Diversification of care policy measures supporting older people: towards greater flexibility for carers?

Originally part of the private domain of families, care of the older people is now the concern of public policy. Yet, in the European context of cost containment, it is not easy to make a case for increasing public support and the caring function of families remains prominent in social policy. In this paper, the authors question public policies around care of the older people in relation to both the needs of old people, but also those of adult children, mainly women, who work and provide care for their old parents. We investigate the interactions between public support in long-term care and the caring function of families. The paper presents some results of a comparative research study based on the identification of the policy measures which have been implemented in different European countries in the sector of care of the older people, and on the detailed analysis of care arrangements set up by a sample of 86 family carers in these various national contexts. We argue that in a context of cost containment, whatever the usual patterns of care and the role given to the family and public authorities, the policy measures which have been introduced since the 90s aim to support family carers in various ways with the common objective of giving them the flexibility they need in the organisation of care arrangements, combining various resources (formal professional care, unpaid informal care, semi-formal care). Different patterns of flexibility can be identified according to the regulation of the policy measures.     

Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.

Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.

Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.

Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.

Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.     

Understanding the knowledge,attitudes and beliefs of community-dwelling older adults and their carers about the modification of oral medicines: A qualitative interview study to inform healthcare professional practice

BackgroundOral medicines are commonly modified (e.g. tablets split/crushed) to meet the dosing and swallowing requirements of older adults. However, there is limited research investigating the opinions of community-dwelling patients and carers about medicine modification.ObjectivesThe aim of this study was to investigate the views of community-dwelling older adults and their carers about oral medicine modification.MethodsSemi-structured, face-to-face interviews were conducted with community-dwelling older adults and carers of older adults who experienced difficulty swallowing medicines, or who required medicines to be modified. Participants were recruited from purposively selected community pharmacies using a combination of purposive, convenience and snowball sampling. Interviews were audio-recorded, transcribed verbatim and analysed thematically. The Francis method governed when data saturation had been reached.ResultsTwenty-six interviews (13 patients, 13 carers) were conducted (76.9% female, median length 11 min (IQR 8–16 min)). Four themes emerged from the data: variation in medical needs and preferences; balancing acceptance and resignation; healthcare professional engagement and; opportunities for optimising formulation suitability. The heterogeneity of medical conditions experienced by community-dwelling older adults resulted in a variety of modifications being required. Patients and carers are accepting of their medications and formulations. However, when challenges arise, they tend to feel resigned to coping within the constraints of the current medication regimen, resulting in a lack of focused communication with healthcare professionals. Thus, healthcare professionals were unaware of their difficulties and unable to offer advice or solutions.ConclusionHealthcare professionals must engage proactively with this group. Whilst a holistic approach to medication management is ideal, the disadvantage is that no single healthcare professional may identify this as their responsibility. Whilst the input and expertise of all healthcare professionals will be required, as medication experts, the pharmacy profession should take ownership and become the champion of, and for, the patient.     

Psychosocial Wellbeing of Children in Care: A Longitudinal Study of Outcomes

This paper will report research on outcomes of long term foster care from the first 4 years of a 7 year longitudinal study of foster care placements. The study uses a prospective, repeated measures design, incorporating quantitative and qualitative methodologies. Standardized measures, for which general population normative data are available, are used in the study, including the Achenbach Child Behaviour Checklist. The needs and achievements of 59 children and responses of caseworkers, carers and teachers to these were assessed at different stages of the placement. Data from personal interviews with children over 8 years and with respective foster carers and caseworkers of all children in the sample indicate that despite concerns related to placement stability, academic performance and emotional and social development, children in this sample progressed in domains such as family and social relationships and prosocial behaviours as they progressed over time in their care placements. The results at initial assessments reflected a high prevalence rate of internalising and externalising problems, and improved scores and adaptive functioning at later assessments as they progressed in permanent placements illustrating some positive effects from the care experience. Results from teachers’ comparative assessments of the children in care and a comparison group lend support to the resilience literature that views the school environment and educational process as affording structure, boundaries and security to children in care systems and enhancing their wellbeing. The voices of children add an important dimension to the study bringing into the research their lived experience. Strategies to promote resilient outcomes and facilitate children’s wellbeing in care are also discussed.     

The positive impact of multiple sclerosis (MS) on carers: Associations between carer benefit finding and positive and negative adjustment domains

Purpose.?This study examined benefit finding in MS carers including the dimensionality of benefit finding, relations between carer and care recipient benefit finding, and the effects of carer benefit finding on carer positive and negative adjustment domains.

Method.?A total of 267 carers and their care recipients completed questionnaires at Time 1 and 3 months later, Time 2 (n?=?155). Illness data were collected at Time 1, and number of problems, stress appraisal, benefit finding, negative (global distress, negative affect) and positive (life satisfaction, positive affect, dyadic adjustment) adjustment domains were measured at Time 2.

Results.?Qualitative data revealed seven benefit finding themes, two of which were adequately represented by the Benefit Finding Scale (BFS) [1] (Mohr et al. Health Psychology 1999; 18: 376). Factor analyses indicated two factors (Personal Growth, Family Relations Growth) which were psychometrically sound and showed differential relations with illness and adjustment domains. Although care recipients reported higher levels of benefit finding than carers, their benefit finding reports regarding personal growth were correlated. The carer BFS factors were positively related to carer and care recipient dyadic adjustment. Care recipient benefit finding was unrelated to carer adjustment domains. After controlling for the effects of demographics, care recipient characteristics, problems and appraisal, carer benefit finding was related to carer positive adjustment domains and unrelated to carer negative adjustment domains.

Conclusion.?Findings support the role of benefit finding in sustaining positive psychological states and the communal search for meaning within carer?–?care recipient dyads.