Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

Donnelly, James P.; Downing, Kim; Cloen, Jason; Fragen, Patricia; Gupton, Alyssa; Misasi, Jen; Michelson, Kelly

doi:10.1016/j.jpainsymman.2017.12.484

Cited by 16 publications

(24 citation statements)

References 26 publications

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“…37 Further, information delivered to parents using medical jargon left parents distressed and requiring further clarification but often felt apprehensive to do so. 23,38,39…”

Section: Resultsmentioning

confidence: 99%

“…50 The experiences of parents with income decline, cost of care and adjustment to their lifestyle changes were reported. 38,39,47 Parents described a dramatic decrease in their income and financial uncertainty as being major problems and reported financial stress. 47 One study reported that 71% of parents interviewed gave up work, decreased their working hours or changed careers to be more flexible in caring for their child.…”

Section: Resultsmentioning

confidence: 99%

“…The need of siblings was identified as being as important as the need of their ill child according parents in six articles. 34,35,39,50,60,61 All family members were affected when parents cared for a child with a life limiting condition, and parents felt a need for health professionals to understand that. 34 Hospitalisation and instability of the child’s disease and condition could result in siblings feeling anxious and stressed.…”

Section: Resultsmentioning

confidence: 99%

“…These reported unmet support needs appear to have practical solutions if a systematic approach to assessment is taken and strategies implemented to address and reassess needs. Despite this, only six of 44 articles reviewed reported assessing parent carer support needs, 22,28,30,39,44,57 and most were retrospectively used to evaluate support received . A variety of instruments were reported, some of which were designed or adapted for the purpose of specific studies.…”

Section: Discussionmentioning

confidence: 99%

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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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“…37 Further, information delivered to parents using medical jargon left parents distressed and requiring further clarification but often felt apprehensive to do so. 23,38,39…”

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

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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“…It can also negatively affect the ability and selfefficacy of caregivers, especially mothers. Therefore, anxiety and concern management can be particularly helpful (11). In fact, when parents, especially mothers, feel empowered in a critical condition, they support their sick children and facilitate their treatment process (12).…”

Section: Introductionmentioning

confidence: 99%

Relationship Between Mothers’ Concerns and Nursing Support of Children Admitted to Baqiyatallah Al-Azam Hospital of Ali Abad Katoul, Golestan Province, Iran, in 2018

2019

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Background: Hospitalization of children is one of the main causes of anxiety and concern for families. Mothers of sick children need emotional support to provide effective care and adequate support for their children. Objectives: Thus, the present study was conducted to investigate the relationship between parental concerns and nursing support of hospitalized children. Methods: This descriptive cross-sectional study was conducted on 150 mothers of children admitted to the Pediatric Ward of Baqiyatallah Al-Azam Hospital in Ali Abad Katoul, Golestan province, Iran, in 2018. The children were hospitalized for at least 24 h, and were selected by the convenience sampling method. Concerns of mothers were measured by the Parental Concerns Questionnaire and nursing support was assessed by the Nursing Support of Parents Questionnaire through individual interviews. Data were analyzed by SPSS version 21 software at a significance level of 5%. Results: The mean scores of mothers' concerns and nursing support were 16.6 ± 5.6 and 72.01 ± 16.52, respectively. Pearson correlation coefficient showed a significant relationship between nursing support and mothers' concerns (r =-0.22, P = 0.004). Conclusions: Mothers' concerns are decreased by increasing nursing support. By identifying factors effective in decreasing mothers' concerns, the treatment team members, especially nurses, can play an important role in providing nursing care and support for mothers of hospitalized children. Therefore, increasing self-confidence of mothers and providing nursing support for them will increase the quality of care and satisfaction of patients and their caregivers, especially the mothers.

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A quest for meaning: A qualitative exploration among children with advanced cancer and their parents

et al. 2020

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Objective Meaning‐making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning‐making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning‐making pre‐bereavement among children with advanced cancer and their parents. Methods As part of a larger study examining shared decision‐making near the end of life, 24 children with advanced cancer and/or high‐risk cancer, 26 mothers, and 11 fathers participated in individual, semi‐structured interviews. Analyses focused on questions regarding meaning‐making. Four coders analyzed the data via directed content analysis. Results Three major meaning‐making themes emerged: (1) sense‐making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit‐finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. Conclusions Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high‐risk illness. Clinicians might consider if meaning‐centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high‐risk cancer and their parents.

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Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

Abstract: Initial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.

Cited by 16 publications

References 26 publications

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

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

Relationship Between Mothers’ Concerns and Nursing Support of Children Admitted to Baqiyatallah Al-Azam Hospital of Ali Abad Katoul, Golestan Province, Iran, in 2018

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents

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