Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia-spectrum disorders: a qualitative study

Knock, Jane; Kline, Emily; Schiffman, Jason; Maynard, Ashley E.; Reeves, Gloria

doi:10.1111/j.1751-7893.2011.00305.x

Cited by 43 publications

(37 citation statements)

References 27 publications

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“…[11][12][13][14] This literature has drawn attention to multiple burdens associated with caring for a family member who has a mental illness including: financial challenges, physical and psychological demands associated with care-giving and advocacy, disruption of household routines, restriction of social activities, impaired relationships with others outside of the family, emotional distress associated with difficult and at times bizarre behaviours, as well as secondary distress associated with the reactions of others both within and outside of the family. Several studies [15][16][17] have also drawn attention to an ongoing pattern of grief associated with parenting a child with mental illness.…”

Section: Introductionmentioning

confidence: 99%

Loss and change: The challenges of mothering an adult child with schizophrenia

Wiens

Daniluk

2017

IJH

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A qualitative narrative and cross-narrative research method was used to explore how six mothers of adult children with schizophrenia or schizoaffective disorder experienced personal growth and change. Twenty-four largely unstructured interviews were conducted over the course of two years. The following eight common themes emerged across the narratives: Enduring sadness and loss, Distress and struggle, Fluctuations in hope, Feelings of guilt and regret, Concern about their child's future, Impact of their child's mental illness on their other children, Commitment to helping/action, and Personal and relational change. The changes reported by these mothers were set against the backdrop of the nonfinite losses that characterized the realities and uncertainties of their lives since the onset of their child's mental illness. Implications for mental health practice are addressed based on these findings.

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Section: Introductionmentioning

confidence: 99%

Loss and change: The challenges of mothering an adult child with schizophrenia

Wiens

Daniluk

2017

IJH

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“…In the search for mental health services that meet the needs of children or adolescents, difficulties related to accessibility were observed, as access to mental health services becomes particularly difficult when children are having seizures (11)(12) . Difficulties were also found regarding the suitability of the services when it comes to safety and the impact of negative experiences of children/adolescents and family members with health staff (10) .…”

Section: Discussionmentioning

confidence: 99%

“…The future was also mentioned, especially regarding options for employment for the mentally ill (10,18) and the well-being of relatives, including access to health care services by spouses and other children, as well as the maintenance of household routines (12) .…”

Section: Discussionmentioning

confidence: 99%

Difficulties of familes in caring for children and adolescents with mental disorders: an integrative review

Campelo

Costa

Colvero

2014

Rev. esc. enferm. USP

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Objective To identify the difficulties of families with children and/or adolescents with mental disorder. Method This is an integrative review. In December 2013, an electronic search was performed on Latin American Caribbean Literature on Health Sciences databases (LILACS) and on Electronic Medicus Index of the National Library of Medicine (MEDLINE) indexed in the Health Virtual Library (BVS) using a combination of descriptors and boolean operators as follows: mental disorders and child or adolescent and caregivers and/not health staff. Results 557 studies were identified, of which 15 were selected for this study. The findings indicated difficulties related to the care for or to interaction with children/adolescents with mental disorder. Conclusion The studies revealed difficulties related to everyday practices of care and feelings expressed during care practices, as well as in relationships with children or adolescents with mental disorder.

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“…Ghosh & Greenberg, 2009;Möller-Leimkühler & Wiesheu, 2012;Papastavrou et al, 2010), compared to studies that explore caregiver burden of children or adolescents with mental health problems. In a rare study of caregiver burden of carers with adolescents who experience schizophrenia, Knock et al (2011) point out that 'Despite the recent increase in research exploring caregiver burdens for adults with schizophrenia, virtually no studies of caregivers of children and adolescents with schizophrenia exist ' (p.350). It must be acknowledged that schizophrenia in adolescents is uncommon and subsequently, such a study is equally uncommon in the literature.…”

Section: The Parent's Experience Of Their Child's Mental Illnessmentioning

confidence: 99%

“…To date, the literature has tended to focus on the first two domains such as the impact of psychiatric hospitalisation on the adolescent (Lopez, 2000;Thibeault et al, 2010), the impact of the adolescent's difficulties on their parents (Faust & Scior, 2008;Knock et al, 2011) or the impact of working with this population on staff (Dean et al, 2010;van Kessel et al, 2012). Little literature could be found that could be said to investigate the third domain in the context of adolescent inpatient units.…”

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confidence: 99%

The long sleep-over: the lived experience of teenagers, parents and staff in an adolescent psychiatric unit

Ward¹

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Adolescents are in a particular life cycle stage that involves numerous psychosocial changes. When this stage of life is compounded by serious mental health difficulties, the effects can have significant repercussions for both teenager and family. For some adolescents, an extended inpatient stay is necessary in order to address these difficulties. This research investigates the subjective experience of adolescents, their parents and staff who live, work and have a child in such a facility; the Barrett Adolescent Centre (BAC) located in Brisbane Australia. The qualitative study was completed by the sole social work practitioner who was employed at the Unit for over eight years.The Unit was a long stay residential facility and provided the opportunity to collect data over an extended period of time. The research therefore emerges from an insider, practitioner-researcher context. The primary research question focused on how the collective experiences of adolescent consumers, parents and staff can inform mental health practice in adolescent residential settings.A review of the literature suggests that there is a strong tendency to incorporate concepts from the adult mental health literature into adolescent mental health practice. The notion of recovery is an example, which is heavily influenced by conceptualisations of adult experience. Consequently, the aim of the present research was to better understand the participants holistically, but also in the appropriate developmental context; incorporating the social, emotional and experiential domains that form the lived experience of inpatient life. Broadly speaking, the key areas of interest included how the notion of recovery was experienced by the adolescents, the experiences of the parents during their child's inpatient stay, and the experiences of the staff while helping the adolescents.The research emphasises and values subjectivity as well as the interpretation of significant personal experience. Subsequently, the study is located within an interpretative phenomenological analysis frame. It is also informed by critical realism that posits that mental illness is an objectively real phenomenon, though experienced uniquely by each individual affected by it. Semi-structured interviews formed the basis of the data, involving the three population groups of adolescent inpatients, their parents and staff. A total of 13 adolescents, 10 staff and 8 parents were interviewed.Single interviews were utilised for all participant groups as well as a small focus group of the three primary staff professions; that of Allied Health, Nursing and Education. The use of photography was also utilised with the adolescents in order to explore various facets of the therapeutic milieu from their perspective. The adolescents were also offered successive interviews over a number of ii months to enrich the picture of inpatient life. Elements such as family, education, consumer-staff relations as well as the recovery process were investigated.Hermeneutical thematic analysis uncovered ric...

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Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia-spectrum disorders: a qualitative study

Abstract: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.

Cited by 43 publications

References 27 publications

Loss and change: The challenges of mothering an adult child with schizophrenia

Loss and change: The challenges of mothering an adult child with schizophrenia

Difficulties of familes in caring for children and adolescents with mental disorders: an integrative review

The long sleep-over: the lived experience of teenagers, parents and staff in an adolescent psychiatric unit

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