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Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study.

ABSTRACT: Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies.

SUBMITTER: Verberne LM

PROVIDER: S-EPMC6565652 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study.

Verberne Lisa M LM Kars Marijke C MC Schouten-van Meeteren Antoinette Y N AYN van den Bergh Esther M M EMM Bosman Diederik K DK Colenbrander Derk A DA Grootenhuis Martha A MA van Delden Johannes J M JJM

European journal of pediatrics 20190519 7

Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palli ...[more]

PMID: 31104108

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Project description:ObjectiveThis study explored women's sexual experiences and coping strategies for sexual problems after gynaecological treatment.SettingThe research was carried out at Tikur Anbessa Specialized Hospital, one of the two cancer centre hospitals in the country.Study designA phenomenological qualitative study design was employed in this study.Study participantsParticipants were recruited using purposeful sampling. Thirteen eligible study participants were interviewed face to face. Data were collected from 2 February to 15 March 2019 and analysed at the same time. For data analysis, thematic analysis was used, which comprises three stages: data reduction, data display and data conclusion.ResultsFour themes resulted from the analysis of individual interview data, including treatment side effects, sexual issues following radiation therapy, lack of awareness regarding cancer treatment and sexual dysfunction, and coping strategies for sexual dysfunction following gynaecological cancer treatment. Three subthemes emerged as coping mechanisms for managing sexual issues and dysfunction among Ethiopian women with gynaecological cancer: avoiding sexual intercourse, praying for healing and seeking professional help. These themes were identified as the rich and detailed account of the experiences of sexually active women who have received treatment for their cervical cancer.ConclusionThis study has broadened the perspectives on sexuality in the setting of gynaecological cancer and challenged certain commonly held beliefs about sexuality after treatment. Researchers should look into how inclusive sexuality education and training may be better integrated into the training programmes of healthcare workers. More research is needed to learn how partners of women with gynaecological cancer cope with sexual changes after treatment, how the couple as a partnership negotiates changes after treatment, and the facilitators and barriers that healthcare providers face when discussing sexuality issues with patients.

Dataset Information

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study.

Publications

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study.

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