Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe <scp>COPD</scp>

Bové, Dorthe Gaby; Zakrisson, Ann‐Britt; Midtgaard, Julie; Lomborg, Kirsten; Overgaard, Dorthe

doi:10.1111/jocn.13076

Cited by 42 publications

(125 citation statements)

References 36 publications

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“…Både partneren og den syke kan bli mer bundet til hjemmet. Når det sosiale livet blir berørt vil den sosiale kontakten begrenses (Bove, Zakrisson, Midtgaard, Lomborg & Overgaard, 2016;Eriksson & Svedlund, 2006). Partneren kan oppleve betydelig praktisk arbeidsbelastning ved at han blir stående alene om det praktiske arbeidet i hjemmet (Eriksson & Svedlund, 2006;Skagestad, Grov & Øritsland, 2008).…”

Section: Kronisk Sykdom Påvirker Partnerenunclassified

“…Betegnelsen hjelpeløshet er i andre sammenhenger brukt for å beskrive denne type sorg og følelsesmessige belastninger partneren kan ha når de lever tett på familiemedlemmer med smerte og store plager uten å ha mulighet til å lindre og hjelpe. Dette er vist også å gjelde partnere til personer med ulike kroniske sykdommer (Baanders & Heijmans, 2007;Bove et al, 2016), det vil si en omsorgsgiversorg (Meuser & Marwit, 2001), som også vil kunne vaere beskrivende for partnere til personer med inflammatorisk fordøyelsessykdom.…”

Section: Sorg Over Tapunclassified

“…Vokterrollen som her er beskrevet, handler om belastninger knyttet til påpasselighet og årvåkenhet overfor endringer i pasientens sykdomssituasjon. Det samme er vist for pårørende til pasienter med kronisk obstruktiv lungesykdom (Bove et al, 2016). Vokterrollen har elementer og oppgaver i seg som oftest vil tillegges helsepersonell.…”

Section: Vokterrollen Og Forpliktende Holdninger Overfor Partnerenunclassified

“…Det samme er vist i andre studier både av partnere til pasienter med kronisk sykdom generelt og i studier av partnere til pasienter med kronisk obstruktiv lungesykdom (Baanders & Heijmans, 2007;Bove et al, 2016). En studie av partnere til pasienter med hjertesykdom (Dalteg, Benzein, Fridlund & Malm, 2011) og studie av omsorgsbyrde for pårørende generelt (Savundranayagam, Montgomery & Kosloski, 2011) har vist at det å klare de daglige belastningene kan oppleves som en kilde til stolthet på tross av tap og sorg.…”

Section: Forpliktelse Og Stolthetunclassified

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Inflammatorisk fordøyelsessykdom - fra partnerens synsvinkel

2018

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Section: Kronisk Sykdom Påvirker Partnerenunclassified

Section: Sorg Over Tapunclassified

Section: Vokterrollen Og Forpliktende Holdninger Overfor Partnerenunclassified

Section: Forpliktelse Og Stolthetunclassified

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Inflammatorisk fordøyelsessykdom - fra partnerens synsvinkel

2018

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“…Supporters of patients, such as, unpaid caregivers are important contributors to HF and COPD self‐care (Bove, Zakrisson, Midtgaard, Lomborg, & Overgaard, ; Vellone et al, ) and should be included in the process when providing interventions for people with HF or COPD (Clark et al, ; Gardiner, et al, 2010; Jaasrsma, Cameron, Riegel, & Stromberg, ; Mi et al, ). The United Kingdom National Institute for Health and Care Excellence (NICE) clinical guidelines for HF, (NG106; NICE, ) and COPD (NG115; NICE, ) advocate the inclusion of family members/caregivers in healthcare discussions and in rehabilitation.…”

Section: Introductionmentioning

confidence: 99%

Involving caregivers in self‐management interventions for patients with heart failure and chronic obstructive pulmonary disease. A systematic review and meta‐analysis

Noonan

Wingham

Dalal

et al. 2019

Journal of Advanced Nursing

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Aim To quantify the impact of involving caregivers in self‐management interventions on health‐related quality of life of patients with heart failure or chronic obstructive pulmonary disease. Design Systematic review, meta‐analysis. Data sources Searched: Medline Ebsco, PsycINFO, CINAHL, Embase, Web of Science, The British Library and ProQuest. Search time frame; January 1990–March 2018. Review Methods Randomized controlled trials involving caregivers in self‐management interventions (≥2 components) compared with usual care for patients with heart failure or chronic obstructive pulmonary disease. A matched sample based on publication year, geographic location and inclusion of an exercise intervention of studies not involving caregivers were identified. Primary outcome of analysis was patient health‐related quality of life. Results Thirteen randomized controlled trials (1,701 participants: 1,439 heart failure; 262 chronic obstructive pulmonary disease) involving caregivers (mean age 59; 58% female) were identified. Reported patient health‐related quality of life measures included; Minnesota Living with Heart Failure questionnaire, St. George's respiratory questionnaire and Short‐Form‐36. Compared with usual care, there was similar magnitude in mean improvement in patient health‐related quality of life with self‐management interventions in trials involving caregivers (SMD: 0.23, 95% confidence interval: −0.15–0.61) compared with trials without caregivers (SMD: 0.27, 0.08–0.46). Conclusion Within the methodological constraints of this study, our results indicate that involving caregivers in self‐management interventions does not result in additional improvement in patient health‐related quality of life in heart failure or chronic obstructive pulmonary disease. However, involvement of caregivers in intervention delivery remains an important consideration and key area of research. Impact Greater understanding and awareness is needed of the methodology of caregiver engagement in intervention development and delivery and its impact on patient outcomes.

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Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge

Reale

Segato

Tartaglini

et al. 2019

Syst Pract Action Res

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The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient's hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers' burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers' needs in the hospital discharge process, to the advantage of the patients and the entire community.

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Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD

Abstract: We recommend that nurses take on the responsibility for including the informal caregiver spouses in those aspects of decision-making that involve the common life of the patients and their spouses.

Cited by 42 publications

References 36 publications

Inflammatorisk fordøyelsessykdom - fra partnerens synsvinkel

Inflammatorisk fordøyelsessykdom - fra partnerens synsvinkel

Involving caregivers in self‐management interventions for patients with heart failure and chronic obstructive pulmonary disease. A systematic review and meta‐analysis

Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge

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