The current study set out to explore the affect and significance of differing parental conditions on the experiences commonly reported by young carers. Previous studies on young caring have reflected on the impacts of caring for parents with particular `types' of conditions (normally physical disability or mental health problems) or a specific diagnosis. However, these have not contrasted or discriminated young carers' experiences according to different parental conditions. To address this gap in knowledge, the current study considered the experiences of young carers supporting parents with different `types' of conditions, namely physical disability, mental health problems and substance misuse. The participants discussed the impact of caring on a range of areas such as their education, social life, health, spatial transitions, relationships and role reversals. Additionally, definitional issues were considered. This included young carers own understanding and subscription to the term `young carer' and the significance of this to their identification. In terms of methodology, the study was firmly grounded within the qualitative domain and influenced by a constructive-interpretive paradigm, specifically symbolic interactionism. Within this, the grounded theory approach was used insofar as it provided a method to conduct the study. A range of data-collection techniques were employed. Semi-structured interviewing was the principal method used, with additional data gathered through a self-esteem tool, observations and diaries. The sample consisted of 30 young carers. The results showed firstly that the participants did not necessarily comprehend the term `young carer' or apply it to their own caring roles at home. Arguably, this contributed to their `hidden-ness' (i. e. invisibility) and as a result their needs were overlooked. The need for a new definition which embraces their understandings, together with appropriate awareness-raising programmes within schools and for key social care and health professionals was evidenced and called for. Secondly, whilst the participants shared common experiences regardless of the nature of the parental condition, other issues reported were specific to particular situations. Those most adversely affected were caring in the contexts of parental substance misuse or parental mental health problems. Such young carers were dually disadvantaged, as they experienced the most extreme difficulties, yet their caring roles and needs were least likely to be addressed. The experiential differences reported by young carers in different caring contexts have important practice implications. Nevertheless, the extent to which the experiences reported could be wholly attributed to the caring role, rather than other structural and socio-economic factors was questionable.

本文主旨在於由少年家庭照顧者的觀點，詮釋自身之照顧歷程。透過敘事研究法深入少年家庭照顧者的內心世界，探討少年家庭照顧者角色形成因素、照顧歷程之主觀感受與經驗詮釋、承擔照顧責任對少年發展的影響、因應壓力方式以及社會福利層面及個人之需求，並根據研究結果提出對國內家庭照顧者服務及少年福利服務之建議。 本研究共訪談四位有效受訪者，經過整理分析研究結果發現，少年家庭照顧者角色形成的因素，包含「文化規範」、「交換的報答回饋」、「情感性因素」、「潛在照顧者的缺乏」及「家庭系統分工考量」五個層面。 少年照顧者的感受可歸納為以下幾點：1.少年失去了童年與少年時期應享有的福利；2.成年家屬花費許多時間和精力在失能家屬身上，忽略了家中其他成員；或因轉而對少年照顧者產生過份的期待；3.永無止盡的工作常令少年家庭照顧者感到疲累不堪；4.失能家屬往往會有突發狀況發生，照顧者必須隨時隨地陪伴在失能家屬左右，沒有自己的時間與空間；5.少年家庭缺乏足夠的經濟支持，除了負擔家務照料失能家屬外，少年仍必須工作賺取薪資。 照顧角色對少年發展的助益包括：少年照顧者會建立出一套個人對生活、責任、情感的架構，將負面情境視為對生命的正向考驗，且較其他同儕更為實際與成熟的思考態度與挫折容忍適應程度，且因未來的規劃而產生自我督促的力量。另外少年照顧者較具同情心與利他主義，對於自身存在的價值有高度的評價，亦更具有關懷弱勢者與體恤他人的能力。 對少年發展的限制方面，少年家庭照顧者不易保有自我的自主性及獨立性。受訪者產生心理分離的矛盾與衝突，既渴望保有自我獨立性，卻又無法放下家人的負擔。而日以繼夜的制式化生活，可能有礙個體發展自我獨特的心理社會價值觀。另外，角色逆轉導致少年照顧者承受角色衝突，出現焦慮、怨恨的情緒。 照顧責任對少年家庭照顧者生活的影響包括：家庭凝聚力與成員間親密感增進；唸書時間與照顧時間互相擠壓而無法兼顧學業與照顧；照顧工作影響少年參與社交活動的時間；對未來的考量安排必須符合現實生活的所需。 少年照顧者感到一般壓力情境包括：遭遇到生活事件改變或接踵而來的事件；人際關係的壓力以及課業成績的壓力；因照顧責任所衍生的壓力則包括受照顧者的不合作與責備、父母不合理的期望、家庭經濟壓力，擔心未來沒有人照顧失能家屬，社會他人的異樣眼光、及外人與社會道德期待也都是少年照顧者因為照顧者角色所必須額外面對的壓力。少年照顧者因應壓力所採行的策略包括：透過傾訴宣洩情緒、轉移注意力，找其他的事作、暫時離開現場、積極地強調正面意義，或以快速轉換念頭的方式調整負面情緒。最後研究分析少年家庭照顧者所使用的社會資源及其需求，少年家庭照顧者的人際支持網絡十分薄弱，使用的資源有限。絕大多數的社會支持均以經濟層面的協助為主。少年照顧者的需求包括：替代性照顧服務、期待社會以平等的眼光看待失能家屬、充足的資訊和心理輔導以及能夠獨處喘息的時間。 因應研究結果，研究者提出政策及實務上之建議，首要保障少年照顧者身為 少年的人權，提供符合少年照顧者需求之福利服務，並結合所有相關單位共同合作滿足少年照顧者的獨特需求。 / The purposes of this qualitative research include: (1)Analyze the factors of young carer’s becoming. (2) Understand young carer’s feelings about care experience. (3) Understand what kind of influences when teenagers must care for disabled family members. (5) Analyze young carer’s pressures and how they coping with. (6) Accord to research findings to propose welfare organizations and government some suggestions. Four young carer have interviewed. The research discovered the factors of young carer’s becoming are including culture standard , exchanging to pay back, emotions with family members, lacked potential carer and family system factors. Young carer’s feeling about care experiences are including they lost their childhoods, their parents have excessive hopes to young carer, too many works made young carer feel tired, and they have no time to play with their friends or to do other things. The influences about teenager care for disabled family members are including the positive and the negative sides. The positive side is young carer have more eympathy and maturation than other same generations. The negative sides are they lost decision-making powers and institutionalized life style will let them feel depressed. Young carer’s pressures are including teenager’s and carer’s pressures. The way that they cope with the pressures are leading off feelings, transfering attention, doing other things, impermanent leaving or to find front meanings. Finally this research discovered young carer with weak support . They need rest time, enough information, and psychology counseling etc. According to research discoveres, researcher propose three suggestions about policy and welfare organzations. ◆ To ensure young carer’s human rights , remember they still are teenagers. ◆ Providing welfare services which fitting in with young carer. ◆ Connecting with all related units to satisfy young carer’s individual needs.

<p><strong>ABSTRACT</strong></p> <p>It is estimated that twenty percent of the Canadian population experiences a serious mental illness at some point in their lifetime. A portion of those that do so will be parents. Research indicates that in some circumstances, when a parent with a serious mental illness needs support that they are not getting from other adults or the formal mental health care system, the caregiving responsibilities can fall to their children. Sometimes called “young carers” in literature developed in the U.K. and elsewhere, there has been little attention in Canada to this population or the implications of the term “young carers”. Through a critical feminist lens, a small qualitative study was undertaken to explore the lived experiences of adults looking back on having been “young carers”, a perspective seldom taken in the literature.</p> <p>The four study participants had all cared for their mothers in households with extended social networks that included fathers and siblings- an interesting counterpoint to the “young carer” literature, which has centered on isolated single parents with children. Participants described how they found themselves in caring roles, what their caring consisted of, and why they continued to care despite other options being available. The study reveals the intricate social pressures that the participants faced, and suggests that becoming a carer may be more complex than past studies have indicated. I examined participants’ stories with an eye to the structural forces that shaped their pathways as carers and their reflections on those pathways. The discussion focuses on what the participants’ experiences can tell us about the contemporary neoliberal political climate: how its emphases on individualism, independence and smaller government, contribute to the depletion of public mental health services and a troubling focus on sustaining “young carers” rather than questioning their positioning.</p> / Master of Social Work (MSW)

In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. / Dissertation / Candidate in Philosophy / This dissertation explores the lived experiences of young adult caregivers (YACs) caring for an older adult with Alzheimer’s Disease or a Related Dementia. Research on this group of caregivers is limited, particularly YACs (ages 18-25) who provide substantial (unpaid) caregiving for an older adult affected by Alzheimer’s or a Related Dementia. Therefore, a key aim of this research is to generate awareness and shed light on the nature of caregiving as experienced by this overlooked population of caregivers. As such, this dissertation aims to understand how young caregivers give meaning to, interpret and make sense of their caregiving experience. To understand the caregiving experience of YACs, I conducted interviews with 12 YACs from Canada and the United States and analyzed their perspectives in detail. The findings shed light on the many factors that shape the caregiving experiences. In addition, the findings show that more research is needed to understand the differences amongst young caregivers to better support their needs. In general, the research can contribute to existing knowledge on young adult caregivers, as well as relevant programs and policies.