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

Henriques, Nayara Luiza; Silva, Juliana Barony da; Charepe, Zaida Borges; Braga, Patrícia Pinto; Duarte, Elysângela Dittz

doi:10.1590/1518-8345.6366.3897

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Revista Latino-Americana de Enfermagem

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Original Article • Rev. Latino-Am. Enfermagem 31 • 2023 • https://doi.org/10.1590/1518-8345.6366.3897 copy

Factors that promote and threaten Hope in caregivers of children with chronic conditions ^* * Supported by Fundação de Amparo à Pesquisa do Estado de Minas Gerais (FAPEMIG), Grant #APQ-02165-17, Brazil. This research was funded by Universidade Católica Portuguesa - Centre for Interdisciplinary Research in Health (CIIS) - 501 082 522, Portugal.

Authorship SCIMAGO INSTITUTIONS RANKINGS

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.

Descriptors:
Hope; Chronic Disease; Child; Caregivers; Nursing; Qualitative Research

Highlights:

(1) Hope strengthens families of children with chronic conditions.

(2) There are factors that can promote or threaten parental Hope.

(3) The promoting factors of Hope generate comfort, motivation, strength and joy.

(4) The threatening factors of Hope generate suffering, anguish, anxiety and loneliness.

(5) Nurses can promote Hope and help families.

Escola de Enfermagem de Ribeirão Preto / Universidade de São Paulo Av. Bandeirantes, 3900, 14040-902 Ribeirão Preto SP Brazil, Tel.: +55 (16) 3315-3451 / 3315-4407 - Ribeirão Preto - SP - Brazil
E-mail: rlae@eerp.usp.br

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[1] Corresponding author:
E-mail: nayaraluizah@gmail.com https://orcid.org/0000-0003-0765-187X

Theme: Factors that Promote Hope
Subtheme and Definition	Identification of empirical data
Union with others: shared experience with other people	Family members as a source of practical and emotional support Conversations, support from family members and loved ones, prayers, that’s what gives me strength every day (M37). Spouses as a source of practical and emotional support My husband was my friend, my partner. He bathes her, changes diapers, gives her milk, gives her her diet when she needs it. He does everything! (M2). Friends as a source of support I have friends who support me a lot. In my workplace too, my co-workers always collaborate (M15). *Experience shared with other parents of CCC ^ * CCC = Children with Chronic Conditions Each father and each mother we meet. Each story gives us strength to keep going (M13). 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).
Spirituality: spiritual and religious beliefs and practices	Faith and prayer as a source of strength and optimism What supported me was faith in God. If you have faith, you have Hope, if you have Hope, you have strength, you have to believe and be optimistic (M5). Religious practices in search of support and answers to questions I have a lot of faith in Our Lady of Aparecida. Whenever I have a problem, I turn to her (G27). Divine purpose I have hope that God has a purpose for her here. That’s why he is doing miracles, healing her little by little (M17).
Improvement in health: the evolution and development of the child, a treatment that improves their quality of life, as well as hospital discharge	Hospital discharge I felt Hope when I took him out of the NICU ^† † NICU = Neonatal Intensive Care Unit (M19). Child’s positive response to health care received I had hope the day they took his appliances off, you know? I thought: God is giving an answer. He will survive (M9). Reaching developmental milestones and perceiving the child’s progress I had hope when he started talking, when he took the first step (M5).
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).

Factors that Threaten Hope
Subtopic and Definition	Identification of empirical data
Conflictual close relationships: relationships that generate negative feelings such as pain, anguish, loneliness, anxiety and sadness	Spouses in extramarital relationships He got involved with other women when I was in the hospital with my son. He threatened my feelings, I don’t know if that can be healed (M1). 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).
Discrediting the child: third partied discrediting 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). Friends I feel this from people around me. It’s a kind of prejudice regarding my son’s use of hearing aids (M13). Health professionals who discredited 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). Fragility of the child I was afraid because he was very small and I couldn’t take care of him. I was like: How to take care of something so little? (M1). Overload related to care demands Sometimes we are so overloaded with work, you know? There are many demands. Sometimes you get really discouraged (M15). Inability to maintain care due to financial difficulties Unemployment complicates everything, there are things she needs that I cannot buy (F41).