Perspectives of patients with multiple myeloma on accepting their prognosis—A qualitative interview study

Hermann, Myriel; Kühne, Franziska; Rohrmoser, Amy; Preisler, Martina; Goerling, Ute; Letsch, Anne

doi:10.1002/pon.5535

Cited by 4 publications

(4 citation statements)

References 35 publications

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“…Our work also reinforces more recently published evidence regarding the role of social support in coping with the prognosis and incurability of the disease itself. In a qualitative study of 20 individuals with multiple myeloma, social support from family, peers, and the healthcare team was identified by participants as helping them accept their prognosis by enhancing feelings of belonging, acceptance, and safety (Hermann et al, 2021). In another study of 127 individuals with myeloma, in which 56% were classified as having highlevel or maladaptive fear of cancer recurrence (FCR), greater scores of perceived social support were found to be associated with lower FCR (Hu et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

Psychosocial and supportive care needs of individuals with advanced myeloma

Rowland¹,

Forbes²,

Howell³

et al. 2023

CONJ

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Purpose: The purpose of this qualitative study is to understand, from the patient’s perspective, their experience of living with advanced multiple myeloma, the psychosocial impact, and needs for support in managing and adapting to this illness. Methods: An interpretive descriptive approach was used. Individual semi-structured telephone interviews were conducted with each participant, which focused on eliciting their descriptions of psychosocial issues and concerns, as well as the supports they use for coping with cancer. Transcripts were analyzed using interpretive description, resulting in the generation of common themes that represented the data. Results: The sample comprised twelve adults with a diagnosis of advanced multiple myeloma who had undergone at least three lines of treatment or were transfusion dependent. All participants were receiving ambulatory care for their myeloma in Toronto, Ontario, Canada. Four themes were generated: (1) confusion about the diagnosis and treatment options; (2) challenges in finding relevant information; (3) dealing with the chronicity of treatment side effects; (4) social support as critical for coping with the life-threat of multiple myeloma. Conclusion: Findings suggest that the psychosocial impact of living with advanced multiple myeloma is greatly impacted by one’s ability to understand the complexities of the diagnosis and access supports to cope with its physical and emotional consequences. Clinical interventions specifically tailored to meeting the information and support needs of this population are needed. Keywords: multiple myeloma, interpretive description, qualitative, psychosocial

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Section: Discussionmentioning

confidence: 99%

Psychosocial and supportive care needs of individuals with advanced myeloma

Rowland¹,

Forbes²,

Howell³

et al. 2023

CONJ

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“…Dans une étude qualitative portant sur 20 personnes atteintes d'un myélome multiple, les participants ont indiqué que le soutien social de la famille, des pairs et de l'équipe soignante les aidait à accepter le pronostic en renforçant les sentiments d'appartenance, d'acceptation et de sécurité. (Hermann et al, 2021). Dans une autre étude portant sur 127 personnes atteintes d'un myélome où 56 % des sujets avaient très peur ou avaient une crainte mésadaptée de récidive du cancer, on a constaté que les cotes les plus élevées attribuées au soutien social perçu étaient associées à une faible peur de récidive (Hu et al, 2021).…”

Section: Discussionunclassified

Besoins en soins psychosociaux et de soutien des personnes atteintes d’un myélome de stade avancé

Rowland¹,

Forbes²,

Howell³

et al. 2023

CONJ

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Objectif : La présente étude qualitative vise à comprendre, du point de vue du patient, comment c’est que de vivre avec un myélome multiple au stade avancé, quelles sont les répercussions psychosociales de cette maladie et quels sont les besoins d’aide du patient pour lui permettre de prendre en charge sa maladie et de s’y adapter. Méthodologie : On a utilisé une méthode descriptive interprétative. Pour chaque participant, on a eu un entretien téléphonique pour l’amener à décrire ses préoccupations et ses problèmes psychosociaux, de même que l’aide qu’il utilise pour faire face à sa maladie. On a analysé les transcriptions des entretiens téléphoniques à l’aide d’une méthode de description interprétative, ce qui a permis de dégager les thèmes communs. Résultats : L’échantillon à l’étude était composé de douze adultes atteints de myélome au stade avancé, ayant suivi au moins trois traitements, ou étant dépendants de transfusions sanguines. Tous recevaient des soins ambulatoires dans un établissement de Toronto, en Ontario (Canada). Quatre thèmes ont été dégagés : 1) confusion semée par le diagnostic et les options thérapeutiques; 2) difficulté à trouver de l’information pertinente; 3) chronicité des effets secondaires du traitement; 4) importance du soutien social pour faire face à cette maladie qui menace la vie. Conclusion : Les résultats semblent indiquer que les répercussions psychosociales de la vie avec un myélome multiple au stade avancé dépendent en grande partie de la capacité du malade à comprendre les complexités du diagnostic et à obtenir l’aide nécessaire pour affronter les répercussions physiques et émotionnelles. Des interventions cliniques spécifiquement adaptées pour répondre aux besoins d’information et de soutien de cette population sont nécessaires. Mots-clés : myélome multiple, description interprétative, qualitatif, psychosocial

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“…Qualitative studies in chronic haematological malignancies such as MM and MDS have examined treatment decision‐making, 7,8 prognosis, 9 and distress 10 . Qualitative studies in MM spanned a range of areas including younger patients, longer‐term survivors, and cognitive impairment 11 .…”

Section: Introductionmentioning

confidence: 99%

Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome

Roydhouse,

Thompson,

Nicholson

et al. 2023

Psycho-Oncology

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ObjectiveMultiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia.MethodsExploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face‐to‐face in 2022. Thematic analysis was used.ResultsTen groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome.ConclusionFuture work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.

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Perspectives of patients with multiple myeloma on accepting their prognosis—A qualitative interview study

Cited by 4 publications

References 35 publications

Psychosocial and supportive care needs of individuals with advanced myeloma

Psychosocial and supportive care needs of individuals with advanced myeloma

Besoins en soins psychosociaux et de soutien des personnes atteintes d’un myélome de stade avancé

Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome

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