Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study

Ali, Lilas; Ahlström, Britt Hedman; Krevers, Barbro; Sjöström, Nils; Skärsäter, Ingela

doi:10.3109/01612840.2013.791736

Cited by 24 publications

(43 citation statements)

References 27 publications

(44 reference statements)

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“…In the present study, the Internet was mainly used to search for information, but to some extent also to feel social belonging and support. The Internet's role in helping to confirm and maintain relationships through social media and private groups has also been found in other studies (Ali, Ahlström, Krevers, Sjöström, & Skärsäter, ; Foster, ; Ventura, Koinberg, Sawatzky, Karlsson, & Öhlén, ). The ability to look for information in privacy, when one has the time, and as questions arise also seems important (Helsper & Reisdorf, ; Xiao, Sharman, Rao, & Upadhyaya, ; Yli‐Uotila, Rantanen, & Suominen, ).…”

Section: Interpretation and Discussionsupporting

confidence: 72%

Need of support in people with chronic obstructive pulmonary disease

Ali

Fors

Ekman

2018

Journal of Clinical Nursing

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Aim and objectiveThe aim of this study was to describe peoples’ experiences and expectations of support when living with chronic obstructive pulmonary disease.MethodWe conducted and analysed face‐to‐face or telephone interviews with 17 individuals (aged 44–77 years) diagnosed with chronic obstructive pulmonary disease. The interviewer asked open‐ended questions aimed at encouraging further narration, and we analysed the participants’ narratives using a phenomenological hermeneutical approach. This report adheres to the COREQ guidelines.ResultsThe overall theme suggests that people with chronic obstructive pulmonary disease describe support as shared knowledge and experiences, based on the following subthemes; similar experiences, the need of genuine professional knowledge, self‐reliance versus self‐blame, and the Internet – feeling safe but uncertain.ConclusionsPeople with chronic obstructive pulmonary disease find their strength through shared knowledge and dialogical support with others who have similar experiences and with professionals. A person‐centred eHealth approach may be suitable for this group as it offers both collaboration and support.Relevance to clinical practiceThere is a demand for access to genuine professional knowledge as additional support to patients’ own capabilities and needs. Patient associations were assessed as reliable sources of information and to some extent also support, but the importance of access to professional sources was also stressed.

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Section: Interpretation and Discussionsupporting

confidence: 72%

Need of support in people with chronic obstructive pulmonary disease

Ali

Fors

Ekman

2018

Journal of Clinical Nursing

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“…Young adult carers report that they need someone to talk to, someone who may offer hope, give advice and with whom they can share experiences and coping strategies (Ali et al, 2013). Developing adequate interventions (e.g., support groups, networks, and web-support) may prevent or moderate negative health consequences among YACs.…”

Section: Discussionmentioning

confidence: 99%

“…Developing adequate interventions (e.g., support groups, networks, and web-support) may prevent or moderate negative health consequences among YACs. However, these need to be delivered with respect and sensitivity, to overcome potential barriers of fear, shame and loyalty that may make it difficult for many YACs to seek external support (Ali et al, 2013).…”

Section: Discussionmentioning

confidence: 99%

The Burden of Care: A National Survey on the Prevalence, Demographic Characteristics and Health Problems Among Young Adult Carers Attending Higher Education in Norway

2020

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The aim of the present study was to examine prevalence, characteristics and health outcomes among young adults (18 to 25 years) who provide informal care to family members or others with physical or mental illnesses, substance misuse or disabilities. Design: The sample was obtained from a national survey in Norway from 2018 among students in higher education (the SHoT2018-study). The current sample comprise 40,205 participants, 70.2% women, mean age 22 years (SD = 1.7). Outcome Measures: Participants answered questions on care responsibilities, mental health problems (The Hopkins Symptoms Checklist-25), insomnia (sleep questionnaire), somatic health (Somatic Symptom Scale-8), and life satisfaction (Satisfaction With Life Scale). Results: 5.5% of the respondents reported having care responsibilities. Caring was associated with being female, single, having divorced parents, being an immigrant, and having financial difficulties. More mental health problems, insomnia, somatic symptoms, and lower life satisfaction were found among respondents with care responsibilities. Number of hours of caring was associated with negative health outcomes in a doseresponse pattern. Conclusion: Professionals within health care, social services and the educational system should be sensitized to the needs of young adults with care responsibilities for family members or others with illness, substance misuse, or disabilities. The negative health problems among these young adult carers (YACs) should be acknowledged, and adequate support made available.

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“…A growing body of research emphasises the needs and experiences of young carers. However, there is a strong need for information about the illnesses of young carers' family members (Ali, Ahlström, Krevers, Sjöström, & Skärsäter, 2013;Frank, 1995;Newton & Becker, 1999). Young carers need to be aware of the course and consequences of their family member's illness (Elf, Skrster, & Krevers, 2011;Kavanaugh, Noh, & Studer, 2015;Millenaar et al, 2014;Moore & McArthur, 2007).…”

Section: E533mentioning

confidence: 99%

“…Young carers also express a strong need to talk about their experiences and feelings and to be recognised as a young carer. Depending on their individual experiences, they seek exchanges with like‐minded peers or with friends who are not involved in caring (Aldridge & Becker, ; Ali et al., ; Kavanaugh et al., ; Nichols et al., ). Some young carers need to talk with adults, either those in their families or others adults such as teachers or social or healthcare professionals (Kavanaugh et al., ; Nicholson, Hinden, Biebel, Henry, & Katz‐Leavy, ).…”

Section: Introductionmentioning

confidence: 99%

Being we and being me: Exploring the needs of Austrian families with caring children

Nagl‐Cupal

Hauprich

2018

Health Soc Care Community

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Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers' personal needs. However, knowledge and understanding are limited regarding the needs of young carers' families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers' families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers' families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.

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Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study

Cited by 24 publications

References 27 publications

Need of support in people with chronic obstructive pulmonary disease

Need of support in people with chronic obstructive pulmonary disease

The Burden of Care: A National Survey on the Prevalence, Demographic Characteristics and Health Problems Among Young Adult Carers Attending Higher Education in Norway

Being we and being me: Exploring the needs of Austrian families with caring children

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