scholarly journals I’m Losing the ‘Me’: Partners’ Experiences of Engagement with Parkinson's Health Professionals

2015 ◽  
Vol 16 (2) ◽  
pp. 116-130 ◽  
Author(s):  
Meredith Bolland ◽  
Andrew Guilfoyle ◽  
Romola S. Bucks
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Process Model ◽  
Phenomenological Analysis ◽  
Primary Data ◽  
Structured Interviews ◽  
Effective Care ◽  
Emerging Themes

Background: Partners of people with Parkinson's disease (PD) have first-hand knowledge relevant to the management of the person with Parkinson's (PwP). If captured, this knowledge may improve effective care for the PwP. However, there is a lack of research focusing primarily on partners’ experiences of engagement with health professionals working in PD (HPPs).Methods: Interpretative Phenomenological Analysis (IPA) was used to investigate the meaning of partners’ experiences of engagement with HPPs. Semi-structured interviews with 15 partners of PwP provided primary data. Each interview was digitally recorded, transcribed verbatim and analysed for emerging themes.Results: Three themes emerged: (i) partners’ lack of entitlement for their own needs to be met; (ii) submersion of self in the partnership and (iii) health professionals as agents of support. Additionally, sub-themes were identified, such as barriers to feeling entitled, setting up a premise for entitlement, and lost identity. Together, these themes highlight the current lack of focus on the partners of PwP. A process model was developed to describe partners’ cyclic progression through the various stages of their experience, and in the process, identifying initiatives for intervention.Conclusion: Given a lack of focus on the needs of partners of PwP, these preliminary insights could inform the delivery of improved services that support partners. This will ultimately benefit the PwP.

‘I Think the Carer-Partner Dichotomy is Always Interesting’: Tensions in Health Professionals’ Engagement with Spousal Care givers of People with Parkinson's

2016 ◽  
Vol 17 (2) ◽  
pp. 171-181
Author(s):  
Meredith Bolland ◽  
Andrew Guilfoyle ◽  
Romola S. Bucks
Keyword(s):  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis ◽  
Effective Management ◽  
Structured Interviews ◽  
Care Givers ◽  
Deep Appreciation ◽  
Engagement Process ◽  
Emerging Themes ◽  
Purposive Sample

Background:The spousal care givers of people with Parkinson's (PwP) have unique, first-hand information that is invaluable in the effective management of Parkinson's disease (PD). However, there is a dearth of research that specifically focuses on health professionals’ experiences of engagement with the spousal care givers of PwP.Methods:Interpretative phenomenological analysis (IPA) was used to describe and identify the meaning that health professionals working with PD (HPPs) gave to their engagement experiences with spousal care givers of PwP. Semi-structured interviews with a purposive sample of 12 HPPs were digitally recorded, transcribed verbatim and analysed for emerging themes.Results:Two major themes emerged from the interviews with HPPs: (i) the Philosophy of Care (PoC) is an Intrinsic Element in the Engagement Experience; and (ii) HPPs Expressed a Deep Appreciation of Partners’ Support of the PwP. HPPs experienced significant tensions and challenges in their engagements with the partners of PwP, as a result of the interaction between their lived reality and their PoC. They also appreciated greatly the caregiving provided by the partners. The insights gained have the potential to ease or resolve problematic tensions within the engagement process.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

scholarly journals Lived experience of outpatients with Parkinson's disease: an interpretative phenomenological analysis

Kontakt ◽  
2021 ◽  
Author(s):  
Martina Tomagová ◽  
Ivana Bóriková ◽  
Martina Lepiešová ◽  
Jana Nemcová ◽  
Ivan Farský ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis

scholarly journals The Lived Experiences of Deep Brain Stimulation in Parkinson’s Disease: An Interpretative Phenomenological Analysis

2019 ◽  
Vol 2019 ◽  
pp. 1-7 ◽  
Author(s):  
Suzette Shahmoon ◽  
Jonathan A. Smith ◽  
Marjan Jahanshahi
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Brain Stimulation ◽  
Interpretative Phenomenological Analysis ◽  
Family System ◽  
Social Issues ◽  
Phenomenological Analysis ◽  
Stn Dbs ◽  
Deep Brain

Deep brain stimulation of the subthalamic nucleus (STN-DBS) is an effective treatment for Parkinson’s disease (PD). In this study, we used an interpretative phenomenological analysis to explore how 10 male people with PD experienced life after STN-DBS surgery. Two themes emerged. The first, “Healed and relieved: all that glitters is not gold,” highlights the benefits and the personal “costs” of surgery. The second, “The change within: new interpretations of the present and future unfold,” explores how patients reinterpreted their lives as individuals and members of society in the present and as they face their future. Relief, gratitude, disappointment, and the need for social support are expressed as well as a new appraisal of values and the future. STN-DBS alters the life course of people with PD, and this study provides new insight into psychological and social issues that surgery raises for the patient and their family system. These psychosocial issues should be taken into account when preparing the patient and their family for surgery or supporting them postoperatively.

scholarly journals “It’s like having an evil twin”: an interpretative phenomenological analysis of the lifeworld of a person with Parkinson’s disease

2019 ◽  
Vol 24 (1-2) ◽  
pp. 49-58 ◽  
Author(s):  
Virginia Eatough ◽  
Karen Shaw
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Interpretative Phenomenological Analysis ◽  
Individual Case ◽  
Phenomenological Analysis ◽  
Individual Experience ◽  
General Knowledge ◽  
Idiographic Approach ◽  
The Individual ◽  
Knowledge Claims

Background This paper offers an understanding of the lifeworld of a person with Parkinson’s Disease derived from interpretative phenomenological analysis (IPA). Aims The paper has two main aims: firstly, to demonstrate how a focus on individual experience chimes with and can inform current ideas of a more personalised humanised form of healthcare for people living with Parkinson’s disease; and secondly, to demonstrate how an IPA study can illuminate particularity whilst being able to make, albeit cautiously, more general knowledge claims that can inform wider caring practices. Methods It achieves these aims through the detailed description and interpretation of one person’s experience of living with Parkinson's disease using the IPA approach. Results Three analytic themes point to how the various constituents of the lifeworld, such as embodiment, selfhood, temporality and relationality are made manifest. These enable the IPA researcher to make well-judged inferences, which can have value beyond the individual case. Conclusions A key feature of IPA is its commitment to an idiographic approach that recognises the value of understanding a situated experience from the perspective of a particular person or persons.

STUDI KUALITATIF : KEBUTUHAN IBU HAMIL DENGAN DIABETES MELITUS GESTASIONAL DI KABUPATEN KARANGANYAR JAWA TENGAH

2020 ◽  
pp. 17-26
Author(s):  
Arista Apriani ◽  
M Mufdlilah ◽  
Menik Sri Daryanti
Keyword(s):  
Social Support ◽  
Pregnant Women ◽  
Health Center ◽  
Blood Sugar ◽  
Interpretative Phenomenological Analysis ◽  
Health Workers ◽  
Phenomenological Analysis ◽  
Lifestyle Changes ◽  
Structured Interviews ◽  
Diabetes Melitus

ABSTRAK GDM dapat berpotensi menimbulkan komplikasi serius yang dapat mengakibatkan risiko kesehatan jangka pendek dan jangka panjang bagi ibu dan bayinya. diagnosis GDM menimbulkan efek emosional yang negatif. Persepsi ibu hamil tentang GDM dapat memengaruhi perubahan gaya hidup. Garis pertama penatalaksanaan DMG yaitu dengan perubahan gaya hidup. Tujuan menggali secara mendalam kebutuhan ibu dengan diagnosis diabetes melitus gestasional. Metode penelitian kualitatif dengan pendekatan  fenomenologi. Lokasi di Kabupaten Karanganyar yaitu Puskesmas Jaten I, Puskesmas Matesih dan RSUD Kabupaten Karanganyar, pada bulan Oktober 2019 - Januari 2020. Sampel secara criterion sampling Pengumpulan data dengan semistructure interview dengan one on one interview. Uji Keabsahan Data dengan Credibility pada penelitian ini menggunakan strategi validitas triangulasi, Tranferability, Dependability, Confirmability. Analisis data dengan Interpretative Phenomenological Analysis (IPA). Hasil penelitian kebutuhan ibu hamil dengan DMG teridentifikasi empat tema, yaitu dukungan keluarga dalam hal mengontrol pola makan, mengatarkan periksa ke tenaga kesehatan, dan mengingatkan untuk aktifitas olah raga. Dukungan sosial, yaitu cara mengontrol gula darah. Dukungan tenaga kesehatan, yaitu saran dan motivasi untuk mengontrol gula darah. Informasi mendapat saran atau perawatan DMG dalam kehamilan adalah dari tenaga kesehatan yaitu bidan, dokter, serta selain tenaga kesehatan dari teman dan internet. Kesimpulannya kebutuhan ibu hamil dengan DMG teridentifikasi empat tema, yaitu dukungan keluarga, dukungan sosial, dukungan tenaga kesehatan dan informasi.   Kata kunci: diabetes melitus gestasional, kehamilan, kebutuhan.   ABSTRACT GDM can overcome serious problems that can overcome short-term and long-term health problems for mother and baby. a diagnosis of GDM has a negative emotional effect. Pregnant women 's perception of GDM can affect lifestyle changes. The first line of management of DMG is lifestyle changes. Diagnosis of gestational diabetes mellitus. Qualitative research methods by studying phenomenology. Locations in Karanganyar Regency are Jaten I Health Center, Matesih Health Center and Karanganyar District Public Hospital, in October 2019 - January 2020. Sample sampling criteria Data collection by semi-structured interviews with one-on-one interviews. Data Validity Test with Credibility in this study using the triangulation validity strategy, Transparency, Dependability, Confirmability. Data analysis with Interpretative Phenomenological Analysis (IPA). The results of the study of the needs of pregnant women with DMG identified four themes, namely supporting the family in terms of controlling diet, sending check to health workers, and reminding for sports activities. Social support, which is a way to control blood sugar. Support of Health Workers, namely advice and motivation to control blood sugar. The information obtained from DMG advice or treatment in the assessment is from health workers, namely midwives, doctors, and also health workers from friends and the internet. In conclusion, the needs of pregnant women with DMG identified four themes, namely family support, social support, support of health workers and information.  

Sign in / Sign up

Export Citation Format

Share Document