A Longitudinal Analysis of Family Empowerment and Client Outcomes

Resendez, Miriam G.; Quist, Ryan; Matshazi, Dumiso G. M.

doi:10.1023/a:1009483425999

Cited by 66 publications

(13 citation statements)

References 19 publications

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“…And he concluded, “above all, to convey to them our wholehearted desire to help and cooperate”. Resendez et al [49] (2000) have already noted that meeting the needs of the family means making them active agents in the decisions that are being taken.…”

Section: Resultsmentioning

confidence: 99%

The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust

Gómez-Zúñiga

Moyano

Fernández

et al. 2019

Orphanet J Rare Dis

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Background Given the inherent complexity of rare paediatric diseases and the sensitive emotional context of the situations they create (due to the patients’ age and the tense uncertainty surrounding the progression of the disease), communication between the adults involved is a key tool in the efforts to provide these children and youths a better quality of life. We conducted ten interviews with families of children with rare diseases, in the aim of exploring how communication between doctors and patients affect their daily lives. All participants, members of FEDER (a Spanish federation of associations of patients with rare diseases) were invited by phone or email to participate in a semi-structured interview including questions on clinical information, communication experiences with healthcare professionals, and the impact these had on the interviewees’ relationships with them. To analyse these interviews, we used the ‘grounded theory’ methodology and open and axial text coding techniques, in addition to those identifying the properties and dimensions of the categories formulated. Results The core category we have proposed is ‘adjustment of mutual trust’, with said category describing the attitude and behaviour of doctors who inspire trust in the parents of paediatric patients diagnosed with a rare disease. More specifically, said behaviours or sources of trust are: appearing human, sensitive and empathetic; showing transparency and communicative openness; being supportive of parental proactivity; and being available to families at all times. Conclusions Trust is the cornerstone of parent-doctor communication in the field of children with rare diseases. If the sources of trust are present, they create a degree of trust that bolsters both parties in the search for a common goal: providing the child with the best possible care. Electronic supplementary material The online version of this article (10.1186/s13023-019-1134-1) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust

Gómez-Zúñiga

Moyano

Fernández

et al. 2019

Orphanet J Rare Dis

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“…The active participation of parents and families in mental health care of children and adolescents leads to better outcomes including parent satisfaction [10,14] and parent satisfaction was found to have low to moderate correlations with a measure of empowerment [10]. Hence, levels of correlation in the range 0.3 to 0.6 were expected between the scales and two items relating to parent understanding of treatment and involvement in dialogue with the clinic.…”

Section: Methodsmentioning

confidence: 99%

“…Parents have responsibility for contacting health services on behalf of their child and their involvement in treatment is important for its success [8-10]. Moreover, parent experiences of care might influence their expectations of and involvement in future care [1,11].…”

Section: Introductionmentioning

confidence: 99%

Parent experiences questionnaire for outpatient child and adolescent mental health services (PEQ-CAMHS Outpatients): reliability and validity following a national survey

Garratt

Bjertnæs

Holmboe

et al. 2011

Child Adolesc Psychiatry Ment Health

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AbstactBackgroundDevelopment and evaluation of the PEQ-CAMHS Outpatients, a parent completed questionnaire to measure experiences of outpatient child and adolescent mental health services (CAMHS) in Norway.MethodsLiterature review, parent interviews, pre-testing and a national survey of 17,080 parents of children who received care at one of the 86 outpatient CAMHS in Norway in 2006. Telephone interviews were conducted with a random sample of non-respondents. Levels of missing data, factor structure, internal consistency and construct validity were assessed.Results7,906 (46.0%) parents or primary caregivers responded to the questionnaire. Low levels of missing data suggest that the PEQ-CAMHS is acceptable. The questionnaire includes three scales supported by the results of factor analysis: relationship with health personnel (8 items), information and participation (4 items), and outcome (3 items). Item-total correlations were all above 0.6 and Cronbach's alpha correlations ranged from 0.88-0.94. The results of comparisons of scale scores with several variables relating to global satisfaction, outcome, cooperation, information, involvement and waiting time support the construct validity of the instrument.ConclusionsThe PEQ-CAMHS Outpatients questionnaire includes important aspects of outpatient CAMHS from the perspective of the parent. It has evidence for data quality, internal consistency and validity and is recommended in surveys of parent experiences of these services. Future research should assess test-retest reliability and further tests of construct validity that include clinical data are recommended.

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“…Empowerment increased for families when they knew the steps required when needing help; they could make good decisions and had a good understanding of the service systems. In earlier studies, these associations have been contradictory [ 37 , 44 , 45 , 46 , 47 , 48 ]. According to [ 49 ], parents appreciate listening, having their views and feelings acknowledged and getting practical support.…”

Section: Discussionmentioning

confidence: 96%

Parental Worries, Child Maltreatment Risk and Empowerment: How Are They Noticed in Child and Family Services?

et al. 2022

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Parental empowerment has been related to their well-being and self-efficacy. Learning more about the signs describing child maltreatment risk are crucial for the welfare of children and families. The aim of this study was to assess the risk of child maltreatment (CM) and related worrying factors of parents and associations between the CM risk, worries and parental empowerment. The study is based on self-report surveys administered to parents in primary health care and hospital settings. The risk of CM and related worrying factors were measured by the Brief Child Abuse Potential Inventory (BCAP) from 453 parents. Family empowerment was measured by The Generic Family Empowerment Scale (G-FES). Parents expressed worries such as loneliness and distress (20%), feelings of persecution (9%), family conflict (17%), rigidity (21%) and financial insecurity (4%). The BCAP found 27 parents with increased risk. Parents with CM risk expressed more empowerment in connection to services for their child and family. It is crucial to discuss worries in child and family services before they raise the risk level. Tools such as the BCAP are useful in systematically identifying the child maltreatment risk and parental worries under discussion, offering possibilities for preventing child maltreatment and increasing well-being of children.

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A Longitudinal Analysis of Family Empowerment and Client Outcomes

Cited by 66 publications

References 19 publications

The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust

The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust

Parent experiences questionnaire for outpatient child and adolescent mental health services (PEQ-CAMHS Outpatients): reliability and validity following a national survey

Parental Worries, Child Maltreatment Risk and Empowerment: How Are They Noticed in Child and Family Services?

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