PP, Duarte ED Caregivers indicate that they need external support to promote or maintain Hope, sharing difficulties and receiving emotional and practical support, as pointed out in studies that explored Hope in parents of children with cancer (29)(30) . Thus, the support received from family members, spouses, friends (29)(30)(31) and health professionals (30) is important to provide encouragement and comfort (30) .
On the other hand, the lack of a social support network reduces the Hope of these caregivers. A qualitative study that investigated the experience of mothers when caring for children with leukemia, concluded that the lack of social support causes suffering for caregivers and compromises their ability to face challenges (32) .
Support groups with other parents of CCC are also cited in the literature as important resources for promoting Hope (11,29) . Engaging with other caregivers with similar experiences encourages the sharing of ideas, information and concerns (11) . In addition, the exchange of experiences with other parents of CCC lessens the feeling of social isolation and increases the feeling of identification, helping caregivers to have a more positive perspective on the child's illness and to envision new possibilities (32) .
The results of this study also demonstrate that health professionals can help promote or reduce the Hope of these parents. These professionals help to promote hope through the empathic sharing of truthful, understandable and objective information, while lack of empathy in communication and omission of information have the potential to reduce the family's Hope (33) .
The dimension of spirituality, namely faith and trust in God, is considered by the participants as crucial for maintaining Hope. Thus, families nourish their Hope through religious practices (30,32) . The belief that the experience of the chronic illness has a divine purpose and that the child's future can be promising helps caregivers to maintain Hope (31) .
The reports of the caregivers also refer to Hope as a view towards a future based on goals, which are sometimes related to expectations regarding the improvement of the disease or the survival of the child.
This way, Hope works as an anticipation of a future with better possibilities than the past and the present (34) .
For the participants of this study, the ideal future would bring a sense of normality. Findings indicate that parents' Hope is, in general, related to curing the child, with the possibility of stabilizing the disease, achieving better quality of life and normality, and building a better future without suffering (17,29) .
The caregivers of CCC often report feelings of uncertainty, which appear as an unexpected future (35) .
A study carried out with parents of children in palliative care pointed out that the family's experience of Hope was filled with uncertainties, especially regarding concerns with worsening of the health condition and death, which lead to an abrupt loss of Hope (36) . Furthermore, caregivers also feel insecure about their own ability to manage and provide care, as they do not believe they have the potential to carry out care measures successfully. Therefore, learning about this care and having support from health professionals during the child's hospitalization are essential for caregivers to develop and strengthen their skills (36) .
The children were also identified as a source of Hope by their caregivers. This is because the way the child deals with the chronic condition works as a coping model for the caregiver (37) . Finally, this study concluded that caregivers who had had other children with highrisk conditions or a history of death of children under 5 years of age cited more factors that promote Hope than those who had not. Thus, Hope appears in studies as a resilience factor and a strategy for coping with and adapting to stressful situations, such as caring for a CCC.
A study carried out with parents of children with cancer found that when parents come to terms with the diagnosis of their children they develop a resilient mindset that facilitates the process of coping with chronic illness in childhood (38) . On the other hand, those who did not adapt to the diagnosis had a decrease in Hope and in the ability to deal with the disease (38) .
As a contribution, the present study can help nurses