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Smith, S., Tallon, M., Smith, J., Jones, L. & Mörelius, E. (2023). COVID-19 in Western Australia: 'The last straw' and hopes for a 'new normal' for parents of children with long-term conditions. Health Expectations
Open this publication in new window or tab >>COVID-19 in Western Australia: 'The last straw' and hopes for a 'new normal' for parents of children with long-term conditions
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2023 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND: Children with long-term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID-19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions.

AIM: The study explored the stress experiences of parents caring for children with long-term conditions during COVID-19 in Western Australia.

DESIGN AND PARTICIPANTS: The study was codesigned with a parent representative caring for children with long-term conditions to ensure essential questions were targeted. Twelve parents of children with various long-term conditions were recruited. Ten parents completed the qualitative proforma, and two parents were interviewed in November 2020. Interviews were audio-recorded and transcribed verbatim. Data were anonymised and analysed using reflexive thematic analysis.

FINDINGS: Two themes were produced: (1) 'Keep my child safe' describes the children's vulnerabilities due to their long-term conditions, the adjustments parents' made to keep their children safe and the various consequences faced. (2) 'COVID-19's silver lining' covers the positives of the COVID-19 pandemic, including their children having fewer infections, the availability of telehealth appointments, relationship improvements and the parent's hopes for a new normal where behaviours prevent transmission of infectious (e.g., hand sanitising).

CONCLUSION: Western Australia provided a unique context for the COVID-19 pandemic due to no transmission of the virus severe acute respiratory syndrome coronavirus 2 at the time of the study. The tend and befriend theory aids in explaining the parents' stress experiences, and the application highlights a unique aspect of this theory. Parents tended to their children during COVID-19, but many could no longer rely on others for connection, support and respite, and became further isolated in attempting to protect their children due to COVID-19 consequences. The findings highlight that some parents of children with long-term conditions need specific attention during times of pandemics. Further review is recommended to support parents through the impact of COVID-19 and similar crises.

PATIENT OR PUBLIC CONTRIBUTION: This study was codesigned with an experienced parent representative who was part of the research team and involved throughout the research process to ensure meaningful end-user engagement and ensure essential questions and priorities were addressed.

Place, publisher, year, edition, pages
WILEY, 2023
Keywords
children, chronic, lived experiences, parents' experiences, qualitative, stress, stress coping
National Category
Nursing Pediatrics
Identifiers
urn:nbn:se:liu:diva-195226 (URN)10.1111/hex.13792 (DOI)001004935200001 ()37309296 (PubMedID)
Note

Funding: School of Nursing and Midwifery at Edith Cowan University, Western Australia; Perth Childrens Hospital Foundation; Joanna Cocozzas Foundation

Available from: 2023-06-16 Created: 2023-06-16 Last updated: 2023-11-06
Foster, M., Lisa Whitehead, L., O'sullivan, T. A., HILL, J. & Mörelius, E. (2023). Ethical considerations in undertaking research with children. Journal of Pediatric Nursing: Nursing Care of Children and Families, 73, 13-14
Open this publication in new window or tab >>Ethical considerations in undertaking research with children
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2023 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 73, p. 13-14Article in journal, Editorial material (Other academic) Published
Place, publisher, year, edition, pages
Elsevier, 2023
National Category
Medical Ethics
Identifiers
urn:nbn:se:liu:diva-199233 (URN)10.1016/j.pedn.2023.11.001 (DOI)001143847100001 ()37973436 (PubMedID)
Available from: 2023-11-21 Created: 2023-11-21 Last updated: 2024-01-31
Sahlén Helmer, C., Birberg Thornberg, U., Abrahamsson, T. & Mörelius, E. (2023). Mothers experiences of a new early collaborative intervention, the EACI, in the neonatal period: A qualitative study. Journal of Clinical Nursing, 32(11-12), 2892-2902
Open this publication in new window or tab >>Mothers experiences of a new early collaborative intervention, the EACI, in the neonatal period: A qualitative study
2023 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 11-12, p. 2892-2902Article in journal (Refereed) Published
Abstract [en]

Aim To explore mothers experiences of the EArly Collaborative Intervention. Background Preterm birth puts a considerable emotional and psychological burden on parents and families. Parents to moderate and late premature infants have shorter stays at the neonatal intensive care unit and have described a need for support. The EArly Collaborative Intervention was developed to support parents with preterm infants born between gestational Weeks 30 to 36. In this study, mothers experiences of the new intervention were explored. Design A qualitative design guided by a reflexive thematic analysis according to Braun and Clarke. Interviews were individually performed with 23 mothers experienced with the EArly Collaborative Intervention. Data were identified, analysed and reported using reflexive thematic analysis. The COREQ checklist was used preparing the manuscript. Results Two main overarching themes were constructed. The first theme, mothers feelings evoked from the EArly Collaborative Intervention describes the emotions raised by the intervention and how the intervention affected their parental role. Their awareness of the preterm babys behaviour increased, and the intervention helped the parents to communicate around their babys needs. The second theme, based on the preterm babys behavior, describes experiences of the provision and the learning process about their preterm babys needs and communication. The intervention was experienced as helpful both immediately and for future interaction with the baby. Conclusions Mothers found the intervention to be supportive and encouraging. They came to look upon their baby as an individual, and the new knowledge on how to care and interact with their baby affected both their own and their babys well-being. Furthermore, the intervention felt strengthening for their relationship with the other parent. Relevance to Clinical Practice The EArly Collaborative Intervention can support parents abilities as well as their relation to their baby and may thereby contribute to infant development, cognition and well-being.

Place, publisher, year, edition, pages
Wiley, 2023
Keywords
behaviour; communication; family; human development; infant care; intervention; learning; mothers; parenting; premature infant
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-186497 (URN)10.1111/jocn.16412 (DOI)000810764300001 ()35702001 (PubMedID)
Note

Funding Agencies|Region Ostergotland; Stiftelsen Sven Jerrings Fond

Available from: 2022-06-29 Created: 2022-06-29 Last updated: 2024-02-06Bibliographically approved
Moyes, A., Abbott, T., Baker, S., Reid, C., Thorne, R. & Mörelius, E. (2022). A parent first: Exploring the support needs of parents caring for a child with medical complexity in Australia.. Journal of Pediatric Nursing: Nursing Care of Children and Families, 67, e48-e57
Open this publication in new window or tab >>A parent first: Exploring the support needs of parents caring for a child with medical complexity in Australia.
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2022 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 67, p. e48-e57Article in journal (Refereed) Published
Abstract [en]

PURPOSE: In a recent paediatric nursing research priority setting study, youth, parents and healthcare professionals included 'practical and emotional support' among the top ten areas to focus on. The aim of this study was to explore the support needs of parents who have a child with medical complexity living in the family home.

DESIGN: Exploratory with a qualitative inductive approach.

METHODS: Semi-structured interviews with 12 mothers of children living with heterogenous medical complexity. Interviews were recorded, transcribed and analysed using thematic analysis. The COREQ checklist was used as a reporting guide.

RESULTS: Three themes were tied together by the finding that participants identified as 'a parent first'. The first theme represents the early days where participants desired emotional and practical support for becoming a parent of a child with medical complexity. In the second theme, participants desired more support for the discharge home from the hospital. In the last theme, participants described high levels of knowledge and expertise in relation to their child's unique needs and desired highly accessible support for keeping their child out of hospital.

CONCLUSION: Parents' support needs change over time and are similar despite the heterogeneity of their children's medical complexity. Parents seek services that support an independent family life and are responsive to their confidence and competence in caring for their child at home.

PRACTICE IMPLICATIONS: Interventions should be tailored to the changing support needs of parents over time.

Place, publisher, year, edition, pages
Elsevier, 2022
Keywords
Caregivers, Long-term care, Paediatric nursing, Qualitative research, Stress, psychological
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-191270 (URN)10.1016/j.pedn.2022.09.018 (DOI)36192287 (PubMedID)2-s2.0-85139178467 (Scopus ID)
Available from: 2023-01-25 Created: 2023-01-25 Last updated: 2023-09-30Bibliographically approved
Nelson, H. J., Pienaar, C., McKenzie, K., Williams, A. M., Swaminathan, G. & Mörelius, E. (2022). Development of the Australian hospital patient experience question set for parents. Collegian
Open this publication in new window or tab >>Development of the Australian hospital patient experience question set for parents
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2022 (English)In: Collegian, ISSN 1322-7696, E-ISSN 1876-7575Article in journal (Refereed) In press
Abstract [en]

Background: The Australian Commission on Safety and Quality in Health Care developed the Australian Hospital Patient Experience Question Set to ask adult patients about their experience of inpatient care. This question set was not validated for paediatric care. Aim: To adapt and validate the Australian Hospital Patient Experience Question Set for parents and carers of children who received inpatient care. Methods: Interviews with fourteen parents and carers were conducted. Content analysis was used to revise the question set and to identify experience specific to children and parents. The Question Set was revised, including three new questions to reflect parent experience. Content validity of each new question was assessed. Data was split and construct validity assessed using exploratory and confirmatory factor analysis (n=1500). Findings: Two main qualitative categories of care included ‘parent experience’ and ‘children being heard’. Emotional support was an integral aspect of parent experience. The revised question set (13-question, one-factor model of good fit) demonstrated construct validity (n=500: Root Mean Square Error of Approximation=0.042, Confirmatory Fit Index=0.997, Tucker Lewis Index=0.996, Composite reliability=0.962). Discussion: This study adds empirical support for a common measurement framework for experience of care in children's health services. Parents spoke of the value of having a parent and a child reported survey. The next step is for children to report on their own experience. Conclusion: The revised (parent-reported) question set provides a validated tool which reflects the unique experience of parents and facilitates consistent monitoring and improvement of patient experience in a paediatric inpatient setting. © 2022

Place, publisher, year, edition, pages
Elsevier, 2022
Keywords
Child and Family Centred Care; Content analysis; Emotional support; Patient experience; Safety and quality; Survey design and validation
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-191283 (URN)10.1016/j.colegn.2022.09.003 (DOI)2-s2.0-85138587778 (Scopus ID)
Available from: 2023-01-25 Created: 2023-01-25 Last updated: 2023-04-21Bibliographically approved
Flankegård, G., Mörelius, E. & Rytterström, P. (2022). Everyday life with childhood functional constipation: A qualitative phenomenological study of parents' experiences. Journal of Pediatric Nursing: Nursing Care of Children and Families, 67, E165-E171
Open this publication in new window or tab >>Everyday life with childhood functional constipation: A qualitative phenomenological study of parents' experiences
2022 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 67, p. E165-E171Article in journal (Refereed) Published
Abstract [en]

Childhood functional constipation (FC) is a worldwide problem with treatment regiments affecting everyday life.

Aim

To explore parents´ experiences of living with a child with FC and its impact on everyday family life.

Method

A qualitative phenomenological interview study using a reflective lifeworld research approach. Interviews with 15 parents of otherwise healthy children aged 1–14 years affected by FC.

Findings

Shame is the driving force making parents put everyday life on hold. The quest for control, self-imposed loneliness, guilt, inadequacy, and frustrating battles become essential parts of everyday life to protect it from FC-related shame.

Conclusion

FC has as great an impact on everyday life as any childhood illness. Every part of family life is affected by FC. Continuously family support and guidance are needed.

Practice implications

Healthcare professionals need to take FC more seriously, listen to the parents and try to understand their experiences of everyday life to enable custom made care plans with the family-unit in focus. Care with clinical sensitivity might help parents deal with the attendant shame and stigmatization that stem from illness beliefs about FC.

Place, publisher, year, edition, pages
Elsevier, 2022
Keywords
Functional constipation, Children, Parent experiences, Shame, Qualitative, Reflective lifeworld research
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-188960 (URN)10.1016/j.pedn.2022.07.021 (DOI)000922011600022 ()35931621 (PubMedID)
Available from: 2022-10-04 Created: 2022-10-04 Last updated: 2023-05-04Bibliographically approved
Nelson, H. J., Pienaar, C., Williams, A. M., Munns, A., McKenzie, K. & Mörelius, E. (2022). Patient experience surveys for children's community health services: A scoping review.. Journal of Child Health Care, 26(1), 154-166
Open this publication in new window or tab >>Patient experience surveys for children's community health services: A scoping review.
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2022 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 26, no 1, p. 154-166Article in journal (Refereed) Published
Abstract [en]

Patient experience surveys have a user focus and measure the quality of person-centered health care for hospital inpatients and consumers of community health services, providing a governance process to evaluate the quality of care and to action improvement. Experience of care has been described as effective communication, respect and dignity, and emotional support. Measurement criteria for these domains are not standardized, leading to inconsistent reporting of patient experience. The objective of this scoping review was to synthesize evidence for measuring experience of care in children's community health services using the Joanna Briggs Institute framework for scoping review method. Three parent-reported surveys met the inclusion criteria, and 50 survey items were assessed by expert reviewers for fit to domains of healthcare experience. Conceptual domains of parent experience in children's community health services included respect and dignity, effective communication, and emotional support. A gap was identified, in that few items in identified surveys measured emotional support. This contribution will promote consistent reporting of healthcare experience, informing policy and practice for person-centered health care.

Place, publisher, year, edition, pages
Sage Publications, 2022
Keywords
community health, experience, measure, parent, respect
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-191014 (URN)10.1177/13674935211005874 (DOI)000636023500001 ()33787347 (PubMedID)2-s2.0-85103583422 (Scopus ID)
Available from: 2023-01-25 Created: 2023-01-25 Last updated: 2023-02-03Bibliographically approved
Mörelius, E., Munns, A., Smith, S., Nelson, H. J., McKenzie, A., Ferullo, J. & Gill, F. J. (2022). Pediatric and child health nursing: A three-phase research priority setting study in Western Australia.. Journal of Pediatric Nursing: Nursing Care of Children and Families, 63, 39-45
Open this publication in new window or tab >>Pediatric and child health nursing: A three-phase research priority setting study in Western Australia.
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2022 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 63, p. 39-45Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Priority settings are important to plan and direct future research. The aim of this study was to identify the top ten pediatric and child health nursing research priorities from the perspectives of consumers, community, and healthcare professionals in Western Australia.

DESIGN AND METHODS: This study used an adapted James Lind Alliance Priority Setting Partnership design with three phases. 1) A planning workshop to inform a survey. 2) A survey using five open-ended-questions distributed between October 2020 and January 2021 through social media and healthcare professionals' emails. Responders' statements were analyzed with content analysis. 3) A consensus workshop to finalize and rank the themes.

RESULTS: The planning workshop participants (n = 25) identified gaps such as community child healthcare and confirmed lack of consumer engagement in previous studies. The survey responses (n = 232) generated 911 statements analyzed into 19 themes. The consensus workshop participants (n = 19) merged and added themes, resulting in 16 final themes. The top three ranked themes were: 'access to service', 'mental health and psychological wellbeing', and 'communication'.

CONCLUSIONS: The research themes are necessarily broad to capture the wide range of issues raised, reflecting the scope of pediatric and child health nursing.

PRACTICE IMPLICATIONS: The priorities will inform future research to be directed to areas of priority for stakeholders who have often not had a say in setting the research agenda.

Place, publisher, year, edition, pages
Elsevier, 2022
Keywords
Adolescent, Child, Children's nursing, Consumers, Research priorities, Stakeholders
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-191274 (URN)10.1016/j.pedn.2021.12.016 (DOI)000820531000005 ()34973465 (PubMedID)2-s2.0-85121915466 (Scopus ID)
Available from: 2023-01-25 Created: 2023-01-25 Last updated: 2023-03-15Bibliographically approved
Areskoug Sandberg, E., Duberg, A., Lorenzon Fagerberg, U., Mörelius, E. & Särnblad, S. (2022). Saliva Cortisol in Girls With Functional Abdominal Pain Disorders: A Randomized Controlled Dance and Yoga Intervention.. Frontiers in Pediatrics , 10, Article ID 836406.
Open this publication in new window or tab >>Saliva Cortisol in Girls With Functional Abdominal Pain Disorders: A Randomized Controlled Dance and Yoga Intervention.
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2022 (English)In: Frontiers in Pediatrics , E-ISSN 2296-2360, Vol. 10, article id 836406Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Functional abdominal pain disorders (FAPDs) are common among girls and has been associated with stress. Cortisol is one of the major stress hormones. Dance and yoga have been shown to reduce abdominal pain among girls with FAPDs.

AIM: To investigate the effect of an 8-month intervention with dance and yoga on cortisol levels in saliva among girls with FAPDs.

METHODS: A total of 121 girls aged 9-13 years with irritable bowel syndrome (IBS) or functional abdominal pain were included in the study. Participants were randomized into an intervention group and a control group. The intervention group attended a combined dance and yoga session twice a week for 8 months. Saliva samples were collected during 1 day, in the morning and evening, at baseline, and at 4 and 8 months. Subjective pain and stress were assessed as well.

RESULTS: No significant effects on saliva cortisol levels between groups were observed after completion of the intervention at 8 months. However, evening cortisol and evening/morning quotient were significantly reduced at 4 months in the intervention group compared to the control group (p = 0.01, p = 0.004). There was no association between cortisol quota and pain or stress.

CONCLUSION: Improvements in cortisol levels were seen in the intervention group at 4 months but did not persist until the end of the study. This indicates that dance and yoga could have a stress-reducing effect during the ongoing intervention.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2022
Keywords
children, cortisol, dance, intervention, just in time, recurrent abdominal pain, stress, yoga
National Category
Nursing Physiotherapy Pediatrics
Identifiers
urn:nbn:se:liu:diva-191273 (URN)10.3389/fped.2022.836406 (DOI)000803667500001 ()35633978 (PubMedID)2-s2.0-85131169842 (Scopus ID)
Available from: 2023-01-25 Created: 2023-01-25 Last updated: 2023-02-16Bibliographically approved
Adama, E. A., Adua, E., Bayes, S. & Mörelius, E. (2022). Support needs of parents in neonatal intensive care unit: An integrative review.. Journal of Clinical Nursing, 31(5-6), 532-547
Open this publication in new window or tab >>Support needs of parents in neonatal intensive care unit: An integrative review.
2022 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 31, no 5-6, p. 532-547Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Having an infant in the neonatal intensive care unit (NICU) is associated with intense emotional stress for both mothers and fathers. However, with the right support from staff, this stress can be reduced significantly. Although evidence on needs of parents in the neonatal unit exists, there is lack of a systematic integrative review on the support needs of parents in the neonatal unit. Current review evidence is needed to support busy neonatal unit clinicians in their practice.

AIM AND OBJECTIVES: The purpose of this integrative review is to explore the current available evidence to describe and understand the support needs of parents of infants in the NICU.

METHODS: The integrative review process of Whittemore and Knafl (2005) was used to guide this study. Six databases-MEDLINE, CINHAL, PubMed, Scopus, Google Scholar and PsycINFO-were searched for eligible studies using relevant keywords. Primary studies published in English language from 2010 to 2021 were reviewed following a pre-determined inclusion criteria. Studies that met the inclusion criteria were critically appraised using the Mixed Methods Appraisal Tool (MMAT). The review report is guided by the PRISMA 2020 checklist for systematic reviews.

RESULTS: Overall, 24 primary qualitative, quantitative and mixed methods studies were included in the review. Analysis of included studies resulted in six themes that demonstrate the support needs of parents in the NICU; 1. Information needs; 2. Emotionally intelligent staff; 3. Hands-on support; 4. Targeted support; 5. Emotional needs; and 6. Practical needs.

CONCLUSION: This review has presented the current evidence on the needs of parents from their own perspective. Healthcare workers' understanding and supporting these needs in the NICU is likely to increase parental satisfaction and improve health outcomes for parents, infants and their family.

RELEVANCE TO CLINICAL PRACTICE: Parents of infants in the NICU require staff support to enhance their experiences, well-being, caring and parenting confidence during admission and post-discharge. As parents are in constant need for informational, emotional and practical support, continuing professional development for NICU staff should place emphasis on effective communication strategies, enhancing emotional intelligence and empathy among staff. NICU staff should build positive ongoing relationships with parents and provide targetted support for mothers and fathers.

Place, publisher, year, edition, pages
Wiley-Blackwell Publishing Inc., 2022
Keywords
NICU, infants, needs, neonatal unit, parents, support
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-191275 (URN)10.1111/jocn.15972 (DOI)000678980600001 ()34312923 (PubMedID)2-s2.0-85111120599 (Scopus ID)
Available from: 2023-01-25 Created: 2023-01-25 Last updated: 2023-02-03Bibliographically approved
Organisations
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ORCID iD: ORCID iD iconorcid.org/0000-0002-3256-5407

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