Treatment decision-making in chronic diseases: What are the family members’ roles, needs and attitudes? A systematic review

Lamore, Kristopher; Montalescot, Lucile; Untas, Aurélie

doi:10.1016/j.pec.2017.08.003

Cited by 95 publications

(100 citation statements)

References 65 publications

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“…Consistent with previous reviews (Doody et al, ; Lamore, Montalescot, & Untas, ), this review demonstrated that families are often uninvolved in SDM, although they supported treatment decisions. Because most consumers preferred family involvement, it is recommended to provide a range of approaches to engage families in SDM.…”

Section: Discussionsupporting

confidence: 87%

“…Notably, family involvement can impact them negatively, and they might feel burdened due to the medical information and long‐term care. This means that MHPs should offer appropriate information and effective psychosocial support to reduce their burden (Lamore et al, ).…”

Section: Discussionmentioning

confidence: 99%

“…For instance, consumers' preferences are even secondary to the preferences of their family in collectivistic culture (Souraya et al, 2018). In some cultures, the health professional is trusted and expected to assume an authoritative and prescriptive role, which needs to be recognized (Souraya et al, 2018 (Lamore et al, 2017).…”

Section: Theme 6: Shared Decision-making Has Promising Impact On Hementioning

confidence: 99%

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Perceptions of shared decision‐making in severe mental illness: An integrative review

Huang¹,

Plummer

Lam

et al. 2019

Psychiatric Ment Health Nurs

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Accessible Summary What is known about shared decision‐making? There is increasing evidence of the positive impact of shared decision‐making on health outcomes. There has been little exploration of shared decision‐making regarding people diagnosed with serious mental illness from the perspectives of key stakeholders including consumers, families and mental health professionals. What this paper adds to existing knowledge? Consumers show variability in the preference for their involvement. Most stakeholders acknowledge the importance of family involvement. MHPs should share the responsibility and right to facilitate consumer involvement. There is bidirectional association between shared decision‐making and therapeutic relationships. The practice of shared decision‐making is related to multiple factors, and one main perceived barrier is time. The majority of studies are from Western countries. What are the implications for practice? Elicit consumer preferences and establish a collaborative therapeutic relationship. Encourage and engage families in treatment decision‐making. Inter‐professional collaboration should be integrated into shared decision‐making. It might require lengthier consultation time. Studies in non‐Western countries are needed to fully understand the impact of culture on shared decision‐making. AbstractIntroductionShared decision‐making (SDM) has been broadly advocated in health services and constitutes an important component of patient‐centred care and relationship‐based care.AimTo review available literature related to perceptions of key stakeholders about shared decision‐making in serious mental illness.MethodAn integrative review was conducted through a search of four online databases from January 2012 to June 2019.ResultsForty‐six articles were included. Six themes were generated from the data analysis: (a) dynamic preferences for SDM, (b) various stakeholders are rarely involved, (c) SDM is not routinely implemented, (d) multiple facilitators and barriers to SDM, (e) SDM and therapeutic relationships interact, (f) SDM has a promising impact on health outcomes.DiscussionOverall, most stakeholders have recognized the importance and flexibility of SDM in serious mental illness, although it is not routine in mental health service. Consumer preferences show variability in their involvement. Most stakeholders acknowledged the importance of family involvement to treatment decision‐making. There are several significant challenges to practice SDM. It may require extended consultation times and increasing empirical evidence regarding the SDM outcomes, as well as integrating inter‐professional collaboration into SDM. Most studies were conducted in Western culture.Implications for practiceMental health nurses should elicit consumer preferences and establish a collaborative therapeutic relationship. Encourage and engage families in treatment decision‐making when consumers prefer their families to be involved. Inter‐professional collaboration should be integrated into shared decision‐making. The...

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Section: Discussionsupporting

confidence: 87%

Section: Discussionmentioning

confidence: 99%

Section: Theme 6: Shared Decision-making Has Promising Impact On Hementioning

confidence: 99%

See 1 more Smart Citation

Perceptions of shared decision‐making in severe mental illness: An integrative review

Huang¹,

Plummer

Lam

et al. 2019

Psychiatric Ment Health Nurs

View full text Add to dashboard Cite

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“…In 30 European countries, among 1546 respondents, 34.2% said they were not involved in treatment decision making, and 17.2% said they felt rushed to make a decision . Of those, 200 were care partners (CPs), 59.0% said they helped the PwP to prepare a list of questions, and 46.5% helped to prepare a list of symptom changes prior to consultations, underscoring the role of CPs, including spouses, family members or informal caregivers, in PCC . With respect to PD, a six‐psychiatrist panel rated information provided during interviews with 223 PwP and separately by their CPs and judged that 71 (31.4%) CPs were critical for determining a psychiatric diagnosis .…”

Section: Introductionmentioning

confidence: 99%

Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Rastgardani

Armstrong

Marras

et al. 2019

Health Expectations

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Objective This study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of “off” symptoms. Methods During qualitative interviews, CPs of PwP sampled by convenience through the Michael J Fox Foundation online clinical trial matching service were asked to describe their familiarity with “off” symptoms, how “off” symptoms were discussed with clinicians, and the impact of “off” symptoms on them. Data were analysed using constant comparative technique by all members of the research team. Results A total of 20 CPs were interviewed. Compared with PwP, they were more likely to describe “off” symptoms to clinicians. CPs identified important aspects of patient‐centred care for PD: establishing a therapeutic relationship, soliciting and actively listening to information about symptoms, and providing self‐management support to both PwP and CPs. CPs said that clinicians did not always engage CPs, ask about “off” symptoms or provide self‐management guidance, limiting their ability to function as caregivers. Conclusion By not engaging and educating CPs, “off” symptoms may not be identified or addressed, leading to suboptimal medical management and quality of life for PwP. These findings must be confirmed on a broader scale through ongoing research but suggest the potential need for interventions targeted at clinicians and at CPs to promote patient‐centred care for PwP.

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“…The results in this review are presented in a narrative method (as described in Lamore, Montalescot, and Untas [2017]). One of the researchers (OKV) utilized a table to keep a record of findings from each study, and to highlight arising codes for each article.…”

Section: Methodsmentioning

confidence: 99%

The psychosocial impact of 22q11 deletion syndrome on patients and families: A systematic review

McNeill

Vogt

2018

American J of Med Genetics Pt A

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The 22q11 deletion syndrome (22q11DS) is one of the most common genomic disorders in humans, affecting around 1:2,000 to 1: 4,000 people. 22q11DS affects multiple body systems and is associated with multiple physical problems. Given the high rate of physical morbidity associated with the 22q11DS, it was hypothesized that it would exert a high psychosocial impact on patients and their relatives. To investigate this, a systematic review of the literature and narrative synthesis was performed. Three major themes emerged. First, the complex and conflicting emotions experienced by family members resulting from the diagnosis. Second, the pervasive educational and health‐care challenges associated with the diagnosis and third that people affect by 22q11DS strived for individualism. The results of this review help to inform clinical management of families with 22q11DS.

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Treatment decision-making in chronic diseases: What are the family members’ roles, needs and attitudes? A systematic review

Abstract: Physicians should include FMs in treatment decision-making when the patients and their FMs wish to be included.

Cited by 95 publications

References 65 publications

Perceptions of shared decision‐making in severe mental illness: An integrative review

Perceptions of shared decision‐making in severe mental illness: An integrative review

Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

The psychosocial impact of 22q11 deletion syndrome on patients and families: A systematic review

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