Families With Children With Medical Complexity and Self-Management of Care: A Systematic Review of the Literature

Trowbridge, Kelly; Mische-Lawson, Lisa

doi:10.1080/00981389.2014.916776

Cited by 19 publications

(14 citation statements)

References 32 publications

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“…In this study, there was no statistical association between social support and overall stress, which contradicts several other studies that report a profound effect of support for families of medically complex children (Toly et al . , Trowbridge & Mische‐Lawson , Whiting ). The challenges confronted by the primary caregivers of OD children may be incomprehensible to others – such as family, friends and health professionals – and this can be stressful for these caregivers due to an inappropriate support provision.…”

Section: Discussionmentioning

confidence: 99%

“…Disruption in family life and functioning has been highlighted as one of the major stressors and burdens for the caregivers of medically complex children (Toly et al . , Trowbridge & Mische‐Lawson ). The social isolation of families has been well documented (Caicedo , Whiting ) as being a result of the child's mobility constraints due to medical equipment and the misunderstanding of families and friends about the child's needs (Wang & Barnard ).…”

Section: Introductionmentioning

confidence: 99%

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Primary caregivers of in‐home oxygen‐dependent children: predictors of stress based on characteristics, needs and social support

Wang

Lin

Lee

et al. 2016

Journal of Advanced Nursing

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Aim. To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support. Background. Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation. Design. The study used a cross-sectional design with three psychometric scalesModified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index. Methods. The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used. Results. A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39Á7 years. The average age of the oxygen-dependent children was 6Á68 years and their daily use of oxygen averaged 11Á39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need. Conclusion. To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Primary caregivers of in‐home oxygen‐dependent children: predictors of stress based on characteristics, needs and social support

Wang

Lin

Lee

et al. 2016

Journal of Advanced Nursing

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“…Approximately 15–19% of the children in the United States face CIs (Churchill, Villareale, Monaghan, Sharp, & Kieckhefer, ; Martire & Helgeson, ; U.S. Department of Health and Human Services, ). A CI is a physical or mental condition that requires frequent medical care and hospitalizations, does not remit spontaneously, may last for a long period of time, may not be cured, and prevents involvement in regular activities, such as attending school (Compas et al, ; Ollendick & Schroeder, ; Trowbridge & Mische‐Lawson, ). Children with CIs and their family members face substantial stress and uncertainty, and in the midst of this stress show significant resilience (Masten & Monn, ; Mullins et al, ).…”

Section: Introductionmentioning

confidence: 99%

A family affair: Supporting children with chronic illnesses

Nabors

Liddle

Graves

et al. 2018

Child

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Background: Children living with chronic illnesses may rely on family for social support during hospitalization. Understanding child and parent perspectives about the nature of the sibling and family relationships during hospitalization will provide information about these relationships during a stressful period.Methods: English-speaking children diagnosed with chronic illnesses, siblings, and parents participated. They were residing at a Ronald McDonald House. A qualitative study using interviews with children and parents was completed.Results: Seventeen mothers, eight children with illnesses, and twelve siblings completed interviews. Children with illnesses benefitted from connections with parents. Mothers believed that siblings and the ill child benefitted from being in close contact. Siblings were worried about their brother or sister with an illness, and despite this, the family was coping well. Siblings helped with the medical regimen for a brother or sister with a chronic illness. Trying to help the family function in a routine or "normal" fashion was important to children with illnesses and siblings.Conclusions: Family connection was critical for children with chronic illnesses during hospitalization. Findings highlighted the importance of sibling support as a factor promoting child and family resilience when a child is facing medical procedures.

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“…Unemployment was a risk factor for parental stress; the study affirmed that parents without employment show a high level of stress in all domains (Trowbridge and Mische‐Lawson, ). Monthly income and education level were, however, not associated with parental stress in this study, even though a recent survey examining risk factors for parents of in‐home oxygen‐dependent children identified financial stress as a key factor leading to parental stress (Wang et al ., ), especially if primary caregivers of children with chronic respiratory illness have a lower education and socio‐economic status (Caicedo, ; Feeley et al ., ).…”

Section: Discussionmentioning

confidence: 77%

“…Families of these types of children are prone to confront financial stress because of extra medical expenses and difficulty in coping with job commitments (Caicedo, ; Wang et al ., ). A child's illness severity and complexity in care may result in one or both parents needing to forfeit their work to take care of their child, especially if trained paediatric home care worker support or respite care is unavailable (Trowbridge and Mische‐Lawson, ; Caicedo, ).…”

Section: Discussionmentioning

confidence: 99%

Stress and uncertainty in parents of children with tracheobronchial malacia and stenosis

Soong

Wang

2019

Nursing in Critical Care

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Background: An increasing number of children are undergoing flexible bronchoscopy because of tracheobronchial malacia and stenosis, but there is little research related to their parents' stress and uncertainty. Aim: To explore and identify risk factors associated with stress and uncertainty among Taiwanese parents of children with tracheobronchial malacia and tracheabronchostenosis in a paediatric intensive care unit. Methods: A cross-sectional study design was implemented using two psychometric scales: Parenting Stress Index and Parents' Perception of Uncertainty Scale. Parents of Taiwanese children (0-18 years/o) with a diagnosis of tracheobronchial malacia or/and tracheabronchostenosis who underwent bronchoscopy in a paediatric intensive care unit were recruited. The analysis used descriptive statistics and multivariable linear regression. Results: Ninety parents who were caring for a total of 51 children were recruited. Stress and uncertainty both scored high and were positively correlated with each other. Four risk factors arising from parental stress were unemployment, parental uncertainty, the child's tracheobronchial malacia and tracheabronchostenosis and use of oxygen. Conclusions: Identifying likely causes of stress and uncertainty is essential for this parental group, particularly for parents facing unemployment, feelings of uncertainty and caring for children with both tracheobronchial malacia and tracheabronchostenosis and requiring oxygen. Relevance to clinical practice: Nursing practice can focus on better parental support for those parents who are unemployed, show feeling of uncertainty and care for children with combined tracheobronchial malacia and tracheabronchostenosis and other medical care, such as breathing symptom management, nasogastric feeding and oxygen therapy.

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Families With Children With Medical Complexity and Self-Management of Care: A Systematic Review of the Literature

Cited by 19 publications

References 32 publications

Primary caregivers of in‐home oxygen‐dependent children: predictors of stress based on characteristics, needs and social support

Primary caregivers of in‐home oxygen‐dependent children: predictors of stress based on characteristics, needs and social support

A family affair: Supporting children with chronic illnesses

Stress and uncertainty in parents of children with tracheobronchial malacia and stenosis

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