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Family Members of Patients with Burns: Experiences of a Distressful Episode
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

A severe burn is a trauma associated with long lasting consequences, not only for the survivor but also for the family. Although it is recognized that family members are central in providing social support for the patients, previous research has not focused extensively on this group. The aims of this thesis were to increase knowledge about psychological symptoms and health-related quality of life (HRQoL) in family members of patients with burns, as well as to explore their experiences of burn care and rehabilitation. The research questions were approached using quantitative and qualitative methods.

The results showed that most family members demonstrate normal to mild levels of psychological symptoms, while one third demonstrate moderate to severe symptoms during care. The symptoms decreased over time and could be predicted to a certain degree by early symptoms.

Further, family members’ report of HRQoL is similar to that of the general population. An improvement is seen over time and HRQoL could be predicted in part by earlier life events and psychological symptoms.

Family members’ experiences were explored in an interview study. Qualitative content analysis revealed that the time in hospital is stressful, although there were experiences of a positive character.  Family members might benefit from being cared for in a more individualized way. The communication between health care providers and the family members could be improved.

Finally, a qualitative content analysis revealed that family members’ experiences and views concerning support is highly individual. There were experiences of sufficient support as well as lack of professional support. Treatment of family members should be modified according to personal circumstances, and it is important to actively include family members in the care process, both before and after discharge.

In summary, being a family member of a burn survivor is a distressful experience, not only during care but in many cases also after discharge. The treatment of family members within burn care should be individualized. Some persons are more vulnerable than others and it might be possible to identify those in need of support while care is still ongoing.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2013. , 56 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 935
Keyword [en]
Critical care, Burns, Experiences, Health-related quality of life, Family members, Nursing, Support, Psychological symptoms
National Category
Nursing Surgery Psychiatry
Research subject
Psychiatry; Caring Sciences in Medical Sciences
Identifiers
URN: urn:nbn:se:uu:diva-208626ISBN: 978-91-554-8768-3 (print)OAI: oai:DiVA.org:uu-208626DiVA: diva2:654027
Public defence
2013-11-22, Auditorium Minus, Gustavianum, Akademigatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2013-10-29 Created: 2013-10-06 Last updated: 2014-01-23
List of papers
1. Prediction of psychological symptoms in family members of patients with burns 1 year after injury
Open this publication in new window or tab >>Prediction of psychological symptoms in family members of patients with burns 1 year after injury
2013 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 69, no 2, 384-393 p.Article in journal (Refereed) Published
Abstract [en]

Aim

To report a study of predictors of psychological symptoms in family members of patients with burns.

Background

Family members are important as a source of social support for patients undergoing prolonged rehabilitation. Little is known about psychological symptoms of family members of patients with burns, especially in the long term.

Design

The design of the study was prospective and longitudinal.

Methods

Forty-four family members of adult patients treated in a burn centre between 2000-2007 completed questionnaires during care and at 3, 6, and 12 months after injury. Psychological symptoms were assessed with the Hospital Anxiety and Depression Scale. Predictors for anxiety and depression were explored in regression analyses.

Results

The mean scores indicated normal to mild symptoms in general. Moderate and severe symptom levels during care and at 12 months were demonstrated on the anxiety subscale by 15/44 and 5/39, respectively, and on the depression subscale by 5/44 and 0/39 of the family members, respectively. In the final regression models, the primary predictor was psychological symptoms at the previous assessment. Other predictors were previous life events, age, and the coping strategy avoidance.

Conclusion

Family members of patients with burns demonstrate normal to mild levels of psychological symptoms that decrease over time. One-third show moderate to severe anxiety symptoms during care and may benefit from counselling. Previous symptoms predict later symptoms, indicating that screening with a validated instrument is useful. The results provide guidance for nurses in assessing and planning adequate interventions for family members.

Keyword
burns, family members, injury, nursing, psychological symptoms, rehabilitation
National Category
Psychiatry Nursing Surgery
Research subject
Psychiatry; Caring Sciences in Medical Sciences
Identifiers
urn:nbn:se:uu:diva-190020 (URN)10.1111/j.1365-2648.2012.06017.x (DOI)000313722600014 ()22509932 (PubMedID)
Available from: 2013-01-07 Created: 2013-01-07 Last updated: 2017-12-06Bibliographically approved
2. Health-related quality of life in family members of patients with burns
Open this publication in new window or tab >>Health-related quality of life in family members of patients with burns
Show others...
2014 (English)In: Journal of Burn Care & Research, ISSN 1559-047X, E-ISSN 1559-0488, Vol. 35, no 3, 243-250 p.Article in journal (Refereed) Published
Abstract [en]

A severe burn not only affects the patients, but may also have a great impact on the lives of family members. It is known that family members of patients with burns experience psychological distress, but health-related quality of life (HRQoL) has not been studied in this group. The aim was to study predictors of HRQoL in family members of patients with burns. Forty-four family members of adult patients treated in a burn center, between 2000 and 2007, completed questionnaires during care, and at 3, 6, and 12 months after injury. HRQoL was assessed with the EuroQol 5D (EQ-5D), which consists of the dimensions: mobility, self-care, usual activities, pain, and anxiety/depression. The questionnaire generates an EQ-5D index and a visual analog scale (VAS) score. Overall, the EQ-5D index was similar to that of the general population. A slight improvement in HRQoL was found in the VAS scores and in the anxiety/depression dimension over time. In regression models, HRQoL was primarily predicted by earlier life events, symptoms of post-traumatic stress disorder, and HRQoL, assessed during the patients’ hospitalization. In summary, HRQoL assessed with VAS scores increased slightly during the first year postburn, and early screening for life events and psychological symptoms, and HRQoL might be useful in identifying family members in need of support.

Keyword
burns, family members, injury, health related quality of life, rehabilitation
National Category
Psychiatry Surgery Nursing
Research subject
Psychiatry; Caring Sciences in Medical Sciences
Identifiers
urn:nbn:se:uu:diva-208623 (URN)10.1097/BCR.0b013e318295744e (DOI)000335394600015 ()
Available from: 2013-10-06 Created: 2013-10-06 Last updated: 2017-12-06Bibliographically approved
3. Family members of patients with severe burns: Experiences during care and rehabilitation
Open this publication in new window or tab >>Family members of patients with severe burns: Experiences during care and rehabilitation
(English)Manuscript (preprint) (Other academic)
Abstract [en]

The aim was to explore experiences of care and rehabilitation in family members of patients with burns. Ten semi-structured interviews analyzed using qualitative content analysis resulted in seven categories related to the care: Feeling distress, Receiving excellent care, Being treated in an insensitive way, Reluctance towards giving care, Being the hub of the family network, Feeling hope, and Being thankful. Six categories were related to rehabilitation: Ambiguous feelings, Difficulties after discharge, Being forced to take responsibility, Handling the situation, Gaining support and Being thankful. Although there are positive experiences during care, family members experience the time in hospital and after discharge as distressful and could benefit from being cared for in a more individualized way. Improved communication between caregivers and the family member may be important. Family members need to be included in the planning of care and support offered at discharge could ease the burden on these individuals.

Keyword
burns, experience, family members, nursing, recovery
National Category
Nursing Psychiatry Surgery
Research subject
Psychiatry; Caring Sciences in Medical Sciences
Identifiers
urn:nbn:se:uu:diva-208624 (URN)
Available from: 2013-10-07 Created: 2013-10-06 Last updated: 2014-01-23
4. Family members’ experiences of support during care and rehabilitation of patients with severe burns
Open this publication in new window or tab >>Family members’ experiences of support during care and rehabilitation of patients with severe burns
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Aim: The aim of this study was to explore family members’ experiences of support during burn care and during the rehabilitation phase after hospital discharge.

Background: Family members are important in the recovery process of patients with severe burns; however, few previous studies have focused on how this group experiences and values support during care and rehabilitation.

Methods: Ten semi-structured interviews with family members of patients treated at the national burn centres were recorded digitally, transcribed verbatim, and analysed using content analysis. The informants were included nationwide, most were females, and different socioeconomic groups were represented.

Results: Categories related to experiences during care were: Nonsupport, Professional support, Support from family and friends, A wish for support, and That little something extra. Categories related to experiences during rehabilitation were: Nonsupport, Professional support, Support from family and friends, Support from the injured person and Religion. Support from other family members and friends was generally considered the most important source of support, and there was a wish for more proactive support from care professionals.

Conclusion: The experience of support is individual, which makes supporting family members a complex task. Individualized treatment of family members and their inclusion in the care process are of central importance, as is identifying specific needs for support both during the time in hospital and during rehabilitation. It is important to be proactive and offer support.

Keyword
burns, experience, family members, nursing, recovery, support
National Category
Nursing Surgery Psychiatry
Research subject
Psychiatry; Caring Sciences in Medical Sciences
Identifiers
urn:nbn:se:uu:diva-208625 (URN)
Available from: 2013-10-07 Created: 2013-10-06 Last updated: 2014-01-23

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