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

Abstract

To identify the spiritual needs of children and adolescents with chronic illnesses and how these needs are met by health professionals during hospitalization. Design and methods: A qualitative descriptive study was developed with 35 children and adolescents, between 7 and 18 years old, diagnosed with cancer, cystic fibrosis, and type 1 diabetes. Interviews with photo-elicitation were conducted during the hospitalization at a Brazilian public pediatric hospital. Findings were treated using thematic analysis, and the Consolidated Criteria for Reporting Qualitative Research (COREQ) was followed for quality reporting. This research was approved by a research committee. Results: Two themes emerged. The first, entitled 'Spiritual needs', encompasses five types of needs: (1) need to integrate meaning and purpose in life; (2) need to sustain hope; (3) need for expression of faith and to follow religious practices; (4) need for comfort at the end of life; and (5) need to connect with family and friends. The second theme was the 'Definition of spiritual care'. Conclusions: Children and adolescents with chronic illnesses have spiritual needs while in hospital. Meeting these needs is essential for finding meaning, purpose and hope in the experience of living with chronic illnesses and at the end of life, based on their faith, beliefs and interpersonal relationships. But, these needs have not been fully addressed during hospitalization. Practice implications: These results emphasize the need to implement spiritual care when caring for hospitalized pediatric patients, which includes addressing spiritual needs.

How Do Religiosity and Spirituality Associate with Health-Related Outcomes of Adolescents with Chronic Illnesses? A Scoping Review

“…Alvarenga and colleagues [ 43 ], in their exploration of the spiritual needs of children and adolescents with cancer, cystic fibrosis, and type 1 diabetes mellitus, by means of interviews with photo-elicitation, found that believing in a benevolent God gave pediatric patients hope and helped them to integrate the meaning of their disease. Encouragement and comfort were also gained from members of their religious communities.…”

“…Thirdly, beyond personal and individual experiences of religiosity and spirituality, some works in this scoping review highlighted that religious communities [ 43 , 58 ] and spiritual anchors (e.g., parents; [ 60 ]) played a relevant role in the lives of adolescents struggling with a chronic illness, as they supported them spiritually and emotionally and gave them the strength to fight against their condition. Thus, these findings echoed those theoretical arguments and the empirical evidence revealing that religiosity and spirituality provide adolescents with social contexts where they might come into contact with sources of inspiration and webs of support, as well as have trustworthy relationships that favor their healthy development [ 35 ].…”

“…With regard to research, the studies analyzed in this synthesis underlined the need to adopt both qualitative and quantitative approaches when exploring the connections between the features of religiosity and spirituality of adolescents with chronic illnesses and their influences on young patients’ psychosocial adjustment and mental/physical health. Indeed, a qualitative approach seemed to be a useful means to gain a deeper insight into how young patients define these two constructs (e.g., [ 45 ]) and into the reasons leading them to rely on their faith and religious/spiritual beliefs, thoughts, practices, and communities to go through disease-related circumstances (e.g., [ 42 , 43 ]).…”

“…Furthermore, doctors, nurses, and professionals should provide young patients with spiritual care by showing empathy, humanity, kindness, and, eventually, by sharing thoughts or starting conversations on existential/spiritual questions (e.g., [ 43 ]). To do so properly, healthcare professionals should be trained to become aware of the importance of religiosity and spirituality in adolescents’ lives and of the differences between theirs and young patients’ religious/spiritual traditions and cultures in order to avoid prejudice and lack of understanding [ 41 ].…”

Evidence of validity of internal structure of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions

“…An increasing number of studies have described its relationship with patient reported health outcomes, especially in the areas of oncology and mental health ( Koenig, 2012 ; McLouth et al, 2021 ). Adolescents with life-threatening diseases or severe chronic conditions meet challenges in coping with their condition and spirituality may affect the psychological and behavioral adjustment ( Damsma Bakker et al, 2018 ; Alvarenga et al, 2021 ). The role of spiritual wellbeing, however, is not well understood in young people, and the number of reliable and valid instruments to assess the construct in this age group is still limited ( Cotton et al, 2010 ).…”