Factors influencing hope in parents of children with chronic illness

Maravilha, Telma Luisa Ferreira Duarte; Marcelino, Mónica Filipa Louro; Charepe, Zaida Borges

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Brasil

Acta Paulista de Enfermagem

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Sumário

Review Article • Acta Paul Enferm 34 • 2021 • https://doi.org/10.37689/acta-ape/2021AR01545 copy

Factors influencing hope in parents of children with chronic illness

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Objective

To map in scientific literature studies that lead to the identification of factors that influence the experience of hope in parents of children with chronic illness.

Methods

A scoping review literature review was carried out, following the methodology proposed by the Joanna Briggs Institute in the PubMed, CINHAL Plus with Full text and MEDLINE Plus with Full text databases, in the chronological interval between 2009 and 2019, to respond to the question: what are the factors that influence the experience of hope in parents of children with chronic illness?

Results

After applying the inclusion and exclusion criteria, ten studies were selected, from which it appeared that hope is a positive and motivating internal resource and that it is oriented towards the present and the future. There are factors that promote hope, such as the focus on positives, faith/religion and social support; and factors that threaten parental hope, such as physical and emotional exhaustion, perceived negativity on the part of others, fear and uncertainty.

Conclusion

Parental hope is influenced by children’s health status, effectiveness of treatments and psychosocial context, playing a significant role in adapting parents to children’s health condition.

Hope; Child; Chronic disease; Spirituality; Social support; Parents

Authors/Year/Country	Title	Objectives	Study Type	Results	Main factors
Samson et al ⁽⁶⁾ 2009 Canada	The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illness	Describe the experiences of hope among parents of children with Duchenne muscular dystrophy (DMD), in a specific context of psychosocial adaptation; Describe and understand how hope emerges in the trajectory, considering the fatal outcome.	Qualitative: Phenomenological Approach	The parental experience of hope emerges from the cognitive assessment of children with DMD. Parents’ perceptions of children’s illness (severe loss; need for adaptation; spiritual and intangible experience that allowed them to meet up with their child) lead to different forms of hope.	Parents’ perceptions about children’s illness.
Lloyd & Hastings⁽¹⁴⁾ 2009 United Kingdom	Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities	To explore the relationship of hope as a potential for resilience in the well-being of parents of school-age children with intellectual disabilities, based on Snyder’s Hope Theory.	Quantitative	Hope was measured with two components: the perception that objectives can be achieved (goals) and alternative routes to can be found to reach them, if necessary (routes).	Anxiety and depression in the father. Positive affection in the father. Mothers’ well-being.
Granek et al⁽¹⁵⁾ 2013 Israel	Trajectory of parental hope when a child has difficult-to-treat cancer: a prospective qualitative study	Realize parental hope when a child with cancer is undergoing treatment after the first year after diagnosis.	Qualitative: Grounded Theory	Parental hope changes over the first year after diagnosis. It is considered a positive, motivational internal resource that guides the present and the future. Two categories were identified: future-oriented (having no suffering or complications) and present-oriented hope (for healing, for the future, for a miracle and for longer with end-of-life children).	Illness progression Children’s pain and suffering.
Barrera et al⁽¹⁶⁾ 2013 Canada	The Tenacity and Tenuousness of Hope	Explore parental hope during children’s cancer treatment process; identify facilitators and barriers in their maintenance.	Qualitative: Grounded Theory	Parental hope is related to the healing of children. Their future is generally dependent on children’s response to treatment and the psychosocial context. There are facilitators and barriers to maintaining hope identified by parents.	Awareness of the positive or negative aspects related to children’s illness. Positive thinking. Effects of treatment on children. Focus on a positive gift. Spirituality. Psychosocial care. Information overload. Negativity from others. Physical and emotional exhaustion. Fear and uncertainty.
Markward, Benner & Freese⁽¹⁷⁾ 2013 Colombia	Perspective of parents on Making Decisions about the Care and Treatment of a Child with Cancer	Understand parents’ perspective in relation to decision-making regarding care and treatment of children with cancer.	Literature review	Hope influences parents’ decision-making regarding treatment and care of children with cancer. It helps in preparing for the negative aspects of treatment and can be promoted through appropriate communication by health professionals. It is important in decision-making at the end of life. For parents, hope is an increase in their children’s time and quality of life.	Support perception. Communication. Information and knowledge. Parental participation in child care. Quality of life and well-being of children. Sense of control. Trust. Financial situation. Satisfaction with the care received.
Bally et al ⁽⁹⁾ 2014 Canada	Keeping Hope Possible	Understand the experience of hope in parents who care for children undergoing treatment for cancer.	Qualitative: Grounded Theory	Parental hope is defined as essential, deliberate, life-sustaining, dynamic and cyclical. The hope process goes through sub-processes: accepting reality, rebuilding hope and intentional positive thoughts. The main concern of parents is to lose hope.	Access to child health information. Increased experience and knowledge. Connection with others. Be on the circuit. Reaffirmation of faith.
Popp, Conway & Pantaleao ⁽¹⁸⁾ 2015 USA	Parents’ Experience with Their Child’s Cancer Diagnosis: Do Hopefulness, Family Function, and Perceptions of Care Matter?	Distinguish the experiences of resolved and unresolved parents with their children’s cancer diagnosis in relation to hope, family adaptation, and perception of care.	Quantitative	Parents who are not resolved with the clinical diagnosis of their children show a decrease in hope and ability to act in the face of the disease. Parents who manage to combine hope and the capacity to act in the face of the disease are able to outline goals and a plan to achieve them.	Setting goals and a plan to achieve them.
Kamihara, Nyborn, Olcese, Nickerson & Mack⁽¹⁹⁾ 2015 USa	Parental Hope for Children With Advanced Cancer	Identify the expectations of parents of children with cancer in relation to the experience of hope.	Qualitative	Parents hope for a cure (88%), for a long life, for their children (66%), for the tumor to stabilize or shrink with treatment (47%), for the treatment to prolong life (38%), quality of life (94 %), normality (88%), minimization of suffering (75%), love and relationships for the children (66%), hope on the part of other family members (28%) and hope for better treatment (25%).	Negation. Life prolongation. Quality of life. Perception of normality. Suffering. Establishing meaningful relationships.
Borgestig, Rytterström & Hemmingsson⁽²⁰⁾ 2017 Sweden	Gaze-based assistive technology used in daily life by children with severe physical impairments - parents’ experiences	Describe and explore the experiences of parents when children with cerebral palsy receive eye-guided therapy.	Qualitative: Phenomenological Approach	Gaze-guided therapy leads to increased hope in children’s parents. Hope is related to the time when children start using this technology and the conception of a better future for their children. Parents show hope that others will understand their children and help them develop.	Perception of a better future for children.
Illum, Bonderup & Gradel⁽²¹⁾ 2018 Denmark	Parents’ Expressions of Concerns and Hopes for the Future and Their Concomitant Assessments of Disability in their Children	Assess parents’ ability to express their concerns and hope for the future of their children with disabilities; assess children’s disability and list the data obtained.	Mixed Methods	Parents can express valid and reliable data about their concerns and hope for the future and safely assess their children’s disability. Most frequent concerns: education, understanding, goodwill and communication between parents, and community support. Parents expressed hope that children will have a good future life.	No worries for the future Perception about disability assessment.

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[1] Corresponding author. Telma Luisa Ferreira Duarte Maravilha. E-mail: telma_sb_17@hotmail.com