Helping families thrive in the face of uncertainty: Strengths based approaches to working with families affected by progressive neurological illness

Tams, Rachel; Prangnell, Simon; Daisley, Audrey

doi:10.3233/nre-161317

Cited by 14 publications

(10 citation statements)

References 29 publications

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“…It is worth noticing that, compared to their respective control groups, a significantly higher percentage of PwMS and caregivers reported less than three future goals. This result can be related to the perceived uncertainty highlighted in the MS literature, and in studies involving people with other chronic diseases (Bensing et al, 2002 ; Tams et al, 2016 ). Uncertainty leads individuals to focus on the present rather than on future planning; this aspect can be even more relevant in diseases such as MS, which entails a higher margin of unpredictability, compared with other chronic and degenerative conditions (Alschuler and Beier, 2015 ).…”

Section: Discussionmentioning

confidence: 86%

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Fave

Bassi

Allegri³

et al. 2017

Front. Psychol.

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The experience of persons with multiple sclerosis (MS) and their caregivers is usually investigated in terms of emotional distress and health-related quality of life, while well-being indicators remain largely underexplored. In addition, findings are often interpreted from the clinical perspective, neglecting socio-cultural aspects that may crucially contribute to individuals' functioning. At the methodological level, most studies rely on scaled instruments, not allowing participants to freely express their needs and resources. Based on the bio-psycho-social perspective endorsed by the International Classification of Functioning, well-being indicators were investigated among 62 persons with MS (PwMS), their 62 caregivers and two control groups, matched by age and gender. Participants completed the Positive Affect Negative Affect Schedule (PANAS), the Satisfaction with Life Scale (SWLS), and the Eudaimonic and Hedonic Happiness Investigation instrument (EHHI). EHHI provides information on participants' happiness, goals and meanings through scaled and open-ended questions, contextualized within major life domains. No relevant differences emerged among PwMS and caregivers, compared with the respective control groups, as concerns life domains associated with happiness, goals and meaning. Participants across groups prominently mentioned family, highlighting its intrinsic value and its relevance as a sharing context; health did not represent a major theme for PwMS; community, society and religion/spirituality issues were substantially neglected by all participants. PwMS and caregivers reported lower levels of positive affect than their control groups, while no substantial differences emerged for negative affect, happiness and meaningfulness levels in life and across most domains. Results suggest that the experience of MS is associated with well-being in relevant life domains, such as family and close relationships. Although PwMS and caregivers identified a lower number of goals and meaning-related opportunities compared to control groups, they showed a positive adjustment to disease through the development of personal and family resources. These assets are often undervalued by health professionals and social institutions, while they could be fruitfully exploited through the active involvement of PwMS and their families as expert and exemplary informants in initiatives aimed at promoting the well-being of individuals and communities

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Section: Discussionmentioning

confidence: 86%

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Fave

Bassi

Allegri³

et al. 2017

Front. Psychol.

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“…It may help shared decision-making regarding the deployment of highly effective but risky treatments in individuals predicted to have a poor prognosis, and conversely less effective but safer treatments if prognosis is predicted to be favourable. For some PwMS, prognostic forecasting could lead to reductions in emotional distress through providing a more favourable prognostic prediction than expected, or by reducing the uncertainty which PwMS describe as exceptionally challenging [ 7 , 8 ] and which is consistently linked to poorer psychological wellbeing [ 9 , 10 ]. However there is also the possibility of detrimental effects.…”

Section: Introductionmentioning

confidence: 99%

Do people with multiple sclerosis want to know their prognosis? A UK nationwide study

et al. 2018

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BackgroundMultiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.Methods3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out (‘monitor’) or avoid (‘blunt’) information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants’ quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.Results53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.ConclusionsPeople with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.

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“…It is not surprising that uncertainty, or a lack of clarity or predictability, is noted to be a common experience for pwMS and their families; the uncertain and ambiguous nature of the disease and the implications of this for patients and their families has received substantial research attention [ 9 ]. Although the meaning of the term ‘uncertainty’ is not always clearly operationalised or explicitly defined in the MS literature, influential theoretical work by Mishel [ 10 ] defined illness uncertainty as multifactorial and encompassing complexities, doubts, and unpredictability relating to symptoms, diagnosis, treatment, relationships, disease progression and future planning.…”

Section: Introductionmentioning

confidence: 99%

How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study

et al. 2016

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BackgroundDisease progression in multiple sclerosis (MS) is highly variable and predicting prognosis is notoriously challenging. Patients’ prognosis beliefs, responses to prognostic uncertainty and experiences of prognosis-related communication with healthcare professionals (HCPs) have received little study. These issues have implications for patients’ psychological adjustment and are important in the context of the recent development of personalised prognosis forecasting tools. This study explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication.Methods15 MS patients participated in in-depth semi-structured interviews which were analysed using inductive thematic analysis.ResultsSix themes captured key aspects of the data: Experiencing unsatisfactory communication with HCPs, Appreciating and accepting prognostic uncertainty, Trying to stay present-focused, Forming and editing personal prognosis beliefs, Ambivalence towards forecasting the future, and Prognosis information delivery. MS patients report having minimal communication with HCPs about prognosis. Over time MS patients appear to develop expectations about their disease trajectories, but do so with minimal HCP input. Provision of prognosis information by HCPs seems to run counter to patients’ attempts to remain present-focused. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of circumscribed usefulness.ConclusionsHCPs must carefully consider whether, when and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited HCP-patient communication, distinguish predictors of patients’ attitudes towards prognostication and identify circumstances under which prognostic forecasting benefits patients.

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Helping families thrive in the face of uncertainty: Strengths based approaches to working with families affected by progressive neurological illness

Cited by 14 publications

References 29 publications

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Do people with multiple sclerosis want to know their prognosis? A UK nationwide study

How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study

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