"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
Humans; Parents; Child; child; Male; Attention; Emotions; sibling; life-threatening condition; Adaptation Psychological; life-limiting condition; paediatric palliative care; lived experience; Siblings; Hermeneutics
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
Kittelsen TB; Castor C; Lee A; Kvarme LG; Winger A
International Journal of Qualitative Studies on Health and Well-being
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener">10.1080/17482631.2024.2321645</a>
Spirituality among parents of children with cancer in a Middle Eastern country
Adaptation; Cancer; Caregivers; Children; Hermeneutics; Lebanon; Palliative care; Psychological; Qualitative study; Spirituality
PURPOSE: Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what spirituality means for them in relation to their child's illness. The purpose of this study is to understand the meaning of spirituality for parents of cancer patients in Lebanon. METHODS: This qualitative study followed the Heideggerian interpretive phenomenological method. Through purposeful sampling, 11 parents (mother or father) of children with cancer receiving treatment at a tertiary care center in Beirut, Lebanon were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironside (1998). RESULTS: A constitutive pattern and overarching theme, "spirituality is a two-level relationship. It is a relation with God and with people. It is the act of receiving and giving back" and five major themes emerged from the data. These were "Being there for me; " "Connectedness with other parents is a blessing and a torment; " "The power of knowing; " "Communication with Unknown" and "Spirituality is not religiosity". CONCLUSION: Lebanese parents of children with cancer defined the elements of their own spirituality. Relational aspects dominated and communication was an important factor. IMPLICATIONS FOR PRACTICE: This is the first study in the Middle East to address the meaning of spirituality in this population, and would pave the way for a customized palliative care program and integrative approach to patient care.
Doumit M A A; Rahi A C; Saab R; Majdalani M
European Journal of Oncology Nursing
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.ejon.2018.12.009" target="_blank" rel="noreferrer noopener">10.1016/j.ejon.2018.12.009</a>