Benefit-finding among young adults with spina bifida

Kritikos, Tessa K; Stiles‐Shields, Colleen; Shapiro, Jenna B.; Holmbeck, Grayson N.

doi:10.1177/1359105321990804

Cited by 4 publications

(2 citation statements)

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“…However, future research must investigate the link between BF and psychosocial outcomes. 39 The outcomes of the predictors of BF are still debatable. This study will analyse the predictors of BF from the perspectives of the patient, caregiver and dyads.…”

Section: Methods and Analysismentioning

confidence: 99%

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Benefit finding in first-ever young and middle-aged patients who had a stroke and their spousal caregivers in China: a longitudinal mixed-methods study protocol

Zhang

Wang

et al. 2022

BMJ Open

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IntroductionThe global burden caused by stroke is shifting to young and middle-aged people. Researchers have emphasised the significance of benefit finding (BF) in psychological health. However, current research has paid little attention to stroke and has discussed BF from only a single perspective, that is, that of either patients or caregivers. Our study aims to understand the changing trajectory, predictors and dyadic interaction of BF in dyads of patient who had a stroke and caregiver.Methods and analysisThis study is a longitudinal mixed-methods, multicentre study. A total of 142 patients who had a stroke and 142 spousal caregivers will be investigated. Participants will be recruited from four large public hospitals in northern China. Quantitative and qualitative data will be collected at five time points (near discharge and 1, 3, 6 and 12 months following discharge). Validated and reliable questionnaires will be used in quantitative studies. Information on sociodemographic data, BF, functional status, perceived stress, coping styles and mutuality will be collected from the dyads. Qualitative data will be collected via semistructured interviews and observations. The growth mixture model will be used to analyse quantitative data, and Colaizzi’s seven-step analysis method will be used to analyse qualitative data. We plan to conduct parallel but separate quantitative and qualitative data analyses and ultimately integrate the data sets to determine confirmation, expansion or discordance.Ethics and disseminationAll participants will be provided with an informed consent form. This study will encode all identifiable data and store all recorded data on a secure research server. This study has been approved by the Ethics Review Committee of the College of Nursing and Health, Zhengzhou University (ZZUIRB2020-53). The results of the longitudinal study will be published in peer-reviewed journals and presented at national conferences.Trial registration numberChiCTR2000039509.

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Section: Methods and Analysismentioning

confidence: 99%

“…Studies have assessed the relationships between demographic and medical variables and BF. However, future research must investigate the link between BF and psychosocial outcomes 39. The outcomes of the predictors of BF are still debatable.…”

Section: Methods and Analysismentioning

confidence: 99%

Benefit finding in first-ever young and middle-aged patients who had a stroke and their spousal caregivers in China: a longitudinal mixed-methods study protocol

Zhang

Wang

et al. 2022

BMJ Open

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Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023

Mannino,

Reens,

Smith

et al. 2024

Health Care Transitions

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Inclusive measure development: amplifying the voices of adolescents and young adults with spina bifida in a new measure of benefit-finding and growth

Kritikos,

Smith,

Stiles-Shields

et al. 2024

Journal of Pediatric Psychology

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Objective Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties. Method To generate items for the new measure, 20 adolescents and young adults with SB completed qualitative interviews regarding their experience of living with SB. Interviews were coded for benefits. Questionnaire items were generated from these benefits, and an expert panel refined the wording of these items. The resultant 31-item measure was shared with six of the 20 participants for feedback and then piloted among 251 youth with SB. The factor structure of the measure was confirmed and reliability and convergent validity were assessed. Results Both a one- and four-factor structure were supported. The four factors include: Life Perspectives and Priorities, Personal Characteristics and Traits, Connections and Opportunities, and Problem Solving. Higher total and factor scores represent greater benefit-finding and growth. The measure demonstrated excellent internal consistency (α = 0.95). The new measure also showed significant positive correlations with optimism, positive affect, and life satisfaction. Conclusions This study produced a measure of benefit-finding and growth for youth with SB. Clinically, information about what youth with SB perceive to be their areas of strength and growth from their condition provides crucial insight into which factors to enhance in this population.

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Benefit-finding among young adults with spina bifida

Cited by 4 publications

References 50 publications

Benefit finding in first-ever young and middle-aged patients who had a stroke and their spousal caregivers in China: a longitudinal mixed-methods study protocol

Benefit finding in first-ever young and middle-aged patients who had a stroke and their spousal caregivers in China: a longitudinal mixed-methods study protocol

Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023

Inclusive measure development: amplifying the voices of adolescents and young adults with spina bifida in a new measure of benefit-finding and growth

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