Lived experience of parents of children with life-limiting and life-threatening disease

Bužgová, Radka; Páleníková, Andrea

doi:10.15452/cejnm.2015.06.0005

Cited by 8 publications

(5 citation statements)

References 8 publications

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“…Studies have frequently reported long hours in caregiving lead to changes in employment status, income24 and quality of life25 of parents. As the present findings imply, the outcomes could be poor family functioning6 and increased carer burden 26. Goldhagen et al 27 suggested reinforcement of community support and community-based PPC is essential to help attain the health-related quality of life of caretakers.…”

Section: Discussionmentioning

confidence: 61%

“…Early integration of PPC can support the CLLC and family in making sound and realistic decisions,6 symptom management facilitated by better care coordination 19. It is advocated that PPC should be introduced at the time of diagnosis of the life-limiting condition, or prior to diagnosis where it can be challenging for rare conditions 10.…”

Section: Discussionmentioning

confidence: 99%

“…These parents play a key role throughout their child’s life journey and have a considerable need for information to help them understand the disease and treatment choices. Provision of informational support can prepare parents for what to expect in terms of the progression of their children’s illness and potential treatment 6. Early and regular engagement in communication between parents and healthcare providers was seen as important 3.…”

Section: Introductionmentioning

confidence: 99%

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Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study

Wong,

Ho,

Lai

et al. 2023

Arch Dis Child

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ObjectiveTo compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers.DesignA qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions.Setting/participantsThe setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC–parent–healthcare provider) were recruited, with 65 individual interviews conducted.ResultsA total of 3784 units of analysis were identified, resulting in three themes with subthemes. ‘Living with the disease’ (55.8%) occupied the largest proportion, followed by ‘information and understanding about the disease’ (27.4%), and ‘care support and palliative care’ (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.ConclusionsThis original study identified the importance of palliative care with active engagement of parents which can address the service gap for CLLC.

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Section: Discussionmentioning

confidence: 61%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study

Wong,

Ho,

Lai

et al. 2023

Arch Dis Child

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“…In the Republic of Kazakhstan, such assistance is provided to all patients of all ages with an incurable disease. It addresses the spiritual, psychological, and social needs of each patient and their family [20,21].…”

Section: Resultsmentioning

confidence: 99%

Difficulties experienced by parents of children with cancer: A literature review

Sagadiyeva

Zhumanbayeva

2021

Onkol. radiol. Kaz.

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Children with cancer experience certain difficulties and needs associated with pain, nutrition, weakness, infection, and hyperthermia. All these needs require satisfaction and support both from medical staff and the children’s families. One of the most difficult aspects of being parents of a child diagnosed with cancer is to balance normal family life with the sick child’s needs and treatment requirements. Cancer is a serious disease that creates many stress factors for family members. Families mostly feel that everything has changed in their lives with the cancer diagnosis and have to make many adjustments, including financial spendings. Treatments, hospital visits, and hospitalizations suddenly invade their normal family life. A shock after diagnosis, painful therapy, an associated disruption of family and social development, and a constant uncertainty of relapse affect not only the sick child but also his/her family members. The article aimed to describe the needs and difficulties of parents of a child with cancer. Results: Data analysis revealed four main areas where the parents of children with cancer experience difficulties: 1. changes in the daily life of families caring for children with cancer, 2. financial challenges, 3. lack of knowledge, 4. pain management, and 5. psychological health. Conclusion: Serious disease in a child possesses challenges for his/her parents due to the changes in families’ daily lives. These parents need additional knowledge of care, psychosocial support, especially when making decisions they have to make, such as terminating cancer treatment, giving consent to refuse resuscitation or life support

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“…Tasks are technical, time-consuming, physically demanding and sometimes distressing for the parent and child (McDonald et al, 2017; Smith et al, 2015; Spiers and Beresford, 2017). Rigorous care routines necessitate many hours at home, often isolating parents from their wider communities (Bužgová and Páleníková, 2015; Collins et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review

Oakley

Dunbar

Vries

2021

J Child Health Care

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The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.

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Lived experience of parents of children with life-limiting and life-threatening disease

Cited by 8 publications

References 8 publications

Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study

Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study

Difficulties experienced by parents of children with cancer: A literature review

Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review

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