Development of a theoretical framework describing relatives’ involvement in palliative care

Andershed, Birgitta; Ternestedt, Britt‐Marie

doi:10.1046/j.1365-2648.2001.01785.x

Cited by 108 publications

(133 citation statements)

References 13 publications

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“…The main picture that emerged from the analyses concerned comfort, retaining everyday life, action, commitment, hope, self-transcendence, and doing the best possible. The significance of these aspects is supported by other studies of next of kin of palliative patients during ongoing care~Brown et al Hull, 1990;Steele & Fitch, 1996;Andershed & Ternestedt, 2001;Grbich et al, 2001;Strang & Strang, 2001!, of palliative patients~Cameron & Parkes, 1983Salander et al, 1996;Hodgson et al, 1997;Breitbart, 2002!, in the general palliative or coping literature~Lazarus & Folkman, 1984;Doyle & Jeffrey, 2000;Kinsella et al, 2000!. However, few previous studies have focused specifically on meaningfulness for next of kin of patients in palliative home care, and the present study revealed aspects that have not been much illuminated in earlier literature and that seem important for the clinical situation.…”

Section: Discussionmentioning

confidence: 81%

Meaningfulness in palliative home care: An interview study of dying cancer patients' next of kin

Milberg

Strang

2003

Pall Supp Care

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Section: Discussionmentioning

confidence: 81%

Meaningfulness in palliative home care: An interview study of dying cancer patients' next of kin

Milberg

Strang

2003

Pall Supp Care

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“…The ways in which palliative care providers interact with relatives profoundly influence their ability for involvement (see also Andershed & Ternestedt, 2001). It has been argued that relatives' emotions around participation in care, and satisfaction with their own contributions, constitute important memories after the death of the loved one (Brown & Stetz, 1999;Grbich, Parker, & Maddocks, 2001;Koop & Strang, 2003;Milberg, 2003).…”

Section: Discussionmentioning

confidence: 97%

Spouses' grief before the patient's death: Retrospective experiences related to palliative home care in urban Sweden

Gunnarsson

Öhlén

2006

Mortality

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Based on the lived experience research model, this study retrospectively explores the experiences of spouses of persons who died after being admitted to palliative home care, in order to achieve a deeper understanding of the meaning(s) of spouses' grief before the patient's death. The context for the study was palliative home care in urban Sweden. The transcripts from interviews with 12 spouses were analysed according to a hermeneutic phenomenological method. Six themes were found: realizing that the partner would soon die, changed relationship, fear-inducing feelings, focusing on doing the utmost for the sick partner, trying to live as usual, and time slipping away while also standing still. These themes were interpreted as aspects of grief: initializing grief, the emergence of grief, lacking the space to grieve, holding grief at a distance, handling grief, and a temporality paradox of grief. Among the most salient aspects of this research was the finding that spouses often put their own feelings at a distance, and endured suffering in silence. This suggests the need for support for spouses that not only aims to enhance their ability to facilitate the end-of-life situation for the sick partner, but also helps them to master their own lives.

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“…Studies have demonstrated the importance for relatives of dying patients to be given sufficient information about the patient's situation, to be involved in the patient's care and to be offered support for their own difficult situation [34][35] Eriksson & Lauri [36] pointed out that relatives' need for information was greater than their need for emotional support, which also emphasizes the importance of communication goals [6,7]. Insufficient acknowledgement was described by patients in terms of insufficient respect and not being seen as a unique person.…”

Section: Discussionmentioning

confidence: 99%

Patients’ and relatives’ complaints about encounters and communication in health care: Evidence for quality improvement

Jangland

Gunningberg

Carlsson

2009

Patient Education and Counseling

134

141

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Results Three categories were identified: "Not receiving information or being given the option to participate", "Not being encountered in a professional manner" and "Not receiving nursing or practical support". Insufficient information, insufficient respect and insufficient empathy were described as the most common reasons for a negative professional encounter. ConclusionPatients and relatives experienced unnecessary anxiety and reduced confidence in health care after negative professional encounters. Practice implicationsThe complaints reported to the Patients' Advisory Committee could be used more effectively in health care and be regarded as important evidence when working with quality improvement. To systematically use patient stories, such as those obtained in this report, as a reflective tool in education and supervision could be one way to improve communication and bring new understanding about the patient's perspective in health care. KeywordsComplaints, communication, professional encounter and content analysis. Much research has been done on communication between patients and health professionals. For example, the power of the information communicated by the voice was studied among surgeons, and it was suggested that "how" a message is conveyed may be as important as "what" is said [8]. The physician-patient communication was studied among primary care physicians and surgeons. Physicians with no-claim seemed to conduct longer visits, educate patients more, check understanding more and use more humour during the visit than physicians with claims [9]. A study by Kuzel [10] showed that negative outcomes in the clinician-patient relationship, dominated by stories of disrespect or insensitivity, were reported as more common than technical errors in diagnosis and treatment.The Institute for Healthcare Improvement (IHI) emphasizes that the health care system needs to be more patient-centred and to involve the patients and families in the design of care. Patient-centred care requires respect for patients' values and expressed needs, information and communication, coordination of care, involvement of family, 4 and concordance between the patient and health professionals [11]. Eldh [12] concludes that health care professionals should support patient participation by recognizing the patient as an individual and as a resourceful partner. The benefits of patient-centred care could be that patients are more motivated to follow treatment advice [13] and are more satisfied with health care [14].Patient satisfaction is used as a common quality indicator in health care [15][16]. A problem using patient satisfaction as a quality indicator depends on the complexities where different factors could affect the outcome, and the reliability and validity questioned [17]. Factors such as gratitude, faith and loyalty to health care providers, could influence patient satisfaction [18] as well as background factors such as age, health status and expectations of care [19][20]. A patient's evaluation could be positive, even when care...

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Development of a theoretical framework describing relatives’ involvement in palliative care

Cited by 108 publications

References 13 publications

Meaningfulness in palliative home care: An interview study of dying cancer patients' next of kin

Meaningfulness in palliative home care: An interview study of dying cancer patients' next of kin

Spouses' grief before the patient's death: Retrospective experiences related to palliative home care in urban Sweden

Patients’ and relatives’ complaints about encounters and communication in health care: Evidence for quality improvement

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