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Afzal Javed. "Developing partnership with patients and carers: A need of the time for mental health service delivery." Journal of the Pakistan Medical Association 74, no. 7 (June 28, 2024): 1217–18. http://dx.doi.org/10.47391/jpma.24-51.
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Contemporary practice of psychiatry is witnessing a radicle shift in the care of mentally ill. As compared to the 20th century, we are now moving towards community psychiatry and large mental hospitals and asylums are closing with a shift to manage these patients closer to their homes. Following these changes in mental health care, current literature provides growing evidence for developing partnership with patients, carers and family members in the delivery of mental health services. While this approach is appreciated for improving the quality of life of patients, there has also been some concerns about increasing burden of carers and families when they have limited resources and support to face the challenges in dealing with the management of their patients.1 Treatment and management of mental health problems are complex and needs a wider recognition for having patients and care-givers involvement in the treatment processes. Patients with mental health problems unfortunately suffer from a wide range of psychosocial adversities and require engagement leading to more empowerment in decision making processes. Furthermore, quality of health services can be measured by the experiences of patients and their families. Their viewpoints can reflect their happiness as well as the effectiveness of the services that could be based on their knowledge and understanding of their role in the treatment processes. However, in many societies, the nature and role of families are either undermined or not fully understood.2 Families may be considered as a cause for the onset of mental health issues and can be blamed for causing or triggering the illnesses. Similarly, the clinicians are given the full authority to decide about the treatment choices and preferred possibilities. Their role may be acknowledged as “the ultimate expert” who can decide in a final way and patients or families may have limited opinions in such decisions. Professionals may also consider confidentiality issues as a primary reason for not sharing information and taking relatives or family members on board, so they are frequently excluded from the decision-making processes. Apart from confidentiality reasons, clinicians may not have sufficient training and skills to deal with families and patients in terms of supporting and dealing with their concerns.3 Continued...
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Sloan, Danetta, Valerie Cotter, Quincy Samus, Morgan Spliedt, Samuel Means, Janice Bowie, and Darrell Gaskin. "My Faith Gives Me Strength: Black Churches Supporting Dementia Care Partners." Innovation in Aging 5, Supplement_1 (December 1, 2021): 516. http://dx.doi.org/10.1093/geroni/igab046.1995.
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Abstract Inequities in dementia care require an in depth understanding of dementia care partner life experiences, care needs, sources of support and ways to improve those experiences at the community level. In partnership with Black Churches in Baltimore, MD and rural Pennsylvania, we facilitated three focus groups (n=30) with Black dementia care partners to understand: 1) unique dementia care-related needs and challenges, and 2) how the church can be a supportive care partner. Participants noted three overarching themes related to challenges and needs: 1) unique challenges in caregiving - assuming various roles to provide comprehensive care, working within policies of support services, environmental challenges (neighborhood safety), and family conflicts; 2) lack of dementia education and educational materials; and 3) unmet needs of the care recipient – lack of dementia friendly neighborhoods, lack of meaningful activities, and undiagnosed dementia. Regarding the supportive role of the church, the theme of perceived role of the church included providing emotional and social support for care partners and recipients, reducing burden through providing respite, support groups, networking/ connections to resources, and promoting health events.
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Basukala, Sulochana. "Care giver burden among spouse of psychiatric patients attending psychiatry outpatient department of a teaching hospital." Journal of Patan Academy of Health Sciences 6, no. 1 (June 30, 2019): 72–77. http://dx.doi.org/10.3126/jpahs.v6i1.27084.
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Introductions: Caregiver burden in mental illness is a global issue. Burden is more significant and high among spouse than other caregivers. Spouse face illness-specific burdens of feeling powerlessness, fear, marital stress and partnership and family roles.
Methods: A cross-sectional study was conducted in outpatient department of psychiatry in Patan hospital, Patan Academy of Health Sciences, Nepal, from 26th August to 23rd September, 2018. Non-probability purposive sampling technique was used. Data was collected from spouses of psychiatric patients by face-to-face interview using Burden Assessment Schedule (BAS) to assess the caregiver burden of spouses of psychiatric patients.
Results: Out of 160 spouses interviewed, 94 (59%) had severe burden, 13 (9%) very severe, and 53 (34%) moderate. Burden was significantly associated with respondents’ relation to patient, educational status, income and diagnosis. The respondent’s age, occupation, duration of caring, and place of residence had no significant association with burden.
Conclusions: More than half of the spouses of psychiatric patients had severe care giver burden.
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Maffoni, Marina, Francesco Zanatta, Ilaria Setti, Ines Giorgi, Laura Velutti, and Anna Giardini. "SMiLE to Life: Meaning in life in healthcare professionals working in palliative care and rehabilitation medicine: SMiLE to Life: Meaning in life in healthcare professionals." La Medicina del Lavoro 112, no. 5 (October 28, 2021): 387–400. https://doi.org/10.23749/mdl.v112i5.11408.
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Background: In the healthcare landscape, various protective factors are identified, such as meaning in life (MiL), namely what gives sense to life events. However, little is known about this construct in the healthcare population. Objectives: To describe MiL among healthcare professionals employed in palliative care and neuro-rehabilitation medicine, unveiling possible differences related to medical specialty and socio-demographic characteristics. Methods: In this cross-sectional and multicentre study, palliative care and neuro-rehabilitation professionals were recruited. MiL was evaluated with the Schedule for Meaning in Life Evaluation (SMiLE), which provides a list of meaningful areas, as well as related overall indexes of satisfaction (IoS), weighting (IoW), weighted satisfaction (IoWS). Descriptive statistics, t-test, chi-square, linear and binary logistic regressions were performed. Results: Overall, 297healthcare professionals (palliative care=89, neuro-rehabilitation medicine=208, 47% of participants ≤ 40 years old) completed the evaluation. The sample was intra- and inter-groups heterogeneous, in particular concerning age and professional role. Conversely, no significant group differences emerged in MiL indexes comparisons, nor in the number of MiL listed areas. As for MiL areas, the category “family” increased the IoWS index, while terms related to “finances” contributed to decrease it. Comparing specialties, palliative care professionals were more likely to report areas like “partnership”, “social commitment”, and “satisfaction”. Nurses (n=116), nurse aides (n=47), and therapists (n=67) were more likely to mention health-related terms (e.g. health, physical wellbeing) than physicians and psychologists (n=65). Conclusion: This study highlighted MiL areas among professionals employed in palliative care and neurorehabilitation specialties, providing informative suggestions for tailored health prevention programs which should pay particular attention to social and family relationships, socio-economic status, and health.
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Heip, Tine, and Jochen Van den steen. "Person centred care: good practises in an ambulatory mental healthcare setting." International Journal of Integrated Care 23, S1 (December 28, 2023): 167. http://dx.doi.org/10.5334/ijic.icic23060.
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Introduction: BW IPSO is an organisation that started out as a variety of small organisations in the late 1970. By offering people with a mental illness the possibility to live in sheltered housing, with the guidance of mental healthcare workers, the organisation intended to improve the quality of life for this population. Over the years the organisation grew, merged and became BW IPSO. We now offer 118 places of supported living, going from group homes, to small appartements provided by the organisation, as well as guiding people in their own (social) home.
Description: Throughout the years, apart from housing and mental health, other life domains became more and more important. The mental healthcare worker became a case manager . In our multiprofessional team we follow the principles of FACT and SRH . If the resident wishes so, the case manager can also become a care coordinator. The principles of SRH comprise of three key aspects: presence-oriented, recovery-oriented and strength-oriented. So together, the resident and mental healthcare worker, will explore every life domain and investigate if the resident wishes to ameliorate or change something on a particular domain. Self-direction in the process is crucial. The life domains are physical health, mental health, administration, living and general daily life activities, religion and meaning, meaningful daily activities/work, social network, learning. The mental healthcare worker walks next to the resident throughout his/her path. A path that may lead to all different kinds of settings, f.e. specialized residential (mental) healthcare, community health centres, ambulatory psychologist/psychiatrist but also a workplace, regular welfare organisations, family, friends… When a resident decides to leave our organisation, (s)he can also choose to stay in ‘follow-up’. This means that the mental healthcare worker will still see this person but less frequent. It is a way to prevent fractions in the care continuum and gives the very important opportunity to shift to a more intensive form of care when needed. Providing continuity in care is essential in our line of work. To make this possible, BW IPSO invests maximum efforts to form partnerships with other organisations or initiatives. Building relations in health systems is vital. Innovations in such systems are affected by collaboration. In making these investments, we aim to give our residents the possibilities to try new things, make connections and improve overall quality of life.
Conclusion: Over time, many healthcare services have become fragmented, people who are less empowered miss out on proper care. This also applies for a majority of people who suffer of a (severe) mental illness. As an organisation we strive for continuity of care, collaborative partnerships, patient centred care with maximum ownership. We achieve this with a multidisciplinary team of experienced mental health workers in partnership with other organisations and the network of de person in need.
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NAKAGAWA, YOSHINORI, RINA YAMADA, and SEIGO NASU. "Characteristics of care-givers and care recipients influencing the impact of paid care services on family care-giver burdens." Ageing and Society 34, no. 8 (April 11, 2013): 1314–34. http://dx.doi.org/10.1017/s0144686x13000081.
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ABSTRACTIn the last few decades, a number of researchers have attempted to identify the effects of paid care services on alleviating the sense of burden of family care-givers, especially care-givers to people with dementia. However, few researchers have considered the possibility that paid care services alleviate the sense of burden only among those care-givers who possess specific characteristics. Without considering this point, the impact of paid care services would be averaged over an entire sample, and one might overlook the effects on these specific care-givers. With this background, this study examines the relationship between family care-givers' sense of burden and the amount of paid care services in Japan and identifies groups of care-givers among whom these services are significantly associated with a lesser sense of burden. The sense of burden of 339 family care-givers to older care recipients with dementia was measured using a modified version of the Caregiver Burden Inventory. In order to examine their association with the amount of paid care services received, logistic regression analysis was individually applied to groups of care-givers who exhibit specific characteristics. The results suggested that paid care services alleviated two out of five components of burden, provided the groups to which the analyses are applied are appropriately defined. In particular, two subsets of the entire sample, comprising young care-givers aged 49 or below, and including male care-givers, indicated that their overall sense of social and emotional burden were alleviated by the use of paid care services. The practical implications for policy makers are discussed.
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DE LA CUESTA-BENJUMEA, CARMEN, and BRENDA ROE. "The experience of family care-givers and migrant paid care-givers' relief of burden: a contrasted qualitative analysis." Ageing and Society 34, no. 7 (February 28, 2013): 1219–42. http://dx.doi.org/10.1017/s0144686x13000044.
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ABSTRACTOlder people are increasingly being cared for in the community across Europe. Dependent care in Spain largely remains a private issue involving family carers and migrant women from developing countries. Qualitative research on respite care has contributed to our understanding of respite as a subjective experience. Nonetheless, how care-givers relieve the burden of care is still not fully understood. Migrant care-givers are present in family life but their need for rest remains unseen. The aim of the study presented in this paper was to contrast family care-givers and migrant care-givers' strategies for relief from their caring role. Care-givers rest by thinking, doing and being but in a different manner from that of care-giving, that is: when they are a different person.To leave the life of care-givingis the general strategy that family care-givers use to rest from their care-giving selves whileturning to one's own worlddescribes the way migrant care-givers seek to relieve the burden of care. The comparative analysis shows that both strategies have in common the necessity to disconnect from the care-giving identity and that both migrant and family care-givers employ strategies that arefalse exits to a care-giving identity: they apparently relieve the burden of care. Respite goes beyond places, times and activities; as family care itself, it requires identity.
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Thrysøe Hansen, L., L. I. Nielsen, P. Gazerani, and L. Petrini. "“What about me?”: A qualitative explorative study on perspectives of spouses living with complex chronic pain patients." Scandinavian Journal of Pain 16, no. 1 (July 1, 2017): 173. http://dx.doi.org/10.1016/j.sjpain.2017.04.027.
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Abstract Aims Being a close relative of a chronic pain patient affects family life. No study has been carried out in Denmark to explore relatives’ life experiences and challenges while living with complex chronic pain patients. Hence, the aim of the study was to investigate the experiences of living with chronic pain patients from their spouses’ perspectives. In particular, this study focused on how spouses describe: (i) their everyday tasks and roles as a spouse; (ii) the types of changes and challenges that the pain condition brings into their partnership lives; (iii) a gender difference in these experiences; and (iv) the type of help they wish to receive from the healthcare system. Methods Two focus group interviews were conducted in Multidisciplinary Pain Center, Køge, including a total of 11 spouses (6 men). The spouses were contacted via their partners who were referred to public pain clinics. Focus group interview was chosen because is a suitable method for exploratory studies. The approach was phenomenological and transcriptions of interview records were used for analysis. Results Eight categories emerged from the data analysis: psychological burden, physical burden, the pain invisibility, roles, loss, worries concerning medicine, self-care, and needs concerning help and support. The differences between gender were vague. Spouses for whom the patient pain condition was a new situation (<1 year) appeared to worry more. Conclusions The study demonstrated that the spouses’ lives were dramatically affected. They had to support the family financially, do most of the household chores, be optimistic, a parent, and a pain care giver. The spouses experienced daily worries about several points including pain medicine by the patients. This study also highlighted an essential need for psychological support for coping with the changing life situation, the point that is currently neglected to a great extent.
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Fisher, Alinka, Michelle Bellon, Sharon Lawn, and Sheila Lennon. "Identifying Current Practices and Supports in Behaviour Management Following ABI in South Australian Community Settings: A Delphi Study." Brain Impairment 18, no. 2 (February 2, 2017): 211–25. http://dx.doi.org/10.1017/brimp.2016.36.
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Objectives: To consider the strategies currently used by family care givers to manage challenging behaviour in the community following ABI, and to identify what supports are available that support family care givers in addressing this issue.Research design: Delphi study.Methods: Service providers (n = 8) and family care givers (n = 3) completed a three-round Delphi process with the aim of reaching consensus (75% agreement) regarding research objectives. Round 1 consisted of an open-ended questionnaire in which items were identified; these items were then rated in Round 2 and 3 using a Likert scale. Statistical aggregation then allowed for quantitative analysis.Results: The findings suggest a number of behaviour management approaches are being used by family care givers, including basic antecedent strategies, agreeing with the person's demands, and medication. Consensus was reached that only two services in SA provide specific support to family care givers regarding behaviour management in the community: Families4Families Inc. (a peer support network) and Private Specialists (e.g., [neuro]psychologists and [neuro]psychiatrists).Conclusions: Findings emphasise the need for more specialised services specific to educating and supporting family care givers in the management of challenging behaviours following ABI. These services should be accessible, centralised, and easy for family care givers to navigate.
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Tinker, Cindy. "Vanderbilt-Ingram Cancer Center's & Gilda's Club Nashville: Songs from the Heart." OMEGA - Journal of Death and Dying 67, no. 1-2 (August 2013): 213–19. http://dx.doi.org/10.2190/om.67.1-2.z.
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Songs from the Heart is an annual palliative care and outreach/support project done in partnership with the Vanderbilt-Ingram Cancer Center Henry Joyce Cancer Clinic and Gilda's Club Nashville. It is a two-evening songwriters' workshop and concert that gives cancer survivors, family members and healthcare professionals the opportunity to tell their story about cancer through the art of music in a safe therapeutic environment. It is a unique project through the art of music helping others of all ages and from all walks of life find healing and hope; as well as an opportunity to give back to others. A professional singer/songwriter and a social worker co-facilitate the two-evening songwriters workshop. Two musicians perform songs the workshop songwriters have written at a community wide concert. Those who have participated in Songs from the Heart have communicated through the workshop evaluations that this experience has been life changing and a unique opportunity in being able to: explore and express their deep felt emotional feelings and thoughts; release their creative juices; ability to be alone with the group, yet feel included as a whole; express their journey through music; and benefit from being involved with others affected by cancer who have had similar difficulties. Others who have attended the concert or listened to the CD have expressed the significant impact these songs have had on their lives and their journey with cancer.
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Farberman, Harvey A., Stephen J. Finch, Beverly P. Horowitz, Abraham Lurie, Richard Morgan, and Jaimie Page. "A Survey of Family Care Giving to Elders in New York State: Findings and Implications." Care Management Journals 4, no. 3 (September 2003): 153–60. http://dx.doi.org/10.1891/cmaj.4.3.153.57524.
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It is estimated that there are 734,400 care giver households in New York State (9.6% [±] 0.8% of all households). Categorization of all care givers on a 5 level “intensity of care” measure reveals that, on average, care givers provide 22.1 hours of care per week. Highest intensity level 5 care givers (9.2% of all care givers), provide, on average, 88 hours of care per week and account for 36.3% of all care giving. The annualized market contribution of all care givers to the NYS health care system is estimated at between $7.5 and $11.2 billion dollars. The combination of care levels 4 and 5 contributed 70% of all care giving and account for about $5.2 billion in market value. Level 4 and 5 care givers are more likely than other care givers to report difficulties including the recent death of the care-receiver (p < 0.001), financial and employment setbacks (p < 0.001), emotional stress from worrying about the patient’s future condition, dealing with cognitively impaired, physically unmanageable, opinionated, virtually immobile patient’s, and insufficient support from family members (p < 0.05). Nevertheless, they also report such rewards as feeling grateful for improving the quality of the care receiver’s life (43.5%) as well as love (17.2%). Of the nearly 15% of NYS care givers who used adult day care services, all reported that these services met their needs fully or partly. However, of the 85% who did not use the service, 33.5% were negative about it. And while use of adult day care services increases with intensity of care level, there is resistance to adult day care particularly among level 3 care givers, with negative statements from 46.8% of them.
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Huang, Chiung-Yu. "Informal Female Caregivers of Older Adults with Dementia in Taiwan." Californian Journal of Health Promotion 2, no. 3 (September 1, 2004): 53–66. http://dx.doi.org/10.32398/cjhp.v2i3.880.
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Family care givers providing a major portion of care giving often experience stress related to the negative consequences for their health. Female care givers often more heavily involved care giving activities than males. Care givers’ gender studies have seldom conducted in Taiwan. The purpose of this study was to explore the relationship of demographic factors and coping on health of female care givers of older adults with dementia in Taiwan. In addition, whether coping mediated or moderated the relationship between stress and care giver’s health was also examined. Lazarus and Folkman’s Stress model guided this study. Using a secondary data analysis method, this study examined data collected from the family care givers of older adults with dementia (2002). One hundred and three female care givers were analyzed by applying Pearson correlation, simple and multiple regression analysis. The findings showed care givers who are younger, more income, and with helpers had better health. Care givers who had less income, without helpers, and caring for care recipients with more behavioral problems had more depressive symptoms. In addition, mediating effect of avoidance coping was supported in this study. The data analysis from this study will provide a basis for nurses to develop interventions that minimize the negative impacts on female care givers.
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Bagbe, Atinuke, Moses Ayokunle Akanbi, and Sabastine Dekaa Francis. "Disparities in Elderly care Supports during Post-Covid-19 era in Ondo State, Nigeria." International Journal of Advanced Multidisciplinary Research and Studies 4, no. 4 (August 13, 2024): 868–73. http://dx.doi.org/10.62225/2583049x.2024.4.4.3121.
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The paper examines disparities in elderly care supports during Post Covid¬-19 era in Ondo state Nigeria. A total sample size of 12 family care-givers belonging to age-group 26-53 and 43-68 years were engaged in the two Focus Group Discussions (FGDs). Focus Group Discussions were conducted at different locations of Irele and Okiti-pupa Local Government Areas (LGAs). The data collected from the study areas were analyzed with their contents. The key findings from FGDs are: That the dominated care supports (50.1 percent) received by 6 elderly people (50-80 years) at Irele during Post-Covid 19 era were: Foods, bathing, medical treatments, carrying and clothing whereas, in Okitipupa, the major care supports (33.3 percent) received by 6 elderly people (54-87 years) were: Food, fruits, money, drugs, bringing their grand-children to them, calling them and visiting them. Also, the family care-givers at Irele were majorly males (66.7 percent), while, in Okitipupa, the family care-givers were majorly females (66.7 percent). Finally, the family care-givers at Irele belong to age-group 43-68 years, whereas, in Okitipupa, the family care-givers belong to age-group 26-53 years. Thus, the study recommends that there is an urgent need by the family care givers to beef-up their care supports giving to elderly in Okitipupa Ondo state and Nigerian society at large during this post-Covid 19 era.
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Özen, Yelda. "Body work and later-life care in Turkey: a qualitative study of paid and unpaid carers of older people." Ageing and Society 40, no. 10 (July 30, 2019): 2106–27. http://dx.doi.org/10.1017/s0144686x19000989.
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AbstractThe ageing population of Turkey has brought later-life care into question. Family care remains most prevalent, but institutional, paid and professional care are increasing. Literature in Turkey has focused on the medical or social policy aspects but not care-givers’ experiences, nor how the care is performed. This study aims to illuminate care-givers’ experiences using qualitative methods, through in-depth interviews in Ankara with 19 care-givers providing home care for people aged 65 and over. Commonalities and differences were revealed among unpaid family care-givers, paid care-givers and professional care-givers. First, whether paid or unpaid, the bodily and emotional aspects of care work are intertwined. To cope with the ‘negativities’ involved in the work, nurses usually medicalised bodily tasks, unpaid care-givers cited traditional responsibilities and employed infantilisation, while paid care-givers mostly informalised the relationship, infantilised the person cared for and underlined their asexuality. Secondly, care work is gendered; silenced, invisible and ambivalent; related to intimacy with older bodies; and performed in the home space, which blurs the distinction between the private and public field for paid care. Finally, it involves emotional work regarding managing the bodily aspects and navigating the relationships surrounding the older person; and it is labour-intensive with an exploitative character.
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G, Umesh, Asokan T.V., Roselin V, and Sri Santhanakrishnan V. V. "Cross-Sectional Study on Stigma among Care Givers of Patients with Mental Illness in Kanchipuram District, Tamil Nadu." Journal of Evidence Based Medicine and Healthcare 8, no. 28 (July 12, 2021): 2484–88. http://dx.doi.org/10.18410/jebmh/2021/460.
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BACKGROUND Stigma experienced by caregivers of patients with mental illnesses remains unnoticed. This study was conducted to evaluate the stigma perceived by the care givers of patients with various mental illnesses and the factors associated with stigma. METHODS This cross-sectional study was conducted among the care givers of patients with mental illnesses who accompanied the patients to the outpatient department (OPD) of Psychiatry in Meenakshi Medical College Hospital and Research Institute, from January 2017 to March 2017. A total of hundred care givers were included in the study. All care givers aged between 18 - 50 years of age in both sexes were included in the study. Care givers of substance abuse cases were excluded from the study. A total of hundred care givers with fifty care givers of neurosis patients and another fifty care givers of psychosis were included in the study. Family interview schedule (FIS) stigma scale was used to assess the stigma perceived by care givers. Data was entered in Microsoft excel and data analysis was done using statistical package for social sciences (SPSS) version 17. RESULTS Mean perceived stigma score was 12.27 ± 9.43. High, low and zero stigma was noted among 44 %, 36 % and 20 % of care givers, respectively. Also, it was found that care givers of psychosis patients had more stigma than the care givers of neurosis patients (P = 0.0008). Statistically significant association was found between patient’s duration of illness (P = 0.003), patient’s diagnosis (P = 0.000) and care givers burden (P = 0.000) with severity of stigma perceived by the care givers. CONCLUSIONS Proportion of stigma prevailing among the care givers is high and it depicts only the cases which were reported to the health care center, whereas a larger proportion of cases remains not seeking the health care. An early intervention by conducting routine assessments of the mental status of caregivers is necessary. KEYWORDS Stigma, Care Givers, Mental Illnesses, Family Interview Schedule
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Dalmer, Nicole K. "‘Add info and stir’: an institutional ethnographic scoping review of family care-givers’ information work." Ageing and Society 40, no. 3 (October 5, 2018): 663–89. http://dx.doi.org/10.1017/s0144686x18001125.
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AbstractFamily care-givers are increasingly expected to find, understand and use information to meet the complex needs of older adults in their care. A significant number of studies, however, continue to report that care-givers’ information needs are unmet. Following Arksey and O'Malley's scoping review framework, I examined 72 articles for the range and extent of available research on the information work done by family care-givers of community-dwelling older adults living with dementia. To untangle the complex relationship between information and care, this scoping review maps out (a) the ways scholarly literature conceptualises the informational components of family care-givers’ work and (b) the degree to which scholarly research acknowledges these components as work. An institutional ethnography inflection enhanced the scoping review framework, enabling the privileging of lived experiences, questioning of assumptions of language used, attending to authors’ positioning and highlighting care-givers’ information work made invisible throughout the processes of academic research.
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COOK, ERICA J., GURCH RANDHAWA, ANDY GUPPY, CHLOE SHARP, GARRY BARTON, ANDREW BATEMAN, and JANE CRAWFORD-WHITE. "Exploring factors that impact the decision to use assistive telecare: perspectives of family care-givers of older people in the United Kingdom." Ageing and Society 38, no. 9 (May 2, 2017): 1912–32. http://dx.doi.org/10.1017/s0144686x1700037x.
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ABSTRACTIn the United Kingdom (UK), an ageing population met with the reduction of social care funding has led to reduced support for older people marked with an increased demand on family care-givers. Assistive telecare (AT) devices are viewed as an innovative and effective way to support older people. However, there is limited research which has explored adoption of AT from the perspectives of family care-givers. In-depth, semi-structured interviews were conducted with 14 family care-givers of patients who used the Assistive Telehealth and Telecare service in Cambridgeshire, UK. Family care-givers were either the spouse (N = 8) or child of the patient (N = 6). The patients' age ranged from 75 to 98, and either received a telecare standalone device or connected service. Framework analysis was used to analyse the transcripts. This study revealed that family care-givers play a crucial role in supporting the patient's decision to adopt and engage with AT devices. Knowledge and awareness, perceived responsibility, usefulness and usability, alongside functionality of the equipment, were influential factors in the decision-making process. AT devices were viewed positively, considered easy to use, useful and functional, with reassurance of the patient's safety being a core reason for adoption. Efforts to increase adoption and engagement should adapt recruitment strategies and service pathways to support both the patient and their care-giver.
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Perlick, Deborah, Robert R. Rosenheck, John F. Clarkin, Jo Anne Sirey, Patrick Raue, Susan Greenfield, and Elmer Struening. "Burden experienced by care-givers of persons with bipolar affective disorder." British Journal of Psychiatry 175, no. 1 (July 1999): 56–62. http://dx.doi.org/10.1192/bjp.175.1.56.
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BackgroundFamily members of patients with schizophrenia frequently report burdens associated with caring for their relatives.AimsWe evaluate the impact of illness beliefs on the burden reported by family care-givers of people with bipolar illness.MethodThe multivariate relationships between patient symptomatology and family illness beliefs and report of burden were examined at baseline among care-givers of 266 patients with Research Diagnostic Criteria-diagnosed bipolar illness who were subsequently followed for 15 months.ResultsAt baseline, 93% of care-givers reported moderate or greater distress in at least one burden domain. As a group, care-giver illness beliefs (illness awareness, perception of patient and family control) explained an additional 18–28% of variance in burden experienced beyond the effects of the patients clinical state and history.ConclusionsCare-givers of patients with bipolar illness report widespread burden that is influenced by beliefs about the illness.
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Wells, Y. D., A. F. Jorm, F. Jordan, and R. Lefroy. "Effects on Care-Givers of Special Day Care Programmes for Dementia Sufferers." Australian & New Zealand Journal of Psychiatry 24, no. 1 (March 1990): 82–90. http://dx.doi.org/10.3109/00048679009062889.
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Two groups of care-givers to dementia sufferers were interviewed to assess their psychological symptoms and the behaviour problems of the dementia sufferers. The first group were using special dementia day care while the second group were about to begin using it. The second group were re-interviewed three months later. Therefore two comparisons could be made; a with/without day care comparison and a before/after admission to day care comparison. Care-givers had a high level of psychological symptoms which were not significantly reduced by using day care. Full-time institutional care did reduce distress. Day centre clients continued to deteriorate as would be expected with a degenerative condition. While special dementia day care centres appear to play a useful role for many care-givers, they may provide too few hours relief per week to markedly reduce the care-givers' psychological symptoms. Family care-givers currently take the major role in caring for dementia sufferers in the community and the burden of care needs to be shared more equitably.
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TSUNAKA, MEGUMI, and JENNY C. C. CHUNG. "Care-givers’ perspectives of occupational engagement of persons with dementia." Ageing and Society 32, no. 4 (July 28, 2011): 543–60. http://dx.doi.org/10.1017/s0144686x11000365.
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ABSTRACTMeaningful engagement in activity is associated with the maintenance of health and wellbeing, but reduced activity participation is common among persons with dementia. Family care-givers play an important role in engaging their relatives with dementia in activities but little is known about their perception of occupational engagement. This study aimed to examine care-givers’ perception of occupational performance of their relatives from three aspects: person, occupation and environment. Adopting a qualitative methodology, semi-structured and in-depth interviews were conducted with 14 family care-givers. Care-givers were also asked to document the activity patterns of their relative, using the Activity Card Sort Hong Kong version (ACS-HK). The ACS-HK findings suggested that high-demand leisure activities were mostly retained (61%) while instrumental activities of daily living were the least retained (37%). Qualitative analysis revealed that care-givers’ perception of activity participation was intertwined with their motives and behaviours to get their relatives engaged in activities. Care-givers acknowledged occupational engagement as a means of maintaining wellness and used various strategies to encourage their relative's activity participation. Apathy and passivity, however, are difficult to deal with. Also, activity decisions appear to depend on the availability of support resources and a balance between safety concern and risk-taking. Clinical practitioners could assist care-givers by suggesting activity strategies and providing support resources for continued engagement of their relative in activities.
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Giraldo-Rodríguez, Liliana, Nathalia Guevara-Jaramillo, Marcela Agudelo-Botero, Dolores Mino-León, and Mariana López-Ortega. "Qualitative exploration of the experiences of informal care-givers for dependent older adults in Mexico City." Ageing and Society 39, no. 11 (July 17, 2018): 2377–96. http://dx.doi.org/10.1017/s0144686x18000478.
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AbstractPopulation ageing and increasing prevalence of chronic diseases and their consequences, changes in family structure and a decrease in the potential pool of family care, increase the need for formal long-term care for older adults in Mexico, and the need to understand the experiences of informal care-givers and how this impacts their social, family and personal conditions. This study investigates the experience of informal care-givers of dependent older adults using a cross-sectional qualitative study with an ethnographic focus. Thematic analysis was performed. The study comprised 48 semi-structured interviews with care-givers of dependent older adults who are beneficiaries of an in-home medical programme in Mexico City. The average age of care-givers was 54.7 years (standard deviation = 13.1, range = 24–86) and 75 per cent (36) were women. Results show care-giving experiences are diverse and complex, and profoundly affect the care-giver's life in terms of emotional burden, health deterioration and adverse life conditions due to economic deprivation. They also revealed key aspects such as the need to improve communication between care-givers and health-care personnel, the need for training about specific care needs and opportunity costs incurred. This information can serve as a basis for generating support strategies that may be integrated into the in-home programme. It is essential to promote actions that consider the ‘dependent older adult–informal care-giver’ dyad, and that aim to reduce the care-giving burden.
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GUBERMAN, NANCY, JEAN-PIERRE LAVOIE, and IGNACE OLAZABAL. "Baby-boomers and the ‘denaturalisation’ of care-giving in Quebec." Ageing and Society 31, no. 7 (August 5, 2011): 1141–58. http://dx.doi.org/10.1017/s0144686x11000419.
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ABSTRACTThe North American post-war generation, known as the baby-boomers, has challenged traditional family relations and the sexual division of labour. How do these challenges play out in the face of frail, ill or disabled family members? A study undertaken in Montreal, Quebec, with baby-boomer care-givers aimed to raise understanding of the realities of this group. We met with 40 care-givers for a one and a half-hour qualitative interview to discuss their identification with their social generation, their relationship to care-giving, their values regarding care-giving, and the reality of the care-giving they offer. The findings indicate that women, in particular, no longer identify themselves mainly in terms of family. For most, care-giving is not their only or even their dominant identity. They are actively trying to maintain multiple identities: worker, wife, mother, friend and social activist, alongside that of care-giver. They are also participating in the very North American process of individualisation, leading to what we call the ‘denaturalisation’ of care-giving. Notably, the women we met with call themselves ‘care-givers’ and not simply wives, daughters or mothers, denoting that the work of care-giving no longer falls within the realm of ‘normal’ family responsibilities. These care-givers thus set limits to their caring commitments and have high expectations as to services and public support, while still adhering to norms of family responsibility for care-giving.
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Bentwich, Miriam Ethel, Ya'arit Bokek-Cohen, and Nomy Dickman. "How figurative language may be related to formal care-givers’ person-centred approach toward their patients with dementia." Ageing and Society 39, no. 12 (July 17, 2018): 2653–70. http://dx.doi.org/10.1017/s0144686x18000685.
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AbstractPerson-centred care that respects a patient's personhood is the gold standard in dementia care, which is often difficult to achieve given the complexity of caring for people with dementia. This article delves into the narration style of formal care-givers from a variety of ethno-cultural backgrounds in search of linguistic cues that may be related to their emphasis on a person-centred approach to care. A qualitative study, using a discourse analysis of semi-structured interviews with 20 formal care-givers in an institutional setting, was employed. The care-givers fell into three groups: Arabs, immigrants from the former Soviet Union (IFSU) and Jews born in Israel (JBI). Our results show 20 figurative language expressions (FLEs) in the narratives of the JBI care-givers and 11 among the IFSU care-givers. In contrast, the Arab care-givers conveyed 48 FLEs. Many of the Arab care-givers’ FLEs were not associated with the ‘regular’ domains articulated by other care-givers (family, children, militaristic language) and were primarily individual-focused, emphasising the personhood of the patient. These findings, together with relevant theoretical literature, suggest that the extensive use of figurative language by Arab care-givers may be a possible tool assisting these care-givers to employ a person-centred approach, manifested in their stress on the personhood of the patient. Such tools may be useful for better achieving person-centred care for these patients.
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NAGANATHAN, GAYATHRI, KERRY KULUSKI, ASHLINDER GILL, LIISA JAAKKIMAINEN, ROSS UPSHUR, and WALTER P. WODCHIS. "Perceived value of support for older adults coping with multi-morbidity: patient, informal care-giver and family physician perspectives." Ageing and Society 36, no. 9 (August 3, 2015): 1891–914. http://dx.doi.org/10.1017/s0144686x15000768.
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ABSTRACTThis study investigated the perceived value of informal and formal supports for older adults with multi-morbidity from the perspectives of patients, care-givers and family physicians. Semi-structured interviews were conducted with 27 patients, their informal care-givers and their family physicians in an urban academic family health team in Ontario. Analysis was conducted using a General Inductive Approach to facilitate identification of main themes and build a framework of perceived value of supports. Participant views converged on supports that facilitate patient independence and ease care-giver burden. However, important differences in participant perceptions arose regarding these priorities. Physicians and care-givers valued supports that facilitate health and safety while patients prioritised supports that enable self-efficacy and independence. While formal supports which eased care-giver burden were viewed positively by all members of the triad, many patients also rejected formal supports, citing that informal support from their care-giver was available. Such conflicts between patient, care-giver and physician-perceived value of supports may have important implications for consumer and care-giver willingness to accept formal supports when supports are available. These findings contribute to the broader literature on community-based care by incorporating the perspectives of patients, informal care-givers and family physicians to understand better the barriers and facilitators of uptake of supportive services that contribute to successful ageing at home.
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GROOTEGOED, ELLEN, TRUDIE KNIJN, and BARBARA DA ROIT. "Relatives as paid care-givers: how family carers experience payments for care." Ageing and Society 30, no. 3 (December 14, 2009): 467–89. http://dx.doi.org/10.1017/s0144686x09990456.
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ABSTRACTPayments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.
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Sun, Qian, Nan Lu, Nan Jiang, and Vivian W. Q. Lou. "Intention to use respite services among informal care-givers of frail older adults in China: the role of care needs change." Ageing and Society 41, no. 1 (May 22, 2020): 101–20. http://dx.doi.org/10.1017/s0144686x20000628.
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AbstractPopulation ageing in China calls for evidence-based solutions, especially in terms of fulfilling long-term care needs among frail older adults. Respite services are identified as effective resources for alleviating care-giver burden and promoting the wellbeing of both older adults and their family care-givers. However, respite care is often under-used in China. This research aimed to examine factors associated with intention to use respite services among informal care-givers in Shanghai, mainland China. This study was part of the Longitudinal Study on Family Caregivers for Frail Older Adults in Shanghai. Pairs of older adults and their care-givers (N = 583) who successfully completed the 2013 and 2016 waves were included in the data analysis. Two logistic regression models were conducted, one with time-invariant and one with time-variant factors. The model with time-variant factors had greater explanatory power than the original Andersen model with time-invariant factors influencing intention to use respite services among care-givers. Care-givers had higher odds of intending to use respite services if they had higher care-giving burden, were caring elderly people who experienced care-giver transitions, or were caring for elderly people with increased function of ambulation or decreased function of feeding. The findings imply that change in functional health was a significant determinant of intention to use respite care. Relevant policy and service implications will be discussed.
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Angelin Lavanya and Vishnu Priya. "Assess the attitude and perception regarding mental illness among the care givers of mentally ill patients." International Journal of Research in Pharmaceutical Sciences 10, no. 4 (October 16, 2019): 3078–82. http://dx.doi.org/10.26452/ijrps.v10i4.1597.
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Mental health is defined as a state of well being in which the individual realizes his or her own abilities, can cope with the normal stress of the life, can work productively and fruitfully and is able to make a contribution towards his or her own community. Mental illness refers to a condition of emotional and mental impairment that disturbs a person’s thinking, mood and ability that relate to others and daily functioning. The aim of the study was to assess the attitude and perception regarding mental illness among the care givers at saveetha medical college and hospital. A quantitative research approach was adopted with convenient sampling technique to select 100 care givers of mentally ill patients at saveetha medical college and hospital. Data was collected by using self - structured questionnaire technique. The data was organized and analyzed in term of descriptive statistics. Association between the level of attitude and the selected demographic variables were analyzed in which there is a significant association between the demographic variables such as education, residence and the type of care givers regarding mental illness. In related to on assessing the association between the level of perception and the selected demographic variables were analyzed in which there is a significant association between the gender, education, occupation, type of family and the type of care givers. This study has demonstrated that the care givers has a decreased level of attitude in relation to education, residence, type of care givers and decreased level of perception in related to gender, occupation, education, type of family and the type of care givers. The study concluded that the care givers have a low level of attitude and perception in related to mental illness.
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Ahsan, Rakhshan, Naheed Anwar, Afifa Tanveer, and Hafiza Khushbakhat. "Adaptive Clothing as a Fundamental Castigatory Requirement of Old Patient with Alzheimer." Review of Education, Administration & LAW 1, no. 1 (December 31, 2018): 13–22. http://dx.doi.org/10.47067/real.v1i1.2.
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Families have vital role in the medical care of Alzheimer's which is most common among the old age people. It I is kind of dementia that fosters problems in the thinking, memory and the incapability to activate modest implementations, or orient clothing to the human body. In such cases family members have vital role for the care of patients. Dressing of Alzheimer`s patient is main tension for care contributors therefore this research discourse the dressing difficulties to Alzheimer`s patient encountered by care givers. A qualitative research method found to explore care givers perception about dressing issues that arise when their family member loss the capacity to dress independently. In-depth-interview was used as a data collection instrument from the care givers of the patients. Doctors were also interviewed to acquire the understanding about Alzheimer disease. In order to improve the quality of care givers survives and sustain their ability to sustenance and care for the enduring adaptive dress is very valuable as it provides ease to them while dressing. Therefore after examination of interviews researcher identified dressing difficulties and believers clothing adaptations that provide accessibility to care giver.
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Kahana, Jeffrey, Lawrence Force, and Roger Monthie. "Data From a Mindfulness Program for Family Caregivers to Persons With DD, and Application for Older Individuals." Innovation in Aging 4, Supplement_1 (December 1, 2020): 508. http://dx.doi.org/10.1093/geroni/igaa057.1640.
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Abstract Parents who care for their children (young and adult) with developmental disabilities face many stressors and challenges. This paper reports on an intervention using mindfulness and cognitive reframing to improve psychological well-being of care-givers. We report on results based on 92 care-givers who participated in the program. An innovative component was utilizing parent care-givers along with trained peer facilitators. The program was conducted over six weeks, with three in person sessions, and three at home web-based sessions. The content emphasized mindfulness practice (meditation) along with cognitive reframing (aimed at boosting optimism) to address the stress family-caregivers experience in managing worry and the perceived lack of control that accompanies caring for children (young and adult) with developmental disabilities. Post-test data revealed increased awareness of stress coupled with greater competence in stress management. Given the life-long demands for care-giving of parents to the developmentally disabled, normative stressors of aging interact with stressors posed by care-giving demands. Implications for improving well-being of older parental care-givers will be discussed around the topics of (1) optimism and hope; (2) support of healthy behaviors; and (3) development of a mindset of gratitude.
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Kour, Perkash. "Effectiveness of Psychoeducation Programme on Knowledge of Schizophrenia among Care Givers of the Patients with Schizophrenia, Admitted in Selected Hospital of SGR." Trends in Nursing Administration & Education 09, no. 02 (December 30, 2020): 1–6. http://dx.doi.org/10.24321/2348.2141.202002.
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Background: Schizophrenia is one of the commonly occurring disorders, often causing a high degree of disability to the patients, as well as being stressful to the caregivers. Many people are still unaware that there are effective treatments for schizophrenia. A combination of regular medication, family education and support reduce the relapse rate from 50% to 60%. Psychoeducation interventions provide information to patients and their families as well as provide the tools necessary to cope with the disorder. Aim: The study aimed to find the efficacy of psycho-education on knowledge regarding schizophrenia among care givers of patients by conducting pretest before intervention and posttest after intervention. Methods: Pre-experimental one group pre-test and posttest design was used for this study. The sample of 50 care givers were selected using purposive sampling technique consists of care givers of schizophrenia patients admitted in psychiatric ward. The study was conducted at the selected state govt. hospital IMHANS Srinagar J&K India. Data was collected using structured knowledge questionnaire. The researcher first explained the aim of the evaluation and invited family members to take part. After consenting to participate in the study, family members were assessed in group of twenty five. Result: mean knowledge score at pre-test was 8.94+5.101 and 27.66+1.814 at post test. There was significant difference in knowledge scores of pre-test and post-test p<0.001).There was no significant association between knowledge score and demographic variables. Conclusion: There was significant gain in knowledge score of care givers. The study concluded that psycho education was effective in increasing the knowledge of care givers of schizophrenia patients. Psycho education of the family members is the key to understand about the illness and provide better care to the patient.
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Wells, Yvonne, and A. F. Jorm. "Evaluation of a Special Nursing Home Unit for Dementia Sufferers: A Randomised Controlled Comparison with Community Care." Australian & New Zealand Journal of Psychiatry 21, no. 4 (December 1987): 524–31. http://dx.doi.org/10.3109/00048678709158920.
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Applicants for a newly opened special unit for dementia sufferers were randomly allocated to full-time care in the unit or placed on a waiting list and offered periodic respite care in the meantime. All applicants were living in the community at the time of random assignment. Both groups were followed up for three months to assess the effects on the dementia sufferers and on their family care-givers. Care-givers initially had a high level of psychological symptoms, which was greatly reduced after admission of the dementia sufferer to full-time care. By contrast, the care-givers of the community care group of sufferers continued to have a high level of symptoms. Dementia sufferers continued to deteriorate with both forms of care, with little difference between the two groups. Admission of dementia sufferers to full-time care in a special unit appears to be of great benefit to the psychological health of their care-givers and has no adverse effects on the dementia sufferers themselves.
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Sharma, Mohit, Priyanka Devgun, and Ashwin Sharma. "Burden of care on family caregivers of patients of gastrointestinal cancers in a tertiary care institute." Indian Journal of Community Health 35, no. 3 (September 30, 2023): 359–63. http://dx.doi.org/10.47203/ijch.2023.v35i03.020.
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Background: Gastrointestinal tract cancers are one of the leading causes of morbidity and mortality globally and cause family members to become primary caregivers. Method: The observational cross- sectional study was conducted using a pretested questionnaire and BSFC short form scale on 156 primary family care givers of patients suffering from and seeking treatment for cancer of the gastrointestinal tract from June 2021 to May 2022 in a tertiary care institute. Result: Mean age of family caregiver was 48.6 (4.7) years and the majority were female 111 (71.1 %). Average duration of primary care given was 2.62(1.24) years. 94 (60.2%) family care givers provided > 8hr duration of care. 103 (66%) of the family caregivers suffered from moderate burden, 39 (25%) from heavy burden and only 14 (8.97%) family caregivers considered burden as mild. Significant association was found between >8 hours of caregiving, caregiver having a comorbid illness, treatment outcome and financial distress borne during the course of treatment and burden of caregiving. Conclusion: Burden of caregiving in the family caregivers of cases of gastrointestinal cancer has the capacity to create ripples in the primary life domains of the caregiver and needs to be looked into.
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SMITH-CARRIER, TRACY, THUY-NGA PHAM, SABRINA AKHTAR, GAYLE SEDDON, MARK NOWACZYNSKI, and SAMIR K. SINHA. "‘It’s not just the word care, it’s the meaning of the word…(they) actually care': caregivers’ perceptions of home-based primary care in Toronto, Ontario." Ageing and Society 38, no. 10 (May 17, 2017): 2019–40. http://dx.doi.org/10.1017/s0144686x1700040x.
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ABSTRACTThe frail and homebound older adult populations currently experience difficulties accessing primary care in the medical office. Given this fundamental access to care problem, and the questionable care quality that arises when navigating a labyrinthine health-care system, these populations have typically been subject to inadequate primary care. To meet their needs better, growing research stresses the importance of providing comprehensive home-based primary care (HBPC), delivered by an inter-professional team of health-care providers. Family care-givers typically provide the majority of care within the home, yet their perceptions of HBPC remain under-researched. The purpose of this study was to explore unpaid care-givers' perceptions of and experiences with HBPC programmes in Toronto, Canada. We conducted qualitative inductive content analysis, using analytic procedures informed by grounded theory, to discover a number of themes regarding unpaid care-givers' understandings of HBPC. Findings suggest that, compared to the standard office-based care model, HBPC may better support unpaid care-givers, providing them assistance with system navigation and offering them the peace of mind that they are not alone, but have someone to call should the need arise. The implications of this research suggest that HBPC could be a model to help mitigate the discontinuities in care that patients with comorbid chronic conditions and their attendant unpaid care-givers experience when accessing fragmented health, home and social care systems.
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Mohammad, Aysha Saghir, Saba Yaqoob, Atia Ur Rehman, Muhammad Azzam Khan, Jamshaid Haider Malik, Sehrish Bari, Ruhamah Yousaf, Muhammad Ahmed, and Arslan Saleem Chugtai. "Anxiety of Caregivers in Telerehabilitation Sessions During Covid 19." Pakistan Journal of Medical and Health Sciences 16, no. 7 (July 30, 2022): 438–40. http://dx.doi.org/10.53350/pjmhs22167438.
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Introduction: Pandemics affect people in a defeatist manner and become stressful for people with relatives which need specific forms of care and attention. The study was conducted to find out if anxiety prevails among caretakers during the Covid-19 Pandemic as according to the literature review caregivers experience burden and fears related to their care-recipients and telerehabilitation. Material and Methods: The study used cross sectional survey and quantitative research.50 care-givers participated in the research where they filled online questionnaires inspired and derived from care-giver burden scale and beck anxiety inventory. Anxiety was clearly evident as most of the care-givers agreed to have feelings of nervousness 19 (38%), feeling anxious 18 (36%), feeling distressed 22 (44%), complaints about emotional burden 23 (43%) and 23 (46%) constant immersion in duties towards care-recipients. Results: SPSS tables depict the analyzed results and their interpretation. The results show 36%of the care-givers agreed that they face anxiety when a situation gets out of control, 44% were distressed about not getting enough help from healthcare team and other family and friends, 55% are apprehensive about their present condition and 46% are emotionally challenged and constantly immersed in duties owing to their family members. Conclusions: Anxiety and depression as a result of caregiving burden is common among care-givers and needs to be addressed as soon as possible. This makes it essential that health professionals pay heed and attention to develop interventions for care-givers and provide them with pertinent knowledge. Keywords: anxiety, care burden, caregiver, covid 19, pandemic, telerehabilitation
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Quah, Stella R. "Partnership." International Journal of Health Services 47, no. 3 (November 19, 2015): 532–49. http://dx.doi.org/10.1177/0020731415614512.
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This study discusses the main barriers to partnership between family and health services in the context of schizophrenia and de-institutionalization (reduction of the length of hospitalization whenever possible and returning the patient to the community) addressed to deal with the increasing costs and demand for health care services. Thus, in de-institutionalization the burden of care is not resolved but shared with the family, under the assumption that the patient has someone—a family caregiver—who can take up the responsibility of care at home. Despite the high burden of care faced by the family caregiver in mental illness, the necessary systematic partnership between the medical team and the family caregiver is missing. Subjects were 47 family caregivers of persons living with schizophrenia. Data were collected using in-depth interviews, structured questionnaires and attitudinal scales. Data analysis included factor analysis and odds ratios. Two types of barriers to partnership are identified in the literature: health services barriers and barriers attributed to the family. The findings confirm the health services barriers but reject the assumed family barriers.
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Meegoda, MKD Lalitha, Sharaine Fernando, S. Sivayogan, and NOS Atulomah. "EXPLORINGTHE PREPAREDNESS OF FAMILY CARE GIVERS TO PROVIDE CANCER PALLIATIVE CARE." International Journal of Research -GRANTHAALAYAH 7, no. 6 (June 30, 2019): 18–26. http://dx.doi.org/10.29121/granthaalayah.v7.i6.2019.734.
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Background: Palliative care for pain relief and management of other distressing symptoms of cancer patients specially through non-pharmacological approach by family care givers (FCGs) improves the quality of life of patients. Preparedness of FCGs for this role needs to be explored.
Methodology: Descriptive qualitative design was adopted to explore the FCGs readiness on providing cancer palliative care for their cancer survivors. Focus Group Discussions were conducted in public sector, private sector and cancer care institutions which are managed by the Cancer Society in the Colombo area until data saturation was achieved between September 2011 to January 2012.
Results: Most of the FCGs were females and the mean (SD) age was 39(±10) years. The average educational level of the FCGs/domiciliary care providers was at primary level. Thematic analysis of their data on the readiness to provide cancer PC emerged four key themes; readiness in providing care, need relaxation, need psychosocial support and inadequate knowledge.
Conclusion: FCGs had the readiness to provide care for their patients amidst challenges they face during the time of care giving. Family care givers were of the view that having knowledge and experience as an FCG will facilitate in continuing to care effectively.
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AYALON, LIAT. "Family and family-like interactions in households with round-the-clock paid foreign carers in Israel." Ageing and Society 29, no. 5 (May 28, 2009): 671–86. http://dx.doi.org/10.1017/s0144686x09008393.
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ABSTRACTThis paper reports a study of family and family-like interactions and transfers, or exchanges of goods and resources, between paid, round-the-clock, Filipino home carers and those they care for in a sample of households in Israel. Qualitative interviews about their experiences and attitudes concerning the care role were conducted with 22 family members and 29 Filipino home-care workers. A thematic analysis of the interview data identified three major themes: the structure and internal dynamics of the adapted family or family-like system of care; the role of family members; and the role of Filipino home-care workers in the new system of care. Sons and daughters tended to appropriate the care-management positions and to reduce their social and emotional support for the care recipient. In contrast, spouse care-givers continued to provide some of the personal and emotional care even when a Filipino home-care worker was employed. Filipino home-care workers were made responsible for daily care and domestic routines and provided emotional and social care. It was found that family members do not relinquish their role as care-givers when round-the-clock foreign carers are on hand, but the nature of their role changes. The results suggest that foreign home-care workers' job description needs to be redefined to acknowledge the substantial social and emotional care that they provide.
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Cebeci, Fatma, Hicran Aydın Bektaş, Gülten Sucu Dağ, and Ebru Karazeybek. "Families as hospital care givers: A pilot in Turkey." Journal of Nursing Education and Practice 7, no. 6 (January 11, 2017): 27. http://dx.doi.org/10.5430/jnep.v7n6p27.
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Objective: It is a common tradition that families as caregivers have been in the hospital in order to support patients. This study describes the services performed by family caregivers in surgical and medical wards of hospital.Methods: This is a descriptive study. The study includes 442 family caregivers selected by the simple random sampling, who agreed to participate in, and who have been providing care for their relatives at least 48 hours in a university hospital. Data were collected through a questionnaire conducted during face-to-face interviews and were analyzed by descriptive statistics methods.Results: It has been found out that family caregivers met almost all needs of hospitalized patients with their own will. The results show that family caregivers met the care needs of their hospitalized relatives mainly upon their own and patients’ will (relatively 51%, 22.9%). It has also been observed that some of these requirements were met upon doctors’ and nurses’ demands.Conclusions: It is important to know the requirements met by family caregivers at the hospital in terms of defining boundaries of care which can be provided by family caregivers and evaluating its results. Our findings could influence future plans of nursing managers, policy makers and/or health authorities.
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Flynn, Rachel, and Helen Mulcahy. "Early-onset dementia: the impact on family care-givers." British Journal of Community Nursing 18, no. 12 (December 2013): 598–606. http://dx.doi.org/10.12968/bjcn.2013.18.12.598.
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Barber, Chris. "Family care-givers: the role of the healthcare assistant." British Journal of Healthcare Assistants 6, no. 9 (September 2012): 428–31. http://dx.doi.org/10.12968/bjha.2012.6.9.428.
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Thomas, Bino, and Marie M. Nympha. "Care Giver’s Needs in the Process of Cancer Recovery." Artha - Journal of Social Sciences 11, no. 1 (January 13, 2012): 67. http://dx.doi.org/10.12724/ajss.20.5.
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Goals of work: The aim of the study is to explore the psychosocial needs of persons taking care of family members suffering from cancer.
Materials & Methods: An Sixty care-givers participated in the cross sectional study. An interview schedule was used. The care recipients had heterogeneous cancer diagnosis and were hospitalized for at least a month.
Main Result: Their Financial needs were the highest followed by informational needs, family needs, personal needs, social needs, psychological needs and spiritual needs. It is in contrast to their studies from the west where psychological need was supreme.
Conclusions: The findings pave way for the development of comprehensive psychosocial care programs for the care-givers.
Keywords: Cancer-oncology, caregiver
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LITWIN, HOWARD, and CLAUDINE ATTIAS-DONFUT. "The inter-relationship between formal and informal care: a study in France and Israel." Ageing and Society 29, no. 1 (December 10, 2008): 71–91. http://dx.doi.org/10.1017/s0144686x08007666.
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ABSTRACTThis study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.
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Hlebec, Valentina. "Family Care Experience in a Decentralized Social Home Care Context." Lex localis - Journal of Local Self-Government 15, no. 3 (June 28, 2017): 495–511. http://dx.doi.org/10.4335/15.3.495-511(2017).
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This survey analyses the scope and intensity of informal care for the elderly residing in their homes in Slovenia and their determinants: the residing municipality of the care recipient, geographical distance between the informal carer and the care recipient, to the care recipients’ and the care givers’ individual characteristics. With the increasing private out-of-pocket financial contribution, which is determined by municipality, the scope and intensity of informal care shows a significant increase as shown by regression analysis. Inter-municipal cooperation and the introduction of gradual private financial contribution are proposed as tools for improving accessibility of social home care in Slovenia.
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SUZUKI, WATARU, SEIRITSU OGURA, and NOBUYUKI IZUMIDA. "BURDEN OF FAMILY CARE-GIVERS AND THE RATIONING IN THE LONG-TERM CARE INSURANCE BENEFITS OF JAPAN." Singapore Economic Review 53, no. 01 (April 2008): 121–44. http://dx.doi.org/10.1142/s0217590808002872.
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Long-Term Care Insurance (LTCI), introduced in Japan in 2000, is rapidly turning into a system of rationed benefits due to financial difficulty. Based on our survey of 2,530 family care-givers and the Zarit Care-Giver Burden Index, we have examined how LTCI is affecting their subjective burden. We have found that, as Kishida and Tanigaki (2004) had shown, (i) insufficient provision of short-term stays, day services and home-helper services, as well as (ii) disruptive or antisocial behaviors of the elderly, increase the care-giver's burden. We then argue that (iii) these results establish the positive contribution of LTCI in the well-being of family care-givers, (iv) short-term stay is the most efficient service, followed by home-helper service, and day service is the least efficient, and we show that (v) J-ZBIC-8 works well enough for many practical purposes.
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Saal, Howard M. "Neonatal Intensive Care as a Locus for Ethical Decisions." Cleft Palate-Craniofacial Journal 32, no. 6 (November 1995): 500–503. http://dx.doi.org/10.1597/1545-1569_1995_032_0500_nicaal_2.3.co_2.
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Children born with congenital anomalies are usually cared for in the neonatal intensive care unit (NICU). Although most of these children will have conditons amenable to surgical correction, many will have serious underlying disorders that will alter the approach to management of the secondary birth defects and the child. The decision as to whether to treat or withhold treatment from a child with congenital anomalies lies with the parents or legal guardians with guidance and counseling from the health and medical care givers. The ability to make a rational decision about whether or not to offer treatment depends upon the ability to make a correct diagnosis, understand the implications of the diagnosis, and to be able to communicate this information to the patient's family. This responsibility, in many centers, falls upon the shoulders of the clinical geneticist. There is a critical need for clear communication among care givers who comprise the management team and between the management team and the family. Major obstacles that can arise include lack of communication among care givers and the reluctance of family members to make decisions regarding withholding treatment despite a diagnosis of a condition with a grave prognosis. As our technology improves, our ability to save the lives of the smallest and sickest infants will increase; the greatest dilemma, however, which we will face will not be whether we can treat, but rather, whether we should treat certain conditions and how these decisions will be made.
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Mathew, Suja Chungathil, and Thereza Mathias. "Effectiveness of family based educational program on burden of care and stress among family caregivers of young adults with chronic mental disorders: a pilot study report." International Journal Of Community Medicine And Public Health 12, no. 2 (January 31, 2025): 845–56. https://doi.org/10.18203/2394-6040.ijcmph20250318.
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Background: Living with and caring for a young adult with mental disorders is often challenging and induce enormous amount of burden and stress to Family Care Givers. This area has not received adequate attention in India. Methods: Caregiver’s Stress scale (KCSS) were used to assess the burden and stress. The family care givers in the intervention group were provided with family-based intervention on two alternative days and the standard care group received only routine care. A post test was conducted on 30th, 90th and 180 days. Independent t -test was used to establish the effectiveness of family-based intervention on burden and stress. X 2 test and Fisher’s test was computed to find the association of burden and stress with selected demographic variables. Results: Family based educational program was found to be effective in reducing the burden of care and stress among the FCGs (p= <0.001). The study revealed statistically significant association between the age and gender of caregiver to burden and financial support of the caregivers to stress Conclusions: The findings of the study suggest family based educational program on home care of young adults with chronic mental disorders was found to be effective in reducing the burden of care and stress among the family caregivers.
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Jain, Rajkamal. "Effectiveness of Self-Instructional Module Among Primary Care Givers." Nursing Journal of India CVIII, no. 06 (2017): 278–82. http://dx.doi.org/10.48029/nji.2017.cviii604.
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Stroke is common clinical problem that occurs without a warning. The major responsibility for providing adequate care to patient has fallen on primary caregivers or family members. The nurse has to provide comprehensive care to stroke survivors as well as to care givers. The present study sought to assess the knowledge of primary care givers regarding care of stroke patients before and after administration of self-instructional module (SIM). It was a pre-experimental and evaluative approach covering 30 primary care givers from KC General Hospital, Bangalore (Karnataka). Purposive sample technique was used to select the samples. The tool used for data collection was structured questionnaire schedule. A self-instructional module was provided for the sample to improve their knowledge. The overall mean percentage of post-knowledge score of respondents (63.08%) was apparently higher than the overall mean of pie test knowledge score (37.50%) thereby revealing that the self-instructional module on care of stroke patients was effective.
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Zachariah, Finly, Stefanie Mooney, Chandana Banerjee, Sorin Buga, and Bonnie Freeman. "Final Journey: A reference booklet for families of dying patients." Journal of Clinical Oncology 35, no. 5_suppl (February 10, 2017): 189. http://dx.doi.org/10.1200/jco.2017.35.5_suppl.189.
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189 Background: Family members will carry the memory of the death of their loved-one with them for the rest of their lives. If they perceive their loved-one suffered as they died there is a risk they will develop Post Traumatic Stress Disorder or other psychological dysfunctions. It is crucial the family be educated and holistically supported during the dying process. Health care providers and care givers require information that will enable them to act as patient advocates and work effectively with families toward the common goal of a peaceful death. Resources that provide basic explanations, suggestions for care, open communication, and prepare families and care givers about the dying process are essential. Methods: Final Journey is a patient and family centric booklet developed based on the CARES tool, which is a guide to help medical teams better care for the dying and their family. CARES stands for comfort, airway, restlessness and delirium, emotional and spiritual support, and self-care. Final Journey details in each section what patients and families may experience, helps families understand what constitutes suffering, and suggests what families can do to help their loved ones. Results: There is a need for education tools that are easily understood, pertinent, and made accessible to help improve the dying experience for all parties involved. Final Journey helps assure families are informed and more emotionally prepared. Furthermore, the booklet expands the available resources available to medical providers, allowing them to more effectively address the challenges of caring for the dying. Final Journey will be available as a free download from the Department of Supportive Care Medicine website. Conclusions: We anticipate utilization of the Final Journey booklet will improve knowledge and understanding for health care providers, care givers, and families regarding a normal dying process and how to distinguish this from suffering, provide them suggestions on how to offer support and comfort during the dying process, promote communication between health care providers, care givers, and families of dying patients and supply resources and information on the importance of self-care when working with a dying patient.
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Calder, Judith. "Occupational Health and Safety Issues for Child-Care Providers." Pediatrics 94, no. 6 (December 1, 1994): 1072–74. http://dx.doi.org/10.1542/peds.94.6.1072.
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This paper reviews the occupational health and safety issues for child-care providers. Specifically, it answers the following questions: Who are the care givers? What are their risks of occupational illness and injury? What are the risks to children from care givers? Who pays to reduce the risk? What future research is needed to identify potential risks to and strategies for this work force and their clients? WHO ARE THE CARE GIVERS? Out-of-home child care is provided in two ways: in child-care centers (larger facilities designed especially for the care of children) and in family day-care homes. Persons who obtain day care know the care givers personally. They are the people who make it possible for parents to be dependable, productive, and worry-free employees or students. More importantly, they are the ones entrusted to care for children for as much as 50 hours a week. Parents expect their children to be safe, treated with respect, and nurtured in ways that are specific, familiar, and compatible with the family's child-rearing beliefs. Parents also expect care givers to be adroit in addressing their concerns as well as their children's. Despite all of this personal interaction, few parents are aware of the characteristics of the child-care work force, the conditions under which they work, and their impact on quality child-care services. The Child-Care Employee Project (CCEP), a national non-profit resource organization devoted to addressing adult needs associated with child care, developed a profile of child-care workers by compiling and examining data on center-based child care as part of the National Child-care Staffing Study (NCCSS).1
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Young, Lynne, Harold Siden, and Stephen Tredwell. "Post-surgical telehealth support for children and family care-givers." Journal of Telemedicine and Telecare 13, no. 1 (January 2007): 15–19. http://dx.doi.org/10.1258/135763307779701149.
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