Muistisairauteen sopeutumisen tarinatyypit työikäisenä sairastuneilla ja heidän läheisillään

Hautsalo, Katja; Pirhonen, Jari; Pietilä, Ilkka

doi:10.23989/gerontologia.100584

Cited by 3 publications

(5 citation statements)

References 30 publications

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“…The aim of this article was to discover how the family members readjust to YOD as being a part of their everyday life during the first four years from the onset of the illness. By narrating their own situation, talking about their relationship with the person with YODs and the impact on their daily living, the family members were able to reconstruct their own story about their relationship as well as their own coping, abilities and burdens (see Frank, 1995;Hautsalo et al, 2021). The analysis uncovered broken, adaptive or alternative storylines.…”

Section: Discussionmentioning

confidence: 99%

“…Family members differ in their attempts to manage in the new life situation and they readjust in individual ways. Early narrative research on illness-related experiences have reported cultural storylines (Frank, 1995;Freeman, 2008;Hautsalo et al, 2021) and strategies to manage in difficult situations (Baltes & Rudolph, 2012;Frankl, 1979). Independent stories are always individual and may consist of features from different storylines that vary according to the related context and changes in the narrator's life situation.…”

Section: The Changes Made By a Yod In The Family's Situation And Atte...mentioning

confidence: 99%

“…As a participant in a study, recounting one's personal story expresses an understanding of the events and means of living with dementia but also shapes the wider discourse on dementia. We need widerranging discussions on dementia, that is, other alternatives to a story of inevitable decline and defeat, such as understanding what it means to live well with dementia (Hautsalo et al, 2021;Hillman et al, 2018). Storytelling may also be beneficial at the individual level by facilitating the meaning-making in one's own situation or by helping listeners to understand how even in exasperating situations, there is an opportunity to find meaning (Butcher & Buckwalter, 2002).…”

Section: Actant Analysis Of Illness-related Narratives Disclose Actor...mentioning

confidence: 99%

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Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia

Hautsalo,

Pirhonen,

Pietilä

2023

JFamRes

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Objective: This narrative study explores how family members readjust to young onset dementia (YOD) being a part of their everyday life during the first four years of their family member’s illness. Background: Young onset dementia affects family relationships and challenges their life situation from the onset of the illness. It is therefore important to recognise and understand the family members’ supportive and resisting issues as well as their coping styles. Method: The data was collected in Finland by conducting interviews with 16 family members of people with YOD and these were repeated once a year for four years (2019 to 2022). The actant model was used to carry out the analysis. Results: Narrating the situation helps family members reconstruct their own story of their changed situation. Family members adjust their life situation at the beginning of the YOD diagnosis by retaining their daily continuity, coping, and by finding meanings. These require a recognition and an acceptance of the changes that YOD creates in relationships and daily living and may lead to a storyline that is broken, adaptive or alternative. Conclusion: When family members engage in storytelling, this can result in an increased awareness of their situation and lead them to identify opportunities and problems and solve them. This also leads to their readjustment to dementia as a part of their own personal narrative.

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Section: Discussionmentioning

confidence: 99%

Section: The Changes Made By a Yod In The Family's Situation And Atte...mentioning

confidence: 99%

Section: Actant Analysis Of Illness-related Narratives Disclose Actor...mentioning

confidence: 99%

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Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia

Hautsalo,

Pirhonen,

Pietilä

2023

JFamRes

Self Cite

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“…Aikaisemmat tutkimuksemme puolestaan osoittavat, että jopa syvästi muistisairaiden ikääntyneiden eksistentiaalisiin ja hengellisiin tarpeisiin on mahdollista vastata (Saarelainen ym. 2020;Pirhonen 2021). Hoivakodeissa asuvista ihmisistä valtaosa onkin muistisairaita (Remes 2018).…”

Section: Johdantounclassified

“…2018;Agli ym. 2019), mutta hengellisyyden ammattilaiset harvemmin (Carey 2012;Pirhonen 2021;Pirhonen & Saa relainen 2022). Lisäksi valtaosa hoitolaitos pappien työtä koskevasta tutkimuksesta sijoittuu terveydenhuollon yksiköihin eikä ikäihmis ten asumispalveluihin (Proserpio ym.…”

Section: Johdantounclassified

Eksistentiaalisia kysymyksiä maallistumisen paineessa – narratiivinen analyysi pappien työstä hoivakodeissa

Pirhonen,

Saarelainen,

Vähäkangas

et al. 2024

gerontologia

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Yhtenä ikääntyneiden hyvän hoivan tunnusmerkkinä on pidetty asiakkaiden yksilöllisiin tarpeisiin vastaamista, joten myös vakaumuksellisten asioiden huomioimisen ymmärretään kuuluvan kokonaisvaltaiseen hoitotyöhön. Tarkastelemme tutkimuksessamme pappien haastattelujen (n=10) pohjalta heidän työtään hoivakodeissa. Aktanttianalyysin avulla tutkimme sitä, miten papit kuvaavat työtään muistisairaiden ihmisten eksistentiaalisiin tarpeisiin vastaamiseksi. Työnsä taustana papit pitävät omaa hengellistä kutsumustaan pappeuteen. Vaikka haastattelujen perusteella työn ensisijaiseksi tavoitteeksi piirtyy asukkaiden eksistentiaalisiin tarpeisiin vastaaminen, kokevat papit olevansa koko hoivakotiyhteisön käytettävissä. Pappeja auttavat työssään oman ammattitaidon lisäksi toisinaan hoitajat ja asukkaiden läheiset sekä kokemukset siitä, että he pystyvät omalla työllään saamaan aikaan positiivisiksi tulkittuja vaikutuksia vaikeatakin muistisairautta sairastavissa ihmisissä. Rakenteellisella tasolla pappeja auttavat kirkon pitkä traditio ja hengelliset työkalut, seurakuntatyönantaja ja joskus hoivakodin eksistentiaalisten kysymysten käsittelyä tukevat käytänteet. Pappien näkemyksen mukaan työtä vaikeuttaa erityisesti eksistentiaalisia kysymyksiä huomioimaton hoivakodin toimintakulttuuri, joka heijastelee yleisempää yhteiskunnan maallistumiskehitystä. Ikääntyneiden pitkäaikaishoivassa on tulevaisuudessa kiinnitettävä erityistä huomiota asukkaiden vakaumuksellisten tarpeiden tunnistamiseen ja niihin vastaamiseen. Existential questions under the pressure of secularization – a narrative analysis of the work of chaplains in nursing homes One characteristic of good care for older persons has been considered to be responding to the individual needs of the customers, so addressing matters of conviction is also understood to be part of comprehensive nursing care. In our study, we examine the work of priests in care homes based on interviews (N=10). Using actor analysis, we explore how priests describe their work in meeting the existential needs of people with dementia. Priests see their spiritual calling to priesthood as the background for their work. Although, based on the interviews, responding to the existential needs of residents emerges as the primary goal of their work, priests feel they are available to the entire nursing home community. The chaplains’ professional skills, and sometimes help from the nursing staff and residents’ relatives, help achieve the goals, and the chaplains’ experiences of bringing about positively interpreted effects even in people with severe dementia give them motivation. On a structural level, priests’ work is supported by the church's long tradition and spiritual tools, the parish employer, and sometimes practices that support addressing existential questions in the care home. According to our findings, the work is particularly hindered by a care home culture that neglects existential questions, reflecting a broader secularization trend in society. In the future, special attention must be paid to recognizing and responding to the convictional needs of residents in nursing homes.

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Adjusting to dementia as part of life: an actantial analysis of agency reconstruction following diagnosis of young onset dementia

Hautsalo,

Pirhonen,

Pietilä

2024

Ageing and Society

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The agency of a person with young onset dementia (YOD) changes owing to individual symptoms, uncertainty about the speed of progression and the severity of YOD. Dementia usually greatly interrupts life and reduces agency. Previous studies show that some people and families integrate and cope with dementia better than others. This study aimed to find out how YOD changes the agency of the person who has it and what family members’ role is in forming their agency. The data were collected in Finland in semi-structured interviews with 14 people with YOD and 15 family members, about a year after the diagnosis. These two data sets were analysed with a narrative method, actantial analysis. A wide variety of elements, both human and non-human factors, were found to promote and undermine agency. It was found that people with YOD need both integrity and flexibility to reconstruct their own agency. Resources support them in this process of reconstruction, and hinderers interrupt the process. This combination of integrity and flexibility, resources and hinderers, generates how people with YOD recount the future, the aims they set and how they reconstruct their agency. Other people, especially family members, are part of this dynamic process and when their relationship is cohesive, the agency of both parties increases. The participants used ideal and burdensome storylines to narrate factors that supported or interrupted their agency. Based on our findings, narrating one’s situation is, for coping, not only a means but its very basis.

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Muistisairauteen sopeutumisen tarinatyypit työikäisenä sairastuneilla ja heidän läheisillään

Cited by 3 publications

References 30 publications

Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia

Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia

Eksistentiaalisia kysymyksiä maallistumisen paineessa – narratiivinen analyysi pappien työstä hoivakodeissa

Adjusting to dementia as part of life: an actantial analysis of agency reconstruction following diagnosis of young onset dementia

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