Background: More direct inclusion of informal caregivers (i.e., family, friends) in patients’ care will make care more patient- and family-centered and has the potential to improve overall quality of care for patients. We need to understand what potentially comprises “inclusive care” so that we can define what “inclusive care” is and develop targets for care quality metrics. Methods: We conducted a critical literature review to identify key components of “caregiver inclusion.” Focusing on extant literature from 2005 to 2017, 35 papers met inclusion criteria. Directed content analysis with constant comparison was used to identify major themes related to a concept of “inclusive care.” Findings: Our analysis indicates that “inclusive care” entails five components: clear definition of caregiver role, system level policies for inclusion, explicit involvement of caregiver, provider assessment of caregiver capability, and mutuality in caregiver–provider communication. Conclusions: We discuss the evidence behind these five components using the Donabedian health care quality conceptual model.
Background: Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. Objectives: In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. Methods: The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). Findings: In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. Conclusions: The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion.
Objectives: This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. Methods: We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). Results: One‐third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care‐giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second‐degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non‐kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non‐kin is also correlated with beliefs. Conclusions: If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.
Background: Home-based informal caregiving by friends and family members of patients with cancer is becoming increasingly common globally with rates continuing to rise. Such caregiving is often emotionally and cognitively demanding, resulting in mental exhaustion and high perceived burden. Support for caregivers may be fostered by engagement with the natural environment. Interaction with nature is associated with mental health benefits such as stress reduction and improved well-being. Objectives: The purpose of this paper was to evaluate the state of the science regarding the use of natural environment interventions to support caregivers of cancer patients in the community. Methods: A compre-hensive scoping review using the Arksey and O’Malley framework and the Preferred Reporting Items for Systematic Reviews and Meta-analyses assessed natural environment therapies and mental health outcomes among cancer caregivers. Databases searched included CINAHL, PubMed, Sco-pus, Cochrane, and Alt HealthWatch. Results: Findings recovered a total of five studies over a 10-year period that met criteria, demonstrating a lack of empirical evidence addressing this potential resource to support caregivers. Often, study appraisal was not on nature exposure, but rather other aspects of the projects such as program evaluation, exercise, or complementary therapies. Both qualitative and quantitative designs were used but sample sizes were small. Conclusions: Caregivers experienced beneficial results across the various studies and future work could enhance these findings.
Background: Flanders (Belgium) is aging at high speed. In 2060, almost one in three (32 percent) will be older than 60. The number of people aged 80 and over will increase from more than 400,000 today to nearly 800,000 in 2060. This demographic change can be witnessed throughout the entire region, yet older people are overrepresented in rural areas. A large majority of older people is ‘aging in place’. This often occurs in places that witness a severe decline in basic facilities and that suffer from a loss of its young(er) population. Nevertheless, policies in Flanders strongly support aging in place, while emphasizing the role of informal caregivers. Objective: This paper explores older people's perceptions of and experiences with informal care in rural Flanders. Methods: Based on qualitative in-depth interviews, we focus on the role of family members and neighbors in providing informal care for older people living at home in two different rural areas in Flanders (‘Westhoek’ and ‘Kempen’). Findings: The analysis shows how, in both regions, receiving care from children and neighbors is simply not always perceived as a valid and realistic option by our respondents, and this for different reasons. It concludes that the current focus of elderly policy in Flanders on aging in place and the strong emphasis on the role of informal caregivers work only for those older people whose informal caregivers (in practice mostly children) live nearby. This depends strongly, of course, on spatial and economic factors. Also, neighbors are not the cohesive group they are presumed to be. Conclusions: We thus have to move beyond the nostalgic idea that neighbors and close family members can or will actively engage in informal care.
Background: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. Methods: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. Results: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. Conclusion: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
Background: Although parents often provide care for adult children coping with serious mental illness, adult siblings are typically expected to assume caregiving responsibilities when parents are no longer able to do so. However, relatively little is known about how family relationships and adults' own reactions to their sibling's mental illness may relate to their intentions to provide future sibling care. Objectives: The present study examined how adults' reports of parental practical support and mutual emotional support with parents were related to their feelings of personal loss due to mental illness and their intentions to provide future care for their sibling with mental illness. Methods: A total of 107 adults (43 men; 64 women; age M = 32.4 years; SD = 6.56) with a sibling with mental illness completed an online survey about relationships with their parents, personal loss due to mental illness, and intentions to provide future sibling care. Results: Present findings suggest that perceived parental social support moderated relationships between adults' reports of personal loss and intentions to provide future sibling care. Overall, adults who reported higher levels of personal loss generally reported greater intentions to provide future care for their sibling with mental illness when they perceived themselves as having more practical and mutual emotional support with their parents and had lower intentions to provide future care when they perceived themselves as having less mutual emotional support with their parents. Conclusions: Findings highlight the importance of adults' perceptions of personal loss and parental social support in their intentions to provide future sibling care and have implications for family caregiving interventions. Highlights: Adults are often expected to provide future care for sibling with mental illness Adults' views of parental support and personal loss were related to future sibling caregiving intentions Focus on family relationships can improve caregiving for people with mental illness
Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.
Background Around 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being. Methods This comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety. Results Italian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (beta = - 1.205; p = 0.029), being 40-54 years-old with depression symptoms (beta = - 1.739; p = 0.003), and being female with symptoms of both depression (beta = - 1.793; p < 0.001) and anxiety (beta = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (beta = 0.286; p < 0.000; beta = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (beta = 0.164; p = 0.010; beta = - 1.133; p = 0.033; beta = - 1.181; p = 0.031). Conclusion Multiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.
Background The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. Methods The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. Results The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. Conclusions Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.
Background: It is becoming more common for siblings to fulfill a caregiving role for their brother or sister, particularly because people with intellectual/developmental disabilities (IDD) are often living longer and outliving their parents. However, most of what we know about siblings of people with IDD is based on research with children, and limited studies on the adult sibling experiences in Canada have been published. To meet the support needs of Canadian adult siblings, "The Sibling Collaborative", a grass‐roots initiative, conducted a needs assessment. Specific Aims The purpose of this study was to better understand the current challenges siblings experience and how requested resources may differ across three age groups: adults between the ages of 20 and 29 years, 30 to 49 years, and 50 years of age and older. Method A total of 260 siblings of individuals with IDD from across Ontario completed an online survey. Findings Siblings endorsed a relatively low rating of intensity of support that they provided for their brothers or sisters with IDD at the time of survey completion; however, the majority indicated that they intended to take a greater caregiving role in the future. Ratings of support differed by sibling age groups, as did challenges related to supporting brothers or sisters with IDD. Overall, participants reported a range of desired resources and preferred methods of accessing resources. Discussion Siblings' caregiving relationships with their brothers and sisters with IDD differed across age groups. Results from the current study indicate different supports may be needed for different age groups. As policies around the world continue to encourage continued family involvement in caregiving for adults with IDD, it is important to understand how systems can better support sibling caregivers.
This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.
While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April–November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support. One hundred and twenty‐eight participant responses were analysed. Qualitative (thematic) analysis identified that 'distance carers' carry out multiple care tasks, both when with, and apart from, the person they care for. Distance creates specific challenges for carers who have to work to 'bridge the distance gap' and who cannot 'just drop in' and see the person they support. Distance further exposes carers to emotional, financial and temporal demands. The use of technologies or the availability of a wider support network may support distance carers, and some explore the viability of relocation. However, these potential support strategies were identified as 'fragile' and at risk of breaking down. Despite the challenges identified, distance carers also reported satisfactions derived from supporting their relative/friend. While the numbers of those providing distance care are unknown, this research suggests that this is a significant carer group, whose needs should be recognised in health and social care policy, practice and research.
Canada is experiencing population aging and evidence on the provision of care is based on data collected from majority populations. This analysis compared social networks and patterns of care provision between heterosexual and lesbian, gay, and bisexual (LGB) Canadians between the age of 45 and 85 years. Data were drawn from the Canadian Longitudinal Study on Aging (CLSA), a large national study of health and aging. The results from analysis of baseline data showed that LGB participants were less likely to have children and reported seeing their friends more recently than heterosexual participants. Gay and bisexual men were more likely to provide care support in comparison to heterosexual men. LGB participants were more likely to provide care to friends. The results highlight the importance of considering distinct social networks in the development of policy and practice approaches to support a diverse aging population.
Objectives: Compare care demands, strain, and health across 912 primary and secondary caregivers of parents, other family, and friends aged 50 and older. Methods: Data came from the nationally representative Caregiving in the U.S. 2015 data set. Two by three factorial ANOVAs and binary logistic regression examined the effects of primary caregiver status and relationship type on care demands and well-being. Results: Primary caregivers provided more hours of care for a longer duration and were more likely to report financial stress, and that caregiving made their health worse. Primary caregivers did not differ from secondary caregivers in emotional stress, and physical strain was comparable in primary and secondary caregivers of parents and other family. Caregivers of parents generally reported the highest levels of demands and stress/strain. Controlling for amount of care provided attenuated some of these differences. Conclusions: Secondary caregivers provide less care but report emotional stress comparable to primary caregivers. Primary caregivers of friends provide high levels of assistance that may increase their physical strain. Clinical Implications: Caregiver research and intervention should include greater attention to needs of secondary caregivers, and caregivers of friends, and ways to strengthen their potentially critical roles.
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent-living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.
Background As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. Method This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD. Results Current sibling caregiving was positively correlated with sibling relationship quality, sibling advocacy and future planning, maladaptive behaviours of individuals with IDD, and family size. Current sibling caregiving was negatively correlated with parent caregiving abilities and functional abilities of individuals with IDD. Further, among siblings who provided care, the level and nature of sibling caregiving were negatively correlated with parent caregiving abilities. Conclusions The results identify the correlates of current caregiving among siblings of individuals with IDD. More research is needed to understand current sibling caregiving.
Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families.
As a neglected dimension of the quality of care, assessments of caregiver reliability by older adults receiving help contributes to the better understanding of unmet needs for assistance in everyday life. This study examines how the numbers and composition of helpers - both potential and actual - relate to older Americans' reports of the reliability of assistance. According to the 2008 US National Elder Mistreatment Study (<i>n</i> = 2,176), the potential network, proxied by marital status and household size, was not a significant predictor of unreliable care, nor was the actual number of caregivers. We distinguish four types of helping sources: kin-only; exclusively informal non-kin (eg friends, neighbours); exclusively formal (paid); and mixed type. There was a higher risk of unreliable care among respondents relying exclusively on informal non-kin assistance compared with exclusively kin help. Kin-only provided more reliable care than informal non-kin but were no more reliable than formal or mixed types.
Background and Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.; Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.; Results: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.; Conclusions: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed.
Aims: When experiencing mental health difficulties, university students turn to their friends for support. This study assessed the consequences of caregiving among a university sample, identifying predictors of caregiving burden among students. Methods: A total of 79 students with experience of supporting a friend with mental health difficulties were recruited through a UK student mental health charity to complete an online survey. Alongside qualitative data, the online survey used the Experience of Caregiving Inventory and the Involvement Evaluation Questionnaire as measures of the consequences of caregiving. Results: Students supporting friends, housemates or partners were found to experience significant consequences of caregiving. Frequency of face‐to‐face contact and duration of illness predicted more negative consequences of caregiving, but these relationships were not straightforward. The presence and intensity of professional support did not influence the experience of caregiving. Conclusions: The study suggests that the impact of supporting friends with mental health difficulties is not insubstantial for students. Broadening the network of informal social support may help improve the experience for students supporting a friend, but currently, contact with professional services appears to have a limited effect.
Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010). This dissertation looks at the wellbeing and family functioning of siblings who become the co-residential caregiver following the transition of a brother or sister with DD from parental to sibling co-residential care. The family systems framework was the theoretical lens for understanding caregiver wellbeing and overall family functioning. Hermeneutic-narrative inquiry was the approach for interviewing and exploring the stories of 10 sibling caregivers of a brother or sister with DD following their transition from parental to sibling co-residential care. Two analytical approaches were used. Firstly, structural analysis involved a within-case analysis of individual participants' stories of transition to determine the meaning ascribed to and identified with the caregiving experience. Secondly, thematic narrative analysis included an across-case analysis to identify themes related to caregiver wellbeing, family functioning, reciprocity of mutual support, and anticipating the caregiver role versus actual experience. Findings from the structural analysis showed that the meaning of the caregiving experience included a duty, obligation, responsibility and commitment to the family. Results from the thematic narrative analysis showed overall lower social and emotional wellbeing among participants, reduced functionality among family members with respect to lower emotional and social functioning, reduced engagement in recreation/leisure activities, as well as lower economic functionality for sibling caregivers with no spouse or children. Sibling caregivers reported higher overall wellbeing and family functioning due to availability of formal supports (e.g., respite care, day program services), and informal support, such as having support from a spouse, child, or extended family member. Findings regarding reciprocity showed increased instrumental support among sibling caregivers and reduced emotional support. When anticipating the role, caregivers described knowing they would assume the role but were unclear of the shift to assuming a parental rather than sibling role. Other unanticipated discoveries included feeling captive to the role and feelings of helplessness. Caregivers' actual experiences involved learning to manage new challenges, society's patronizing view of persons with DD, and an overall sense of pride in caregiving for giving back to their sibling with DD. Grief and future planning were also discussed, including the effect of grief on the sibling caregiver, sibling caregiver's children and sibling with DD. Future planning looked at the aspects of planning and not having planned for the future of the sibling with DD. The study concludes with implications for current and future social work practice and research, as well as the study's strengths and limitations.
Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.
As parents age, well siblings are often asked to assume caregiving responsibilities for their brother or sister with mental illness. However, relatively little is known about how well siblings prioritize sibling caregiving responsibilities with other life demands. We examined well siblings’ attitudes toward self-care and caregiving for their sibling with mental illness (self- and sibling-care) using two cross-sectional samples. The first sample of well siblings (N = 242) was used to examine the psychometric properties of the self- and sibling-care measure (SSCM), designed to assess the degree to which siblings prioritize their own needs and the needs of their sibling with mental illness. A second sample (N = 103) was used to determine the relative contribution of self- and sibling-care attitudes in accounting for variation in well siblings’ reports of personal loss and stress-related personal growth. Results support the psychometric validity of the SSCM and suggest that self- and sibling-care attitudes account for greater variance in scores on perceived personal loss and stress-related growth than demographic or caregiving factors. Our findings support the need to address family care responsibilities and resource limitations through recovery-oriented mental health policies, services, and programs.
Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. Results Mothers experiencing more stress reported higher levels of sibling impact mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.
This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.
Background: A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people’s desire for a home death, but very little is known about the challenges they face during their involvement. Aim: Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care. Design: Exploratory qualitative design perspectives of non-kin-carers were collected through personal in-depth interviews (n = 15) retrospectively. Setting: Home care, urban and rural areas in Austria Findings: A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decision-making and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kin-carers’ steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams. Conclusion: Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved.
Rationale: The primary setting of palliative care has shifted from inpatient care to patients’ residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. Patient concerns: In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. Diagnoses: The patient was diagnosed with stage IV breast cancer. Interventions: The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. Outcomes: The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Lessons: Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients’ end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population ageing and social isolation may continue to advance worldwide.
Purpose of the Study: This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Design and Methods: Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers’ well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Results: Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. Implication: The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background.
Introduction: Family and friends often help chronically ill adults manage their conditions. Information about specific ways supporters help with disease management, and their experiences with and concerns about helping are lacking. This study describes key roles and concerns of family members who support the health management of adults with chronic illness, and compares experiences of health supporters living in and outside of support recipients’ homes. Methods: Data were obtained from a national internet survey of 1,722 adults selected to represent the U.S. population. Detailed survey questions were completed by 703 respondents who reported providing regular disease-management help to at least one functionally-independent family member or friend with at least one of five chronic conditions (diabetes, heart failure, chronic lung disease, arthritis, depression). Results: Current supporters assisted 834 chronically ill adults: 257 receiving in-home support and 577 receiving out-of-home support. Current supporters spent 2.1 hours/week on average helping their support recipient with health care, and 21.2% attended their recipient’s health care appointments. Many recipients discussed crucial concerns about medication side effects (47.0%) and trouble paying for medications (32.0%) with supporters. However, 41.0% of supporters reported insufficient information about recipients’ health conditions and regimen to be helpful. In-home supporters reported arguing more often with support recipients, but also received more information from recipients’ health care providers than out-of-home supporters. Discussion: Family and friends have significant potential to influence patients’ chronic illness self-management. Programs to engage chronically ill patients’ families to support self-management could provide information and skills targeting needs identified by supporters.
Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low‐ and middle‐income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi‐structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi‐structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients’ needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients’ vulnerability as caregivers could redirect care‐giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis‐related mental health problems, community‐based mental healthcare should broaden its scope and incorporate local strengths and challenges.
Purpose: The life course perspective suggests that serious physical or mental health conditions that limit the daily activities of any one family member are likely to be consequential for other family members as well. In this article, we explored whether adult children’s serious health conditions affected the flow of expressive and instrumental support between mothers and both the offspring with health conditions and other offspring in the family. Design and Methods: We used data collected from 369 older mothers (M = 78 years) regarding 1,338 of their adult children (M = 49 years), as part of the Within-Family Differences Study-II. Results: Adult children with serious health conditions were more likely than their siblings to be given support by their mothers. The presence of adult children with health issues did not reduce mothers’ provision of expressive or instrumental support to their children without health conditions. However, in families in which a higher proportion of children had serious health conditions, mothers received expressive support from a greater proportion of their healthy adult children than in families with a smaller proportion of adult children with health conditions. Implications: These findings contribute to a growing body of research demonstrating the ways in which conditions in adult children’s lives affect their mothers.
The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.
Objective: Individuals who care for a family member or friend at end‐of‐life experience a range of practical and emotional challenges. This paper applies a theoretical framework of personal construct psychology (PCP) to explore carers’ experiences of end‐of‐life care, with a focus on implications for their sense of identity.
Method: Literature searches were conducted through PsycINFO, Medline, PubMed, and Google Scholar for articles published since 2005 with a focus on carer experiences at end‐of‐life. Main themes identified through this literature review were considered in light of PCP theory, with particular attention on the notion of “threat” (i.e., an imminent and comprehensive change in a person's core identity structure). Implications were then drawn for providing practical carer support.
Results: The reviewed literature highlighted carers’ practical challenges at end‐of‐life (e.g., assisting with activities of daily living), emotional challenges (e.g., negotiating the imminent death of a family member or friend), and personal implications (e.g., sudden removal of caring responsibilities).
Conclusions: The constructivist notion of “threat” is a particularly salient concept for end‐of‐life carers as they negotiate the approaching death of a family member or friend. This can have significant ramifications for their sense of identity beyond bereavement. Clinical approaches based on PCP may effectively support end‐of‐life carers to develop identities beyond their caring role as they transition to a life without caring responsibilities.
Objectives: This study will explore how help is constructed during and following radiotherapy for patients with cancer.
Methods: Grounded theory methods were used in the study to explore the way in which family members and friends constructed a role for themselves in relation to patients receiving radiotherapy. A total of 22 helpers were interviewed. Patients were being treated for a range of cancers including breast, prostate, colorectal, and head and neck.
Results: Respondents in this study consistently defined themselves as “helpers” rather than “carers.” While radiotherapy as a treatment modality was mostly seen as noninvasive, the cancer diagnosis cast a long shadow over the lives of helpers and patients creating a separation in longstanding relationships. Helpers experienced this separation as “otherness.” Help became an important vehicle for bridging this separation. Individuals developed different ways of knowing about the patient as the basis for providing help. Two different types of help were identified in this study: the behind the scenes, largely invisible work that helpers undertook to help the patient without their knowledge and the explicit visible help that was much more commonly negotiated and discussed between helpers and patients.
Conclusions: The study provides the basis for a greater understanding on the part of professionals into the impact of diagnosis and radiotherapy treatment on family and friends. In doing so, the study identifies opportunities for the experience of helpers to be recognised and supported by professionals.
Family caregivers are a quickly growing population in American society and are potentially vulnerable to a number of risks to well-being. High stress and little support can combine to cause difficulties in health and personal relationships. Siblings are, however, a possible source of protection for the at-risk caregiver. This study examines the relationships between caregiver burden, relational conflict, individual contribution, and gratitude exchange between caregivers and their siblings as they attend to the issue of caring for aging parents. Dyadic data were collected through an online survey and were analyzed using a series of actor–partner interdependence models. Dimensions of gratitude related to reduced caregiver burden, improved care-related conflict, and promotion of greater contribution to caregiving.
Background: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. Aim: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. Design: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis. Setting/participants: A total of 58 participants (19 Māori and 39 non-Māori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews. Results: A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death. Conclusion: Our study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.
Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members.
Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I/DD.
Are there local cultural ideals of filial caregiving responsibility - a type of repayment of a debt to parents - and do they differ by gender? How are filial caregiving responsibilities allocated among siblings in such instances, and how do they fit cultural ideals? Is caregiving negotiated among siblings; and if so, how? This qualitative study conducted in rural Andean Colombia is based on a sample of thirty-eight interviews differentiated by gender and employment in the (formal and informal) labor market, with individuals who have at least one parent in need of care and at least one living sibling of the opposite gender. The study explores the cultural definition of caregiving, the ideal norms of who should care for parents, and the actual gendered patterns of caregiving. This interdisciplinary study expands existing research in the health and social sciences by exploring the pathways to becoming a caregiver.
Norwich: a ‘coffee morning’ initiative aimed to give people with dementia and carers the ordinary social opportunities they were missing. It has succeeded and also brought many further benefits, as Judith Farmer explains
This article is focused on children providing and financing long-term care for their elderly parent. The aim of this work is to highlight the interactions that may take place among siblings when deciding whether or not to become a caregiver. We look at families with two children using data from the Survey of Health, Ageing and Retirement in Europe; our sample contains 314 dependent elderly and their 628 adult children. In order to identify the interactions between siblings, we have specified a two-person discrete game model. To estimate this model, without invoking the ‘coherency’ condition, we have added an endogenous selection rule to solve the incompleteness problem arising from multiplicity or absence of equilibrium. Our empirical results suggest that the three classical effects identified by Manski could potentially explain the observed correlation between the siblings' caregiving behaviour. Correlated effects alone appear to be weak. Contextual interactions and endogenous interactions reveal cross-effects. The asymmetric character of the endogenous interactions is our most striking result. The younger child's involvement appears to increase the net benefit of caregiving for the elder one, whereas the elder child's involvement decreases the net benefit of caregiving for the younger child. Copyright © 2009 John Wiley & Sons, Ltd.
The aim of this article is to analyse 20 Finnish working carers' perceptions of their sibling relations and the sharing of the responsibility for parental care. The main focus is on the interviewees' rationales for the participation or non-participation of their siblings in the parents' care. Almost all the interviewed carers stated that the division of care responsibilities is unequal and that they are the primary carers, but the majority did not convey any clear intention to try to persuade their siblings to increase their participation in parental care. In many cases, the siblings were described either as entirely absent or as providing occasional backup, but some interviewees reported that caring for the parent(s) was shared with their other siblings. Consequently, three participation patterns were identified: ‘absence’, ‘backup’ and ‘togetherness’. All the interviewees offered rationales for the unequal division of care tasks and responsibilities among the siblings. The discussion focuses on these rationales and their variations by participation patterns, and considers the similarity of the findings to those from previous American and British studies. The study concludes that social-care services should take the primary carer's siblings into consideration, although not always as a ‘resource’. It should not be taken for granted or assumed that the primary care-giver receives help from her or his siblings, even if their relationship is otherwise close and unproblematic.
The article discusses issues being debated in Great Britain's House of Commons in July 2010. Health Minister Paul Burstow observes that young carers of parents or siblings needed an integrated support programme from schools, social services and community groups. Education Minister Michael Gove stated that the number of teachers under the Teach First Programme will be doubled to 1,140 a year. Chris Leslie of Lab/Co-op, Nottingham East, asked that funding for mental health services for deprived children in Nottingham be maintained.
This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co-operation between families and hospitals when elderly patients are discharged back to the community.
Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.
Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.
Results: Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.
Conclusions: Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions.
Objective: Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness.
Methods: This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N = 241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes.
Results: The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being.
Conclusion: Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support.
Practice implications: The non-significant differences show that each intervention can be effective, and that it depends upon the individual's preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.
Research on informal care-giving has largely neglected the contributions of non-kin carers. This paper investigated the characteristics and contributions of non-kin who care for older adults with a long-term health problem, and investigated friends and neighbours as distinct categories of care providers. Using data from 324 non-kin carers in the 1996 General Social Survey of Canada, this study compared individual and relationship characteristics, care tasks and amount of care provided for the two groups. Interpersonal and socio-demographic characteristics were investigated as mediators of potential differences between friends and neighbours in patterns of care. Results demonstrate that friend and neighbour carers differed on age, marital status, geographical proximity and relationship closeness. Friends were more likely than neighbours to assist with personal care, bills and banking, and transportation. Neighbours were more likely to assist with home maintenance. Friends provided assistance with a greater number of tasks and provided more hours of care per week, suggesting a more prominent role in the care of non-kin than neighbours. Age, income, a minor child in the household, proximity and relationship closeness significantly predicted amount of care provided, and relationship closeness largely explained differences between friends and neighbours. Future research on informal care-giving can build on the findings that distinguish friend and neighbour carers to further discriminate the dynamics of non-kin care.
The author argues that funding for young carers' support should be ring-fenced to avoid that possibility that British councils may use the budget to fend off the next budgetary crisis. He describes young carers as children who take on responsibility for their families, acting as main carers for their disabled or chronically ill parents and siblings. The government has funded initiatives to support young carers. However, he notes that government aims to transfer this funding to local authorities.
Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.
Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.
Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).
Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.
Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.
Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups
Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.
Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.
Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.
Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.
Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age-related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.
Most published research on informal care for older people focuses on the support provided by relatives. The role of non-kin carers can, however, also be significant in supporting older people in their own homes. In this paper, we report the findings from an exploratory study of the support provided by friends and neighbours who are the main carers of frail older people. It draws on interviews with an opportunistic sample of friends, neighbours and older people, which explored their views about the support arrangements, the reasons why help was provided and any difficulties experienced. Several friends and neighbours provided intensive and frequent help, and some played a key role in co-ordinating other services. One of the main forms of direct support related to older people's quality of life, at a broader level than the practical help provided by statutory services. The flexibility of such support, and the friends' and neighbours' concern for older people as individuals, were particularly important to the people they helped. Nevertheless, such help was not provided without costs to the carers. The study highlights the need for policy-makers and practitioners not to take help from friends and neighbours for granted and, in line with the White Paper Modernising Social Services, to provide the support services they need.
Background Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.
Method Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited.
Results Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported.
Conclusion The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.
Social networks are seen to influence the use of health and social care services. In a secondary analysis of data from a longitudinal study of befriending of carers of people with dementia, the authors studied the relationship between network type and support from family/friends, voluntary sector befriending and residential/nursing care. Using Wenger's typology of social networks, finding suggest that the pattern of support use varies by differences in the structure of networks. It is recommended that questions on social networks should be widely incorporated into carers' assessments to help identify need for social support interventions and to enable the sensitive selection of appropriate types of carer support to be provided.
This report is based on findings from a large national survey of carers’ views carried out between November 2002 and February 2003. Under Pressure focuses on two principle questions: how has the mechanism introduced to provide carers with a gateway to statutory support, the carers’ assessment, been received?; and what helps carers to support their own health and well being?
To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.
Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families.
In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.