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To promote health in children with experience of cancer treatment
Jönköping University, School of Health and Welfare, HHJ. CHILD.
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to develop knowledge about how to promote health in children treated for cancer and how health promotion interventions based on such knowledge can be evaluated. In this thesis, a descriptive and explorative design has been used, comprising both qualitative (Papers I-III) and quantitative (Papers I and IV) methods. A nationwide cohort of 144 childhood cancer survivors (24-42 years) answered a questionnaire about the support they had received from health care services (Paper I). Fifteen children (8-12years), with experience of cancer treatment, participated in five focus groups with two sessions per group (Paper II and III). The focus group methodology was combined with participatory and art-based techniques, such as draw and tell and photography. The children discussed what promotes health and what friendship is about. A methodological design was used to psychometrically test the Swedish version of the Minneapolis-Manchester Quality of Life instrument (MMQL) (Paper IV). The study included 950 pupils in grade 6 and 9 from seven primary schools. In addition to this, a comparison of the MMQL instrument with the health-promoting factors described by children in the focus groups was performed.

The findings showed that there is a need for health-promoting factors, such as knowledge and psychosocial support, from health care services for childhood cancer survivors. Their family and friends may contribute with support and then serve as health-promoting factors. Health-promoting factors, according to children 8-12 years of age and with experience of cancer treatment, are meaningful relationships, recreational activities and a trustful environment. The children expressed a holistic view of what promotes their health. Friendship, from the perspective of the children, is a process of equal and mutual commitment that develops over time and with interactions occurring face-to-face and digitally. The MMQL instrument may be valid and reliable in a sample of healthy children. However, less than one-third of the items in the MMQL instrument could be linked to the health-promoting factors that the children participating in the focus groups highlighted. In conclusion, the findings in this thesis contribute knowledge from a participant perspective regarding the needs and the experiences of health-promoting factors for those who have received treatment for cancer. This knowledge could form a basis for development of health promotion interventions aimed at children who have received treatment for cancer. It is suggested that if the MMQL instrument is used to evaluate health promotion among children who have received treatment for cancer, the MMQL should be complemented with items that capture aspects of health that are important to the children.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare , 2016. , p. 95
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 66
Keywords [en]
Children, cancer, health promotion, nursing, focus group, photography, questionnaire, validity, reliability
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-28677ISBN: 978-91-85835-65-2 (print)OAI: oai:DiVA.org:hj-28677DiVA, id: diva2:885131
Public defence
2016-01-28, Forum Humanum, Hälsohögskolan i Jönköping, Jönköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-12-18 Created: 2015-12-18 Last updated: 2015-12-18Bibliographically approved
List of papers
1. Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer
Open this publication in new window or tab >>Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer
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2016 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 105-112Article in journal (Other academic) Published
Abstract [en]

PURPOSE:

Improved survival rates of pediatric cancer have drawn attention on how to best facilitate long-term follow up and transition from pediatric to adult care. The transition process is multifactorial and necessitates the joint involvement of the patient, the family and the healthcare providers. The purpose of this study was to explore the experiences of support from healthcare services during the transition from adolescence to adulthood described by young adult survivors of pediatric cancer.

METHODS:

A mixed method with a convergent parallel design was used to evaluate the experiences of receiving support from healthcare services (eg pediatric oncology and pediatric clinic) during transition from adolescence to adulthood described by young adult survivors of pediatric cancer (n = 213) in a nation wide cross-sectional survey.

RESULTS:

A quantitative assessment of the experienced extent and satisfaction of support from healthcare services to handle physical, mental and social changes to continue life after the disease showed that a majority of the participants had received insufficient support. The qualitative analysis indicated a need for equal roles in healthcare to promote participation, a need to manage and process consequences of the disease, and a need for continuous support.

CONCLUSIONS:

During transition to adulthood, there's a need for a personalized care plan that takes a holistic approach towards supporting the young cancer survivor in managing life in the best way. Identifying and handling the individual needs of pediatric cancer survivors is important for providing the resources and support required to increase the likelihood of successful transition to adulthood.

Place, publisher, year, edition, pages
Elsevier, 2016
Keywords
Cancer; Experience; Pediatric; Survivor; Transition
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:hj:diva-28676 (URN)10.1016/j.ejon.2016.02.008 (DOI)000373412200014 ()26952685 (PubMedID)2-s2.0-84958775381 (Scopus ID)
Available from: 2015-12-18 Created: 2015-12-18 Last updated: 2019-01-09Bibliographically approved
2. 'Through my eyes': Health-promoting factors described by photographs taken by children with experience of cancer treatment
Open this publication in new window or tab >>'Through my eyes': Health-promoting factors described by photographs taken by children with experience of cancer treatment
2016 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 42, no 1, p. 76-86Article in journal (Refereed) Published
Abstract [en]

Background

Health promotion for children with cancer should be based on the children's own needs and desires. Because there is a lack of knowledge in this area, the aim of this study was to explore what promotes health from the perspective of children with experience of cancer treatment.

Methods

Fifteen children between 8 and 12 years of age participated in focus groups with three children in each group. The children were given a camera and instructions to photograph subjects that promote their health. Focus group discussions were based on the photographs and the children's own description of those photographs. The analysis of focus group discussions and photographs was conducted using inductive content analysis.

Results

According to the children, health-promoting factors are defined as meaningful relationshipsrecreational activities and a trustful environment. Meaningful relationships include togetherness within the familyaffection for pets and friendship with peers. Recreational activities include engagement in play and leisurewithdrawal for relaxation and feeling enjoyment. Trustful environment includesconfidence in significant others and feeling safe.

Conclusions

Knowledge from this study can contribute to health promotion interventions and quality improvements in the health care of children with experience of cancer treatment. Children's experiences with what promotes health in their everyday lives provide a better understanding of the type of support children prefer when promoting their own health.

Keywords
cancer, children's perspective, focus group, health promotion, photography
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-27870 (URN)10.1111/cch.12285 (DOI)000367930300010 ()26303054 (PubMedID)2-s2.0-84940094691 (Scopus ID)
Available from: 2015-09-07 Created: 2015-09-07 Last updated: 2018-04-11Bibliographically approved
3. Friendship Relations From the Perspective of Children With Experience of Cancer Treatment: A Focus Group Study With a Salutogenic Approach
Open this publication in new window or tab >>Friendship Relations From the Perspective of Children With Experience of Cancer Treatment: A Focus Group Study With a Salutogenic Approach
2015 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 32, no 3, p. 153-164Article in journal (Refereed) Published
Abstract [en]

Friendships are significant to child development and health but diseases such as cancer can interrupt the contact with friends. The purpose of this study was to describe perceptions of friendship from the perspective of children undergoing cancer treatment, in order to build knowledge that can be used in a health promotion intervention for these children. Fifteen children between 8 and 12 years of age participated in focus groups, where a mixture of informative and creative techniques were used. The focus group discussions were analyzed using qualitative content analysis. The analysis resulted in three generic categories, "Common interests and experiences," "Mutual empathic actions." and "Mutual trust and understanding," incorporating seven subcategories. Based on children's descriptions from a salutogenic perspective, friendship emerged as An equal and mutual commitment that evolves over time and with interactions face-to-face and digitally, a child perspective on friendship should be central to the development of health promotion interventions designed to support friendship relations of children treated for cancer.

National Category
Medical and Health Sciences Nursing
Identifiers
urn:nbn:se:hj:diva-25128 (URN)10.1177/1043454214554009 (DOI)000354845500004 ()25366576 (PubMedID)2-s2.0-84930386658 (Scopus ID)
Available from: 2014-11-10 Created: 2014-11-10 Last updated: 2017-12-05Bibliographically approved
4. Psychometric evaluation of a Swedish version of Minneapolis-Manchester quality of life-youth form and adolescent form
Open this publication in new window or tab >>Psychometric evaluation of a Swedish version of Minneapolis-Manchester quality of life-youth form and adolescent form
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2013 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 11, no 79Article in journal (Refereed) Published
Abstract [en]

Background

It has become important to measure long-term effects and quality of life in survivors of childhood cancer. The Minneapolis- Manchester Quality of Life (MMQL) instrument has been proven to better capture the quality of life (QoL) perspective of health than other instruments. The instrument has age appropriate versions and is therefore favourable for longitudinal studies of QoL of children surviving from cancer. The aim of this study was to evaluate the psychometric properties of the Swedish version of MMQL-Youth Form and the Adolescent Form focusing on: 1) face and content validity 2) the internal consistency and 3) the test-retest reliability.

Methods

The sample consisted of 950 pupils (11–16 years old) from 7 schools in the western Sweden who completed the questionnaire. For the test-retest evaluation 230 respondents completed the questionnaire two weeks later.

Results

Face and content validity was supported and internal consistency was found to be acceptable for the total scale for both the MMQL-Youth Form (8–12 years of age) and the Adolescent Form (13–20 years of age). Test-retest reliability for the MMQL-Youth Form was moderate for 50% of the items and good for the remaining. For the MMQL-Adolescent Form the test-retest showed moderate or good agreement for 80% of the items and fair for 20%.

Conclusions

The result indicated that the Swedish version of the MMQLYouth Form and Adolescent Form was valid and reliable in a sample of healthy children in a Swedish context. It is recommended to test the instrument among diverse samples of children such as survivors of childhood cancer in order to validate its usefulness in research and clinical settings.

Keywords
Children, Cancer, Questionnaire, Reliability, Validity
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-22834 (URN)10.1186/1477-7525-11-79 (DOI)
Available from: 2013-12-19 Created: 2013-12-19 Last updated: 2017-12-06Bibliographically approved

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