Physical & Occupational Therapy In Pediatrics
ISSN: 0194-2638 (Print) 1541-3144 (Online) Journal homepage: http://www.tandfonline.com/loi/ipop20
Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood E. Björquist, E. Nordmark & I. Hallström To cite this article: E. Björquist, E. Nordmark & I. Hallström (2015): Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood, Physical & Occupational Therapy In Pediatrics, DOI: 10.3109/01942638.2015.1101041 To link to this article: http://dx.doi.org/10.3109/01942638.2015.1101041
Published online: 07 Dec 2015.
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Date: 12 February 2016, At: 21:30
Physical & Occupational Therapy in Pediatrics, Early Online:1–13, 2015 C 2015 Taylor & Francis Group, LLC ISSN: 1541-3144 print / 1541-3144 online DOI: 10.3109/01942638.2015.1101041
Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood E. Bj¨orquist, E. Nordmark, & I. Hallstr¨om Downloaded by [Gazi University] at 21:30 12 February 2016
Department of Health Sciences, Faculty of Medicine, Lund University, Sweden
ABSTRACT. Aims: Parents are the primary support providers for adolescents with disabilities, their health and wellbeing is therefore of great importance when planning for youths’ transition into adulthood. The aim of this study was to gain a deeper understanding of how parents of adolescents with cerebral palsy (CP) experience their own health and wellbeing and their needs for support during the adolescent’s transition to adulthood. Methods: An inductive qualitative approach was used, including interviews with 15 mothers and fathers to 10 adolescents with CP aged 17–18 years. Latent content analysis was used for analyzing the data. Results: The main theme “Friction blisters chafing and healing during transition” illustrates the parents’ experiences. Five sub-themes formed the parents’ experiences of concerns along with sorrow and stress in life, worries about what was to come, their need for support, strategies for coping, and experiences of cohesion. Conclusions: Knowledge of parents’ experiences of their health, wellbeing, and needs provide valuable information for the planning of transition for adolescents with disabilities. Help with parents’ sorrow, stress, and worry in daily life might be facilitated and parental health safeguarded by a navigator who can both guide and give hands-on support. KEYWORDS. Adolescents, cerebral palsy, health and wellbeing, parents’ experiences, qualitative interviews, transition
INTRODUCTION Transition to adulthood beginning in early adolescence is a challenging period for youth with CP and consequently for their parents.11 Parenting and caring for adolescents with cerebral palsy (CP) who are in transition from childhood to adulthood has an impact on parents’ health and wellbeing and has both negative and positive effects.8 Murphy and colleagues found a strong correlation between the mental health of parents to children with CP and their child’s emotional, psychosocial, and health-related quality of life.22 CP is a lifespan disability which often involves a lifelong commitment for caregivers.25,28 Parents are mostly the primary ¨ Address correspondence to: Elisabet Bjorquist, Department of Health Sciences, Lund University, Faculty of Medicine, Box 157, SE-221 00 Lund, Sweden. E-mail: [email protected] (Received 19 August 2014; accepted 18 August 2015)
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caregivers of adolescents with CP, which is why parental health, as defined by the World Health Organization as a state of complete physical, mental, and social wellbeing, is of great importance.19,34 Dodge and colleagues proposed that wellbeing can be defined as “the balance point between an individual’s resource pool and the challenges faced.”9 Transition to adulthood, described as the planned movement from child-oriented to adult-oriented health-care systems, involves supporting and navigating adolescents, which requires a lot of parents’ energy.1,14 Parents of children with CP who are of school age were found to experience a high level of stress and emotional burden.20 Physical health problems such as headaches, back problems, asthma, and arthritis are reported as direct or indirect effects of stress in parents of children with CP.3 However, another study showed that the child’s level of disability did not influence parents’ health status.6 Sawyer and colleagues found that parents may also suffer from depressive symptoms, which were found to be associated with the time involved in caring and time pressure.29 Parents of children with CP also may experience sorrow several years after the child has been diagnosed.31 Byrne and colleagues showed that male caregivers of children with CP had stronger physical and mental health than female caregivers, but most studies concerning parents of children with CP involve mothers.6,19,29 This is because fathers’ involvement in child health care has been lower than that of mothers in the past.5,21 A literature review showed consistent evidence that family-based habilitation, stress-reducing interventions, and parenting training reduced stress and strengthened parents’ sense of involvement and control.4 Because parents are important for adolescents with CP in transition, they need ongoing and coordinated support.7,14,26 When parents are healthy, they are more capable of supporting their youngsters, which is why parents’ individual experiences of health, wellbeing, and needs are of great importance in the planning of transition programs within support and healthcare settings.27 The aim of this study was therefore to gain a deeper understanding of how parents of adolescents with CP experience their own health and wellbeing, and their needs for support during the adolescent’s transition to adulthood. METHOD Design An inductive qualitative approach, including both focus group interviews and individual interviews, was used.16,17 The interviews were analyzed using qualitative content analyses as recommended by Graneheim and Lundman.12 Procedure An invitation to participate in either focus group or individual interviews, based on their own preferences, was sent out by an administrative assistant at the Child and Youth Habilitation Services to primary caregivers of all 59 adolescents with CP, aged 17–18 years, living in the region of Scania in the southern part of Sweden during the study period. Primary caregivers were defined as people responsible for the decision making for the adolescents. Twenty-four primary caregivers answered, and 15 of them agreed to participate. The first author (EB) contacted them with
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TABLE 1. Characteristics of Parents (N = 15) Country of origin Sweden Outside Europe Marital status Married/cohabitant Single parent Relation to the adolescent Biological parent Adoptive parent Adolescent is living with Both parents Mother Father Alternately with mother/father Level of education High school College/university Employment status Working full-time Working part-time
14 1 12 3 13 2 8 4 — 3 8 7 10 5
further information and agreed on the time and place for the interviews. They were all biological or adoptive parents and are referred to as parents throughout the article. Participants Eight mothers and seven fathers with a mean age of 47 years participated. Parental characteristics are presented in Table 1. The parents’ perceptions of their adolescents’ cognitive levels and gross motor functions are presented in Table 2. Data Collection Four focus group interviews and nine individual interviews were carried out from March 2012 until May 2013. All participating parents were invited to participate twice, and nine parents chose to participate in more than one interview, either in two focus group interviews or in both an individual and a focus group interview. The distribution of participation in the interviews is presented in Table 3. The focus group interviews, consisting of up to seven participants, were moderated by the first author (EB) with an assistant moderator as observer and were performed in a private room at a habilitation center or at a local hospital. The individual interviews were conducted by the first author at places chosen by the parents, for example, in ´ All parents filled in a form that asked them to the participant’s home or at a cafe. TABLE 2. Parental Perceptions of Their Adolescents’ Learning Disabilities and Levels of Gross Motor Functions According to GMFCS—E&R1 Parental perception of their adolescents’ learning disability None/mild/moderate or severe Parental perception of the adolescents’ GMFCS E&R1 level I/II/III/IV/V 1
Gross Motor Function System Expanded and Revised.23
4/7/4 8/3/1/1/2
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TABLE 3. Each Participant’s Participation in Focus Groups and/or Individual Interviews Participant
1
2
3
4
5
6
Focus group interview Individual interviews
II
I I
I
II
I I
I
7
I
8
9
10
11
12
13
14
15
II
II
I I
I
I I
I
I
I
describe background characteristics of themselves and their adolescents. Parental perceptions of their adolescent’s self-initiated gross motor function were classified according to Gross Motor Function Classification System Expanded and Revised (GMFCS–E&R).23 The classification is based on self-initiated movement and has its emphasis on sitting, walking, and wheeled mobility, where level I corresponds to the highest functional level in contrast to level V, which describes children and youth with CP and severe functional limitations. The interviews contained four parts, all related to being a parent to an adolescent with CP in transition into adulthood. The participants were asked to narrate their experiences, and in the focus group interviews, to discuss them with each other. An interview guide was used to ensure that the same topics were covered in all interviews, e.g. parents’ experiences of their own health and wellbeing and parental need of support during their adolescent’s transition to adulthood. To ensure that the participants focused on personal health and not their adolescents, different kinds of stimuli material were used as recommended by Krueger and Casey, and Wibeck et al.16,32 In the first part of the interview, parents were asked to shortly introduce themselves and their adolescent, and to narrate how they experienced their life situation at the moment when their adolescent was to become an adult. In the second part, the parents were asked to narrate their experiences of personal health and wellbeing. To stimulate the parents to narrate, they were offered the choice among different images associated with positive and negative mental as well as physical conditions representing, for example, relaxing, stressful, or painful conditions. During the third part, the moderator gave 2–5 statements with which the participants could agree or disagree by using green or red cards. The parents then elaborated on what they had experienced and in the focus group interviews also discussed within the group. One example of a statement was: “I always sleep well at night.” In the last part of the interview, when participants were asked to describe personal needs of support during their adolescent’s transition to adulthood, they were given a play figure to help them focus on themselves and being a parent in need of support. In the focus groups, the parents were invited to discuss in pairs and afterwards with the focus group. During all interviews, additional follow-up questions such as “Can you tell me more?” or “What do you mean?” were asked if the moderator did not understand or the participants only used a few words in the narratives. Individual interviews lasted between 50 and 90 minutes, and focus group interviews lasted between 90 and 120 minutes. All interviews were audio tape-recorded and transcribed verbatim by the first author. Ethical Considerations The study was carried out in accordance with the Declaration of Helsinki and was approved by the Regional Ethical Board (Reg. no. 2011/350).33 The parents were
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TABLE 4. Example of Analysis Process
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Meaning Units (MU)
Condensed MU
Interpreted MU
Activities within Because it’s difficult You can’t go to so the family to go away we many places so you make the normally do have to do more family ties activities together in activities together strong the family and it at home and that makes the family tightens the family ties strong ties It’s good to My friends are more I’m having a good never be alone than I am time, when I look at alone like because I’ve got X my friends who others can be at home most of the have kids in the time, which feels same age as X, it’s good clear that they’re much more alone than I am. Because I’ve got X at home for most of the time Activities within We enjoy always X has always been the family are having our child with us when we’ve joyful joining us when gone somewhere; we’re going we almost got angry somewhere if X hasn’t wanted to come along
Code
Sub-theme
Strong family ties
Never alone which feels comfortable
A sense of coherence
Activities within the family create a sense of joy
informed of the guaranteed confidentiality and the right to discontinue the interviews at any time, and they all signed written informed consent forms. Data Analysis The analysis was completed step-by-step as recommended by Graneheim and Lundman, and outlined below.12 An example of the analysis process is shown in Table 4. 1. The transcribed interviews were read independently by all three authors to obtain a sense of the whole. 2. Meaning units (MU), defined as a constellation of words or sentences that relate to the central meaning were identified in the interview text by the first author.10 The MUs were then discussed by all three authors. 3. All MUs were condensed and interpreted by the first author, and then discussed with the other authors, in order to assure the underlying meaning. 4. Each MU was labeled with a code according to its topic by the first author. 5. Units with similar meaning were abstracted into sub-themes by all three authors and critically discussed in relation to the transcribed interviews. 6. Finally all three authors read through all the interview texts to ensure that nothing of importance was left out. The theme and subthemes were discussed between the three authors until agreement was reached. The analysis resulted in five sub-themes ending up in one main theme. Representative citations from mothers (M) and fathers (F), focus group interviews (FG),
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and individual interviews (I) are presented in the results to ensure trustworthiness as recommended by Graneheim and Lundman.12 RESULTS The main theme “Friction blisters chafing and healing during transition” is an allegory illustrating the parents’ experiences of personal health, wellbeing, and needs during their adolescent’s transition to adulthood. The blisters arose in their child’s early childhood and continued over the years, and sometimes they healed. Facing their adolescent’s transition to adulthood, the blisters started to chafe again which affected the parents’ health, wellbeing, and needs;
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“I suppose everyone has a weight to carry. I remember someone [in the focus group the other day] called it a friction blister . . . that is how it feels.” (M5.I) The alternately chafing and healing of the friction blisters is described in the sub-themes: “Concern and sorrow”; “Stress and suffering in daily life”; “Worries of what is to come”; “Desire for help”; “Coping and a sense of cohesion.” Concern and Sorrow Parents described, in emotional ways, their experiences involving concerns and sorrow from the first information they received about their child’s condition and continuously over the years. Parents’ own wellbeing was dependent upon their adolescent’s wellbeing. They always had their adolescent’s best interests in mind and were concerned about the ongoing changes during transition which affected the parents and chafed their souls. When their adolescent was excluded from the social community, when no peers called or visited, the parents felt like they had failed. They worried about their adolescent’s reflections in the identity process, and their worry about the future chafed the parents’ emotions. Parents felt sorrow when they thought about what life would have been like for their adolescent had he or she not had a disability. Facing the adolescent’s transition to adulthood also brought to life sorrow and anger from the past as the old blisters began to chafe. Disappointment over lost opportunities to experience things as others might do caused hurt, and memories of encounters with unsympathetic professionals aroused unpleasant emotions. Parents described that the first information about their child’s condition left them in sorrow, a wound that stayed with them for life: “I remember we got really bad news and then it was the worst doctor you can ever get; I will never forget the words he said.” (F4.FG) Stress and Suffering in Daily life Parents described their own health and wellbeing as “stressful,” “challenging to coordinate,” “sometimes hopeless,” and “time consuming.” Coordinating the familylife puzzle during their adolescent’s transition to adulthood was experienced as stressful for the parents. Coordinating work and social life with the needs of adolescents, in combination with new information, affected their health negatively and increased their blisters. Having numerous phone calls to make and appointments to keep in mind was trying. Appointments at school, meetings with support and
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health-care professionals, and retrieving assistive technology, medicine, and other necessary equipment took a lot of the parents’ energy. They spent hours organizing support and planning for transport service for the adolescent, which often functioned poorly, adding to their feelings of hopelessness. The extensive logistics felt exhausting and they felt drained of energy because their schedule was always fully booked:
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“Appointments with one billion people and the Habilitation . . . another meeting and, shit, how on Earth am I going to fit this into my calendar.” (F9.FG) Parents were certain that having a love life was important to their wellbeing, but concerns during the adolescent’s transition affected their marital relationship. Their intimacy was disturbed by having “nearly adults” at home most of the time. Having personal assistants around meant less spontaneity as far as love life was concerned, and one parent had experienced being interrupted while having sex by an assistant who walked into the house unannounced. Parents felt it was hard to get time for each other, and they were often forced to take turns having their own recreational activities. Worries of What Is to Come Parents expressed a worry for their adolescent’s future life. They thought the information and support from the healthcare system lacked important parts, was irrelevant or confusing, and sometimes too much. Despite having dealt with their adolescent’s concerns for many years, parents experienced that the support and service system was confusing. Parents of adolescents with mild disabilities had not had regular contact with support and healthcare professionals, and were not particularly familiar with the support system. Parents felt unsure of what would happen when the adolescents left the child support and healthcare systems. Even after attending information meetings about the adolescent’s transition to adulthood, they were confused. In the flood of information, they had difficulties sorting out what was relevant to their adolescent. Not knowing what kind of support their adolescent would need or where they were supposed to get help in the future made them feel a lack of readiness. They worried about how their adolescent would manage a future life as an adult, which wore on their own wellbeing: “Oh God, what’ll happen when I’m not there anymore?!” (M10.FG) Parents also worried about the near future, about how to handle the situation when the adolescent turned 18 and needed a trustee, which felt stressful: “Now the panic begins again. It’s only a month left and I’ve got no track of it . . . who should I talk to? I have to fill out the forms, but I need a medical certificate . . . and a social investigation . . . I didn’t think of that when I took the form. ‘A social investigation,’ shit, shit, shit, how do I get one of those?” (M12.I) Desire for Help Parents described how they desired support would be like, involving support for both their adolescent and to themselves. Parents experienced needs for professional, individualized support and information to increase awareness of how they
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could support their adolescent in his or her transition. They desired a contact person to act as a personal coordinator who could ease their burden and heal their blisters. This coordinator should be skilled and have good knowledge of the unique family. The coordinator’s task would be to support both the parents and the adolescent to identify appropriate information, and at the time they needed it. The coordinator could help to find out if and when to apply for different kinds of things for example, for a trustee, for post-secondary education, or for proper living arrangements, and also to make the applications hands-on for them. One parent expressed it as
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“like someone who comes home and gets to know the family and who takes care of things. ‘Now, you can sign, I can complete this . . . we have to apply for . . . blah, blah, blah.’ Don’t inform us about anything that we don’t need, just inform us about things we really need.” (M8.FG) Coping and a Sense of Cohesion Parents described several positive aspects of being a parent of an adolescent with disability and their own strategies to handle everyday life. To handle the stress in their daily lives and to ease their chafing, parents used strategies for coping. Mothers and fathers took turns at being at work or participating in meetings for parents and being at home. They had found a way to handle everyday life. When the adolescent was at school they had their own time and used it to heal their wounds and do health-promoting activities for themselves. If the youth had personal assistance, the parents left home from time to time to cherish their social and partner relationships. Living together or not, parents worked hard at getting along well and being able to handle the parenting together. This gave them a sense of confidence as they knew that the other parent also had the competence to take care of the adolescent. Being a parent of an adolescent with a disability and being needed gave a sense of cohesion to the parents’ life. The family ties were strong and the family was run like a company. Caring for an adolescent in transition concerned the whole family. It was nice to have the company of their adolescent at most weekend evenings, which they knew that other parents of adolescents rarely had. Doing things together with family members and empathetic relatives was convenient and healed their blisters. Participation in activities with other families in disability organizations gave them a sense of community and led to useful hints about information and support in their adolescent’s transition; “In this association you have other parents to talk to who have youngsters who are even older and who’ve been through this, so I have pretty good support.” (F15.I) DISCUSSION Qualitative interviews enabled parents to express their own experiences of subjective health, wellbeing, and needs. As parents usually have their children’s concerns in mind, the use of stimuli material as recommended by Wibeck and colleagues helped the parents to focus on themselves.32 As parents could choose to be
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interviewed individually and/or in focus groups, it was possible for the parents to participate on terms that suited them. Trustworthiness in qualitative studies is ensured by the concepts credibility, dependability and transferability.12,18 Parents in the present study represented both mothers and fathers to boys and girls with different cognitive levels and with different levels of gross motor functions, which ensured credibility. The use of both individual and focus group interviews where parents could participate twice resulted in a rich amount of narrative data. By narrating, the parents had the freedom to decide what to express, either positive or negative experiences, which strengthens the credibility of the study. The analysis process was made through in-depth discussions and reflections by three authors with different backgrounds which further ensure the credibility of the study. Almost half of the participants were fathers, which means that our results represent both maternal and paternal perspectives of health, wellbeing, and needs. This is a strength as research focusing on paternal caregiving is lacking.6 The research process, including the invitation to participate, the analysis process, and the results, with representative citations, have been clearly described to increase the dependability and trustworthiness. The results cannot be generalized, but the wide representation of participants might imply that the results are transferable to parents in similar contexts. The parents described their health and wellbeing in terms of mental health and wellbeing which might imply that mental health was more relevant for them than physical conditions. This is noteworthy in the light of other studies showing physical health problems in parents of adolescents with CP.3 In the present study, this might be understood by the access to assistive technology services and legal rights to personal assistance in accordance with Swedish legislation, for example, the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS).24 The parents expressed strong feelings of sorrow, however, and felt that this affected their health and wellbeing. Parents of children with disabilities often experience negative emotions after being informed about their child’s diagnosis, which results in varying effects on their health and wellbeing.2 Parents in this study discussed emotional memories of negative events experienced recently or years ago which might reflect sorrow over lost opportunities and unhealed grief brought to life in their adolescent’s transition process. This is consistent with the findings by Wittingham and colleagues, who also describe that parents of children with CP often carry a life-long sorrow.31 Furthermore, Hamilton and colleagues describe feelings of grief in parents involving that the changes in life associated with their adolescent’s transitions might activate emotions from the past.13 It was obvious that practical challenges in everyday life affected the parents’ health in the present study. The stress of handling logistics for many years, in addition to the care and support of their adolescent’s needs during their transition to adulthood, was described as affecting the parents’ health and wellbeing negatively. This was also found in the results from a Canadian study by Majnemer and colleagues showing a high stress level in parents of school-aged children.20 The stressful period might explain why many of the invited parents in the present study did not answer or chose to not participate. The parents expressed a need for more individualized support, in order to lessen the burden while supporting their
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adolescents in transition. They needed someone who could help them to coordinate the information and even give hands-on assistance in making applications, believing this would ease the burdens and safeguard their own health. These results are in line with other studies, from different countries, suggesting that a personal contact that ensures individualized support for the whole family in the adolescent’s transition is recommendable. For example, Kraus de Camargo suggests that the use of key workers can facilitate coordination between different systems of care.15 The CanChild Centre for Childhood Disability Research in Canada suggests a navigator who can be, among other things, a mentor, facilitator, planner, and provider of information for parents during the adolescent’s transition to adulthood.30 Familycentered habilitation based on Family-Centered Service (FCS)27 involves taking into account parents’ resources and capabilities. Results from the present study show that supporting adolescents in transition is challenging for any parent and we suggest that FCS in the habilitation services includes the provision of a navigator for parents and the adolescents during their transition to adulthood.
LIMITATIONS Most parents were born in Sweden, which makes the results less transferable to parents with backgrounds other than Swedish. Combining individual and focus groups interviews involves a risk for different kinds of data. However, the combination used in this study had practical and ethical implications as it opened up for all interested parents to participate on terms that suited them.
CONCLUSION AND IMPLICATIONS FOR PRACTICE Being a parent of an adolescent with CP in transition means living in a time of change, when feelings of sorrow and anger that spring from the first grief of becoming a parent of a disabled child rise up. This must be kept in mind by professionals in clinical practice. Moreover, the transition involves challenges and a search for new information, which can be stressful for parents when added to the stress of dealing with all the logistics during the previous years. Parents may experience a lack of readiness facing their adolescent’s adulthood and an uncertainty about what kind of support their adolescents will need and be able to get. We believe that a personal navigator who can guide and support the whole family through the flow of information and offer hands-on support by, for example, writing applications would be useful for safeguarding parental health. Professionals should also keep in mind that parents who do not have regular contact with support and health care at the moment also may need support. Support should be given based on the needs of the adolescents and the parents, with special consideration given to those with less involvement in habilitation activities. A navigator who guides and supports the whole family can facilitate the process and relieve stress and worry in parents and might make the transition to adulthood more successful for the adolescents.
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ACKNOWLEDGMENTS Special thanks to the parents who participated in the study and to the administrative staff who administered the requests for participation. The authors would like to thank Katarina Lauruschkus, PhD student, for assisting in several of the focus groups. Declaration of interest: The authors report no conflicts of interest. The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors alone are responsible for the content and writing of the article.
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FUNDING Support for the study was provided by Swedish Research Council and the Research Platform for Disability Studies in Habilitation, Region Skane. REFERENCES [1]
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[12] Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24, 105–112. [13] Hamilton, A., Mazzuccelli, T. G., & Sanders, M. R. (2015). Parental and practitioner perspective on raising an adolescent with a disability: A focus group study. Disability and Rehabilitation, 37(18), 1664–1673. doi: 10.3109/09638288.2014.973969. [14] Kingsnorth, S., Gall, C., Beayni, S., & Rigby, P. (2011). Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child: Care, Health and Development 37, 833–840. [15] Kraus de Camargo, O. (2011). Systems of care: Transition from the bio-psycho-social perspective of the International Classification of Functioning, Disability and Heath. Child: Care, Health and Development 37, 792–799. [16] Krueger, R., & Casey, M. A. (2009). Focus groups: A practical guide for applied research (4. [Updated] ed.). Thousand Oaks, CA: Sage Publications, Inc. [17] Kvale, S., & Brinkmann, S. (2009). Interviews: Learning the craft of qualitative research interviewing. Thousand Oaks, CA: Sage Publications, Inc. [18] Lincoln, Y. S., & Guba, E. G. (1985) Naturalistic inquiry. Beverly Hills, CA: Publications, Inc. [19] Magill-Evans, J., Darrah, J., & Galambos, N. (2011). The parenting journey of mothers of young adults with multiple impairments. Journal of Developmental and Physical Disabilities 23, 183–193. [20] Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2012). Indicators of distress in families of children with cerebral palsy. Disability & Rehabilitation 34, 1202–1207. [21] Massoudi, P., Wickberg, B., & Hwang, P. (2011). Fathers’ involvement in Swedish child health care—the role of nurses’ practices and attitudes. Acta Paediatrica 100, 396–401. [22] Murphy, M., Caplin, D., Christian, B., Luther, B., Holobkov, R., & Young, P. (2011). The function of parents and their children with cerebral palsy. The American Academy of Physical Medicine and Rehabilitation 3, 98–104. [23] Palisano, R. J., Rosenbaum, P., Bartlett, D., & Livingston, M. (2007). Gross motor function classification system expanded and revised. CanChild Centre for Childhood Disability Research, McMaster University. Retrieved April 14, 2015, from: http://www.canchild.ca/en/measures/gmfcs expanded revised.asp ¨ och service till visa funktionshindrade [Govern[24] Proposition (1992/93:159). Lag om stod ment bill (1992/93:159) The Swedish Act Concerning Support and Service for Persons with Certain Functional Impairments]. Stockholm: Sveriges Riksdag. Retrieved April 14, 2015, from http://www.riksdagen.se/sv/Dokument-Lagar/Lagar/Svenskforfattningssamling/Lag1993387-om-stod-och-ser sfs-1993-387/ [25] Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., & Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115(6), 626–636. [26] Rehm, R., Fuentes-Affick, E., Fisher, L., & Chesla, C. (2012). Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. Advances in Nursing Sciences 35, 57–72. [27] Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centered service: A conceptual framework and research review. Physical & Occupational Therapy in Pediatrics 18, 1–20. [28] Rosenbaum, P., Paneth, N., Levinton, A., Goldstein, M., & Bax, B. (2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology Supplement 109, 8–14. [29] Sawyer, M., Bittman, M., La Greca, A., Crettenden, A., Borojevic, N., Raghavendra, P., & Russo, R. (2011). Time demands of caring for children with cerebral palsy: What are the implications for maternal health? Developmental Medicine & Child Neurology 53, 338–343. [30] Stewart, D., Freeman, M., & Law, M. (2009). ‘The Best Journey to Adult Life’ for youth with disabilities. An evidence-based model and best practice guidelines for
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transition to adulthood for youth with disabilities. Retrieved April 14, 2015, from http://transitions.canchild.ca/en/OurResearch/bestpractices.asp Whittingham, K., Wee, D., Sanders, M., & Boyd, R. (2013). Sorrow, coping and resiliency of parents of children with cerebral palsy share their experiences. Disability & Rehabilitation 35, 1447–1452. ¨ ˚ Wibeck, V., Dahlgren-Abrandt, M., & Oberg, G. (2007). Learning in focus groups: An analytic dimension for enhancing focus group research. Qualitative Research 7, 249–267. WMA. (2013). WMA declaration of Helsinki-Ethical principles for medical research involving human subjects. Retrieved April 14, 2015 from http://www.wma.net/ en/30publications/10policies/b3/ World Health Organization. (1997). WHOQOL measuring quality of life. Geneva, Switzerland: World Health Organization.
ISSN: 0194-2638 (Print) 1541-3144 (Online) Journal homepage: http://www.tandfonline.com/loi/ipop20
Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood E. Björquist, E. Nordmark & I. Hallström To cite this article: E. Björquist, E. Nordmark & I. Hallström (2015): Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood, Physical & Occupational Therapy In Pediatrics, DOI: 10.3109/01942638.2015.1101041 To link to this article: http://dx.doi.org/10.3109/01942638.2015.1101041
Published online: 07 Dec 2015.
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Date: 12 February 2016, At: 21:30
Physical & Occupational Therapy in Pediatrics, Early Online:1–13, 2015 C 2015 Taylor & Francis Group, LLC ISSN: 1541-3144 print / 1541-3144 online DOI: 10.3109/01942638.2015.1101041
Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood E. Bj¨orquist, E. Nordmark, & I. Hallstr¨om Downloaded by [Gazi University] at 21:30 12 February 2016
Department of Health Sciences, Faculty of Medicine, Lund University, Sweden
ABSTRACT. Aims: Parents are the primary support providers for adolescents with disabilities, their health and wellbeing is therefore of great importance when planning for youths’ transition into adulthood. The aim of this study was to gain a deeper understanding of how parents of adolescents with cerebral palsy (CP) experience their own health and wellbeing and their needs for support during the adolescent’s transition to adulthood. Methods: An inductive qualitative approach was used, including interviews with 15 mothers and fathers to 10 adolescents with CP aged 17–18 years. Latent content analysis was used for analyzing the data. Results: The main theme “Friction blisters chafing and healing during transition” illustrates the parents’ experiences. Five sub-themes formed the parents’ experiences of concerns along with sorrow and stress in life, worries about what was to come, their need for support, strategies for coping, and experiences of cohesion. Conclusions: Knowledge of parents’ experiences of their health, wellbeing, and needs provide valuable information for the planning of transition for adolescents with disabilities. Help with parents’ sorrow, stress, and worry in daily life might be facilitated and parental health safeguarded by a navigator who can both guide and give hands-on support. KEYWORDS. Adolescents, cerebral palsy, health and wellbeing, parents’ experiences, qualitative interviews, transition
INTRODUCTION Transition to adulthood beginning in early adolescence is a challenging period for youth with CP and consequently for their parents.11 Parenting and caring for adolescents with cerebral palsy (CP) who are in transition from childhood to adulthood has an impact on parents’ health and wellbeing and has both negative and positive effects.8 Murphy and colleagues found a strong correlation between the mental health of parents to children with CP and their child’s emotional, psychosocial, and health-related quality of life.22 CP is a lifespan disability which often involves a lifelong commitment for caregivers.25,28 Parents are mostly the primary ¨ Address correspondence to: Elisabet Bjorquist, Department of Health Sciences, Lund University, Faculty of Medicine, Box 157, SE-221 00 Lund, Sweden. E-mail: [email protected] (Received 19 August 2014; accepted 18 August 2015)
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caregivers of adolescents with CP, which is why parental health, as defined by the World Health Organization as a state of complete physical, mental, and social wellbeing, is of great importance.19,34 Dodge and colleagues proposed that wellbeing can be defined as “the balance point between an individual’s resource pool and the challenges faced.”9 Transition to adulthood, described as the planned movement from child-oriented to adult-oriented health-care systems, involves supporting and navigating adolescents, which requires a lot of parents’ energy.1,14 Parents of children with CP who are of school age were found to experience a high level of stress and emotional burden.20 Physical health problems such as headaches, back problems, asthma, and arthritis are reported as direct or indirect effects of stress in parents of children with CP.3 However, another study showed that the child’s level of disability did not influence parents’ health status.6 Sawyer and colleagues found that parents may also suffer from depressive symptoms, which were found to be associated with the time involved in caring and time pressure.29 Parents of children with CP also may experience sorrow several years after the child has been diagnosed.31 Byrne and colleagues showed that male caregivers of children with CP had stronger physical and mental health than female caregivers, but most studies concerning parents of children with CP involve mothers.6,19,29 This is because fathers’ involvement in child health care has been lower than that of mothers in the past.5,21 A literature review showed consistent evidence that family-based habilitation, stress-reducing interventions, and parenting training reduced stress and strengthened parents’ sense of involvement and control.4 Because parents are important for adolescents with CP in transition, they need ongoing and coordinated support.7,14,26 When parents are healthy, they are more capable of supporting their youngsters, which is why parents’ individual experiences of health, wellbeing, and needs are of great importance in the planning of transition programs within support and healthcare settings.27 The aim of this study was therefore to gain a deeper understanding of how parents of adolescents with CP experience their own health and wellbeing, and their needs for support during the adolescent’s transition to adulthood. METHOD Design An inductive qualitative approach, including both focus group interviews and individual interviews, was used.16,17 The interviews were analyzed using qualitative content analyses as recommended by Graneheim and Lundman.12 Procedure An invitation to participate in either focus group or individual interviews, based on their own preferences, was sent out by an administrative assistant at the Child and Youth Habilitation Services to primary caregivers of all 59 adolescents with CP, aged 17–18 years, living in the region of Scania in the southern part of Sweden during the study period. Primary caregivers were defined as people responsible for the decision making for the adolescents. Twenty-four primary caregivers answered, and 15 of them agreed to participate. The first author (EB) contacted them with
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TABLE 1. Characteristics of Parents (N = 15) Country of origin Sweden Outside Europe Marital status Married/cohabitant Single parent Relation to the adolescent Biological parent Adoptive parent Adolescent is living with Both parents Mother Father Alternately with mother/father Level of education High school College/university Employment status Working full-time Working part-time
14 1 12 3 13 2 8 4 — 3 8 7 10 5
further information and agreed on the time and place for the interviews. They were all biological or adoptive parents and are referred to as parents throughout the article. Participants Eight mothers and seven fathers with a mean age of 47 years participated. Parental characteristics are presented in Table 1. The parents’ perceptions of their adolescents’ cognitive levels and gross motor functions are presented in Table 2. Data Collection Four focus group interviews and nine individual interviews were carried out from March 2012 until May 2013. All participating parents were invited to participate twice, and nine parents chose to participate in more than one interview, either in two focus group interviews or in both an individual and a focus group interview. The distribution of participation in the interviews is presented in Table 3. The focus group interviews, consisting of up to seven participants, were moderated by the first author (EB) with an assistant moderator as observer and were performed in a private room at a habilitation center or at a local hospital. The individual interviews were conducted by the first author at places chosen by the parents, for example, in ´ All parents filled in a form that asked them to the participant’s home or at a cafe. TABLE 2. Parental Perceptions of Their Adolescents’ Learning Disabilities and Levels of Gross Motor Functions According to GMFCS—E&R1 Parental perception of their adolescents’ learning disability None/mild/moderate or severe Parental perception of the adolescents’ GMFCS E&R1 level I/II/III/IV/V 1
Gross Motor Function System Expanded and Revised.23
4/7/4 8/3/1/1/2
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TABLE 3. Each Participant’s Participation in Focus Groups and/or Individual Interviews Participant
1
2
3
4
5
6
Focus group interview Individual interviews
II
I I
I
II
I I
I
7
I
8
9
10
11
12
13
14
15
II
II
I I
I
I I
I
I
I
describe background characteristics of themselves and their adolescents. Parental perceptions of their adolescent’s self-initiated gross motor function were classified according to Gross Motor Function Classification System Expanded and Revised (GMFCS–E&R).23 The classification is based on self-initiated movement and has its emphasis on sitting, walking, and wheeled mobility, where level I corresponds to the highest functional level in contrast to level V, which describes children and youth with CP and severe functional limitations. The interviews contained four parts, all related to being a parent to an adolescent with CP in transition into adulthood. The participants were asked to narrate their experiences, and in the focus group interviews, to discuss them with each other. An interview guide was used to ensure that the same topics were covered in all interviews, e.g. parents’ experiences of their own health and wellbeing and parental need of support during their adolescent’s transition to adulthood. To ensure that the participants focused on personal health and not their adolescents, different kinds of stimuli material were used as recommended by Krueger and Casey, and Wibeck et al.16,32 In the first part of the interview, parents were asked to shortly introduce themselves and their adolescent, and to narrate how they experienced their life situation at the moment when their adolescent was to become an adult. In the second part, the parents were asked to narrate their experiences of personal health and wellbeing. To stimulate the parents to narrate, they were offered the choice among different images associated with positive and negative mental as well as physical conditions representing, for example, relaxing, stressful, or painful conditions. During the third part, the moderator gave 2–5 statements with which the participants could agree or disagree by using green or red cards. The parents then elaborated on what they had experienced and in the focus group interviews also discussed within the group. One example of a statement was: “I always sleep well at night.” In the last part of the interview, when participants were asked to describe personal needs of support during their adolescent’s transition to adulthood, they were given a play figure to help them focus on themselves and being a parent in need of support. In the focus groups, the parents were invited to discuss in pairs and afterwards with the focus group. During all interviews, additional follow-up questions such as “Can you tell me more?” or “What do you mean?” were asked if the moderator did not understand or the participants only used a few words in the narratives. Individual interviews lasted between 50 and 90 minutes, and focus group interviews lasted between 90 and 120 minutes. All interviews were audio tape-recorded and transcribed verbatim by the first author. Ethical Considerations The study was carried out in accordance with the Declaration of Helsinki and was approved by the Regional Ethical Board (Reg. no. 2011/350).33 The parents were
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TABLE 4. Example of Analysis Process
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Meaning Units (MU)
Condensed MU
Interpreted MU
Activities within Because it’s difficult You can’t go to so the family to go away we many places so you make the normally do have to do more family ties activities together in activities together strong the family and it at home and that makes the family tightens the family ties strong ties It’s good to My friends are more I’m having a good never be alone than I am time, when I look at alone like because I’ve got X my friends who others can be at home most of the have kids in the time, which feels same age as X, it’s good clear that they’re much more alone than I am. Because I’ve got X at home for most of the time Activities within We enjoy always X has always been the family are having our child with us when we’ve joyful joining us when gone somewhere; we’re going we almost got angry somewhere if X hasn’t wanted to come along
Code
Sub-theme
Strong family ties
Never alone which feels comfortable
A sense of coherence
Activities within the family create a sense of joy
informed of the guaranteed confidentiality and the right to discontinue the interviews at any time, and they all signed written informed consent forms. Data Analysis The analysis was completed step-by-step as recommended by Graneheim and Lundman, and outlined below.12 An example of the analysis process is shown in Table 4. 1. The transcribed interviews were read independently by all three authors to obtain a sense of the whole. 2. Meaning units (MU), defined as a constellation of words or sentences that relate to the central meaning were identified in the interview text by the first author.10 The MUs were then discussed by all three authors. 3. All MUs were condensed and interpreted by the first author, and then discussed with the other authors, in order to assure the underlying meaning. 4. Each MU was labeled with a code according to its topic by the first author. 5. Units with similar meaning were abstracted into sub-themes by all three authors and critically discussed in relation to the transcribed interviews. 6. Finally all three authors read through all the interview texts to ensure that nothing of importance was left out. The theme and subthemes were discussed between the three authors until agreement was reached. The analysis resulted in five sub-themes ending up in one main theme. Representative citations from mothers (M) and fathers (F), focus group interviews (FG),
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and individual interviews (I) are presented in the results to ensure trustworthiness as recommended by Graneheim and Lundman.12 RESULTS The main theme “Friction blisters chafing and healing during transition” is an allegory illustrating the parents’ experiences of personal health, wellbeing, and needs during their adolescent’s transition to adulthood. The blisters arose in their child’s early childhood and continued over the years, and sometimes they healed. Facing their adolescent’s transition to adulthood, the blisters started to chafe again which affected the parents’ health, wellbeing, and needs;
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“I suppose everyone has a weight to carry. I remember someone [in the focus group the other day] called it a friction blister . . . that is how it feels.” (M5.I) The alternately chafing and healing of the friction blisters is described in the sub-themes: “Concern and sorrow”; “Stress and suffering in daily life”; “Worries of what is to come”; “Desire for help”; “Coping and a sense of cohesion.” Concern and Sorrow Parents described, in emotional ways, their experiences involving concerns and sorrow from the first information they received about their child’s condition and continuously over the years. Parents’ own wellbeing was dependent upon their adolescent’s wellbeing. They always had their adolescent’s best interests in mind and were concerned about the ongoing changes during transition which affected the parents and chafed their souls. When their adolescent was excluded from the social community, when no peers called or visited, the parents felt like they had failed. They worried about their adolescent’s reflections in the identity process, and their worry about the future chafed the parents’ emotions. Parents felt sorrow when they thought about what life would have been like for their adolescent had he or she not had a disability. Facing the adolescent’s transition to adulthood also brought to life sorrow and anger from the past as the old blisters began to chafe. Disappointment over lost opportunities to experience things as others might do caused hurt, and memories of encounters with unsympathetic professionals aroused unpleasant emotions. Parents described that the first information about their child’s condition left them in sorrow, a wound that stayed with them for life: “I remember we got really bad news and then it was the worst doctor you can ever get; I will never forget the words he said.” (F4.FG) Stress and Suffering in Daily life Parents described their own health and wellbeing as “stressful,” “challenging to coordinate,” “sometimes hopeless,” and “time consuming.” Coordinating the familylife puzzle during their adolescent’s transition to adulthood was experienced as stressful for the parents. Coordinating work and social life with the needs of adolescents, in combination with new information, affected their health negatively and increased their blisters. Having numerous phone calls to make and appointments to keep in mind was trying. Appointments at school, meetings with support and
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health-care professionals, and retrieving assistive technology, medicine, and other necessary equipment took a lot of the parents’ energy. They spent hours organizing support and planning for transport service for the adolescent, which often functioned poorly, adding to their feelings of hopelessness. The extensive logistics felt exhausting and they felt drained of energy because their schedule was always fully booked:
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“Appointments with one billion people and the Habilitation . . . another meeting and, shit, how on Earth am I going to fit this into my calendar.” (F9.FG) Parents were certain that having a love life was important to their wellbeing, but concerns during the adolescent’s transition affected their marital relationship. Their intimacy was disturbed by having “nearly adults” at home most of the time. Having personal assistants around meant less spontaneity as far as love life was concerned, and one parent had experienced being interrupted while having sex by an assistant who walked into the house unannounced. Parents felt it was hard to get time for each other, and they were often forced to take turns having their own recreational activities. Worries of What Is to Come Parents expressed a worry for their adolescent’s future life. They thought the information and support from the healthcare system lacked important parts, was irrelevant or confusing, and sometimes too much. Despite having dealt with their adolescent’s concerns for many years, parents experienced that the support and service system was confusing. Parents of adolescents with mild disabilities had not had regular contact with support and healthcare professionals, and were not particularly familiar with the support system. Parents felt unsure of what would happen when the adolescents left the child support and healthcare systems. Even after attending information meetings about the adolescent’s transition to adulthood, they were confused. In the flood of information, they had difficulties sorting out what was relevant to their adolescent. Not knowing what kind of support their adolescent would need or where they were supposed to get help in the future made them feel a lack of readiness. They worried about how their adolescent would manage a future life as an adult, which wore on their own wellbeing: “Oh God, what’ll happen when I’m not there anymore?!” (M10.FG) Parents also worried about the near future, about how to handle the situation when the adolescent turned 18 and needed a trustee, which felt stressful: “Now the panic begins again. It’s only a month left and I’ve got no track of it . . . who should I talk to? I have to fill out the forms, but I need a medical certificate . . . and a social investigation . . . I didn’t think of that when I took the form. ‘A social investigation,’ shit, shit, shit, how do I get one of those?” (M12.I) Desire for Help Parents described how they desired support would be like, involving support for both their adolescent and to themselves. Parents experienced needs for professional, individualized support and information to increase awareness of how they
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could support their adolescent in his or her transition. They desired a contact person to act as a personal coordinator who could ease their burden and heal their blisters. This coordinator should be skilled and have good knowledge of the unique family. The coordinator’s task would be to support both the parents and the adolescent to identify appropriate information, and at the time they needed it. The coordinator could help to find out if and when to apply for different kinds of things for example, for a trustee, for post-secondary education, or for proper living arrangements, and also to make the applications hands-on for them. One parent expressed it as
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“like someone who comes home and gets to know the family and who takes care of things. ‘Now, you can sign, I can complete this . . . we have to apply for . . . blah, blah, blah.’ Don’t inform us about anything that we don’t need, just inform us about things we really need.” (M8.FG) Coping and a Sense of Cohesion Parents described several positive aspects of being a parent of an adolescent with disability and their own strategies to handle everyday life. To handle the stress in their daily lives and to ease their chafing, parents used strategies for coping. Mothers and fathers took turns at being at work or participating in meetings for parents and being at home. They had found a way to handle everyday life. When the adolescent was at school they had their own time and used it to heal their wounds and do health-promoting activities for themselves. If the youth had personal assistance, the parents left home from time to time to cherish their social and partner relationships. Living together or not, parents worked hard at getting along well and being able to handle the parenting together. This gave them a sense of confidence as they knew that the other parent also had the competence to take care of the adolescent. Being a parent of an adolescent with a disability and being needed gave a sense of cohesion to the parents’ life. The family ties were strong and the family was run like a company. Caring for an adolescent in transition concerned the whole family. It was nice to have the company of their adolescent at most weekend evenings, which they knew that other parents of adolescents rarely had. Doing things together with family members and empathetic relatives was convenient and healed their blisters. Participation in activities with other families in disability organizations gave them a sense of community and led to useful hints about information and support in their adolescent’s transition; “In this association you have other parents to talk to who have youngsters who are even older and who’ve been through this, so I have pretty good support.” (F15.I) DISCUSSION Qualitative interviews enabled parents to express their own experiences of subjective health, wellbeing, and needs. As parents usually have their children’s concerns in mind, the use of stimuli material as recommended by Wibeck and colleagues helped the parents to focus on themselves.32 As parents could choose to be
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interviewed individually and/or in focus groups, it was possible for the parents to participate on terms that suited them. Trustworthiness in qualitative studies is ensured by the concepts credibility, dependability and transferability.12,18 Parents in the present study represented both mothers and fathers to boys and girls with different cognitive levels and with different levels of gross motor functions, which ensured credibility. The use of both individual and focus group interviews where parents could participate twice resulted in a rich amount of narrative data. By narrating, the parents had the freedom to decide what to express, either positive or negative experiences, which strengthens the credibility of the study. The analysis process was made through in-depth discussions and reflections by three authors with different backgrounds which further ensure the credibility of the study. Almost half of the participants were fathers, which means that our results represent both maternal and paternal perspectives of health, wellbeing, and needs. This is a strength as research focusing on paternal caregiving is lacking.6 The research process, including the invitation to participate, the analysis process, and the results, with representative citations, have been clearly described to increase the dependability and trustworthiness. The results cannot be generalized, but the wide representation of participants might imply that the results are transferable to parents in similar contexts. The parents described their health and wellbeing in terms of mental health and wellbeing which might imply that mental health was more relevant for them than physical conditions. This is noteworthy in the light of other studies showing physical health problems in parents of adolescents with CP.3 In the present study, this might be understood by the access to assistive technology services and legal rights to personal assistance in accordance with Swedish legislation, for example, the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS).24 The parents expressed strong feelings of sorrow, however, and felt that this affected their health and wellbeing. Parents of children with disabilities often experience negative emotions after being informed about their child’s diagnosis, which results in varying effects on their health and wellbeing.2 Parents in this study discussed emotional memories of negative events experienced recently or years ago which might reflect sorrow over lost opportunities and unhealed grief brought to life in their adolescent’s transition process. This is consistent with the findings by Wittingham and colleagues, who also describe that parents of children with CP often carry a life-long sorrow.31 Furthermore, Hamilton and colleagues describe feelings of grief in parents involving that the changes in life associated with their adolescent’s transitions might activate emotions from the past.13 It was obvious that practical challenges in everyday life affected the parents’ health in the present study. The stress of handling logistics for many years, in addition to the care and support of their adolescent’s needs during their transition to adulthood, was described as affecting the parents’ health and wellbeing negatively. This was also found in the results from a Canadian study by Majnemer and colleagues showing a high stress level in parents of school-aged children.20 The stressful period might explain why many of the invited parents in the present study did not answer or chose to not participate. The parents expressed a need for more individualized support, in order to lessen the burden while supporting their
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adolescents in transition. They needed someone who could help them to coordinate the information and even give hands-on assistance in making applications, believing this would ease the burdens and safeguard their own health. These results are in line with other studies, from different countries, suggesting that a personal contact that ensures individualized support for the whole family in the adolescent’s transition is recommendable. For example, Kraus de Camargo suggests that the use of key workers can facilitate coordination between different systems of care.15 The CanChild Centre for Childhood Disability Research in Canada suggests a navigator who can be, among other things, a mentor, facilitator, planner, and provider of information for parents during the adolescent’s transition to adulthood.30 Familycentered habilitation based on Family-Centered Service (FCS)27 involves taking into account parents’ resources and capabilities. Results from the present study show that supporting adolescents in transition is challenging for any parent and we suggest that FCS in the habilitation services includes the provision of a navigator for parents and the adolescents during their transition to adulthood.
LIMITATIONS Most parents were born in Sweden, which makes the results less transferable to parents with backgrounds other than Swedish. Combining individual and focus groups interviews involves a risk for different kinds of data. However, the combination used in this study had practical and ethical implications as it opened up for all interested parents to participate on terms that suited them.
CONCLUSION AND IMPLICATIONS FOR PRACTICE Being a parent of an adolescent with CP in transition means living in a time of change, when feelings of sorrow and anger that spring from the first grief of becoming a parent of a disabled child rise up. This must be kept in mind by professionals in clinical practice. Moreover, the transition involves challenges and a search for new information, which can be stressful for parents when added to the stress of dealing with all the logistics during the previous years. Parents may experience a lack of readiness facing their adolescent’s adulthood and an uncertainty about what kind of support their adolescents will need and be able to get. We believe that a personal navigator who can guide and support the whole family through the flow of information and offer hands-on support by, for example, writing applications would be useful for safeguarding parental health. Professionals should also keep in mind that parents who do not have regular contact with support and health care at the moment also may need support. Support should be given based on the needs of the adolescents and the parents, with special consideration given to those with less involvement in habilitation activities. A navigator who guides and supports the whole family can facilitate the process and relieve stress and worry in parents and might make the transition to adulthood more successful for the adolescents.
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ACKNOWLEDGMENTS Special thanks to the parents who participated in the study and to the administrative staff who administered the requests for participation. The authors would like to thank Katarina Lauruschkus, PhD student, for assisting in several of the focus groups. Declaration of interest: The authors report no conflicts of interest. The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors alone are responsible for the content and writing of the article.
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FUNDING Support for the study was provided by Swedish Research Council and the Research Platform for Disability Studies in Habilitation, Region Skane. REFERENCES [1]
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