Prioritising key motivators and challenges influencing informal carers’ decisions for participating in randomised trials: An embedded Study Within A before and after Trial (SWAT 55)

Background: Family members, or others, often assume the role of informal (unpaid) carers of people with chronic illnesses. Care-giving, however, can impact profoundly on the quality of life of carers and can cause carer worry, stress and guilt. Implementing interventions that positively affect the lives of carers is important; however, carers as a group are often difficult to reach. We embedded a study within a pilot-feasibility trial of a mindfulness based intervention to determine and prioritise the key motivators and challenges influencing informal carers’ decisions for participating in a trial. Methods: We used a multi-method approach involving interviews with participants from a ‘host trial’ and data from systematic reviews to develop a survey that was distributed to informal carers in Ireland. The survey consisted of 28 motivator and 17 challenge statements. Participants rated how important they thought each statement was when deciding to take part in a trial on a 5-point Likert Scale. Mean scores and standard deviations were calculated for each statement and arranged in descending order to provide the priority lists. Results: Thirty-six carers responded to the survey. Helping to create awareness about carers was the top ranked motivator, followed by four study design statements related to the time at which the study occurs, the study location, format of delivery and venue. The least important motivator related to how carers were invited to take part in a study. Difficulties in planning due to the caring role emerged as the most important challenge, followed by being unable to leave the care recipient on his/her own. Conclusions: Insight into decision-making for research participation will assist trial developers tailor trial processes for informal carer populations. We recommend that trialists should consider these motivators and challenges when designing future trials involving informal carers so as to enhance trial feasibility and success.

Download Full-text

Prioritising key motivators and challenges influencing informal carers’ decisions for participating in randomised trials: An embedded Study Within A before and after Trial (SWAT 55)

HRB Open Research ◽

10.12688/hrbopenres.13125.1 ◽

2020 ◽

Vol 3 ◽

pp. 71

Author(s):

Valerie Smith ◽

Margarita Corry ◽

Declan Devane ◽

Shaun Treweek ◽

Andrew Hunter ◽

...

Keyword(s):

Research Participation ◽

Chronic Illnesses ◽

Care Recipient ◽

Feasibility Trial ◽

Informal Carer ◽

Care Giving ◽

Before And After ◽

Important Challenge ◽

Multi Method Approach ◽

Informal Carers

Download Full-text

Prioritising key motivators and challenges influencing informal carers’ decisions for participating in randomised trials: a Study Within A Trial (SWAT-55)

10.21203/rs.2.20748/v1 ◽

2020 ◽

Author(s):

Valerie Smith ◽

Margarita Corry ◽

Declan Devane ◽

Shaun Treweek ◽

Andrew Hunter ◽

...

Keyword(s):

Research Participation ◽

Chronic Illnesses ◽

Care Recipient ◽

Care Giving ◽

Study Within A Trial ◽

Important Challenge ◽

Multi Method Approach ◽

Informal Carers

Abstract Background: Family members, or others, often assume the role of informal (unpaid) carers of people with chronic illnesses. Care-giving, however, can impact profoundly on the quality of life of caregivers and can cause carer worry, stress and guilt. Implementing interventions that positively affect the lives of carers is important, however, carers as a group are often difficult to reach. We embedded a study within a pilot-feasibility study of a mindfulness based intervention for carers of people with chronic illness to determine the key motivators and challenges influencing informal carers’ decisions for participating in a trial, and to prioritise these to inform future trial design and conduct. Methods: We conducted a Study Within A Trial using a multi-method approach involving interviews with participants from the ‘host trial’ and data from systematic reviews to develop a survey that was distributed to informal carers across Ireland. The survey consisted of 28 motivator and 17 challenge statements. Participants rated how important they thought each statement was when deciding to take part in a trial on a 5-point Likert Scale (1-very unimportant to 5-very important). Mean scores and standard deviations were calculated for each statement and arranged in descending order to provide the final priority lists. Results: Thirty-six carers responded to the survey. Helping to create awareness about carers was the top ranked motivator, followed by four study design statements related to the time at which the study occurs, the study location, format of delivery and venue. The least important motivator related to how carers were invited to take part in a study. Difficulties in planning due to the caring role emerged as the most important challenge for carers, followed by being unable to leave the care recipient on his/her own. Conclusions: Insight into decision-making for research participation will assist trial developers tailor trial processes for informal caregiver populations. We recommend that trialists consider these motivators and challenges when designing future trials involving informal caregivers so as to enhance trial feasibility and success.

Download Full-text

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

BMC Geriatrics ◽

10.1186/s12877-021-02264-0 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Marcus F. Johansson ◽

Kevin J. McKee ◽

Lena Dahlberg ◽

Christine L. Williams ◽

Martina Summer Meranius ◽

...

Keyword(s):

Social Life ◽

Descriptive Analysis ◽

Psychosocial Impact ◽

Care Recipient ◽

Informal Carer ◽

Policy And Practice ◽

Swedish Population ◽

Cross Sectional ◽

People With Dementia ◽

Informal Carers

Abstract Background Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

Download Full-text

A mirror image: experiences of informal carers caring for frail, older persons at risk from falling

British Journal of Community Nursing ◽

10.12968/bjcn.2021.26.2.64 ◽

2021 ◽

Vol 26 (2) ◽

pp. 64-68

Author(s):

Carolyn Lees ◽

Thomas O'Brien ◽

Constantinos Maganaris

Keyword(s):

At Risk ◽

Social Isolation ◽

Mirror Image ◽

Care Recipient ◽

Anxiety And Depression ◽

Informal Carer ◽

Health And Social Care ◽

Informal Carers ◽

The Impact ◽

At Home

Falls can lead to social isolation, anxiety and depression for those who fall, although little is known about how informal carers manage those at risk from falling at home. This study aimed to explore the experiences of informal carers who care for frail, older people at risk from falling at home. A qualitative study using thematic analysis was conducted for this purpose. Data were collected via one-to-one, semi-structured interviews. Informal carers experienced social isolation, significant adjustments to their working lives, a fear of further falls, tiredness, anxiety and depression. These findings mirror previous observations, which have found that falling is a predictor of both physical and psychological changes, although in those who fall rather than those who care for them. This highlights the need for both health and social care services to identify the impact of care recipient falls on the informal carer.

Download Full-text

Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

BMC Health Services Research ◽

10.1186/s12913-021-06935-x ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Wilfried GUETS ◽

Lionel PERRIER

Keyword(s):

Psychological Intervention ◽

Population Aging ◽

Probit Model ◽

Care Recipient ◽

Sensitivity Analyses ◽

Informal Carer ◽

Negative Consequences ◽

Term Care ◽

Training Support ◽

Informal Carers

Abstract Background The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite. Methods We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations. Results Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05). Conclusions These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support.

Download Full-text

Informal carer in Portugal: moving towards political recognition in Portugal

European Journal of Public Health ◽

10.1093/eurpub/ckz187.178 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

I Fronteira ◽

J Simoes ◽

G Augusto

Keyword(s):

Informal Care ◽

Long Term Care ◽

Well Being ◽

Oecd Countries ◽

Low Fertility ◽

Informal Carer ◽

Term Care ◽

System Perspective ◽

Informal Carers

Abstract Informal care represents around 80% of all long term care provided in EU countries. Nevertheless, the needs for this type of care are expected to increase in the coming years in all OECD countries. Portugal is among the OECD countries with the highest ageing index (21.5% of the population was older than 65 years in 2017) due to high life expectancy and low fertility rates. As this demographic trend establishes, Portugal is expected to have more than 40% of the population over 65 years in 2037, and the expected prevalence of dementia is 3%, in 2050. In 2015 there were 2.1% of people over 65 receiving long-term care, representing 52% of all long-term care users. Around 38% were receiving care at home. It is estimated that 287,000 people in Portugal depend on informal carers. The agenda towards the official recognition of informal cares has been push forward in the country. Since 2015, several recommendations have been issued by the Parliament as well as legislative initiatives and a proposal for a Status of the Informal Carer is currently under discussion. We analyse the process of formulation of this policy in terms of sectors and stakeholders involved, definition and scope of informal carer, rights and obligations, role of the person being cared for, formal protection (e.g., labor, social, financial, training) and implementation. Recognition of the informal carer is a sector wide approach. One of the main features is the economic, social and labor protection mainly through reconciliation between work life and caring activities and promotion of the carer’s well being. Notwithstanding, and from a health system perspective, community health teams are to be the focal point for informal carers, supporting and providing specific training whenever needed. Despite its relevance, informal care should not be professionalized and responsibility of care should not be shifted from health services to informal carers. Key messages Needs for informal care are expected to increase in the coming years in OECD countries. Recognition of the informal carer is a sector wide approach.

Download Full-text

Protocol for a feasibility trial for improving breast feeding initiation and continuation: assets-based infant feeding help before and after birth (ABA)

BMJ Open ◽

10.1136/bmjopen-2017-019142 ◽

2018 ◽

Vol 8 (1) ◽

pp. e019142 ◽

Cited By ~ 7

Author(s):

Kate Jolly ◽

Jenny Ingram ◽

Joanne Clarke ◽

Debbie Johnson ◽

Heather Trickey ◽

...

Keyword(s):

Randomised Controlled Trial ◽

Infant Feeding ◽

Feasibility Study ◽

Breast Feeding ◽

Controlled Trial ◽

Feasibility Trial ◽

Study Results ◽

Service Staff ◽

Before And After ◽

Randomised Controlled

IntroductionBreast feeding improves the health of mothers and infants; the UK has low rates, with marked socioeconomic inequalities. While trials of peer support services have been effective in some settings, UK trials have not improved breast feeding rates. Qualitative research suggests that many women are alienated by the focus on breast feeding. We propose a change from breast feeding-focused interactions to respecting a woman’s feeding choices, inclusion of behaviour change theory and an increased intensity of contacts in the 2 weeks after birth when many women cease to breast feed. This will take place alongside an assets-based approach that focuses on the positive capability of individuals, their social networks and communities.We propose a feasibility study for a multicentre randomised controlled trial of the Assets feeding help Before and After birth (ABA) infant feeding service versus usual care.Methods and analysisA two-arm, non-blinded randomised feasibility study will be conducted in two UK localities. Women expecting their first baby will be eligible, regardless of feeding intention. The ABA infant feeding intervention will apply a proactive, assets-based, woman-centred, non-judgemental approach, delivered antenatally and postnatally tailored through face-to-face contacts, telephone and SMS texts. Outcomes will test the feasibility of delivering the intervention with recommended intensity and duration to disadvantaged women; acceptability to women, feeding helpers and professionals; and feasibility of a future randomised controlled trial (RCT), detailing recruitment rates, willingness to be randomised, follow-up rates at 3 days, 8 weeks and 6 months, and level of outcome completion. Outcomes of the proposed full trial will also be collected. Mixed methods will include qualitative interviews with women/partners, feeding helpers and health service staff; feeding helper logs; and review of audio-recorded helper–women interactions to assess intervention fidelity.Ethics and disseminationStudy results will inform the design of a larger multicentre RCT. The National Research Ethics Service Committee approved the study protocol.Trial registration numberISRCTN14760978; Pre-results.

Download Full-text

Animal-Assisted Activity in Critically Ill Older Adults: A Randomized Pilot and Feasibility Trial

Biological Research For Nursing ◽

10.1177/1099800420920719 ◽

2020 ◽

Vol 22 (3) ◽

pp. 412-417

Author(s):

Sandy Branson ◽

Lisa Boss ◽

Shannan Hamlin ◽

Nikhil S. Padhye

Keyword(s):

Stress Responses ◽

Feasibility Trial ◽

Eligibility Criteria ◽

Hospital Policy ◽

Related Factors ◽

Icu Patients ◽

Indwelling Catheters ◽

Control Intervention ◽

Number Of Patients ◽

Before And After

Background: Limited evidence suggests the efficacy of animal-assisted activities (AAA) in improving biobehavioral stress responses in older patients in intensive care units (ICUs). Objectives: To assess the feasibility of an AAA (dog) intervention for improving biobehavioral stress response, measured by self-reported stress and anxiety and salivary cortisol, C-reactive protein, and interleukin-1β in older ICU patients, we examined enrollment, attrition, completion, data collection, and biobehavioral stress responses. Methods: ICU patients ≥60 years old were randomly assigned to a 10-min AAA intervention or control/usual ICU care. Attitudes toward pets were assessed before the intervention. Self-reported stress and anxiety and salivary stress biomarkers were collected before and after the intervention and the usual care condition. Results: The majority of patients were ineligible due to lack of decisional capacity, younger age, inability to provide saliva specimens, or critical illness. Though 15 participants were randomly allocated (AAA = 9; control = 6), only 10 completed the study. All participants completed the questionnaires; however, saliva specimens were significantly limited by volume. AAA was associated with decreases in stress and anxiety. Biomarker results were variable and revealed no specific trends associated with stress responses. Conclusions: Barriers to recruitment included an insufficient number of patients eligible for AAA based on hospital policy, difficulty finding patients who met study eligibility criteria, and illness-related factors. Recommendations for future studies include larger samples, a stronger control intervention such as a visitor without a dog, greater control over the AAA intervention, and use of blood from indwelling catheters for biomarkers.

Download Full-text

What is the impact of research champions on integrating research in mental health clinical practice? A quasiexperimental study in South London, UK

BMJ Open ◽

10.1136/bmjopen-2017-016107 ◽

2017 ◽

Vol 7 (9) ◽

pp. e016107 ◽

Cited By ~ 4

Author(s):

Sherifat Oduola ◽

Til Wykes ◽

Dan Robotham ◽

Tom K J Craig

Keyword(s):

Mental Health ◽

Community Mental Health ◽

Intervention Group ◽

Research Participation ◽

Clinical Activity ◽

Clinical Services ◽

National Health Service Foundation ◽

Apply Research ◽

Before And After ◽

The Impact

ObjectivesKey challenges for mental health healthcare professionals to implement research alongside clinical activity have been highlighted, such as insufficient time to apply research skills and lack of support and resources. We examined the impact of employing dedicated staff to promote research in community mental health clinical settings.DesignQuasiexperiment before and after study.SettingSouth London and Maudsley National Health Service Foundation Trust.Participants4455 patients receiving care from 15 community mental health teams between 1 December 2013 and 31 December 2014.Outcome measuresThe proportion of patients approached for research participation in clinical services where research champions were present (intervention group), and where research champions were not present (comparison group).ResultsPatients in the intervention group were nearly six times more likely to be approached for research participation (Adj. OR=5.98; 95% CI 4.96 to 7.22).ConclusionsInvesting in staff that promote and drive research in clinical services increases opportunities for patients to hear about and engage in clinical research studies. However, investment needs to move beyond employing short-term staff.

Download Full-text

Care management and care provision for older relatives amongst employed informal care-givers

Ageing and Society ◽

10.1017/s0144686x07005995 ◽

2007 ◽

Vol 27 (5) ◽

pp. 755-778 ◽

Cited By ~ 37

Author(s):

CAROLYN J. ROSENTHAL ◽

ANNE MARTIN-MATTHEWS ◽

JANICE M. KEEFE

Keyword(s):

Informal Care ◽

Care Management ◽

Work And Family ◽

Direct Care ◽

Care Recipient ◽

Full Time ◽

Care Givers ◽

Care Giving ◽

Hands On ◽

Formal Services

ABSTRACTThis paper examines care management, or ‘managerial care’, a type of informal care for older adults that has been relatively neglected by researchers. While previous research has acknowledged that care-giving may involve tasks other than direct ‘hands-on’ care, the conceptualisation of managerial care has often been vague and inconsistent. This study is the first explicitly to investigate managerial care amongst a large sample of carers. In our conceptualisation, care management includes care-related discussions with other family members or the care recipient about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. The study examines the prevalence of this type of care, the circumstances under which it occurs, its variations by care-giver characteristics, and its impact on the carers. We drew from the Canadian CARNET ‘Work and Family Survey’ a sub-sample of 1,847 full-time employed individuals who were assisting older relatives. The analysis shows that managerial care is common, distinct from other types of care, a meaningful construct, and that most care-givers provide both managerial and direct care. Care management includes both the orchestration of care and financial and bureaucratic management. Providing managerial care generates stress amongst women and interferes with work amongst men, and the aspect that generates the greatest personal and job costs amongst both men and women is the orchestration of care.

Download Full-text