Autonomy in an ascribed relationship: the case of adult children and elderly parents

Abstract Demographic and cultural changes have given rise to the question of whether adult children will continue to provide support to their elderly parents. In a qualitative study among selected respondents from a large representative sample, we investigated the motivations of adult children to provide support to their elderly parents. Five major themes emerged: Individual choice, obligation, reciprocity, quality of the relationship and genetic relatedness. Respondents rejected general norms of filial obligations, were reluctant to impose behavioral rules on others, but nevertheless expressed strong personal obligations to care. Individualization is often equated with withdrawing from providing care. Our findings suggest otherwise. Filial obligations tend to be strong, but personalized. Social prescriptions have given way to personal motives to provide care

Functioning and disability in multiple sclerosis from the patient perspective

Multiple sclerosis (MS) has a great impact on functioning and disability. The perspective of those who experience the health problem has to be taken into account to obtain an in-depth understanding of functioning and disability. The objective was to describe the areas of functioning and disability and relevant contextual factors in MS from the patient perspective. A qualitative study using focus group methodology was performed. The sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. Identified concepts were linked to International Classification of Functioning, Disability and Health (ICF) categories according to established linking rules. Six focus groups with a total of 27 participants were performed. In total, 1327 concepts were identified and linked to 106 ICF categories of the ICF components Body Functions, Activities and Participation and Environmental Factors. This qualitative study reports on the impact of MS on functioning and disability from the patient perspective. The participants in this study provided information about all physical aspects and areas of daily life affected by the disease, as well as the environmental factors influencing their lives

Individual differences in the use of the response scale determine valuations of hypothetical health states: an empirical study

ABSTRACT: BACKGROUND: The literature remains inconclusive about the effects of socio-demographic characteristics of the respondent, including age, on valuation scores of hypothetical health states. We analyzed data from a study designed to discriminate between the effects of respondents age and time preference on valuations of health states to get insight in the contribution of individual response patterns to the variance in valuation scores. METHODS: 212 respondents from different age groups valued six hypothetical health states with three methods: a Visual Analogue Scale (VAS) and two variants of the Time trade-off (TTO). Analyses included a generalizability study, principal components analysis and cluster analysis. RESULTS: Valuation scores differed significantly but not systematically between valuation methods. A total of 36.8% of variance was explained by health states, 1.6% by elicitation method and 0.2% by age group. Individual differences in the use of the response scales, e.g. a tendency to give either high or low TTO-scores, or a high or low scoring tendency on the VAS were the main source of remaining variance. These response patterns were not related to age or other identifiable respondent characteristics. CONCLUSIONS: We conclude that individual response patterns were more important determinants of TTO or VAS valuations of health states than age or other measured respondent characteristics. Further valuation research should focus on explaining individual response patterns as a possible key to understanding the determinants of health state valuations

Protocol for the saMS trial (supportive adjustment for multiple sclerosis): a randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis

BackgroundMultiple Sclerosis (MS) is an incurable, chronic, potentially progressive and unpredictable disease of the central nervous system. The disease produces a range of unpleasant and debilitating symptoms, which can have a profound impact including disrupting activities of daily living, employment, income, relationships, social and leisure activities, and life goals. Adjusting to the illness is therefore particularly challenging. This trial tests the effectiveness of a cognitive behavioural intervention compared to supportive listening to assist adjustment in the early stages of MS.MethodsThis is a two arm randomized multi-centre parallel group controlled trial. 122 consenting participants who meet eligibility criteria will be randomly allocated to receive either Cognitive Behavioral Therapy or Supportive Listening. Eight one hour sessions of therapy (delivered over a period of 10 weeks) will be delivered by general nurses trained in both treatments. Self-report questionnaire data will be collected at baseline (0 weeks), mid-therapy (week 5 of therapy), post-therapy (15 weeks) and at six months (26 weeks) and twelve months (52 weeks) follow-up. Primary outcomes are distress and MS-related social and role impairment at twelve month follow-up. Analysis will also consider predictors and mechanisms of change during therapy. In-depth interviews to examine participants’ experiences of the interventions will be conducted with a purposively sampled sub-set of the trial participants. An economic analysis will also take place. DiscussionThis trial is distinctive in its aims in that it aids adjustment to MS in a broad sense. It is not a treatment specifically for depression. Use of nurses as therapists makes the interventions potentially viable in terms of being rolled out in the NHS. The trial benefits from incorporating patient input in the development and evaluation stages. The trial will provide important information about the efficacy, cost-effectiveness and acceptability of the interventions as well as mechanisms of psychosocial adjustment.Trial registrationCurrent Controlled Trials ISRCTN91377356<br/

Filial obligations to elderly parents: a duty to care?

A continuing need for care for elderly, combined with looser family structures prompt the question what filial obligations are. Do adult children of elderly have a duty to care? Several theories of filial obligation are reviewed. The reciprocity argument is not sensitive to the parent–child relationship after childhood. A theory of friendship does not offer a correct parallel for the relationship between adult child and elderly parent. Arguments based on need or vulnerability run the risk of being unjust to those on whom a needs-based claim is laid. To compare filial obligations with promises makes too much of parents’ expectations, however reasonable they may be. The good of being in an unchosen relationship seems the best basis for filial obligations, with an according duty to maintain the relationship when possible. We suggest this relationship should be maintained even if one of the parties is no longer capable of consciously contributing to it. We argue that this entails a duty to care about one’s parents, not for one’s parents. This implies that care for the elderly is not in the first place a task for adult children