The experience of hope in families of children and adolescents living with chronic illness: A thematic synthesis of qualitative studies

Abstract

Aim To synthesize qualitative studies on the experience of hope in families of children and adolescents living with chronic illness. Background Hope is multidimensional, dynamic, and varies according to experienced events, cultural environments and stage of life. The qualitative synthesis of the experience of hope in the paediatric population with chronic conditions is scarce. Design Thematic synthesis of qualitative studies. Data sources A systematic literature search in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science was performed supplemented by manual search strategies. Thirty‐one studies from fifteen countries, published between 1981‐2018, were included. Findings Findings were integrated into an analytical theme “FAMILY HOPE: KEEPING THE DAY‐TO‐DAY BALANCE”, encompassing the following five descriptive themes: Uncertainty; Support; Information; Between “dark thoughts” and positive thoughts; and Hoping to go back to normality. Conclusion This thematic synthesis brings a new dimension of hope among families of children and adolescents living with chronic illness. “Family Hope” highlights the influence of the relationships between relatives and the chronically ill child in the balance of hope. It is recommended that health professionals use a family‐focused approach to support these families. Impact Shifting the focus to a family dimension of hope is a promising pursuit that has the potential to inform future nursing practices to support the experiences of families living with chronic illness in the paediatric context. A better understanding of the role and characteristics of family hope will promote the development of more effective interventions for families to adapt to long‐term paediatric conditions.

Getting to Hope: Perspectives from Patients and Caregivers Living with Chronic Childhood Illness

“…Prior conceptualizations of hope narrowly defined it in relation to therapeutic goals and future aspirations, and emphasized intrapersonal characteristics [ 17 ]. A thematic analysis of qualitative studies addressing the experience of hope among children with chronic illness by Leite et al identified five themes: uncertainty, support, information, between “dark thoughts” and positive thoughts, and hoping to go back to normality [ 11 ]. The attributes of hope identified in our study ( Figure 1 ) included internal states of vitality and energy, future focus, as well as characterization of personal identity and one’s value and potential for impact on the world.…”

“…Less well studied are the promoting and inhibiting factors that influence hope. Few studies have examined hope in the context of pediatric chronic illness [ 8 , 9 , 10 , 11 ]. Therefore, we determined that further formative work was needed in partnership with patients and caregivers to develop a conceptual model to guide our research.…”

Spiritual Needs of Brazilian Children and Adolescents with Chronic Illnesses: A Thematic Analysis

“…The reestablishment of the meaning and purpose of life is related to the acceptance of the chronic condition and the beliefs that integrate with the purpose of life (Clayton-Jones et al, 2016). For this reason, children and adolescents seek to find the existence of a reason for this experience and that the future may still be promising (Leite, García-Vivar, Neris, Alvarenga, & Nascimento, 2019).…”

“…The hope for normalcy, positive expectations regarding treatment, optimism, courage and confidence to live life and achieve dreams characterized this need. The fear of the future impacting on hope was also highlighted in a literature review on the hope of families of children with chronic illnesses (Leite, García-Vivar, Neris, Alvarenga, & Nascimento, 2019).…”

“…Despite this, families who live with chronicity seek new perspectives and possibilities within the limitations of the disease (de Araújo et al, 2011), through reflection on their own experience and perception of well-being (Spurr et al, 2013). The child may use spirituality to find answers to the meaning and purpose in life, to improve coping processes, and as a resource to strengthen hope (Leite, García-Vivar, Neris, Alvarenga, & Nascimento, 2019); Compas et al, 2012;Lima et al, 2013).…”