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Publications (10 of 17) Show all publications
Gabrielsson, H., Hjorth, E., Wallin, V. & Pohlkamp, L. (2023). Övergången från att vara patient med cancer till person med erfarenhet av cancer: Civilsamhällets roll i rehabilitering. Socialmedicinsk Tidskrift, 100(1), 165-178
Open this publication in new window or tab >>Övergången från att vara patient med cancer till person med erfarenhet av cancer: Civilsamhällets roll i rehabilitering
2023 (Swedish)In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 100, no 1, p. 165-178Article, review/survey (Refereed) Published
Abstract [sv]

En avslutad cancerbehandling innebär inte automatiskt ett avslut på de utmaningar som följer med cancer. Behovet av cancerrehabilitering ökar i takt med fler som överlever cancer. Det råder viss otydlighet kring vilka rehabiliteringsinsatser som efterfrågas och vilka aktörer som erbjuder dessa. Denna studie har genom en litteraturöversikt satt ljuset på deltagares erfarenheter av cancerrehabilitering samt civilsamhällets roll i rehabilitering efter genomgången cancer i de nordiska länderna. Resultatet av litteraturöversikten visar att få studier finns publicerade om civilsamhällets roll i cancerrehabilitering. Personer som har genomgått en cancersjukdom har ofta behov av stöd under sin rehabilitering, där stöd från personer i liknande situation uppskattas av många. Resultatet visar även att organisationer i civilsamhället spelar en betydande roll. Studien har genomförts vid Centrum för civilsamhällesforskning, Marie Cederschiöld Högskola.

Abstract [en]

A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

Keywords
Civilsamhälle, Cancerrehabilitering, Cancer, Rehabilitering
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:esh:diva-10386 (URN)
Available from: 2023-08-24 Created: 2023-08-24 Last updated: 2023-11-21Bibliographically approved
Pohlkamp, L. (2022). Att möta människor i komplicerad sorg. In: : . Paper presented at Palliativ vård - det gäller livet, 7:e nationella konferensen i palliativ vård, Göteborg 5-7 september 2022.
Open this publication in new window or tab >>Att möta människor i komplicerad sorg
2022 (Swedish)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [sv]

Sorg är en naturlig del av livet, för att vi människor är sociala och knyter relationer igenom hela livet. Att bearbeta förlusten när en älskad person dör kräver ett sorgearbete, många klarar det på egen hand med stöd i sitt sociala nätverk. Sorg som är ihållande och behöver behandling, brukar benämnas komplicerad sorg. Presentationen på denna konferens kommer att fokusera på mötet med människor med komplicerad sorg, samt faktorer som kan ge en djupare förståelse av fenomenet.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9807 (URN)
Conference
Palliativ vård - det gäller livet, 7:e nationella konferensen i palliativ vård, Göteborg 5-7 september 2022
Available from: 2022-10-05 Created: 2022-10-05 Last updated: 2022-10-05Bibliographically approved
Bartholdson, C., Kreicbergs, U., Sveen, J., Lövgren, M. & Pohlkamp, L. (2022). Communication about diagnosis and prognosis: A population-based survey among bereaved parents in pediatric oncology. Psycho-Oncology, 31(12), 2149-2158
Open this publication in new window or tab >>Communication about diagnosis and prognosis: A population-based survey among bereaved parents in pediatric oncology
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2022 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 31, no 12, p. 2149-2158Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.

CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.

Keywords
Cancer, Children, Communication, Diagnosis, Oncology, Parents, Prognosis, Psycho-oncology
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:esh:diva-9869 (URN)10.1002/pon.6058 (DOI)000878865500001 ()36307935 (PubMedID)
Available from: 2022-10-31 Created: 2022-10-31 Last updated: 2022-12-15Bibliographically approved
Sveen, J., Jernelöv, S., Pohlkamp, L., Kreicbergs, U. & Kaldo, V. (2021). Feasibility and preliminary efficacy of guided internet-delivered cognitive behavioral therapy for insomnia after the loss of a child to cancer: Randomized controlled trial. Internet Interventions, 25, Article ID 100409.
Open this publication in new window or tab >>Feasibility and preliminary efficacy of guided internet-delivered cognitive behavioral therapy for insomnia after the loss of a child to cancer: Randomized controlled trial
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2021 (English)In: Internet Interventions, ISSN 2214-7829, Vol. 25, article id 100409Article in journal (Refereed) Published
Abstract [en]

Bereaved individuals often experience sleep problems. The aim of this study was to evaluate feasibility and preliminary effects of internet-delivered cognitive behavioral therapy for insomnia (iCBT-i) in bereaved parents. Parents were randomized to iCBT-i (n = 10) or an active control group (n = 11). Primary outcome (insomnia) and secondary outcomes (prolonged grief, depression, posttraumatic stress, and grief rumination) were assessed pre- and post-treatment, with 9- and 18-month follow-ups. Feasibility was assessed post-treatment and one month later. Most parents reported positive effects of the treatment. The intervention group improved significantly from pre- to post-treatment and had a significantly larger reduction of insomnia when analyzed over all four time-points (Wald χ2 = 30.0, p < 0.001), although the effect at post-treatment was very small (d = 0.1) for insomnia. Thus, iCBT-i was feasible and was related to reduced insomnia and psychological distress in bereaved parents, both short- and long-term, but the results regarding the treatment effect are preliminary due to the small sample size.

Keywords
Bereavement, Child loss, Internet intervention, Treatment
National Category
Applied Psychology Psychiatry Health Sciences
Identifiers
urn:nbn:se:esh:diva-9194 (URN)10.1016/j.invent.2021.100409 (DOI)000687262000004 ()34401368 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, TJ2015-0021Swedish Childhood Cancer Foundation, PR2015-0050
Note

Forskningsfinansiär: ALF-avtal

Available from: 2021-12-28 Created: 2021-12-28 Last updated: 2021-12-28Bibliographically approved
Kreicbergs, U., Pohlkamp, L. & Sveen, J. (2021). No impact of previous evidence advocating openness to talk to children about their imminent death. Acta Paediatrica (5), 1671-1672
Open this publication in new window or tab >>No impact of previous evidence advocating openness to talk to children about their imminent death
2021 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, no 5, p. 1671-1672Article in journal (Refereed) Published
Abstract [en]

Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided. As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8505 (URN)10.1111/apa.15681 (DOI)33220072 (PubMedID)
Available from: 2020-12-01 Created: 2020-12-01 Last updated: 2021-05-25Bibliographically approved
Pohlkamp, L., Sveen, J., Kreicbergs, U. & Lövgren, M. (2021). Parents’ views on what facilitated or complicated their grief after losing a child to cancer. Palliative & Supportive Care, 19(5), 524-529
Open this publication in new window or tab >>Parents’ views on what facilitated or complicated their grief after losing a child to cancer
2021 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 5, p. 524-529Article in journal (Refereed) Published
Abstract [en]

Objectives: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer.

Methods: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses.

Results: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage.

Significance of results: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.

Keywords
Bereavement, Coping, Grief, Parents, Pediatric oncology
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8005 (URN)10.1017/S1478951520001212 (DOI)000721279300004 ()33239119 (PubMedID)
Funder
Swedish Childhood Cancer Foundation
Note

Publication status in dissertation: Submitted

Forskningsfinansiärer:

- Gålöstiftelsen

- Ersta Sköndal Bräcke högskola

Available from: 2020-03-16 Created: 2020-03-16 Last updated: 2022-01-05Bibliographically approved
Hjorth, E., Gabrielsson, H., Pohlkamp, L. & Wallin, V. (2021). Patientorganisationer som företräder riskgrupper under covid-19-pandemin: förändringar i organisation och relation till andra aktörer. Socialmedicinsk Tidskrift, 98(1), 38-47
Open this publication in new window or tab >>Patientorganisationer som företräder riskgrupper under covid-19-pandemin: förändringar i organisation och relation till andra aktörer
2021 (Swedish)In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 98, no 1, p. 38-47Article in journal (Refereed) Published
Abstract [sv]

Under covid-19-pandemin, skedde stora förändringar i svenska samhället, förändringar som även påverkade de patientorganisationer som företräder personer med extra utsatt risk vid smitta. Patientorganisationer har en roll i utformningen av svensk sjukvårdspolitik, utöver att även fungera som en servicefunktion för sina medlemmar. Det har dock diskuterats vilken förmåga patientorganisationerna har att anpassa sig efter förändringar i samhället. Den akuta inledande fasen av covid-19-pandemin har studerats i denna studie och hur pandemin påverkat patientorganisationers relation till medlemmar, andra aktörer och stat. Ledande representanter för fem patientorganisationer som företräder personer i riskgrupp för covid-19 intervjuades. Studien visar att patientorganisationer var snabba med att göra omstruktureringar i organisationen för att möta nya akuta behov. Bland annat skapades nya aktiviteter för medlemmar, stadgar ändrades och samarbetskanaler med andra organisationer intensifierades för politisk påverkan.

Abstract [en]

During the COVID-19 pandemic major changes took place in Swedish society, changes that also affected patient organizations representing people with increased risk of severe illness of COVID-19. This study focuses on the initial phase of the COVID-19 pandemic and how patient organizations’ relationships with their members and other actors were affected. The study shows that patient organizations were fast to make the necessary organisational reforms and thus able to meet new urgent needs.

Keywords
Civilsamhälle, Corona, Covid-19, Patientorganisationer, Organisation, Pandemi
National Category
Sociology
Identifiers
urn:nbn:se:esh:diva-8638 (URN)
Available from: 2021-02-24 Created: 2021-02-24 Last updated: 2023-02-16Bibliographically approved
Pohlkamp, L., Wallin, V., Hjorth, E. & Gabrielsson, H. (2021). Ömsesidiga hjälporganisationer i Sverige uppvisar resiliens under covid-19-pandemin. Socialmedicinsk Tidskrift, 98(1), 48-58
Open this publication in new window or tab >>Ömsesidiga hjälporganisationer i Sverige uppvisar resiliens under covid-19-pandemin
2021 (Swedish)In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 98, no 1, p. 48-58Article in journal (Refereed) Published
Abstract [sv]

Ömsesidiga hjälporganisationer i det svenska civilsamhället står för ett omfattande socialt stöd samt påverkansarbete till förmån för sina medlemmar. Som en följd av Folkhälsomyndighetens rekommendationer i samband med covid-19 pandemin, om social distansering för att förebygga smittspridning och att skydda personer i riskgrupper, har dessa organisationer behövt ändra sitt arbetssätt drastiskt. Syftet med denna studie var att studera hur ömsesidiga hjälporganisationer fungerade under covid-19 pandemin och spegla resultatet utifrån begreppet resiliens. Digitala intervjuer med nio representanter för ömsesidiga hjälporganisationer utfördes. Resultatet visar att det trots ändrade förutsättningar, fanns ett fortsatt stort engagemang och en vilja att fortsätta hjälpa och stödja sina medlemmar. Organisationerna visade kreativ problemlösningsförmåga och lyckades inom kort tid anpassa sina kontakter med medlemmarna till digitala alternativ eller andra innovativa lösningar. Resultatet diskuteras utifrån begreppet resiliens, och dess betydelse på både individ- och samhällsnivå.

Abstract [en]

Mutual aid organizations in Sweden provide extensive social support and advocacy work. Restrictions and guidelines to limit the spread of COVID-19 have forced to these organizations adapting their ways of working significantly. We conducted remote interviews with representatives of nine such organizations. The results indicate that they largely have been able to continue to support their members, despite the changed conditions, creatively adjusting their activities using new solutions. In this paper, the results are discussed using resilience as a key concept, including its significance at both an individual and a societal level.

Keywords
Civilsamhälle, Corona, Covid-19, Patientorganisationer, Resiliens, Pandemi, Ömsesidiga hjälporganisationer
National Category
Sociology
Identifiers
urn:nbn:se:esh:diva-8639 (URN)
Available from: 2021-02-24 Created: 2021-02-24 Last updated: 2023-02-17Bibliographically approved
Pohlkamp, L. (2020). Bereaved mothers and fathers: Grief and psychological health 1 to 5 years after losing a child to cancer. (Doctoral dissertation). Stockholm: Ersta Sköndal Bräcke University College
Open this publication in new window or tab >>Bereaved mothers and fathers: Grief and psychological health 1 to 5 years after losing a child to cancer
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Bereaved parents often experience severe suffering and are at elevated risk for developing grief complications such as prolonged grief and other negative psychological health outcomes. The general aim of this thesis was to investigate symptoms of prolonged grief, depression, posttraumatic stress, anxiety, rumination, and sleep disturbance in parents who had lost a child to cancer 1 to5 years earlier. Attention was also given to the potential impact on the parents’grief of their experiences during the child’s illness, and finally to the parents’ views on their coping with grief. Methods: A cross-sectional design for data collection was used for all four studies in this thesis. Both quantitative and qualitative methods were used for data analysis, to provide various and complementing perspectives on bereaved parents’ grief and their psychological health. Results:Bereaved parents’ symptom levels of prolonged grief and psychological symptoms were found to be elevated and neither time- nor gender-dependent across the first five years after the loss. We also found that some of the parents’experiences during their child’s illness were associated with their grief and psychological symptoms. These factors differed for mothers and fathers. Mothers valued trustful relations with health care professionals, while fathers reported better psychological health when they had received support in practical matters. Findings also showed that parents found certain factors facilitated or complicated their coping with grief. Unsurprisingly, social support promoted positive coping with grief, while a less familiar factor – going back to work – could make coping with grief harder. Clinical implications: The findings provide knowledge which can improve the care for children, through development of support to their parents in pediatric oncology contexts and in bereavement.

Place, publisher, year, edition, pages
Stockholm: Ersta Sköndal Bräcke University College, 2020. p. 80
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 3
Keywords
Bereavement, grief, pediatric oncology, parents, psychological health
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-8006 (URN)978-91-985808-3-9 (ISBN)
Public defence
2020-04-17, Aulan, Campus Ersta, Stigbergsgatan 30, Stockholm, 09:30 (English)
Opponent
Supervisors
Available from: 2020-03-27 Created: 2020-03-17 Last updated: 2023-09-22Bibliographically approved
Pohlkamp, L. (2020). Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers. Journal of Clinical Oncology, 38(2), 137-144
Open this publication in new window or tab >>Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
2020 (English)In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 38, no 2, p. 137-144Article in journal (Refereed) Published
Abstract [en]

Purpose: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about factors related to the child's illness trajectory that may contribute to prolonged grief in bereaved parents and about possible sex differences related to such factors. Therefore, we examined possible contributing factors associated with prolonged grief in cancer-bereaved mothers and fathers 1 to 5 years after their child died of cancer.

Methods: We studied data from a population-based nationwide survey, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years earlier, using univariable and multiple regression analyses to assess the associations between prolonged grief and possible contributing variables.

Results: The variables associated with lower levels of prolonged grief symptoms for mothers were being able to talk about feelings within the family (P = .00) and trusting that health care professionals made every possible effort to cure the child (P = .01). The statistically significantly associated variables for fathers were having said farewell to the deceased child in the way they wanted (P = .00) and feeling that they had received practical support from health care professionals during the child's illness trajectory (P = .01).

Conclusion: We found factors during the illness of children with cancer that contributed to prolonged grief for parents; these were different for mothers and fathers. The results may have implications for design of family bereavement support within pediatric oncology care, including addressing the differing needs of mothers and fathers more effectively.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7982 (URN)10.1200/JCO.19.01493 (DOI)31725342 (PubMedID)
Available from: 2020-02-06 Created: 2020-02-06 Last updated: 2020-09-29Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4142-5967

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