The Long Road to Farewell: The Needs of Families With Dying Children

Cacciatore, Joanne; Thieleman, Kara; Lieber, Angela S.; Blood, Cybele; Goldman, Ricki

doi:10.1177/0030222817697418

Cited by 15 publications

(19 citation statements)

References 15 publications

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“…Professional attitudes turn out to be an important factor in grief resolution 43,44. Parents particularly value professionals’ presence, which is defined as a form of physical and affective supportive care, the individualisation and continuation of care during bereavement, and healthcare providers’ non‐judgmental and empathic attitudes 45,46,47,48. Importantly, in the present study, other professionals such as psychologists or social workers with the skills to provide such care were in fact not integrated in the care team.…”

Section: Discussionmentioning

confidence: 79%

‘In the hospital there are no care guidelines’: experiences and practices in perinatal loss in Spain

Fernández‐Alcántara

Schul-Martin

Garcı́a

et al. 2020

Scandinavian Caring Sciences

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In the hospital there are no care guidelines': experiences and practices in perinatal loss in Spain Background and objectives: Healthcare professionals play an important role in supporting and attending to families that experience a perinatal loss. Previous research has identified the existence of obstacles that professionals may encounter during their practices. The main objective of the current research was to identify and examine the subjective experiences and practices of experienced professionals attending to perinatal loss in the hospital context in Spain. Design: Qualitative descriptive design. Setting: Three different hospitals in Spain. Participants: Sixteen professionals were interviewed, including doctors, nurses, midwives, nursing assistants, a psychologist and a funeral home manager. Methods: Individual semi-structured interviews focusing on three areas were carried out: practices with the babyfoetus, practices with parents and interaction with the team. A thematic analysis was performed using the three main focuses of the semi-structured interview (deductive approach) and the codes that emerged from the data (inductive approach). Results: Regarding guideline-based care for the baby/foetus, participants made a distinction between the initial process of care for the baby and the decision-making process with parents. Where support for families was concerned, participants identified considerable variability in the practices used and lack of organisational and care guidelines, psychological support and follow-up. Finally, interactions with other team members were perceived as a source of support, although participants identified a significant lack of coordination. Conclusion: Participants reported variability of practices in care for the baby and parents, lack of continuity-of-care guidelines and the importance of support from a coordinated healthcare team.

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Section: Discussionmentioning

confidence: 79%

‘In the hospital there are no care guidelines’: experiences and practices in perinatal loss in Spain

Fernández‐Alcántara

Schul-Martin

Garcı́a

et al. 2020

Scandinavian Caring Sciences

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“…[21][22][23][24][25][26][27][28] Compassionate and open communication played a vital role in hindering or aiding families' interaction with health professionals and their experience. 22,27,[29][30][31][32] A lack of compassion or open communication contributed to an increase in parents' grief after death. 25,27,33 Health professionals who took the time to listen, answered questions, accepted parental views and showed compassion were described by parents as very important to them.…”

Section: Synthesis Of Resultsmentioning

confidence: 99%

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

et al. 2020

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Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

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“…The number of deaths for children under-five was 131,000, infant deaths numbered 110,000 and neonatal deaths 68,000 (World Health Organisation, 2017). Children with terminal illness and their families have complex needs (Hunt et al, 2015), such as information, communication and emotional support from health care providers (Cacciatore, Thieleman, Lieber, Blood, & Goldman, 2017). Therefore, as revealed by Virdun et al (2015), psychosocial support is one of the essential elements of optimal paediatric palliative care for children.…”

Section: Introductionmentioning

confidence: 99%

The Needs of Children with Terminal Illness: A Qualitative Study

Adistie

Lumbantobing

Maryam

2019

Child Care in Practice

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Purpose: The response of each child to terminal illness treatment is highly individual. This will certainly affect the level and type of perceived needs. This study is conducted to examine the needs of children with terminal illness from the perspective of nurses and parents. Method: A qualitative descriptive study was conducted in this research. The data collection process included in-depth interviews with eight nurses and eleven parents and focus group discussion with seven nurses. The sampling technique used purposive sampling. Data were analyzed using content analysis. Results: Based on the perspective of nurses and parents the needs of children with terminal illness in the biological aspect require the fulfilment of basic biological needs, a therapy programme with minimal side effects, intervention to improve comfort, optimal infection prevention, and on-going care. While in the psychological aspects, the children and parents need information, motivation, tools to overcome the anxiety of parents, parental involvement and education for children and families. In the social aspect there are the children's need to play, need for school, and need for social support. In the spiritual aspect, the children need to be able to pray, receive spiritual guidance, and also to have spiritual guidance to prepare for death, and die with dignity. Conclusion: The needs of a child with terminal illness are complex and require special attention from the nurse. Therefore, nurses have a very important role to be able to comprehensively assess the needs of children with terminal illness in an effort to improve the quality of life of children.

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The Long Road to Farewell: The Needs of Families With Dying Children

Cited by 15 publications

References 15 publications

‘In the hospital there are no care guidelines’: experiences and practices in perinatal loss in Spain

‘In the hospital there are no care guidelines’: experiences and practices in perinatal loss in Spain

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

The Needs of Children with Terminal Illness: A Qualitative Study

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