Relations governed by uncertainty: part of life of families of a child with asthma

Rydström, Ingela; Dalheim-Englund, Ann-Charlotte; Segesten, Kerstin; Rasmussén, Birgit H.

doi:10.1016/s0882-5963(03)00140-4

Cited by 23 publications

(21 citation statements)

References 32 publications

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“…Liminal caregivers experienced a reduced participation in life and neglected themselves as they focused on “becoming” (Bulley et al, ; Buschenfeld et al, ; Donnelly, ; Galvin et al, ; Liedstrom et al, ; Navab et al, ; Rydstrom, Dalheim‐Englund, Segesten, & Rasmussen, ; Sadala et al, ). Loss of social connections led to feeling “like a prisoner in your own home” (Valimaki et al, ), A reduction in participation in life was dissatisfying for many, who strove to adapt and learn to navigate the “roller coaster” or uncertainty of a chronic illness trajectory (Donorfio & Kellett, ; Liedstrom et al, ; Rydstrom et al, ). The challenges inherent in chronic illness care made it necessary to depend on others for guidance and instructions (Galvin et al, ; Harrow et al, ; Huang & Peng, ; Williams et al, ).…”

Section: Resultsmentioning

confidence: 99%

“…The trajectory of the suffering was not linear in nature (Harrow et al, ); rather, caregivers described the suffering in fluid terms, such as ebbing and flowing (Brown & Powell‐Cope, ; Bulley et al, ; Murray et al, ; Rydstrom et al, ; Sadala et al, ). Adjusting to these swings and finding a balance became a task that had to be mastered (Buschenfeld et al, ; Frankowska & Wiechula, ).…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Gibbons

Ross

Bevans

2014

Research in Nursing & Health

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Family caregiving is a significant rite of passage experienced by family caregivers of individuals with protracted illness or injury. In an integrative review of 26 studies, we characterized family caregiving from the sociocultural perspective of liminality and explored associated psychosocial implications. Analysis of published evidence on this dynamic and formative transition produced a range of themes. While role ambiguity resolved for most, for others, uncertainty and suffering continued. The process of becoming a caregiver was transformative and can be viewed as a rebirth that is largely socially and culturally driven. The transition to family caregiving model produced by this review provides a holistic perspective on this phenomenon and draws attention to aspects of the experience previously underappreciated.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Gibbons

Ross

Bevans

2014

Research in Nursing & Health

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“…10 Several studies highlight the important emotional impact of asthma on adolescents, 12 children and their families. 13 Nevertheless, paper versions of quality of life questionnaires have not been incorporated in the routine asthma clinic. The electronic adaptation of quality of life questionnaires has recently been described 8 9 and this medium has clear advantages making routine use feasible: it is attractive to children, easy to fill in and practical for routine paediatric asthma care.…”

Section: Discussionmentioning

confidence: 99%

Computerised paediatric asthma quality of life questionnaires in routine care

Mussaffi

Omer

Prais

et al. 2007

Archives of Disease in Childhood

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Background: Asthma quality of life questionnaires are not readily incorporated into clinical care. We therefore computerised the Paediatric Asthma Quality of Life Questionnaire (standardised) (PAQLQ(S)) and the Paediatric Asthma Caregivers Quality of Life Questionnaire (PACQLQ), with a colour-coded printed graphical report. Objectives: To (a) assess the feasibility of the electronic questionnaires in clinical care and (b) compare the child's PAQLQ scores with the parent's score, physician's clinical score and spirometry. Methods: Children with asthma were given a clinical severity score of 1-4 (increasing severity) and then completed the PAQLQ(S) electronically (scores 1-7 for increasing quality of life in emotional, symptoms and activity limitation domains) followed by spirometry and physician review. Parents completed the PACQLQ. Inclusion criteria required fluent Hebrew and reliable performance of spirometry. Children with additional chronic diseases were excluded. Results: 147 children with asthma aged 7-17 years completed PAQLQs and 115 accompanying parents completed PACQLQs, taking 8.3 (4.3-15) and 4.4 (1.5-12.7) min, respectively (mean (range)). Graphical reports enabled physicians to address quality of life during even brief visits. Children's (PAQLQ) and parents' (PACQLQ) total scores correlated (r = 0.61, p,0.001), although the children's median emotional score of 6.3 was higher than their parents' 5.7 (p,0.001), whereas median activity limitation score was lower than their parents': 5.0 and 6.8, respectively (p,0.001). No correlation was found with physician's clinical score or spirometry. Conclusions: Electronic PAQLQs are easy to use, providing additional insight to spirometry and physician's assessment, in routine asthma care. Future studies must assess impact on asthma management.

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“…Rydstrom et al . found that the worry of the mothers of children with asthma might be about the severity of asthma 24 …”

Section: Discussionmentioning

confidence: 99%

Having a child with asthma—Quality of life for Jordanian parents

Al-Akour

Khader

2009

Int J of Nursing Practice

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This study was conducted to assess the quality of life (QoL) of Jordanian parents of children with asthma and its associated factors. Three hundred and twenty-six parents of 200 children participated in the study. The Pediatric Asthma Caregivers' Quality of Life Questionnaire (PACQLQ) was used to measure how parents of children with asthma disease impaired their daily life during the previous week on two domains 'activity limitations' and 'emotional function'. In this study, parents of children with asthma scored their QoL during the past week moderately to the positive end of the scale but they scored more limitations in the domain of activities than in emotions. Parents in the same family scored activity domain fairly similar and there was a significant difference in their scoring of total emotional function. Parents with older children, living in the rural areas, mothers of children with mild asthma were associated with higher QoL. Children received needed daily asthma medication during the preceding week. Asthma medication might mean to the parents that the child was getting the best possible treatment. Further studies to identify the factors that influence QoL of parents of children with asthma in Jordan are needed.

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Relations governed by uncertainty: part of life of families of a child with asthma

Cited by 23 publications

References 32 publications

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Computerised paediatric asthma quality of life questionnaires in routine care

Having a child with asthma—Quality of life for Jordanian parents

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